Life with Ben

Conversations From Back There

2011-12-21T23:04:00.000-05:00

Like a lot of parents, I spend a good deal of time between here and there with my kids "back there". That no-mans-land in the car that is both with you, and completely separate. That place where they can be dreamy little movie watching zombies or screeching, seat kicking, fighting, monsters. It can be a place of constant kid chatter too, depending on how much you want to hear and how much they think you are listening. Mine assume I am listening almost all of the time (which I am not) so they chatter in my general direction at a pace that you would think defies breathing. Now, I my not be listening in the best sense of the word (because frankly my ears hit an overload limit), but I am in fact listening. I have a very keen sense of when to reactivate the more active part of my listening, that is revert from filter mode to mom mode and really pay attention, and its a damn good thing. If I didn't, how else would I know when to say "dahhhhhh.....???"
Like when Kiera reports that a boy in her room told a little girl that he was going to marry her and Kiera objected that no, he couldn't because she was going to marry! My ears caught that one because I was very interesting in who of the two she was saying she was going to marry! For cripes sake that boy is a beast! So she clarified that she was defending that she had dibs on her little girl friend (what a relief, really that boy is a nut!).
Ben tells Kiera, "girls can't marry girls."
To which Kiera replies, "well of course they can Ben," with a shake of her head.
Ben tells Kiera, "no, girls marry boys and boys marry girls. Girls marring girls isn't allowed."
Kiera tells Ben, "Ben, that just doesn't make any sense at all. When people grow up and they are in love they marry."
To which Ben replies, "I don't think that's legal Kiera."
Kiera asks, "Mom, is Ben right? Girls can marry right?"
At which point I notice that our favorite Christmas song is on and thank everything shiny that my kids are still young enough that they can be easily guided into loud car singing rather than continuing this conversation with a big fat dahhhhhhh????? from mom. It's not that I don't have an answer, oh I have so many answers for this one, it's just that I don't want to give you one just yet. You don't think there is anything wrong with two boys or two girls holding hands right now and I don't need to give you the burden of anyones bullshit that might be tied inadvertently to any bit of my answer. Be a child for just a minute longer OK?
Songs over, wait what? Did you just say lets play the pretend we're smoking game? Dahhhhhh?????

Crab Lucky Crab

2011-12-19T03:01:00.000-05:00

Almost exactly eleven years ago I had a human arm (not mine) in my body, through a tiny opening in my neck. This fantastic woman (who's are it was) was removing my cancerous thyroid, several lymph nodes, and exploring every inch of what she could reach from my ears to my armpits. You should see my scar, or not see it really, it's a dream come true. How this woman did the work she did and left my neck with a barely visible white line I will never know, but I will always remember her name with a level of awe and appreciation. She put in one long interior stitch that she pulled out a week later, my head didn't fall off, and she left me cancer free. Truly amazing. The result of having no thyroid and my kind of cancer is that you take thyroid replacement and enough of it that your pesky body doesn't try and regrow cancer growing thyroid cells. Tada! Hyperthyroidism! Side effects include- irritability, stress, increased appetite, insomnia. (Notice I've left out weight loss, I don't have trouble with that side effect)
Now I also have another pain in the ass issue that hasn't been much of an issue until this year, and that is a seizure disorder. The number one cause of break through seizures is lack of sleep. Some other high up causes are not taking you medication, stress, and not eating correctly. The side effects of the medications that I take for this are- irritability, anxiety, lack of taste sensation, insomnia, anger and stupidity. I'm not kidding. They don't actually use those words on the websites but the words most affectionately associated with my meds are "rage" and "dope".
None of these fancy aspects of my life let you sleep which is why I am up right now bitching to the wide sleeping space of the web. So here I am with my interesting problem, I'm hungry but food doesn't seem as appealing as it once was, which adds to the irritability because I'm freaking hungry and I can't get to sleep which stresses the crabby mom even more and the circle continues because I am still hungry and by goodness I am so bloody tired and the kids are going to be up in 4 1/2 hours and what I wouldn't give for a bag of gummy bears and I am just so tired and tired of being a crab and tired and tired of be stressed about being tired, when oh when does this merry go round stop?

And how fucking lucky am I that eleven years later, I am waking up cancer free to look at my beautiful children. One of the luckiest women in the world.

2011-12-07T16:33:00.001-05:00

We joke a lot about Kiera's future. Girl can talk a stranger out of their savings without their noticing AND she works a pole like I have only seen in the movies. It's not hard to joke about the myriad of professions my strong willed (and legged) little blondie might get herself into. She'll be OK, with some (OK a ton) of guidance, she'll be OK. I was OK. A different kind of OK then I was after I met Dave, but still OK.
You see, Dave had his shit together when he met me. I didn't even know what that meant. I had gone to college with a good GPA and scholarships but the discovery of a seizure disorder and my dads ALS blew that all to hell so I failed (or tried) myself out and came home. Got a job I loved that didn't pay for shit, and did my best to keep my head above water while I literally got my affairs in order. The benefit of having friends who had suffered tragically similar loss is that they tell you how to do it as well as you can, so that is what I did. I adjusted to new meds, learned how to pay my own bills, and watched my dad die. I can say looking back that I think I did it right, I said everything I needed to say and did the best I could for him, so who cares if I never learned how to return a movie on time. The point is, the important stuff, the stuff that really mattered, got done. I was OK. Broke, a bit reckless, but OK. Kiera will be OK. She is a little version of me with hopefully enough of Dave mixed in that she wont trash her credit rating by the time she is 19.
We don't joke about Ben's future. It is no joke. We don't even talk about it too much. Those are serious conversations, set aside for serious times. Where is the money going, who will have responsibility, who can best manage if we are unable. Like I said, serious conversations. Part of the reason is that we simply don't know what we are dealing with. We have no idea where his life will lead him and we never have. How do you plan ahead for a child when the doctors say he will never hold his head up, then he does. You plan, but with every plan you make contingency plans. So, he has a college savings account but it is the kind that can be withdrawn and used for things other than college because WHO KNOWS. He has never performed below grade level academically, but he's in third grade.
I have been playing catch up with school for years now because it turns out, when you drop out and go back 17 years later in a totally different field, you pretty much start over. I went in to campus today and watched a kid walk in ahead of me with a gait that looks all too familiar to me because I see it every day, and I started to think about how many times I see this gait around my little community college. Then I saw it again. Walking into a different building, another kid who in 10 years could be my kid. Who knows. By the time I made it to the computer commons I was deep in mind fuck (where I try to steer clear) wondering about these guys I'd just seen. Who are they? What are their issues? Where do they live? When I had a seat next to an older gentleman who, guess what, had something going on. It's like the day in the grocery store when they want you to buy comfort food so they play every sad song, today was the day that I had some thinking to do I guess. This fellow held one arm at a distinctive angle, had the hand of that arm folded in a familiar way, had a thinner leg, had one ankle bent in Ben fashion, but corrected all of these positioning issues to make use of the computer and pull around his used physics book. I did my work and busted ass to my car where I burst into tears. Not because there a damn thing wrong with the man sitting next to me, but because I just didn't know if that man had anyone who loved him. I cried the whole way home wondering if he was happy. If he was OK. He looked to be in his 60's but was he, or is that how life had treated him? Is he OK? Will Ben be OK? I believe with every bit of me that we can move forward in a direction where he will be OK, just like Kiera will be OK. But it is the variables, the player that we can't see on the other side of the chess board that keeps us from joking about his future.
Tears are dry, we are still thinking three moves ahead, we'll be OK.
All of us.

"What do you want?"

2011-12-05T11:17:00.001-05:00

"So what so you want?"
I would like a large order of deck that is not rotting off the back of the house, ready to fall off at any moment...a roof that isn't leaking directly into the main bathroom AGAIN since we just replace the entire roof a few years ago...hmmm...a furnace that doesn't miss fire and run endlessly without heating...and a side of non-dripping kitchen faucet. Oh, and can you add door knobs for the front and back door that actually have working mechanisms so we can use them instead of relying only on the dead bolts? For dessert I would like a ramp and hand rails on the front porch and an adapted bath. Thanks.
Dave was actually wondering what I wanted for dinner.
"I know," he says.
We got Chinese.
Every one of these things are on "the list", not the little can be tackled today list but the BIG list. This list has to wait, for what, I'm not sure. For a windfall. For us to finish paying off old debt to make new debt. For me to finish school to get a job. For me to find some spring of inner motivation that drives me to refurbish and...We'll let that thought lie. I'm not a carpenter so even given proper motivation, I'm not going to build a deck. Motivation could take me a long way though and I have been doing some searching for what it is going to take to get it back. Where did it go for that matter?
If the question was properly worded (where did mom's energy go?) my kids might tell you it was sucked out of me. They have heard me say it feels just like that when they are forgetting to love each other. That is exactly what it feels like when my little family, which is so "normal" in so many ways is just not "normal" in any way. I get it, parenting is hard. There are no instruction manuals blah blah blah but there is no place for those of us who don't fit to carve out a niche and get comfy. There is no down time to get your bearings and fix your brain so you can deal with things like door knobs. How can you explain to anyone that Ben's day yesterday was so exceptionally exhausting. How many times I was right there molding the day to make it manageable for him and us because I knew he was so excited that it was his dad's birthday. The amount of effort that it takes to make our world feel effortless is crazy. Maybe that's where my motivation went.
Every now and then Dave and I have a conversation that takes one of two turns. The first is when Ben has had a particularly hard time around other kids and Dave is reminded that Ben isn't a typical third grader. The second is when Dave completely forgets that Ben is anything but just another regular old kid. Both conversations kind of break my heart. I think we have these conversations because Ben has different levels of interaction. Dave sees snippets of the day so sees different sides of Ben. I however, sit more square in the center. Seems like a more balanced place to be, but that's just it, its a balancing act always. I guess that's what we all do really. It is this crazy balance between need (you do not actually need working door knobs and the deck hasn't fallen off yet) and creating a warm loving home for our whole family (water dripping on Kiera's head in the bathroom doesn't count). It is so crazy important that Ben get what he needs to thrive in this brutal world that he has been thrust into but he has this wonderful, brilliant, strong, opinionated little sister who needs him to show her the way through it as well.
Back to motivation...Haven't gotten very far on that one, but I have begun my effort to reduce brain clutter. You're looking at it. My mom used to tell me to go clean my room. If I think of my room as this crazy thing that has turned into my life, I guess I better get started.

Yawn...

2011-11-30T18:28:00.001-05:00

Warning: for the possibly one person who has checked back now and again to see if we have fallen off the grid (we have not), this blog may be coming back to life. It may be awakening a different beast than it went to sleep though. For instance, this beast says fuck a lot more so if you're not comfortable with that you may need to cover your eyes from time to time. You see, I am not the mama of a struggling baby boy with CP, or the mama of a special needs son and a new baby girl trying to do it all with glitter on top anymore. I'm the mom that has tasted the agony of new moms crying on my shoulder because that used to be me. Fact is, that old me who was so terrified, learned so much that now I get to pass it on. Fact also is, I am no more comfortable with the road ahead of me right now than I was with the road ahead of me seven, six, or five years ago. But I'm harder. I'm tougher to sway. I know what I am fighting for and I will fight for what really matters for as long as it takes. I also know that what really matters is not all that I thought it is to be.
So while this place is still Life with Ben, it could be called Neither Rhyme Nor Reason, or There Are No Rules, or There Is No Such Thing As Fair, or We're Just Making It Up. It's not all about Ben, or Kiera, or Dave, or even me. As the writer, a good deal of it is about how I feel about all four of us though. This is about how we have evolved into this extraordinary thing. This family that yells, and plays, and loves so much. Goodness we are a disaster. A mess of a perfect disaster and right in the middle is me, the grand master of of this mess (it's OK, Dave would want to claim the non-mess part). I, my dear am a mess. Not the mess I anticipated either. I thought that I would be the kind of mess that was covered in paint, not the kind of mess that didn't have her shit together at age 38. It seems utterly impossible that I am 38 and things refuse to settle down enough to catch hold of. And for the cherry on top, I have had two seizures (totally my fault-meds don't work if you don't take them) in the last year. My health being at risk puts a pretty huge crimp in the already crimped family health dynamic. The last one was a bit dramatic and has prompted a four month long med change. Med changes are no good for anyone, least of all me.
So here we are, Ben is going to be nine. Nine years old, and Kiera will be six and it has slipped past in a dizzying array of appointments and therapies and classes and play time. It is truly no wonder we walk around looking dazed, its is whiplash. Whiplash with a heartbeat.

Being The Grown Up

2011-03-28T23:09:00.000-04:00

It goes in waves. Parenting is not a simple cycle of learn, apply, succeed. More like maybe learn, trying to learn, ah ha! got it, wait maybe not, oh OK think I've got it now, attempt to apply learned information, forcefully try to apply said information, back up re-learn, subtly adjust to insert information, see things respond to use of gained knowledge, take half a breath then WHAM the lesson is over and we are on to another subject. It's like living through calculus just to find that the test Friday is actually on art history.

So we try. And try again. And keep trying but to be perfectly honest, sometimes I don't want to try. Sometimes I wish I wasn't the grown up and didn't feel the immense pressure to instill a love of self, others, learning and food all the time. Every day, all the time. It is simply exhausting. Rewarding (you hope), but exhausting.

It’s on those days when it doesn't feel all that rewarding that you dig deep and pull rabbit out of the hat to make the moment the best it can be or you dig a nice deep hole under your own feet. We happened to be going through one of those floundering phases and our hole was getting rather deep. The giant hole seemed to act as its own accelerator and it took both hubby and I, stopping at the very same time to figure out that we were the ones digging it. That we are, whether we like it that day or not, the grownups.

It was the wakeup call we needed (this time) that the subject had changed and we were in fact trying to speak Spanish to pass chem.

We're changing the game (again) and finding yet another new normal. Because we're the grownups and they are SO worth it.

What?

2011-03-23T21:40:00.000-04:00

Make pinewood derby cars. Volunteer meeting. Preschool. Physical therapy evaluation. Dance class. Cub scouts. Derby race. Touch base with mom about coming to cover conference time. Parent teacher conference. Ben to primary (pink eye). Go to Auntie Kier's for afternoon. Kindergarten Information Night. Preschool. Ben to Peds Orthopedic Surgery (subluxed hip/stable!). Ben IEP. Shan haircut. Ben PT. Play date for Kiera. Ben hippo therapy. Shan class. Assist for Kiera's preschool. Dave's work happy hour. Soccer clinic. Art class. Maple syrup nature program. Kids to Nana's. Wedding/reception. Play date for Ben and Kiera.

What?
Why, what does your week look like?
; )

What to do?

2010-12-08T23:13:00.002-05:00

Or rather what not to do! This is such a busy time of year, no scratch that! Life just keeps getting busier. At the beginning of the school year Ben joined Cub Scouts. I was a Girl Scout so when the flyer came home last year I mentioned it to Dave and we did the classic chat-and-delay. For those of you who are not familiar with this tactic it is our default setting when we are unsure if we are willing to cross another "new thing" barrier. I'm sure that someday, someone will come up with a super scientific formula for deciding on "new thing". This formula will no doubt include; monetary cost, time factoring (including travel), pre-"new-thing" research (including receptiveness/supportiveness of new adults and children to special needs), emotional expense to parent responsible for doing the pre-research, emotional/physical expense to parent actually taking on "new-thing", increased alcohol bill due to "new-thing" stress, measure of effect on "well he gets to (blank)..." argument from sibling paying attention to the balance of "things", the overall accessibility of "new-thing" and the ability of "new-thing" to fit into the already crazy week. BUT until they come up with that super scientific formula, it is sometimes easier to chat-and-delay and if it comes up again, we pay it closer attention. So a year after we saw the flyer, Ben joined Cub Scouts. He LOVES it! I'm not sure why, but he really loves it and so far his Den has been fantastic to him and us. This addition to our schedule has Dave and I doing the divide and conquer so that Ben can make it to Scouts and Kiera to ballet. Toss in two nights of Therapeutic Riding, a night class for me, homework for all of us and we're booked. In the last week we added an overnight visit from Uncle Keith, a Hoedown at Ben's school, Dave's Birthday, kid's overnight with Nana, Christmas lights, 2 teacher birthdays, volunteering at both kid's schools, book order coming in (my co-op job), 2 evening Holiday parties, a field trip, a volunteer meeting, a school project for Ben, a research paper for me, zumba class and we haven't even made it to the weekend! We're busy. And now we need to make plans for next semester. What to choose? Add another class for me (goodness knows I'll graduate in time to retire at this rate)? Add a swim class for my human rocks? Take away a riding night? Drop yet another volunteer group? Add some exercise for me? Breathe? Have a conversation with my husband? What do you choose? How do you choose? How lucky are we that we get to choose?

Finding A Grove

2010-11-04T17:17:00.003-04:00

Well, it is November and it seems that we have found our grove. We can make it to 2 extras a week (ballet and Cub Scouts), 2 therapies a week (both therapeutic riding), two classes for mom and get all of our homework done! AND we are all wearing clean underpants! It took us a couple of months but we seem to be getting the hang of the school year. Now, if only everyone else could get with our grove, that would be great. It happens all the time, I begin to feel like I'm getting it and then someone comes along who doesn't get it. It is frustrating, to say the least. Yep, I know that Ben spends part of his day looking as if he has checked out of his body. And by the way, so did you. I really don't need you to tell me how frustrating it is that Ben's body language is screaming, ignoring you! I know. I'm the mom. It's been driving me nuts here for, let's see, SEVEN AND A HALF YEARS! Remember when we had that meeting with everyone and we talked about how mentally exhausting it is for Ben to just sit and breath, let alone process and retain info? Well, this is where you apply that information. Remember that part of the paperwork that stipulates allowing Ben repeat instructions and increased processing time. Now is the time to re-read that part. Did he know the answer? Has he replied incorrectly on any question you have asked him? Well then, he is listening, even if you don't like how he goes about it. I know that I should just let it roll off my back. I should remember that if he wasn't such a bright little guy who constantly resets the expectation of others, people wouldn't care if he looks like he has left the building. Just remember folks, he hasn't left the building. He hears you, that means everything you say. He has a harder job than you and he may even be smarter than you. Goodness knows, he is probably smarter than me. And by all means, get with our grove. Cause we rock!

Been A While

2010-10-20T01:39:00.004-04:00

So...

It's been a while. A long while.

Like so many things in my life, blogging has been pushed aside. It may have been the easiest to let go even. No one (well a couple folks but you know) dumping undo guilt or disappointment at the lack of posts. No stern reminders that my work is late. No GPA slipping into the red. You know what? No glaring stains pop up on the carpet if you don't blog. It was easy to step back when I realized that I had come to a point that my blogging wasn't doing me, or anyone else for that matter, any good. I actually got tired of bitching in print. So I stepped away and turns out, I still bitch, but to people that I can touch. Seems that bitching may be where I am in my life, or it could be the Keppra but that is a whole other ball of wax.

We had such a fantastic summer...

We went to Illinois for the high school graduation of our niece and college graduation of our nephew.

Ben and Kiera got their first ice cream from an ice cream truck.

We said goodbye to Ben's fantastic teacher of two years.

We went strawberry picking.

We saw my niece graduate from Middle School.

We camped on Lake Michigan.

We played in the parks.

We rode bikes. Kiera learned to ride without training wheels (thank you PEAC).

We spent the 4th in Tennessee with Dave's family

We went to Red River Gorge and Ben hiked the trail to Natural Bridge. He hiked it.

We visited The Big House.

We played with our neighbors.

We pub crawled (OK, that we just me).

We went to a beer fest (OK, that was me and a few much loved grownups).

We camped again.

We swam with the neighbors.

We celebrated two weddings.

We went to a cheeseburger fest and camped again.

Ben went to camp.

We camped on Lake Huron.

We went to Children's Museums.

We went to Zoo's.

Ben rode horses. Lots of horses.

We started school. Kiera left my side for the first time.

Dave and I went to Key West.

Ben joined cub scouts.

Kiera went back to ballet.

We camped again.

Ben climbed trees

We went to Wisconsin.

We went to orchards, pumpkin patches and corn mazes.

The most important part of all this rambling is "we". We found amazing, fun and wonderful things to do WITH amazing, fun and wonderful people. These people in our lives, these wonderful, thoughtful, fun and funky people that are our family and friends are part of the glue that makes us work.

I miss this though. I miss knowing what is happening with your families and I miss having the record and outlet that this provides. I miss being able to say "Ben's school environment sucks! I wish I had the cash to bury the district in lawyers until they actually did what is right for children with different needs! Who makes a freaking NEW playground inaccessible and takes away handicapped parking!" because you just can't say that stuff on facebook :)

I guess we'll just see how it goes.

sigh...

2010-07-21T03:38:00.003-04:00

so much to tell, so little time...

if only I could blog from my phone...

(HINT,HINT)

February

2010-02-19T09:17:00.004-05:00

Ewww! What a funky time of year it is for me. There are things missing from this time of year for me and things that are being accomplished as well. It seems that I am simply not as good at covering my bases during the winter. For example; I can get the ball rolling on improving Ben's current school situation BUT can't plan swim lessons at the same time or I can initiate cool activities BUT can't remember to take pictures to capture the evens or I can talk on Ben's behalf BUT can't keep up with my friends. The list may or may not be longer (I don't know because I keep losing it :)) but it sure seems to require singular focus. Is multitasking easier for me when the sun is shining or is my winter list just that much more complex? Don't know, but it was 39 degrees yesterday, so I have hope! Some cool things: Ben and I sat down with the Kindergartners at his school and talked to them about CP. We were invited to do so when it became clear that a number of children thought that Ben had broken legs that were not being fixed. ("Mom, can we just bring in an x-ray machine and then fix Ben's legs for him?") I read a letter to the groups, then Ben fielded questions. It was pretty cool to hear the questions they had (How old were you when your brain got hurt?, Will CP get worse for you?, Can you run without your walker?, Does it hurt?, What do you like to play outside?, Can you play tag with me?) and even more cool to hear how Ben answered these questions. After the first group Ben said "Thanks so much for coming mom. I did it!" Yay! Another cool thing is that I was able to meet with some folks at school (speech path, social worker, psychologist and teacher) to talk about the teasing and unhealthy interactions that are happening in and out of school with school kids. Good news is that I have been there a lot lately (happy side effect of my work hours feeling the financial crisis) and shared my observations with folks so they came to the meeting with some observations of there own. We all agree that the dynamic in the room needs a boost so we are working together on a school wide positive school program that will address these issues AND they are bringing folks into the room for large and small group activities to work on a positive environment for everyone. You can already feel the attitude shift. Fantastic! (I am leaving out a really ugly side of this 'cause it is not meant to be that kind of post :)) Among the greater things to come out of the hubbub with school building move (we are moving, it is not good), is that I have connected with a mom who is fighting for her little guy too. We are dealing with some different issues but we have each others back on the issues and she is not afraid to squeak, as loud as she needs to and she is all about squeaking for both of our boys. Nice to have her next to me when the pressure is on. There are all sorts of good things that are happening that have nothing to do with changing school climate but that will have to wait for another post. I will leave you with the letter that we read to the children (not sure how this hasn't made it here yet). This letter was passed to me (with some modification of course) from a CP mom who got it from a CP mom who...you get the picture. The child that this "Kindergarten letter" originated from is in high school now. If you can use it, please do. Hi! I’m Ben **** and so far I’m really enjoying being in Mr. ******* Kindergarten/First Grade class with you. Sometimes when I first meet people they wonder why I use a walker to get around, so I wanted to see if I could answer some questions that you or your parents might have. I’m a kid living with cerebral palsy, or “CP” for short. I was born with cerebral palsy. When I was born part of my brain got hurt. The part that was hurt is connected to my muscles. So the muscles in my legs and arms don’t get the right messages or get mixed-up messages and it makes it hard for me to control my muscles the way that you can when you walk and play. CP isn’t a disease. I’m not sick, and you can’t catch CP from playing with me or being my friend. CP is something that “happened” to me when I was born. I hope that you’ll feel comfortable asking me or my parents questions if you have them. Here are some things that kids have asked before: Will you always have CP? Right now, there isn’t a cure for cerebral palsy. This means my doctors and nurses can’t “make it go away”. But my whole family, together with my doctors, nurses, physical and occupational therapists help me to learn as much as I can to manage it. I’m learning how to control my muscles better and better every day. What does a physical and occupational therapist do? A physical therapist helps me to use my muscles better. They help me do exercises to make my muscles get stronger. The physical therapist I see at school is named Mrs. *****. I also see Ms. ******, an occupational therapist, who helps me learn to use the muscles in my arms and hands. I feel really lucky to have them help me! What else do you use to help you? You’ve probably noticed my foot braces. They help keep my feet in a good position for walking and moving. My walker helps me to get from place to place when I have far to walk. Sometimes I even use crutches. Sometimes I use special devices to help me do things, like different scissors or a chair during circle time. People help me sometimes, too. Mrs. ****** helps me a lot. Everyone is learning really fast when I need help and when I can do things myself. I really appreciate it when people help me, but sometimes it’s frustrating when people do things for me that I know how to do myself. Usually I just ask when I need help. Do you want to be treated any differently because you live with CP? No! If you’ll just try to be patient and understanding with me, that will be great. Living with cerebral palsy is really just a very small part of who I am. On the inside, I’m a lot like everyone else. Thanks for taking some time to learn about CP! Your friend, Ben

Where My Time Goes...

2010-01-31T19:44:00.003-05:00

When I should be focusing on Birthday's, preschool choices and spring sports, I am instead touring the building that Ben's school is proposed to move to. I was a lucky one, I actually got a tour and with the Director of Special Ed and the current principal no less. I even had a moment to chat with our Superintendent. This is the letter I just sent to our Board of Ed.-

I am writing to you today as a mother. Specifically, Ben's mom. Ben is a little guy that you probably have not met, but can’t miss in the halls of (our school). He is the one tearing through the halls with his walker, flashing wheels and all.

Ben has Cerebral Palsy (CP) resulting from a significant brain injury some time around his birth. He has low muscle tone, impaired balance and impaired coordination. Ben uses his walker for long walks through the school and any other time that he is fatigued (which happens often to children with CP).

Children living with CP work on a different schedule than their peers. In Ben’s case, it takes months to gain stamina, learn and maintain motor patterns and recover from muscle fatigue. This is just one of the reasons that I am concerned with the move of the Multi-Age Program to a multi-floor building. Walking distance is not the same as stair distance when is comes to physical endurance. I have heard comments like “children adapt”, “he is a strong kid” and “he is so determined”. This is all true. What is difficult for people who don’t live with a person with CP to understand, is while this may be a transition that takes a few weeks for the majority of the transferring students, this will take months for Ben. Months in which he will have to concentrate his energy on his mobility instead of second grade. Months in which he will stand out from his peers because he can not keep up due to waiting for an elevator, struggling with stairs or simply because the walk is so far he is exhausted.

It was suggested to me (I truly believe with no ill intent) that children that needed to utilize the elevators in the past have loved the novelty, have felt special because they had a key and loved that they got to leave class early to transition in time. These children referred to were dealing with a temporary situation (broken leg was an example). This is Ben’s situation for the rest of his life. If there is one thing Ben is aware of, it is that no matter how much he wants it to, his body doesn’t work like everyone else’s. Ben is in first grade and he knows that he is missing things in his class because he has to leave three minutes early currently. What happens when he has to leave twelve minutes early to get to music at (the proposed school)? It was suggested to me that possibly a more direct route to music would be to take the elevator or stairs to the first floor, walk through the first floor then WALK OUTSIDE, AROUND THE SENIOR CENTER, INTO THE BUSINESS OFFICE to the elevator closer to the music room. Shame on you for suggesting that my seven year old take his walker outside in the middle of winter to better access a class. When I expressed my concern about feeling the need to choose between this fabulous program that allows for his strengths and weaknesses and his physical well being, I was told that “it would really be too bad if I felt that I had to send him somewhere else.” It felt like, take it or leave it.

Ben has found great success, freedom and independence in navigating the halls in our current building. He can come in from the playground, put away his things, use the bathroom and head off to chapter book reading, all fairly independently with his peers. His parapro can currently aid others and keep a watchful eye on Ben while allowing him independence and the opportunity to take responsibility for his education. At (the proposed school) this will not be possible. He will need one-on-one assistance any time he needs to leave the floor. If his class is on the second floor, he will need assistance to go to the bathroom. Will the district support a one-on-one parapro when this is not district policy?

As you can see, I am not as worried as you might think about the “accessibility” of the building. I do have concerns. How do we get Ben out in an emergency, or even a fire drill? The doorways are old, so they are more narrow, but I don’t know how they meet standards yet. The rooms are smaller, this poses a logistical problem on how to fit 25 children and allow space to maneuver a walker. Few of the bathrooms have rails. The second floor bathroom has stairs. The Auditorium stairs have no rail. Between every addition there are major slopes in the floor. This is, for Ben’s purposes, a five story building in that there are stairs between old second floor and new second floor areas. I believe accommodations will be made to the building to “meet” standards. These are areas of concern but the over all logistics and the social/emotional/physical impact on my son are all my concern.

I know that we are working in a budget crisis. I am not against a move to main campus to alleviate some of the shortfall. I also know that there are big plans if the bond passes and big future plans for (the proposed school) as an academy of sorts. Even if the bond passes, being on separate floors adversely impacts the method of the Multi-Age Program by hindering peer-to-peer mentoring. And, what if the bond doesn’t pass? I do not have a demand on where I would like our program to move. I simply know moving to (the proposed school) presents physical challenges for Ben that are not present in single story buildings.

This letter is meant to give you an idea of the challenges this move may present to Ben. I know that Ben is not the majority here, but I believe that most of us chose this program, in part, on the accessibility to a supportive education addressing the needs of every child. These issues should be addressed, not only for Ben’s sake but for all children with a limitation currently in our building, as well as those who may need to turn away from this wonderful program because the physical space is limiting to their child.

I want you, all of you; to be sure that the entire picture is being looked at.

Is this THE BEST possible solution?

I know, I know

2010-01-21T02:19:00.002-05:00

I know! I need to find a happy place to post from but for goodness sake it is January! In Michigan! I have even held off from posting because I have too much whining to do :) So to get this off my chest... The front seat of the bus...you know, where Ben's adaptive seat is strapped down and he is strapped in? That's the one. Well the extra spot next to Ben SHOULDN'T BE USED AS THE "IN TROUBLE" SEAT! Ben should not tell me that his friend didn't get to sit with him cause "blank" was in trouble and had to sit there. How is the seat my child (that is too strapped down in to get in trouble) is sitting in, THE TROUBLE SEAT??? Come on folks! Think! That's just rude! Just in case you didn't know, it's not nice for your children to get together and yell "Hey Ben! Bet you're too slow to catch us!" then run away. Stop them! It is mean! And I don't give a f&#@ if Ben is smiling. It still sucks! Back to the bus (love the bus) when kids say things ranging from "Ben can't get out of his seeaat" to "Since you can't walk down the steps very well, you should try to fly!" it is not nice. Stop them. Then tell me so I can give him a mental band aid when he gets home. Don't think for a second that it is OK to threaten Ben with taking something away (including therapy! No joke, it happens) if he is having trouble controlling his body and getting things done in a timely manner at the same time. HE HAS A REALLY GOOD REASON FOR NOT KEEPING UP, IT'S CALLED CP! Please keep your ears open for what children are saying to him and give me a heads up. I hate to hear "I'm just too slow to play", "I guess I'm just not strong", "Mom, I don't think I am strong enough to be seven", "Maybe my legs just have to be crooked", and "I want to go to the hospital so they can fix my brain" but I really hate it if it is stemming from school talk and I am the last to know. By all means, look at him, correct his behavior if he is not following directions, love him, expect a lot of him! But please folks, gain control of your behavior and don't make this harder for him. Thank you. I feel a little better.

"Normal"

2009-12-09T11:41:00.003-05:00

Normal. A word we don't use around here. Ever. Here, there is just no such thing. It is a concept of a mold that we neither fit into or acknowledge as something we should fit into. We are who we are and for the most part we are OK with that so we are not bound by the demands and disappointments of "normal".

Unfortunately the world and the folks in it, still have a pretty firm grasp on their idea of "normal". Whatever that may mean to them. I understand it. I really do. I get "normal" as an idea that holds a community to a standard that brings together its members in a peaceful and functional way. In a way, part of our (mostly Ben's) problem is that our appearance fit's this idea of normal.

When Ben used his walker more regularly or when he wears shorts and others can see his knee high braces, he is given a bit of leeway. Don't get me wrong, this is often not a good thing. People see the hardware and jump to all sorts of conclusions; can he hear? (yelled in his face), can he see? (those are his feet you are looking at crazy lady, not his eyes), you been drinkin? (we get this a lot), not to mention all of the "sensitive" people who won't let their children get within 5 feet of the walker and assure their children that "he might not understand you" so "lets just give him some space". But it can be a buffer for the behavior that steps outside of this norm. If he bumps into folks, they accept the apology. If he trips, falls, runs over your toes, jerks his head or arms, takes a while to answer, is in the way, talks too loud, talks to slow, doesn't play "by the rules", won't eat the food, cries when he hears loud bursts of noise AND his is showing a bit of assistive equipment, people pause before they react. They just do. BUT if they react before they see the gear, then see the gear, red faces and back peddling are sure to clear them from our view in a wink.

In the absence of obvious assistance, we face anger. Anger, judgement, exasperation, fear, frustration, impatience, annoyance and invisibility. Words that should never be pressed on a child. As much as I don't like that I have to explain the bad behavior of children to Ben, I do it because it is what it is and we can pretend that children know how to deal but that won't make it true. I shouldn't have to explain the bad behavior of adults though. I shouldn't have to say things like "they didn't know you were losing your balance, try to reach out to me next time." A grown woman should know better than to yell "OUCH" at a 42 pound kid who tripped into her. Grown ups should take responsibility for the fact that they are the adult and have the ability to hurt or have compassion. It shouldn't make my heart rate rise to take my kids to Target for fear that some a$$ will provide me yet another opportunity to clean up a potential emotional scar. I shouldn't have to thicken my skin against the stares and the whispers. I shouldn't have to put on my cheerleader hat every time I leave the house so that Ben is protected by a playful approachable mom. But if I don't, at best (and worst) Ben is ignored. If I am not in the trenches paving the road with folks who understand a bit more then the average joe, I hear things like "Socially he is doing great this year. Such an improvement!" then watch as my happy playful boy goes to almost every child he passes on the playground only to be backed away from, run away from and excluded in play. And he keeps trying, with a smile, while my heart breaks at how hard he is working to be a part of things. Yeah, he is doing great. But "normal" gets in the way every time.

In the minds of children

2009-12-02T17:07:00.005-05:00

A few nights ago I put the kids down then headed back to the living room to give Lily some much needed play time. Now, I can't throw to save my life, so tossing around balls for Lily is a bit of a hazard. I have only broken one picture (so far) and if you know me that is pretty good. This particular evening I managed to wing a speaker which sent the ball clunking into Kiera's bedroom wall. My heart sank.

If you are anything like me, when the kids are down, you don't want to see them again until morning. I answer their calls, direct sleepwalkers toward the potty and pull all nighters for sick babies but these days I try to take my mama hat off at lights out and take a break. Yes, I do know how lucky I am to have this freedom. No, I don't feel bad in the least about the fact that I really need a mama break. Guilt and I have an understanding at the moment.

Anyway, about a minute later Kiera comes slowly into the living room with eyes nearly bugging out of her head. "Mom," she said "I just heard the alligators back in my room." Oh for goodness sake, one miss throw and the alligators are back? NOOOOO! We have spent many months ridding Kiera's room of "bad" alligators and making strict night time rules for the "good" alligator that remains. But here we go (don't laugh, don't laugh, don't laugh).

Me: Kiera, we have sent away all of the alligators.

Kiera: But mom, I heard them in my dresser!

Me: That noise was me Kiera. I tossed the ball for Lily and it hit your wall sweetie. I am sorry it scared you.

Kiera: No mom. It wasn't a ball. It was the alligators. Now they're in my dresser. (eyes bigger, wringing her hands, voice a very serious fear whisper)

Me: I really don't think that there is room in your dresser for any alligators.( don't laugh, don't laugh)

Kiera: I am very nervous that there is at least one.

Me: Should we check?(OK, now I'm laughing, bad mom!)

Kiera: Yes please. (barely a whisper)

We then checked every drawer, nook and cranny in her room to find the offending alligator and when nothing was found Kiera agreed that she would go back to bed with this qualification, "I hope that is just the nice alligator." She honestly just thinks that I missed something.

Today, after seeing a mom nurse at play group, Kiera explained that mom's need to drink lots and lots of milk then babies can drink it off their bodies. OK.

Kiera's favorite expression is "superty duperty" As in "I love you superty duperty much!" Love it!

Kiera has found the funniest Christmas song ever. You know the one-

We wish you a Merry Christmas,

And a Happy New Year!

Now bring me some stinky pudding,

And a cup of good cheer!

She has been singing it for two days. Constantly. It was funny yesterday.

Kiera- Ben can I please snuggle with you cause you are my bestest friend?

Gotta love this girl!

So tired, tired of coughing...

2009-11-21T01:13:00.004-05:00

Spending a few days feeling (and looking, wow you should see me!) like crud can make a mama think. Or over think, you've been there right? Yesterday, I made it back to the doc. A series of complications got me off the couch with my kids in tow to get there, but we made it. It is the most moving around that I have been able to do since the last trip to the doc so at least that's something. I am guessing that I really do look as bad as I feel because they took me right back (to the "I don't want what she has" room) and checked my sats. 96. I feel this deprived of breath at 96? We have been sent home with Ben satting below 95. How must that feel for him? Is it frightening? Is it so common for him to feel uncomfortable that this is just one more thing? Is that why he will let me hold him and tell him that he is going to be alright? Because he needs to be assured? Why doesn't he complain more? Is it just another unpredictable aspect of being Ben so he is willing to roll with it? Am I glad that I don't know the true answers to most of these questions? Hmm. Keep in mind that I am in an after hours clinic simply because my docs office had no openings. Too may sick folks. So now I have a doc asking me how I am feeling, without caring a bit. She asked how my breathing felt. I told her that it feels like someone is squeezing the bottom of my throat, that there are elastic bands around the bottom of my lungs and there is a stabbing pain just to the right of my spine every time I breathe. She looked at me and said "Oh that can't be right. Most people describe it as a tightening in their upper chest and just behind their throat." How is it OK to utterly disregard the answers that you solicit. I FEEL LIKE I HAVE ASTHMA< CROUP AND BROCITIS ALL AT THE SAME TIME! The Bad Lady was just another bully in a white coat. She is just the kind of person who I would never accept for my children. Jerk! Well what is has come down to is that this little bug has brought out my asthma. It (my asthma) doesn't bother me much, in fact I don't even have an inhaler anymore. Last time I used one was when I was pregnant with Kiera. I really dislike the side effects of albuterol so even when it does show a hint of aggression I don't "treat" it. But, can't breath so treatment it is. FYI, I do not recommend administering albuterol plus anti-inflammatory in a tiny room with a little girl who tends to tip toward the bouncy side and is very susceptible to anything with an "agitation" warning. Just sayin. Things got a bit interesting after that. Anyway, one treatment and my entire face was numb. I turned into a shaky ball of quiver to the point that it was hard to talk. And I, of course, want to cry for all the times we have hit my little dude with two or three of these in short succession. My goodness. To have no control over the decision, no solid grasp of the reason and even less of an understanding of the side effects that result! I am really going to have to work on getting him better words for what his little body is told to deal with! After being assured that any other thing I mentioned was my imagination (lung pain? what lung pain?) I was off to pick up scripts. Inhaler, steroids and the useless little "pearls" that always seem to be the next choice after cough meds with codeine (which I can't take). Why has no one though to choose a different med to mix with cough meds? Today, I am beat. I don't feel as BAD. No fever and now I can breath a bit more. It feels like I haven't slept in days which I guess is true. I am up again because flat doesn't work and coughing is just to dang painful now that I am not coughing through the asthma sponge. I am sitting out here listening to my sweet tired little family cough through their sleep and feel so bad for the little ones. Dave's a grownup, so he knows the drill. But the babies in our lives, we expect so much from them. We ask them to not make it harder than it has to be. And all that we can offer them in return is our warmth and assurance. We ask them to take our word for it. And they often do. Amazing little humans we have among us. Or, I could just be an over thinking whip of a grownup who has gone soft to the unpredictability of life. Yep, that could just be it.

Sick

2009-11-19T00:53:00.002-05:00

It's a busy thing this life stuff. I keep thinking if we can just get past (blank) we can breath. Turns out I can't. Two weeks ago we got the call from the ped that Ben set off their "high risk" bells so could we bring him in for the h1n1 vac in the morning? Sure. So we did and that was that until Saturday, when he got the flu. It has been raging around his school for weeks and I was in fact surprised that he hadn't already gotten it BUT I was a bit put off with his getting it just two days after a shot that he was pretty pissed about. It hit him hard and fast. Dry cough, fever, runny nose, vomiting (aspiration?), headache, exhaustion. He was pretty pitiful but only for a few days. Considering what I feared we might be in for, better then I could have hoped. He was back to school on Wednesday. Then Thursday Kiera looked a little off, and sneezed about 50 times. She was a trooper and made it through the Fashion Show (where we all looked loverly in our V2V and Elephant Ears fashions) but woke on Friday with the crud. Then it got Dave. Then it got me. Sunday we made a family trip to the after hours doc because I was sick as a dog and if I'm going, Ben is going to get his chest listened to and we tossed in Kiera for good measure. Verdict, we have the flu. You know THE FLU. The only one that you can have right now. Ben has not craftily turned his into pneumonia (yet), Dave is getting over it, Kiera is still coughing so hard that she wants a sicky bowl with her in bed "in case I trow up" and I am having a heck of a time with it. I can tough through most but this is kicking my bum. I still have a fever for goodness sake. And if I could pay someone to loosen the hold on my neck and my chest I would. This is no monkey business, I have been down for six days. I got Ben off the bus today and was forced onto the couch to cough for an hour. I'm up now because when I am flat (aka "sleeping") I'm coughing. Who has 14 days for this crap? So no, after (blank) we can't breath, because I can't breath. Arggggg! hackhackhackhack

Recap

2009-10-15T03:30:00.000-04:00

Remember when I had a little rant about too much on my plate blah, blah, blah and something had to give blah, blah, blah.

Can you guess what gave? This. Facebook. Google groups. My cyber outlets gave. I miss them. I miss you. I miss my contact with the world that gets it. I miss your babies. I miss your stories. I'm back (for today) for a start on a recap because the last 3 months are worth recapping. Soo... May- Kiera's recital, Ben's science project and playing together.

Ben rocked through all of the dirt scooping, seed planting, watering, picture taking, writing and gluing that was his science project. By himself! It took a bit of direction but he did it and when he was done he shouted "I did it! Thank you so much mom for helping me do it!" Nice. Dad got his own great moment during the presentation at school. Crowds of older, super cute girls tucked in around Ben "oooing" and "ahhing" over his project. Dave took about 10 pictures of that with a proud little smirk on his face. We all see success in our own way ; )

Kiera's recital-lets just say, I'm really glad that I filmed the dress rehearsal. They did the dance 3 times total. Two were during dress and once, of course for the recital. They became VERY comfortable after the initial stage spook and started pulling all sorts of creativity out of their tightly wound buns. BUT, no one cried, peed or ran off the stage so it was all good. Kiera was amazing and cute as can be (of course) and because I didn't note it, she is the second from the left in the vid. You know, the one with WHITE fluff on her head :)

Photo and video editing at www.OneTrueMedia.com

And then this. To the untrained eye it may look like no big deal, but what I see is my two beautiful children choosing to play together. Without prompting. And it required cooperation. Amazing!

And...

2009-06-10T13:12:00.001-04:00

And then my mom had her hip replacement surgery. All is well on day one. NO pain, epidurals are cool. We'll see how she feels after the epidural comes out tomorrow. It's one day closer to less pain.

And now...

2009-06-03T22:20:00.001-04:00

And now Kiera has strep. Wow.

So much...

2009-05-05T16:58:00.005-04:00

So much on my plate these days. So much... Problem is I don't want to take anything off my plate. What would I choose? I don't want to give up my volunteer time. I volunteer because the cause is important to me. Which do I walk away from? The NICU board...the birth to 6 parent board...Ben's school... And Kiera, oh Kiera. Poor girl had been coughing since January it seems. Then the fever came. And the vomiting. Then the doctor. And more fever. And more vomit. And more doctor. AND MORE FEVER! AND MORE DOCTOR! AND A CHEST X-Ray! AND PNEUMONIA! And antibiotics. And all better : ) Then the hives came. Poor girl was just getting over her cough and she bloomed up with big wetly itchy hives. Another couple office visits and we came up with erythema multiforme presumed initially to have been a reaction to antibiotics but on further consideration, was probably just her reaction to the end of the pneumonia, as if there needed to be more. Turns out Benedryl makes Kiera a bit zippy and a bit pissy. OK, it was a bit more then that. More like we gave her CRACK and in the end it was Zyrtec that saved her from the itchy bumps. Still made her a bit zippy but this time only a bit and it didn't make her wicked and shifty. All in all, Kiera and I didn't sleep for 5 nights. Really. And I'm no longer trained in sleep deprivation so 5 days of sleep loss cost me just about all the sensibility I had left. Sensibility is is like muscle mass, easily lost and HARD to regain. Kiera and I are both still a bit "off"(crabby, whiny bitchy messes to be around). We're working on that. I promise Dave. On the lighter side... Kiera-isms Kiera-(poking me in the bum) Mom. You have a fat bum. A great big giant fat bum! Mom-Kiera we don't tell people that they have fat bodies, it might hurt their feelings. Kiera-(few days later) Mom. You have a big fat bum. Mom-Kiera, remember when we talked about how those words can hurt peoples feelings? Kiera-Yep I do. But mom, you sure are stripey! (running her fingers over my stretch marks) Hey mom? I can feel the pretzels, but I can't see the pretzels. I think it's because I have my eyes closed. Those things probably just happen. Sigh... Much more to post, like... our first family flight to a wedding in AR, the upcoming end of the school year and the end of my job for the summer, my A in my class: ) Kiera's dance recital (oh just swimming in cuteness), Ben's science project (oh so fantastic I have to show pics), our reckless puppy, Nana's hip surgery, and on, and on... Now to bed. A kiss goodnight to you.

March for Babies 2009!

2009-04-23T23:26:00.003-04:00

This is our four day reminder to please support our fundraising goal for the March for Babies. What? Again? You never saw our other solicitations? This is the first you have heard that we are walking on April 26th for the March of Dimes? The second year in a row! Now you can all sit back and remember that last year we at least got out the note a week ahead. But you are dealing with Shannon and Dave and based on the last two years, I won't post next year until the day after. Seriously, many of you saw this plea last year so you probably know why we are walking. Growing up, my mom literally collected dimes for the March of Dimes and I never paid much attention. It wasn't until I saw the heroic measures taken to save my early baby that the March of Dimes MEANT something to me. The steroids and surfactant that Ben received before and after he was born are a direct result of March of Dimes research. These measures alone may have helped to keep our little guy alive. That is all I need to know and these are just two of the medical advances that March of Dimes research is responsible for. Every year 120,000 babies in the US are born too soon. Many don't survive and many of the babies that do survive, including our amazing Ben, do so with life long disabilities. We are walking to try to change this number. We are walking to celebrate our baby who was born too soon. Our goal is $500. If you can give, please do so by following this link to our donation page . If you would like to walk with us, the more the merrier! Anything that you can do to help support this cause that is so close to our hearts is appreciated. Think of what we can do if we all donate just $5. Just a few cents more than a Grande no fat white mocha light whip. It would again, be nice to get the amount on my goal tracker above $10. Yes the 0 really does makes me feel like a looser : ) Take a peak at the beautiful video put together by a dear friend here And if you still need convincing spend a few minutes with another dear friend here Thank you friends, for your enduring support.

My little man now...

My little man then...I had only this picture to look at while I pumped for a baby in a different hospital. Lets do what we can.

Time

2009-04-21T08:56:00.003-04:00

Facebook has made me greedy! Not that can update from my phone (I'm not THAT connected yet!), but I have thoughts to share and stories to tell and I want to share from where I am sitting. Yes, I am dreaming of thought activated blogging! I want to sit in my car and ask you all what you think? What do I do with this very first Birthday invite for Ben if I don't have any idea who the child is? How do I juggle life and my health? How do I keep moving forward? How do I get better at this? How do you?

Happy Easter!

2009-04-12T22:50:00.002-04:00

Happy Easter to all! Too many deviled eggs! Too many olives! Too much ham! Too many potatoes! Too many jelly beans! Too much pie! All sooo good!!!!!!!!!!!!!!! Tons of hugs! Tons of laughs! Tons of silliness! Tons of love! All sooo good!!!!!!!!!!!!!!! And no puppy accidents! What a great day!

Hello Lily!

2009-04-09T23:20:00.003-04:00

Well, I've been so busy around here that there has just not been time to blog.

So we got a puppy!

OK. So the timing is a bit off but she was just what we were looking for and fell into our lap.

So here she is...

Lily!

Yup. She is asleep in a cup holder.

Alone

2009-02-26T21:21:00.005-05:00

Mid-winter break. Always a bit of a disappointment. Even as a child I wished to head south for the break and my children are no different. Not an hour after we learned that Ben's surgery was a no go, my clever little man had a plan; "Since I wont be waiting for my belly to get better, it's time to go camping on mid-winter break. To the beach." Huge bummer to make it clear that we just couldn't do it. Tough for a kid to understand that we would have to drive to the Keys for it to be warm enough to camp and THAT IS A LONG WAY. So, we have made the best of our week. In the cold. We made a trip to Build-A-Bear where Kiera picked out the pinkest, floweriest, Kiera-est bear she could find and promptly named it Huggy Bear. Ben looked at every choice and after a good deal of thought picked a good old shaggy dog. When I asked if he had a name for the dog he gave me a look of confusion and said "Skyy. She's a girl dog named Skyy." Aww. We had some great play dates. Long days with friends at their houses where the toys are new and the friends are old. I even got to chat a bit! Great days for all. I did my first ever "sign them in, drop them off and come back later". I didn't even know that you could do such a thing but at IKEA, you can! So I did the short chat to be sure that they were comfortable with Ben and off they/we went. They have never been left anywhere. Off they went. Didn't even look back, just took off to play. AND had a great time while I got to stroll (jog) through the store with a friend. A grown up friend. We talked and had opinions that had nothing to do with whining. Nice. And of course no week is complete without the requisite doctors appointments. We saw Ben's physical medicine doc and got a big thumbs up. Stronger, not tighter, sounds great, looks good. No big changes so not a big surprise. Then we had the milestone 3 year and 6 year appointments. Kiera is 38" tall (75%) and 32 lbs. (50%), had her first vision test and passed and is over all, a precocious neurotypical child. Ben is 47"tall (75%) and 42 lbs! (25%) and his lungs sound clear. I don't know what I like to hear more, clear lungs or 42 lbs. 42 lbs was a fun number to hear. Even if it was after 3 slices of pizza and 2 glasses of milk. I'll take it. It would mean that we have finally made it back to how much he weighed 7/2007. A year and a half to re-gain lost weight. That my friends, is why parents with non-eaters or even CP eaters watch every meal. Easy to lose, hard to gain. The doctors appointments were actually a fun part of the week. Well, except for the part when the doc tried to help us out by freezing the persistent wart on Ben's hand. I can only describe the sound as a monkey and a screech owl somehow fused and both really pissed. We'll forget that part for now, this is a happy post. I even got in on the action and had a doctors appointment today. Off to my yearly neurology visit where I usually wait around for a bit then answer "no" the annoying question "have you had any seizures?" (as if he wouldn't be the first to know) and then listen to him talk about his wonderful children then donate my co-pay to the cause. This appointment was setting up the same way so when the question was asked I gave my "no" and added, but I feel like crap. Can you believe, he stopped and talked to me for a good 20 minutes about how I am feeling. Diagnosis (drum roll please) high stress and bad sleep. Yup, sounds about right. So he suggested a sleep aid. No Ambien for me. Kiera wakes in the night and apparently if you are woken up on Ambien you are liable to wake up in the neighbors driveway. So he suggests something low dose, extended release that allows you to wake up then go back to sleep. Xanax. I had no idea what it was until I read the info sheet from the drug store. Anxiety... panic...Wait a second, so if you take it during the day you have a panic disorder and if you take it at night you just sleep like crap. Hmm, we'll see. Keep in mind that I went to this appointment alone. My wonder mom came in to hold down the fort while I went to the doc. So there I was, driving to get my blood drawn (must be sure levels are correct, no seizures AND no thyroid cells) and I had this peaceful feeling wash over me. Yep, on my way to get my blood drawn, sounds crazy but when you do it a few times a year it stops being stressful. It took me a second to place this peaceful feeling, then I got it. It was simply that I was alone. Not rushing anywhere, not listening to anyone and simply being responsible for myself. Alone for the first time in who knows how long. It was lovely.

Home

2009-02-15T21:07:00.002-05:00

WooHoo! We are home. And sooner than expected! Isn't it interesting that they will send you home sating 93%. We've been admitted at 94%! I'm not going against this one though. They are getting better breath sounds on both sides, only hear the crackles on the right now and he is able to cough again. All heading in the right direction so we are home with 2 antibiotics (one for the suspected aspiration pneumonia and one for the suspected community acquired bacterial pneumonia). This is a snippet of an email I received after Ben's surgery was cancelled: "Wow, I think we all prayed and meditated with great intensity and kept Ben in our hearts up front so we caused the surgery to be re-scheduled. Next time I will be more specific about Ben and his progress." Too funny but hmm... Thanks for all of your positive thoughts everyone!

Admitted

2009-02-13T23:26:00.002-05:00

First, our surgery was cancelled! Wednesday we sent our sweet little SICK girl off with sainted Auntie Kier, finished packing and were off to bed. Made it to the hospital on time and were told immediately that there was going to be a delay. Apparently it had been a crazy night and the hospital was so full that they were taking the outpatient cases first to buy time for beds for the admits. They thought about an hour delay. An hour, OK we can do an hour. Ten minutes later we were called back to talk to the surgeon (dum dum dum dum duuuum) who told us that he couldn't do the surgery. The head of the hospital had just called to have him cancel all admit surgeries due to the fact that the hospital was 20 beds over capacity and the OR were literally full. Our surgeon explained that he would be in surgery all day and all night to catch up with the emergencies that came in the night before. That was when my head started to spin. The thought of all the prep that went into the last few weeks came flooding over me. I'm gonna have to do all this again? We were ready. All of us were really ready. Ben was prepped, I was prepped, Kiera was prepped, Dave was even prepped. Crap, crap, crap! After I shook off the YOU ARE KIDDING ME fog, some more info came out and the cancel didn't sound too bad. Like, our surgeon had already been busy that day and it was 7:30a. And, the beds upstairs were spilling over with really sick kids. And, because the laproscopic takes so much longer they were going to skip trying it and go right to an open surgery. OK, cancelled is not so bad after all. You ready for the punch line? Ben was admitted today after all. FOR PNEUMONIA. Yup. I took Ben to school yesterday (since he didn't have a pesky surgery to worry about) just a bit before lunchtime. I stuck around through lunch and then was on my way to pick up Kiera and got a call from school. Ben had climbed into his helpers lap and didn't want to move. He finally did sit to watch a movie and promptly fell, hit his head, cried, coughed and threw up. Oh yeah, and he has a temp. After a night of vomit, phlegm and lethargy we ended up at our docs this morning where he was found to have crackly lungs and sats at 88. Crap, crap, crap! So there he is, in the hospital with every other plague ridden child in a 100 mile radius. Little man up in the hospital, sick. Little Kiera at home with Nana, sick. Mama running around wanting to make them both feel better, sad. All of us, very tired. This life is not a roller coaster. It is a series of car accidents.

Here We Go

2009-02-11T22:24:00.003-05:00

OK folks, those I know and those I don't...

Send all of your healing thoughts to my little guy tomorrow.

Check in at 7:30a, surgery 8:30a. Around a 5 hour surgery.

Give Ben your best thoughts to help his little body stand up to what it will go through and heal quickly so that he can move on from this.

I'll be thinking of all of you who have sat in waiting rooms before and drawing on your strength. Thank you all.

Much love,

Happy Birthday Baby!

2009-01-28T22:07:00.000-05:00

We had some bad juju hanging around our Birthday day's this year. We had quite the day on Kiera's Birthday and Ben's proved another challenge. Much temper (crying, spit flying and fighting) was finally won over by a huge stack of pancakes and a big glass of milk. So it was a happy birthday after all.

To my boy, my first, my angel, I wish you the happiest strongest year ever. You amaze me everyday with your strength. I love you baby.

Goodbye Skyy

2009-01-26T22:25:00.005-05:00

10 1/2 years ago a family friend called and said "Heard you two are looking for a dog." A puppy I corrected. She asked us to just take a look at a beautiful 1 1/2 year old lab that really needed a home. She brought over a beautiful and totally insane bad dog. We kept that bad dog and today we had to say goodbye. She was a bad dog. But she had no choice in the matter. Six months of abuse had changes a defenceless puppy into an alpha like no other with all sorts of issues. She sounded like she could and would rip out your throat when she played. She attacked the hems of our clothes to the point that there were several years where we just didn't have any intact hems. She barked incessantly at anything that moved outside our windows. She ran away at any chance and we always found her by following the snarling that ensued when she found another female dog to pick on. She ate my Tupperware out of the sink, repeatedly. She ate anything left on the counter for that matter including but not limited to butter dishes, 3 pounds of ground beef and an entire fresh baked apple pie. She growled at my babies and anything that crawled. She chewed through sippy cups only full of water. She had bad dog teeth that needed a $300 cleaning every year and don't even start tacking on what the extractions cost. She had no use for us the moment we walked out the door so she was un-walkable without special equipment. With baby Ben With baby Kiera

But she was also sweet, playful, joyful, loving and affectionate. She was always glad to see us. She had to touch our babies when they were small with a paw or nose. She watched over the kids and was at a crying bedside faster than I was. She never once put her teeth on a child. She learned that I was the alpha, and gave me that respect. She didn't chew non-food related stuff with the exception of the plush squeaky toys we gave to her. She needed to be with us (in the house) all the time. She was a great foot stool and pillow. She could hold it like nobodies business! She stayed up with me every night and would go to bed when I did. She loved Dave. She like nothing better then curling up on his feet. She loved Kiera. She really loved Kiera and Kiera called her her best friend. She learned to take commands from Kiera. She loved our cat Corbin and would play with him for hours. He always won. She let our cat Maggie love her. She named herself when Dave suggested whiskey and I answered "How about Skyy?", and she came. She cleaned up after the kids. The best vacuum ever. She was a part of our family.

Goodbye

Kiera sharing her blankets.

We'll miss her.

Happy Birthday Kiera?!?

2009-01-24T23:54:00.002-05:00

Tap, tap, tap went little toes into my room. "I have to go peeps!" screamed a giant voice from a tiny little body. And so it began, Happy Birthday Kiera.

I opened my eyes, bleary from waking 3 times in the night with my restless almost three year old and wished her Happy Birthday to which she said "It's not my birthday, I'm just 2!". OK, I can go with that, at least until I get my coffee. We all piled onto the couch for coffee and milk and I pulled down the picture of my sweet little one, just 5 minutes old and told her about the morning that she was born. In my pre-coffee delirium I let her hold the picture frame and the next thing we knew both Kiera and Ben had cut there fingers on the glass and there was blood everywhere. While we where cleaning that up and getting ready to go seen Gramma and Grampa at their hotel, the dog threw up buckets at our feet. Then collapsed. We made it out the door and to breakfast where Kiera had cake and got to blow out the first first candle of the day. YAY! Hope for a great day! We went for a swim where Ben and Kiera took turns forgetting they can't swim and swallowed gallons of water and we ended up carrying two screaming children out of the hotel, desperate for a nap. Kiera woke up from that nap wet and crushed (presumably from excessive pool drinking). But, we made it back out of the house (past the dying dog to dinner) where the kids took turns losing it until the wonderful magician came with his crystal ball and magic bubbles. Toss in another piece of chocolate cake and the day was saved in the end!

It was a tricky but Happy Birthday!

Love you so much Kiera!

A Bit Sad

2009-01-22T01:21:00.002-05:00

I really try to keep my eyes open. I have a special needs son and a tornado daughter, it is in my best interest to see what is coming. It is also in my best interest to see it before others do so that I don't have to deal with the "news" shall we say. Well, time got away from me and all of a sudden it is Birthday time again. I did some thinking of fun individual get togethers for the kids a while back but then figured that this may be the last year that I can get away with having a joint party so I'd take advantage and have a little group of close friends and fam over to celebrate (insert head in sand). Having the together party will be great. It will also be safe (time to get head out of sand). I don't want to deal with trying to sort out who Ben would invite from school. Would he invite anyone? His teacher and helper most likely. Then if asked again would he want to invite kids? Would they want to come? Would their parents pressure them into coming even if they didn't want to? I have had to sit back in the last few days and swallow the damn bitter pill that it is halfway through the school year and Ben doesn't have a best buddy. He hasn't been invited over to play. Anywhere. Not once. It makes me cry. So we will have our together party, and it will be fun and no one will have to know that I have spent nights crying over it. They I'll ask the questions, swallow my fear and set my sights on making friends. Playdate anyone?

Uggg!

2009-01-06T19:21:00.005-05:00

I wish I was one of those moms that said things like "it was a challenging evening" and truly believe just that. I really do. I think that I had a period of time when maybe that was me but it sure isn't me right now. Now when I say "it was a challenging evening" what I am thinking is that it was sheer luck that my demon children lived to see their daddy tonight! They (we) are having a tough time transitioning back from vacation. We had many wonderful moments over the last few weeks where my lovely darlings loved each other. Really! They were seeking each other out, playing games of their own making, playing with kind words, and best of all treating each other with understanding and patience. Just two days back to the grind and they are the same intolerable beasties that I wanted to toss out of the house 2 weeks ago (can you do that with 3 and 6 year olds?). I actually thought just before the break that they need a vacation! Well they had a freaking vacation and all it did was tease me into thinking that we may be turning a corner of decency then tear away my new found hope. They have resorted back to shrill screaming, hitting, pushing, yelling, and ignoring, contrary little beasts! Ugggg! I can't stand nights like tonight when I actually look at my children and hope that they just don't become serial killers because all hope is gone of guiding them toward being positive members of society! For your entertainment, a few snippets of conversation from the last 24 hours. I can’t give you too much because so much of it was unrecognizable child shriek. Mom: Ooo! You smell so good. You smell like fresh tubby and strawberry toothpaste! Kiera: sniff, sniff You smell like yucky! You a yucky mommy. Mom: I’m pretty surprised that you don’t want to go swimming buddy. Ben: I want to make you sad. Mom: just after putting Kiera down COUGH COUGH COUGH! Kiera: Is that you mom? Mom: Yes honey but I’m OK. Just a cough. Kiera: You OK? OK then, you need to stop doin that cause it’s keepin me up from sleepin and I tryin to sleep.

Look sweet enough don't they?

Don't be fooled they are partners in my mental undoing!

Have A Rockin' Christmas!

2008-12-25T12:51:00.002-05:00

Love,

All of us!

Re-Do

2008-12-22T11:11:00.002-05:00

I began this blog, officially, almost 2 years ago now. My first entry was just a little "I'll give this a try" kind of thing. Then I didn't touch it for months. My next entry was when I found an outlet for the turmoil that often goes with special needs decision making. It was my attempt to sort and deal with my struggle in deciding to go ahead with Ben's Nissen Fundoplication. Today I scheduled Ben's surgery for a re-do Nissen Fundoplication. Notice how I haven't linked to it? I don't want you to feel compelled to follow a link and read about how much this will suck for Ben. Search away if you like but be warned, when I say it sucks, I mean it. After his hospital stay and doctor follow up we were really hoping to be one of those cases that are free and clear for years. We are, or rather Ben is not free and clear by any means. We are officially symptomatic (no appetite, refusal to eat, vomit, abruptly stopping eating due to pain, vomit, weight loss, complaints of gas pain, complaints of stomach pain, more vomit, weakness and lethargy, hiccups that make him sick, mama it hurts when I eat, can you make my tummy stop hurting, please don't make me eat...). So here we are again. I'm sad. Really sad for him. I hate that I am saying "go ahead and do it again". I hated it the first time and hate it just as much now. I am not only sad, I'm angry. Hy heart hurts and then for good measure lets add some guilt. I hate this...

Think again

2008-12-08T09:12:00.003-05:00

There is rarely a day that I don't wonder if I am making good choices. I think that may be the nature of the parenting beast. We (parents) are giving all sorts of responsibility that m a y b e some of us thought we had planned for but in reality the plan and the actual amount of decision making just don't match. We go from freedom to goof up our own lives as much as we like with the idea that we can recover from a mistake if we make it to, if-you-don't-make-good-choices-someone-might actually-die, in the wink of an eye. We usually begin OK. We feed our babies, we change our babies, we hold our babies but then things get more complicated. The questions looking for answers are more complex. The answers often wallowing in that grey area of many OK answers but a few better ones. The trick with the grey area is that the better answers don't actually show themselves unless you don't pick them. My answer to this has been to listen to my gut. But (big but) my gut speaks very softly at times. Well my gut wasn't speaking up when a job all but bit me in the butt so I followed the "can't ignore what is dropped in your lap" theory and went after the job. And got it. I am the new parent educator for a parent/child program in our school district. Now, I am pretty sure that I have lost my mind. Ben hasn't been healthy for a whole week in...goodness...weeks? Over a month. That child has not made it through a full week of school in over a month and I got a job? I'm nuts. On the bright side...naa let's just leave it at I'm nuts : )

2008-11-30T15:33:00.005-05:00

I was thinking that I would get on here today and wish everyone a late Thanksgiving and then boo hoo a bit about how we are all on antibiotics and how I actually missed Thanksgiving all together because of this bug. Instead I am here to say that I am so incredibly sad. One of our worlds brightest lights went out yesterday morning. My friend Robyn has lost her battle with Cystic Fibrosis just 8 days after her 34th birthday. She was one of the strongest people I have ever known. She lived her life. With love and joy. She laughed easily and often. She shared a quiet warmth, strength and happiness with everyone she met. She was so strong and brave that in a way you felt that she might be the one to hold off this cruel disease until there is a cure. But then she got sick and what would have been and inconvenient cold to most of us was too much for her body to take. She was a wife and loving mother to her own little 3 year old angel and my heart breaks for her family and everyone who loved her. She will feel no more pain. We will miss her always.

We're all OK?

2008-11-19T20:52:00.002-05:00

Today everyone is OK? I swear the world is toying with me! Ben woke a couple of times in the night crying and feeling sick and you could hear the air moving around in his belly from the doorway. This morning his tummy films showed that his stomach looked pretty close to what it looked like last Monday. What we assume was gas build up had resolved itself. So not great, but not worse and no upper GI, YAY! But, that nagging little feeling at the edge of my mind is that this was not a stomach bug so how often will this happen? He just missed two day's of school again due to stomach pain. I guess I'm just not sure how to feel about this. Relief that Ben isn't headed for surgery tomorrow, fear that he will be in this amount of pain regularly, confusion about what is exactly going on and of course more fear and a bit more confusion. I can't shake the feeling that we dodged one this time and now we are just waiting nervously for the hammer to drop. And my big dumb dog? Walking around like nothing ever happened. Toying with me. All of them... Must be time for a party ; )

Stomach...Ach!

2008-11-18T23:18:00.002-05:00

Last week we had our follow up with our surgeon. We did another tummy film and an upper GI. Not Ben's idea of a good time. I know that you won't even taste anything new but here, lay on your back and swallow this nasty crap. Ben's upper GI confirmed that the fundoplication wrap and a considerable portion of his stomach have herniated into the space above his diaphragm. It took about 2 swallows for the whole room to get really quiet. The GI doc on the other side of the lead glass went from smiling and waving to extremely stern looking, real quick. During the GI study is looked like Ben had two stomachs. One about the size of a baseball or small grapefruit above his diaphragm and one fairly gas distended below. Unfortunately the only good news is that even given the large portion of his stomach that has herniated, he is considered borderline for surgery and some people can live like this for years. Bad news is that it is eventually surgical and the surgery is much more involved than the last one. This one can't be done laparoscopicly. It is a full abdominal cut, undo the wrap, reset the stomach, redo the wrap and stitch the opening in his diaphragm smaller. You know, all of the complications that Ben didn't have on the first one, well lets try again and see how we do. Especially since you were so gung-ho about giving it a try in the first place... So the plan was that as long as he stayed asymptomatic we would watch him and let him grow as much as possible. Ben was out of school today because he began complaining of stomach pain again last night. It woke him in the night a couple of times and kept him lying low today. This afternoon the discomfort increased and then he vomited. Soooo... We are headed back to the hospital for more tummy films and possibly another upper GI then a re-evaluation with the surgeon. If his tummy looks OK on the films we may just be dealing with a bug but if things don't look good that changes where he sits on the surgical ladder. Here's hoping for a stomach bug! Oh, and it seems that the dog and Ben have some sort of E.T. thing going on. She was on deaths door when Ben was in the hospital a few weeks ago but was looking pretty good until today about 15 minutes after Ben threw up. Not to be outdone she had a seizure and peed on the floor and hasn't been able to do more than walk across the room before she collapses. Really? It this how this has to go? Really? Haven't we earned the "spread out the crap storm" credit yet?

2008-11-16T23:16:00.002-05:00

Have you seen Ratatouille ? Well, if you have I had an Anton Ego tastes ratatouille moment. I was walking into the hospital to do some Fashion Show work and passed by freshly cut-back grasses. The scent hit me like a wave of warm water and literally pulled me back to my childhood in a way that I haven't experienced in, well I don't know how long. It stopped me in my tracks. It instantly filled me with joy followed just seconds later by excruciating pain that made my breath catch. You see, that scent, that smell shot me back into the green fields of wheat that used to grow behind my moms house. But it wasn't my mom's house then, it was my parent's house and the feelings that washed over me were freedom as I ran through those fields, innocence, adventure, security. It was warm, I could actually feel the warmth wash over me as I remembered what it felt like to have no fear, no worry, no concept of real pain and loss. I held onto the feeling as long as I could and then the shear force of reality nearly took my breath away. It was just a second of childhood innocence but feeling it replaced by 30 years of life's harder lessons all at once... I used to be that little girl. I used to believe. I have lost that little girl and it breaks my heart.

Three Days Till The Fashion Show!

2008-11-10T01:51:00.003-05:00

I would like to invite you to point and laugh. And it's for a good cause! Dave, Ben, Kiera and I have once again put our pride aside to be models for the Fourth Annual Fashionable Growth Fashion Show and Silent Auction on Thursday, November 13, 2008 at 5:30pm. This is a fantastic project that we have been working on as members of the Family Advisory Board for the St. Joes NICU since one of our members convinced us that our little group could pull off a fashion show. Now four years and four fashion shows later, we have raised thousands of dollars that have been used to enhance the experience of families in the NICU. This year's event is being held at Washtenaw Community College, Morris Lawrence Building. It is a huge auditorium to fill so please, come one, come all! The evening will begin at 5:30pm with a silent auction (featuring around 80 generously donated items) and appetizers. The Fashion show will begin around 7:00pm (barring blizzards) where you will get to clap, sigh and maybe even cry but leave full of hope and wonder for the amazing children and families that have been touched by the NICU experience. The evening wraps up with a little dessert and a lot of check writing for the winners of the wonderful silent auction items. Back to those seats we would like to fill...we would love to see your faces looking back at us from the audience so we are not giggling by ourselves while we try to model beautiful clothes and wrestle our two monkeys (Ben and Kiera) at the same time. Tickets are $25 dollars this year and TOTALLY worth it! Drop me a note so that we can be sure that the auditorium is filled with just our friends and loved ones since we would hate to look silly in front of anyone else : )

Happy Halloween!

2008-11-03T19:22:00.003-05:00

From my Little Chef and my Princess err, Rat.

Home

2008-10-28T13:32:00.001-04:00

We all came home on Sunday night! Ben is doing great so now we are playing "where's my week?" to get back on track. Thanks for all of your well wishes. I hope not need them again anytime soon ; )

Countin' Chickens

2008-10-25T22:33:00.004-04:00

Countin' chickens. Calling a shut out. Tempting fate. Call it what you will, I did it. I boldly typed, for everyone to see "Usually means the big things are quiet." What was I thinking! Ben is spending his third night in the hospital tonight. All seemed OK on Thursday morning so off too school went Ben. At 10:30 he started crying about his tummy hurting. Quickly, he was fine. At 1:30 he did it again and this time his parapro suggested he go with her to the office to call mom. And he agreed. And he agreed to lie down in the office. And he fell asleep. Now at this point I knew something was wrong. He would never normally agree to any of those things. So while my mom was on her way to pick him up, I was on the phone to the doctor who suggested that if his tummy was making him cry we needed to go to emergency. Emergency? For a tummy ache? OK. Off Ben, Kiera and I went to emergency (where he weighed in at 36.4 lbs) and there we found that the suspected constipation (Chuckle, chuckle, here’s your suppository, have a nice evening.) was in fact, pneumonia, a grossly dilated stomach and a hiatal hernia. And by the way, we’re admitting you and surgery consult is on their way down. Waaa? It’s no wonder the little guy was complaining. The bigger wonder was that he wasn't complaining more! The boys’ stomach was as big as his head. I didn't really think they were serious until I saw the films and yes, his stomach was as big as his head. It was literally bigger than his lungS. Plural. What “we” think happened is that when Ben was vomiting on Tuesday part of his fundo wrap and part of his stomach pushed through that pesky little opening in his diaphragm. Due to the pressure and irritation of vomiting the wrap got pissy and possibly swelled, trapping the bit of stomach up there with it, in turn making the opening out of Ben’s stomach far to tight to release any air. He then retched more and gulped more air that couldn't get out which made him retch and gulp more air that (you guessed it) couldn't get out and we end up with a bit of stomach blown up like a balloon above the diaphragm, a stuck wrap and a huge belly. The first step was to rehydrate our little man by using those ugly two letters “IV”. Then they had to shrink the belly which involved a mighty jaunt through hell otherwise known as inserting a NG tube into the nose of a conscious and PISSED child. Then it was, wait and see if______. The ______ being what they wanted to see next to prove he was on the mend. And ______ was never what happened. They finally pulled the NG tube about 7 tonight so the latest films seemed to enforce the idea that this is not a blockage issue. It looks like if we can get him to hydrate off of his IV and eat and poop (tall order if you ask me) then we may be able to go home tomorrow. But that’s what they said on Thursday. Did I mention that I came home tonight (Dave is taking the late shift, he sleeps through anything) to a dog vigorously knocking at deaths door? Vomit everywhere and death rattle breathing? Well, I aced my mid-term : /

Puke And A Cold And A Mid-term, Oh My!

2008-10-22T18:06:00.002-04:00

I have a cold that is really no biggie if you don't count the wracking coughs that nearly make me throw up (not to mention nearly pee). No sore throat, no snotty nose yet no sleep because I am a coughing fool. Not that clear-your-throat-cough but that deep-down-in-your-lungs-cough-drops-can't-touch-it cough. Yesterday Ben came home from school with a tummy ache. He has never actually said that he has a tummy ache except after his fundo and even then I think that he said it once. His tummy ache turned into an all out tummy hurt that made him curl up in a ball and sob until he fell asleep. Then it turned into an all night wretch-a-thon. Temp at 103, puked up the Motrin, Tylenol and Zofran. Kiera, not to be left out, decided to move onto her floor to sleep and woke up in a puddle at about, hmm, the 5th puke fest. Wet jammies, wet carpet and screaming 2 1/2 year old. And I have a mid-term tomorrow! Can I hear a good old WAAAAAAAA! Sometimes it feels good to complain about the little things. Usually means the big things are quite.

Straightening Up

2008-10-21T11:48:00.003-04:00

It has occurred to me that I have some house keeping to do. A bit ago something happened to me for the very first time. I won an award! A few in fact and not to appear ungrateful, I had/have no idea how to even accept these wonderful awards. So thank you MeghatronsMom , Heike and Melanie and once I get the hang of it, I'll post to pass on the love! Also, I have been running with the same "Other Blogs" for as long as I have been blogging. I'm trying to do a bit of clean up but seeing that Kiera is drumming right next to me I feel my time is limited. I, like many others I suppose, do a lot of jumping around and can never keep up with the list of blogs I check in on. But I will try to add some that I check in with most frequently. Just don't ask me to sort them! Like I said I'm on someones elses time so... By the way, who are you? Who is reading? Drop a note if you like, I would love to visit!

Where To Begin?

2008-10-20T23:44:00.004-04:00

OK.

The good news is, I have been sleeping at night.

The bad news is that I haven't been blogging (or keeping up) and I think that my meds are jacked and that is why I am so dead tired. No thyroid is a pain in the a** sometimes.

So where to begin?

Ahh, the bus!

My last post about the bus was actually made from Chicago where I was having some much needed girl time. My yearly girls weekend was all but rained out and I came home with a killer cold which I then turned into bronchitis and a sinus infection but, it was TOTALLY WORTH IT! I went from high stress to shut down over the weekend and was able to turn off the "Mama Mode" for a few minutes and let my shoulders fall back to where they belong. You know, NOT in my ears. We even went so far as to have croissant and coffee brought to the door every morning. Heaven.

I was there to put Ben on the his very first BIG bus and would you believe? See all those tears?

Yeah, me neither! No problem getting on this bus, just climbed on said "Hi, I'm Ben and this is my mom Shannon and you are Ms. Annette." Little stinker took me for a ride this year. We had one weird moment (Why are we stopping here? Oh we have to pick up that disabled kid.-from the back) but all is well. Now he gets on and everyone says "Hi Ben!" and he says "Hi everybody!" the best part is the the bus driver is very cool and is friends with the old bus driver who asked her (in tears no less) to take care of her Ben. Nice.

Another update is that my friend had her sweet baby boy at 32 weeks. All went well but they are in for a stay. Keep up the good vibes!

Oh! Have I mentioned that I am taking a class? I finally got back on the horse and after 15 years off I am taking my first baby steps into re-starting/getting/finishing my degree. I'm glad I'm doing it but I have my midterm on Thursday so I may change my mind about that.

So much has happened and changed in the last couple of months. I wish I could bottle it up and look in on it now and then until I had a chance to write about it. To save it. Ahh, well. I'm sure not sleep again soon, right? ; )

One Little Monkey...

2008-10-14T14:56:00.003-04:00

One little monkey jumpin' on the bed.

He fell off and bumped his head.

Mama called the doctor and the doctor said,

"No more monkey's jumpin' on the bed!"

Yep.

Sigh...

2008-09-28T19:25:00.002-04:00

Please pray, send a happy thought, what ever you do for my friend Venus. She is currently trying not to have a baby at 31 weeks and could use all the help we can give. Sigh...

Thats More Like It

2008-09-12T18:47:00.003-04:00

There is a light at the end of this tunnel. Monday morning Ben will get on a typical bus where there will be a "Star Seat" providing 5 point restraint and a bar mounted to tie down the walker during transport. I will be boarding the bus to get him seated and I will be boarding the bus to get him off in the evening. The bus will stop at the end of my driveway on it's drive past my house. He will ride with his peers, get on and off with his peers and have a day equal to every other Kindergartner in the district. It would have been much easier for everyone if they had done exactly this when I requested it before school started. Please stop telling us no. Beyond all of glaringly appalling parts of this experience, the situation is changing and being supported by everyone from his teacher to the superintendent. They have all fought for my little man and I will be making banana bread for the next week to show some of my appreciation. I will not, however, ignore the fact that this was allowed by the same people who are now fighting for us. It's amazing what the word discrimination can motivate people to accomplish. Another reminder that while this isn't an easy fight, it's a good one. Stand tall for the little people you protect everyone. Thanks for all of the kind words!

ARE YOU KIDDING ME?

2008-09-10T09:36:00.002-04:00

OK...Wait for it... I found out BY ACCIDENT yesterday that the bus is picking Ben up from school 31 minutes before school is over! Are you #%$&#^% kidding me? You must be kidding. Really, your kidding right? He has been doing this for how long without my knowledge? How long? And no one thought I WOULD WANT TO KNOW THAT?!?! PEOPLE THINK THAT IS OK?!?! ARE YOU KIDDING ME?!?! School is out at 3:41 so the first week when Ben got off the bus at 4:07 or 4:05 IT MADE SENSE! Ben's school is 10 minutes away from the other pick up schools. We live 7 minutes from there. It made sense that he would be home at 4:07. Especially when I was assured that he was the first child off since he is the first one on at freaking 7:37 for a 8:41 start time! Monday the bus pulled up at 3:48. I thought "how on earth" but figured that they had changed something for the day and I would ask around at the Open House at school. Tuesday I was coming home to meet the bus THAT IS SCHEDULED FOR 4:07 and the bus was waiting for me. It was FREAKING 3:46! So I asked (very calmly, smile on my face) how they beat me home. The repose was "We are a super fast bus." all smiles and giggles. My smile faltered a bit but I was still calm and I asked "No really, how did you get here so fast?" They answered "The bus sprouted wings." still all smiles and giggles. At this point my smile was gone, I put Ben behind me and asked "I'm serious, how could you possible pick Ben up at 3:40 and be here, with other kids on the bus, at 3:46?" The smiles were gone all around and the driver answered "We pick Ben up at 3:15. The special ed. kids have to be released to us early so we can get to the schools and get kids home on time." Oh my god... Game on folks. You are not going to tell me 6 days into school that it is OK to take my "special ed." kid out of science EVERY FREAKING DAY BECAUSE HE FALLS UNDER SPECIAL ED! No way folks. Ben's walker WILL NOT jeopardise his education. I don't care how pretty you try to paint the picture. That's discrimination. I don't see one single other child that goes to his school with and IEP getting dismissed early. Bring it! You're about to learn what pissed and powerful is!

Ahh...Kindergarten

2008-09-09T12:34:00.011-04:00

As I said, the first day was great. The orientation was an hour of activities in the room, then the family members were swept out the door and the children spent a solo hour in class. When it was time for us to step out we quick gave Ben a kiss, he burst into tears and we high tailed it outta there past several other crying children. We fretted (of course) for the whole parent meeting, just waiting for someone to come bustling in. But no one did. We got back to class and got to watch Ben walk back in from the play ground with a smile. Such a relief! Then there was Wednesday. Ben's first bus trip to Kindergarten. I (in my foolish, unknowing, uncaring, mean, thoughtless way) thought that this would be the least of our problems. Ben has been getting on the bus for 2 1/2 years. He has done this first day 3 times. The aid on the bus is a woman he knows and LOVES. He has never cried on the first day on the bus. There is a first time for everything right?

About half an hour before the bus came, that would be about 7am, an hour unseen by 3/4 of our house, Ben burst into tears and was basically a teary, snotty mess. He tried everything, "I'm tired", "I'm sick" etc. but got me with "I have to go poop!". Well OK. How do you say no to that? Problem was he was in no way going to agree to get off of that potty once he was on. And the bus doesn't run on poop time. Crap! During the "we need to get off the potty now" conversation the bus pulled up. Crap, crap! So here we are literally caught with our pants down and Ben turns on the gagging. Crap, crap, crap! The wonderful aid starts up the drive and just as I opened the door to let her know what was going on Ben turned it up to high. Spit flying, tears squirting, retching. Welcome to your first child on the first day of school friendly bus ladies. Ms. Jacqui and I patted each other on the back, grabbed a bowl, paper towels, and plastic bags, I gave Ben a dose of "no more pukies" put the poor little guy on the bus and waved goodbye. Then I burst into tears and nearing fell down in the driveway from sheer mental and physical exhaustion not to mention a heave dose of guilt. I owe the bus ladies big gifts at holiday times.

It got better. Every day. Lot's of talking about everyone being nervous, about the difference between nervous stomach and sick stomach, and about how everyday he would know more about school and that would make him less nervous. Yesterday I got to take pictures. Everyday before that I was up to my elbows in Ben and pictures weren't happening. So I missed the first day but I got these:

And these from his very first bus ride (including riding the lift!) one week after his third birthday. See that smile?!?

And this one of his second first day on the bus when he was 3 1/2. See that smile?!?

And even this one of his third first day on the bus when he was 4 1/2. See that smile?!?

You see why I thought this wouldn't bee such a problem. Ahh well. All's well that is-going-well-right-now : )

Happy Anniversary

2008-09-03T23:49:00.003-04:00

Eight years ago I married the love of my life. I love him more today. Happy Anniversary Dave. I love you

First Day of Kindergarten

2008-09-02T21:26:00.004-04:00

Just a quicky to let you know that Ben had a great day at school today.

After all the grief and tears that have followed us around since Safety Town, it was a great day. It was orientation day so Ben got to take Mom, Dad, Kiera, and Nana to school. It was a two hour long get-to-know-you-fun-day. And it was fun! Yay!

Think happy thoughts for our little man tomorrow. He is getting on the bus for his first "all day" and he can use all good energy he can get.

And Then There Was Safety Town

2008-09-02T11:07:00.000-04:00

*I though that this should be posted before my Kindergarten post. And then there was Safety Town. This whole crazy story actually begins decades ago when the little girl my mom watched over the summer got to go to Safety Town. I was going into first grade but my little friend was going into Kindergarten so she got to go to the brand new magical world of Safety Town. There was a little town just my size, there were big wheels for everyone, there were play fire fighter helmets, and friends, and snacks and WOW! I was only able to see snippets at drop off and pick up but it looked like kid heaven to me. And I wasn't allowed to go. This magical camp was offered for the first time that summer so I had missed my chance by a year. I felt like I had been rooked. Fast forward 16 years and my first preschoolers were racing in to tell me all about wonderful Safety Town. The little town, the big wheels, the new songs, the go, go, go! It was so much fun to see the shine of excitement in their eyes. Fast forward another, aw, who cares A LONG TIME, and I have before me a little boy who I will do almost anything to provide the opportunity to enjoy life. I had a decision to make. He can go to Safety Town. He can be a part of that fun pre-Kindergarten excitement. But I didn't sign him up. Like everything else, it was going to be a bit of leg work and at the end of the school year I didn't feel I had it in me. So I put it off. Then we had Summer Camp. The best experience Ben could have asked for and I decided that we, meaning he, was ready to give it a try. So I bit the bullet and signed him up. A lot of stress (on my part) was put to rest in one conversation with a kind woman who spent all sorts of time making sure I knew that they were all set for Ben. First day was pretty good. Drop off was a bit overwhelming but smooth and at pick up he looked a bit dazed but said that he had had fun. The second day I had to pick him up after he cried so hard that he vomited. That was the beginning of the end. Every moment he spent in my presence after that he waged full out emotion warfare. "Mama, I'm too tired", "Mama, it's too hot", "Mama, I'm hungry"(that's when I realized that we were at war), "Mama, Don't leave me." "Mama, Don't make me go", "Mama, Safety Town is not the place for me" I had backed myself into a corner. We were going to start Kindergarten in a couple of weeks. I couldn't just let him cry and vomit so he didn't have to go to Kindergarten. But for goodness sake! He was acting like I had tossed him out in the snow and shut the door. So I spent a some time at Safety Town and reassured myself that everyone was doing things "right" which they were so we kept going. He was enjoying himself there, just giving me all sorts of grief when he was home. Guess what? His did it. Made it through to the end (it was only 5 days, only ha!). Made it through to the graduation. Walked up on stage, sang every song, did every dance, said every line and smiled, laughed and never once cried at any of the clapping. Best of all he walked up, all by himself, to get his diploma. Everyone clapped. The teachers, all of the volunteers, other parents who know us and even parents who don't know us but knew that he had had a hard time in the beginning. His teacher actually cried at how far he came in a week and how brave he had been.

So he made it through smiling and laughing, got in the car, looked at me and said "I don't want to go to Kindergarten!" What did I say about the beginning of the end? Crap!

Late Nights

2008-08-20T01:08:00.002-04:00

What do you do with the pain of fear that sets so heavy in your chest that you feel you could physically remove it? What do you do? I push it away. I "deal" with it which is to say that I keep living and it fades. Which I guess is also saying that I don't deal with it at all. I try not to cry and hope that it passes quietly. I've dealt with it. Does that count? I know the cycle of grief. We are in fact old chums. So I know that it will move on it's way, in it's way. But what do you do when the pain and fear you feel for your child drops you to your knees and wracks you with silent sobs, silent from all the years trying not to wake others with your tears. What do you do? I let it cry it's self out then I shed a few more tears for all the mama's out there who have silently cried with me.

What She Said

2008-08-08T12:09:00.003-04:00

New Kieraisms-

Ooh... (Imagine an innocent sound of wonder. This sound is heard after any instruction about what NOT to do or why. Cute the first time.)

What I say you? (Kiera's version of my "what did I JUST say to you?", I'm not proud)

All the day... (the phrase used instead of "all the time" or "a lot" or "so much". Such as "I been missing you all the day" or "Ben I've been loving you all the day!" or "My belly's been making me nuts all the day.")

That's the deal. K? (Pretty self explanatory)

But, but mahhahhm. (Imagine mom as a three syllable whine.)

Sorry mom. I so sorry. (Following any disaster no mater if it is on purpose or an accident)

And my personal favorite-

I just love you sooo much! (Sigh...)

My First Video!

2008-08-06T01:28:00.002-04:00

Make photo slide shows at www.OneTrueMedia.com

Donations Anyone?

2008-08-03T11:43:00.003-04:00

All those who think that we are in desperate need of wardrobe expansion say "I"!

All those willing to donate to the cause, drop me a note.

All those in my shoes who can't believe the enormous piles of BORING laundry threatening to bury them at every turn, I say- I feel your pain!

Here's to beer before noon on Sunday!

Camp

2008-07-25T13:22:00.005-04:00

Ben just finished the last day of his very first camp. To say it was a success would be a gross understatement. It was an enrichment camp which means that it was developed and run by a recreational therapist from a local hospital. The camp staff was made up of a physical therapist, an occupational therapist and a speech therapist with a whole mess of college age volunteers that are all majoring in some sort of pediatric therapy. To top it off, the camp is for kids of varying ability who where not receiving therapy over the summer. In short a whole bunch of kids just like Ben. When we walked into camp the first day Ben immediately saw adults that he recognised from his former therapy department and he was greeted with huge hugs, smiling faces and a really cool project to get started on. I was dragging my feet, not sure about letting my baby go, he just gave me a "See you later mom." and would have booted my out the door if he wasn't so busy. As I was walking out I saw two other little guys walking in and they walked just like Ben! I never see kids that walk like Ben. It seems that I was not the only one surprised because the next day I spoke to two other mama's who said that they called their spouses to tell them that there were kids who walked just like theirs. One of the kids lives about 1/2 hour away (not bad) but the other lives right down the street form me! How do we miss each other in this shrinking world? Our boys are even riding in the same bike program, just at different times. Seriously, how have we not met? Anyway, Ben came home the first day just bubbling over. So many activities to share, so many songs to sing. They even had a music guys there and he had a little guitar for every child to play. It was like a dream come true for Ben. The boy spent one day, one day with kids just like him and came out of his shell more than I have seen, well, ever in 24 hours. No pressure, no explanations needed, just freedom to play and learn and grow. He didn't even mention any therapy because he didn't notice it. I'm telling you, it was amazing. How do you describe the sight of weight lifting from a burdened child's shoulders? He was free. I wish this sort of experience for every child with challenges. A freedom from their differences. Heck I wish it for all of us, everyone. I only wish it could be every day, forever.

Alone

2008-07-21T13:52:00.003-04:00

I am a social person. If fact, we are a pretty social family. I get somber when I am on my own and can't wait to swap stories about the day with friends and family. I am however, a grown up and can find all sorts of ways to offset the feeling of solitude. When Ben is alone, you can almost see the words lonesome on his face. It tears at my heart to see him feeling alone, left out, left behind, excluded, overlooked...So I do my darnedest to keep that look off of his face.

We had two situations occur within a week of of each other that encapsulated five years of experience. They were something like the Cliffs Notes on Ben's story of isolation.

The first happened at a local summer festival. We were just arriving and I caught sigh of a family that we met at the Therapeutic Riding barn. Mom, dad and two boys right about Ben and Kiera's age. Their oldest has CP and uses a wheelchair. It was one of those things that judging from the direction they were moving it was pretty likely that we were in their sight line. Figuring that they just didn't recognise us, I ventured over with Ben to say "hi". While I was reintroducing us, three other families joined the group, each family had a child in a wheelchair. The four other families said hello to each other and just as if an invisible wall fell from the sky, we were shut out. I could actually feel the push. So we stepped back toward the group we were with and there we were, caught in the middle with no where to go. Pushed out of a group Ben often feels more comfortable with yet not able to join in with our group of kids who were tearing in and out of the crowd. He was alone.

The second happened when we were camping. We had just arrived and put up the new camper. Ben and Kiera were so excited and ready to play. They couldn't wait to get on their new scooters. We found a scooter that Ben can balance and take little scooting steps. Very cool, whole other post. So there we were ready to give it a try, we made it past the camper toward the road and Ben stopped dead in his tracks. What he saw were four families of kids racing back and forth on bikes and scooters. Kids as young as Kiera on two wheelers and Razors. He wouldn't budge while he watched them tearing up and down the road. He actually stood stock still for about two minutes (a really long time when you're the mama and the seconds are ticking by as loud as thunder) then stepped off of his scooter. He turned to me and said "Can I go into the camper now please." Unable to make his body work the way he knows that it should and not yet willing to let go and play with us, the ones that don't care. Alone. Again.

The Words Of A Two Year Old

2008-07-18T01:03:00.002-04:00

Kiera- "So Mama, you see the thing is Ben was tired and so he went to bed. But I was hungry so I'm gonna eat my bagel with you and Daddy then I go to bed. OK?" Use your imagination to put one hand on her hip and one had out front holding her imaginary tray and make sure you add her head bobbing around too. Kiera-"Well Mama, you need to wait cause I am going potty first. And then you help me and then you go potty" (imagine LOTS of sass) Me-"Kiera, I am waiting for you to finish because you are already on the potty. Next time you can speak to me kindly. You really don't need to tell me what to do. I'm pretty good at waiting my turn. You're not in charge of everything." Kiera-"But Mama, when do I get to be in charge?" Me-"When you grow up and have your own kids, then you get to be in charge." Not my proudest parenting moment but who expects to be quizzed on this stuff by a two year old! Kiera-"OK, nigh, nigh Ben. I love you. You sleep type and stay in bed. You call me if you need me. Sweet dreams." Ben-"I need you Kiewa!" Kiera-"Mom, did you know Ben's my best friend." Sigh...

Camping

2008-07-15T18:28:00.010-04:00

Dave and I love to camp. Always have. It is just one of those things that we agreed on from the very beginning. We have been camping for the last few summers with the kids and have been wrestling with the idea of a pop-up camper for about four years. A few weeks ago we went camping with some dear friends and their kids. They have a pop up. We made it through one evening. Then these came rolling in

and it rained and hailed then rained and hailed some more. Then our campsite looked like this.

Needless to say we spent a lot of time in their pop-up.

We had lot's of fun anyway

but it definitely was the trip that pushed us over the edge. Soooo...Months of research and a darn lot of luck and now we have this

I'm so excited! (I know I'm a sell out dork, but I'll be dry!)

Vacation (part 2)

2008-06-27T15:17:00.004-04:00

Still stuck on the last vacation and really need to wrap it up so I can post about all the other fun stuff we have been doing.

Last I wrote we were taking off to Alabama. We made that "little" side trip to see one of our nieces graduate from high school. I am so glad that we made it! It was great for Ben and Kiera to see family that they don't get to see to often. We saw "Alabama big cousins" as Ben has labeled my sister-in-laws girls, Auntie Kim and Grandma and Grandpa! It is a wonderful thing to have great in-laws.

The graduation itself was tough for Ben who doesn't like the clapping and cheering and tough for Kiera who can't sit in a chair for 15 minutes let alone a couple of hours, but totally worth it. We were able to let the kids run around in an outer area and then come back in for the actual walk. Ben was so excited that it was his cousin that he was watching that he gave up being mad about the air horns.

A funny thing happened to me while we were there though. I felt really old. I joke about it now and then but this really drove it home. It is not just that time has passed. It was watching all of the kids with there bright faces, excited about jumping into the next stage of there lives. Can you imagine? To have that feeling again. The feeling that your whole life is before you. That your choices will determining your path. That your future is bright with shining adventures yet unknown. It made me feel old, and a bit sad that those feelings have changed for me. I am no longer lulled by the phrase "everything will be fine". I am at a place in my life that that is OK though. Fine means something different for me now. Maybe that is what I long for. An innocence to loss and pain.

It was easy for me to put the thoughts aside and catch some of the contagious excitement. That and a visit to a Chocolate Bar and all was well for me : ) I guess that is something else gained with age, quick recovery.

Love to you Alabama girls!

OH MY GOODNESS!

2008-06-23T11:10:00.005-04:00

I have gained 13.5 pounds since my last Weight Watchers meeting!

This is my attempt to put that number glaringly in my face so that I will do something about it. It has been fun eating without thought to the consequences but for goodness sake!

My clothes don't fit!

My bum is out of control!

Something must be done!

So...

Goodbye whole bags of popcorn...

Goodbye Skittles any old time...

Goodbye bacon and smokies when ever the kids have them...

Goodbye as much dressing as "accidentally" comes out of the bottle...

Goodbye white chocolate mocca's...

Goodbye full fat chips and dip...

Goodbye bowls of nuts...

Goodbye achy knees...

Goodbye embarrassment...

Goodbye fat pants!

Hello paying attention...

Hello accountability...

Hello motivation...

Hello positive self image...

Hello self esteem...

Hello energy...

Hello healthy me!

Who's with me?

Shall we get healthy?

It's worth it!

I'm starting right now!

uhhch...

2008-06-17T10:30:00.002-04:00

OK, I'm not one of those people who thinks the day is doomed by one bad moment. I have two kids! Mornings are full of one bad moment. But when I went to wrap my hair in a towel after my shower, and was slapped in the back with what was obviously a towel soaked in toilet water (note to self-step back a bit further from the potty when flipping hair over to do the towel wrap) I had an eerie feeling that we may want to stay home today. The biggest reason being that I am now wearing what I hope is clean water but may be Kiera pee on my momentarily clean back. I was luck to get one shower today. You think I'm gonna get two?!?

Vacation

2008-06-17T00:24:00.003-04:00

I seem to have an issue with vacation. I come back recharged and refocused but then never post about out trips. It's funny because when the cool things are happening I think "I have to post about this" but by the time I get back into the grove, life takes over and the time to post slips away.

(On a side note-can you believe this! I swear, the boy was 90% more stable being chased by waves than I have ever seen. Fantastic!)

Any way-I'm hoping to get bits and pieces out 'cause there were some great bits and pieces on this last one. I have to get moving before we go away again. So...

We were spending our last few hours on the beach. Our bags were in the car, we were checked out of the hotel and we were grasping at our last minutes of freedom before getting back into the car for the 11 hour (turned out to be 13 hour +) trip to Alabama. Ben was walking, yes walking (OK tipping, stumbling and staggering but still upright!) through the sand toward big mounds of sand that had been pushed up around the board walk. From just down the beach I heard a mom say to her two boys "There's a boy who might want to play. Why don't you see if he wants to play on the hill. He might want to penguin slide with you." Sure enough there went her boys, running up to see if Ben wanted to play on the hill with them. When Ben didn't answer very quickly, they waited.

There are so many amazing, and sadly, extrordinary things wrapped up in those two actions. First, she saw him walking. It is very obvious that Ben walks differently and she not only didn't shy away she actually moved herself into Ben's world. Then she encouraged her children to move in too. And she came up with something that ALL of them could do together. To top it off, the boys waited. They waited and wouldn't you know it, Ben answered. The boy who has so much trouble engaging, was given a chance to speak, and did.

I can't tell you how amazing this experience was for all of us. Well maybe it was just fun for Kiera but it was amazing for Ben, Dave and me. At one point the older of the two boy's came to ask why Ben didn't talk as fast as he did. So I told him, he said "OK" and went back to play. The absolute best part of the day, and to be honest one of the best moments I have ever had, was when the same little guy (we'll call him Big M) called to Ben, "Come on Ben, lets go over here." Ben said "I'm coming!" Big M said "Come on Ben, hurry. (little pause) Can't you run Ben?" to which my little hero answered "I can run Big M, see!" and proceeded to run across the sand to play with a friend.

Our four kids played for about two hours before it was time to go. And about half an hour before we left we learned that they have a cottage 40 minutes from where we live. No kidding. So guess what we did today... we played with two new little friends we met in Virginia Beach, in Michigan.

Sigh...

2008-06-14T18:30:00.002-04:00

As I watch Kiera play in the back yard with two little friends my mind is pulled inside where Ben is sleeping. He is so tired that he is sleeping through carefree playtime on this beautiful evening. My heart breaks a little, that he doesn't know this level of carefree. It breaks a little more for me to know what he is missing. Even if he doesn't.

What's For Dinner

2008-06-06T08:39:00.003-04:00

I was putting together one of those breakfast-for-dinner dinners and Ben was sing-songing in the background. After listening a bit closer I realized that he was saying "where is the R, I need a letter R..." and so on. He quietly let me know that there is no R then moved on. When I finished at the stove I turned to find this on the fridge:

He made his own french toast.

Guess I better find the letter R.

Whoa! Slow Down!

2008-06-06T03:38:00.004-04:00

Ben lost his first tooth!

The dentist noticed the two bottom teeth were a bit loose at the last appointment (My teeth are going to fall out? It's OK buddy they're supposed to. You'll get grown-up teeth to take there place.) but so soon? When the little bugger got really loose we gave him the pep talk "If it comes out spit it out, try not the swallow it." but wouldn't you know it, it came out in his sleep. He swallowed it. Being that it is really hard for him to spit anything out, we were prepared for it and had already told Ben that he could write the Tooth Fairy (Tooth Fairy? What Tooth Fairy? You're tricking me mama. No, really Ben, she comes and leaves you some money when you put your tooth under your pillow.) a note. He woke up, and was just moving into the living room when he started spitting like crazy. So I asked what he was doing since that is not usually how he begins the day and he told me "I have grown-up teeth mama." After a few questions we established that he had just noticed that it was gone so started spitting just in case it was in his mouth somewhere. No such luck. So a note was left and sure enough Ben got a shiny dollar coin from the mysterious but now very cool Tooth Fairy.

Pants

2008-05-27T15:06:00.002-04:00

So we get back from ten days of romping all over the US, unpack the car, eat our first home cooked meal in days, lay the kids down in their own beds and my final thoughts on the trip- I have to get out of these pants that are so freaking tight from eating so much good food! Can't wait to share pics and stories. It was great.

Tired

2008-05-08T23:36:00.004-04:00

I'm just tired. That pretty much sums it up. I'm really tired. It is a crazy exhausted thick sort of feeling that I have had explained as a physiological reaction to living for extended periods in survival mode. Every now and again I am just drained. Heavy. Slow. It seems that my body is chastising me for all of the running at or above the psychological red line. When this is your life you try not to think of it as hard all of the time or it gets harder. You know what though? It is hard. Doing the physical job of a 5 year old as well as you own is hard. Being the constant motivator, reminder, self esteem builder, supporter, positioner, stretcher, exerciser, cooker, feeder, nose blower, wiper, clothes changer blah, blah, BLAH, BLAH! Not to mention that I have to be the home PT, OT, ST and teacher. I recently wrote out the stretching that we (Ben and I, yes he gets me to stretch too) do to let someone know what we are doing in a day. We don't do it all at the same time and I usually just work in bits and pieces while we play. Most of what we do is still fun but crumb, it's a long list. Here it is... PT Stretching -On back bicycle legs -On back hamstring stretch With opposite leg free to move With opposite leg straight on the floor -Abductor stretch Both legs stretch up and out into a “V”. Use adult body to lean in and press into stretch. -Heel cord stretch -Long sitting straight leg (use lap desk for activity or any TV time) -Long sitting open (hands forward for activity between legs) For both long sitting: maintain good leg position (feet and knees up or out) and good hip position (up on his sits bones). Use vertical surface to support back or own body sitting behind Ben. -Row, Row, Row Your Boat Facing Ben with both sets of legs open in a “V”, adult calves over Ben shins. Maintain good positioning of legs (knees straight, knees and feet pointed out). Allow Ben to rock back and bring himself to center (sit up action) then smoothly pull forward to accomplish hamstring, hip and abductor stretch. *change end of song to “if you see and ______, don’t forget to scream. Ahhh” let Ben choose what he sees. -Butterfly position Flap wings (fast and slow) “Smell your stinky socks” -Move into rocking chair from butterfly Tuck head forward and adult rocks Ben back onto his back then forward back to the tucked butterfly position. Maintain tuck and assist to maintain straight rock (don’t allow to roll onto sides). Assist as much or as little as Ben requires. Sometimes you have to do it all, sometimes very little. -Move into starfish From tucked butterfly roll onto left side, roll onto back, roll onto right side then back to tucked butterfly. Repeat equally in both directions. -Ball work Bounce on the ball with legs open (*Horsey, Horsey)- Allow for rocking to the side with Ben catching himself and righting to center. Bounce with a fall back- Encourage Ben to pull himself forward to straight (super sit ups) repeat as tolerated (*Ride a Horsey) Super Man catches- On belly rock forward so Ben has to put hands out to catch. -Half stand stretch Adult seated with one of Ben's legs straight and planted other leg bent at 90 degrees over adult leg. I took out the words to the songs that we sing for each stretch because otherwise this post would be twice as long. I didn't even get to typing out the exercises that we incorporate. I don't have time because of all of the creative therapy we are doing! It is all pretty much still fun and games for them, and I say them because Kiera is TOTALLY on board with this. But for me it is a lot of work to make it fun. And sometimes I just don't feel fun! And for goodness sake my house is a mess. I don't need a cleaning lady, I need a come over everyday and tidy up, do dishes and laundry lady. The dog started barking at dinner time and I was fully prepared to hide rather than open my door to show anyone my house. If you know me then you know it must be bad. Now it is late and my head is just swimming with the lists of things to take care of and the appointments to make (kids are taken care of but mine are always behind) and chores and projects to be done. Physically drained. Mind racing. We're going on vacation in 8 days. Thank goodness. I can make it fun for that long. Then it's maid service here I come!

2008-05-03T21:40:00.003-04:00

I have been tagged for the very first time by Billie and Allison. Both are super duper twin mama's and women I am lucky enough to call my friends. Billie is (as may be the case for more than a few of us) the blog that got me started and Allison is the person who told me that Billie had a blog in the first place. I may have actually been the last to know ; ) Anyway, it is the 7 Random Facts thingy and I am sure that I can think of something so... Here are the rules: 1. Once you are tagged, link back to the person who tagged you. 2. Post THE RULES on your blog. 3. Post 7 weird or random facts about yourself on your blog. 4. Tag 7 people and link to them. 5. Comment on their blog to let them know they have been tagged. My random facts: 1. This is the first time I have ever posted a link on my blog. At least in the cool way that doesn't show the whole http...I seriously never knew how so avoided links like the plague to avoid the embarrassment. So here I am, tagged for the very first time and had to swallow my pride and ask my hubby. He got me pointed in the right direction and then I, yes I figured it out on my own. Did I mention that I dropped "Intro to Technical Computing" for fear of failing it my first year in college? 2. When I was little I wanted a monkey (who didn't!). Then I decided that I wanted a squirrel. Since squirrels are hard to come by (and much to my mom's dismay) my dad helped me get a pet skunk. Yes, I had a pet skunk that my sisters boyfriend named Skippy. I got him when he was 4 weeks old and de-skunked, carried him home in the palm of my hand and bottle fed him round the clock for weeks. He was pretty cool and lived to be a cranky old fat skunk man and alas is buried in my mom's back yard. 3. The first car that I ever bought was a red 1969 VW Beetle. It cost me $500. It was soooo cool but soooo loud and soooo cold. In the winter I would have to scrape both the inside and outside of the windshield while I was driving. Now that I think of it, I am lucky to have survived that car. 4. I have had cancer. So now I have no thyroid. I don't recommend it. I have been cancer free for 7 1/2 years. 5. My body and my appetite want me to weigh about 40 pounds more than I do right now. I love to eat. I LOVE TO EAT! Food is my friend no matter the emotion or stress level. I have had to fight for every pound that I have ever lost and have only succeeded in losing weight at about 1200 calories or less. I am a weight watchers person and when I reached my goal weight (oh, this was before kids) I learned that I maintain my weight at about 1400 calories. So I am about 25 pounds up from that goal and not sure that I ever will be, or want to be that small again. Did I mention that I love to eat? 6. I started ballet when I was three years old. I went up on point when I was 11 and started jazz when I was 12. By the time I was 14 I was walking to my studio from school four days a week and dancing on Saturdays and Sundays as well. This was the same age that I knew that I would never go anywhere with it (I had hips and boobs) but stuck with it until my second year in college. I miss it terribly. Almost every day. I had ten pounds to lose then, and I weighed 120 pounds. Times have changed a bit : ) 7. I don't have my degree. I went to school for engineering, was there for 2 years, hated it, my dad got sick so I came home. I was a preschool teacher for 12 years. No, I was a good preschool teacher dang it! Don't look to my kids for proof, I have lost control of them. Anyway, I want to go back to school and am completely terrified so have found may ways around getting started. It will only take me about 7 years...uhhhh. There, now I am a really blogger. You got to read some really random facts since I have never done one of these before and probably learned more than you wanted to. Tag, you're it Heike , Sparx , Kellie, Shannon, and...well, I am having a heck of a time finding people that haven't been recently tagged so I'm heading to bed with only these four. Did I say that? I am going to bed with only listing four tags. That's a bit better. Good night all!

New Joke : )

2008-05-03T16:02:00.002-04:00

Ben's new joke: Knock! Knock! Who's there? Gouda. Gouda who? Gouda to see you! HA HA HA HA HA (I laughed my head off then asked him who taught him that joke. He answered "I did!" Hmmm. I'm impressed if not amazed.)

Thank You! Thank You!

2008-04-30T16:30:00.004-04:00

Thank you so much to everyone who supported our "March For Babies".

Dave and I put out emails on Monday and Tuesday of last week with $10 on our sponsor form. In thirty six hours our amazing friends and family put us over our goal of $500. When we walked on Sunday we had raised $940. In less than a week our loved ones took on this cause that is so close to our hearts and we can't tell you how moved we are by everyones generosity. We walked with St. Joseph Mercy-NICU team and our contribution brought the team total up to $6945. Wow.

The day was chilly but the walk was beautiful. Thank you to some dear friends for taking it slow with us. We also appreciate the help with all of the extra wheels we needed and the extra hands that we needed to keep track of Kiera and Ben as they went in opposite directions. It was so great for Ben to get a chance to walk a bit and even better to see him walk across the finish line.

We had told Ben that we were going to "March For Babies. That morning he told us that he was marching for babies that were in the NICU just like him. We never told him that. He just picked it up. Pretty cool : ) Kiera had other things in mind as to what a "March For Babies" was so brought her own baby to march for. Being that it was a chilly morning and the baby was under dressed, Kiera carried the baby around in her coat for most of the day. Pretty cute : )

Thank you again for supporting this wonderful cause everyone!

Good Friends

2008-04-23T15:54:00.002-04:00

Did you see that? Did yuh? Did yuh? I sent an email out about the March For Babies and in less than 48 hours my super friends took us over our goal. Less than 48 hours. It says volumes about the generosity of my friends but also speaks to the effect that Ben has had on their lives. Wow. I am so thankful for every one of them. So thankful.

2008-04-21T03:32:00.003-04:00

This is our one week reminder to please support our fundraising goal for the March for Babies (previously Walk America). What? You never saw our other solicitations? This is the first you have heard that we are walking on April 27th for the March of Dimes? Then we all came back from our fantasy time and remembered that we are dealing with Shannon and Dave. Hey at least I am getting this blog up BEFORE the walk.

Seriously, if you are reading this you probably know why we are walking. Growing up, my mom literally collected dimes for the March of Dimes and I never paid much attention. It wasn't until I saw the heroic measures taken to save my early baby that the March of Dimes MEANT something to me. The steroids and surfactant that Ben received before and after he was born are a direct result of March of Dimes research. These measures alone may have helped to keep our little guy alive. That is all I need to know and these are just two of the medical advances that March of Dimes research is responsible for.

Every year 120,000 babies in the US are born too soon. Many don't survive and many of the babies that do survive, including our amazing Ben, do so with life long disabilities. We are walking to try to change this number. We are walking to celebrate our baby who was born too soon.

This year our goal is $500. If you can give, please do so by following this link to our donation page http://www.marchforbabies.org/personal_page.asp?w=191003991&u=skyyshan&bt=2 (I have NO idea how to do that fancy click on the word thing) or click on the badge posted on the right. If you would like to walk with us we would love to see you.

Anything that you can do to help support this cause that is so close to our hearts is appreciated. It would also be nice to get the amount on my goal tracker above $10. It is really starting to make me feel like a looser ; )

This boy

Should have never had to go through this

2008-04-20T18:49:00.006-04:00

I just walked in my front door, home safe from a mad weekend dash to Kentucky and the first thought that ran through my head was "Thank goodness no one had to come in here!" It seriously appeared as if we were taken from our house and put up quite a fight on the way out. We made the 8, er 11 hour trek to Tennessee to see Dave's parents just four weeks ago (a whole other blog that hopefully I'll get to some day) so I wasn't sure how the kids were going to do. When it was just Ben we could go anywhere, do anything because he was such an agreeable guy. When Kiera had her say, we just didn't travel as much. I think the trip where I looked at Dave with tears running down my cheeks and told him that I wanted to throw myself from the car to get away from the constant screaming, closed that door. But we are all older and better at expressing ourselves and we are taking some bold steps toward family travel. Hence the trip to Tennessee followed closely by the trip to Kentucky. The trip (and the drive for that matter), fantastic. This is our 4th annual trip to Lexington to visit with seldom seen and much missed cousins. There is so much background here that I could write for days but the short version goes; I remember seeing all of my cousins (there are only four) when I was 2ish but the memory is of playing in a suit case. I saw bits and pieces of two of my cousins through out the years and then when my little spitfire Muner (my dads mom) died. My dad died just a few months later and we packed it up and headed to Kentucky. For the first time in over 20 years all six (four cousins, my sister and myself) of us were together. It was new and wonderful getting to know the grown ups that my cousins turned into. Our time was short, we said good by and again time passed quickly. Then their mom died and again were came together to talk and laugh and fill in where we left off. That began a yearly trek to Kentucky. The gathering is amazing. We have missed so much of each others lives that you would think that we would need time to reestablish any sort of bond. We don't. It's an easy sort of happiness that allows us to just pick up as if we had dinner just last week. We talk quickly and overlap our stories trying to get and give all that we can in such a short time. We hug and laugh and drink wine until it runs out. We step away at the end of the night carrying sleeping kids and looking forward to the morning when we can start all over again. Then, it is Sunday and we take too long to say good bye. Reluctantly giving hugs and more hugs and begin to think of how quickly our lives will take center stage and how long it will be before we get to sit and talk of the little things with each other. We say good bye at the hotel door and my wonderful sister turns around and makes our reservation for next year. Time will pass but come next April it will feel as if we saw each other just yesterday. I can't wait. I love you guys.

I'm In The Wrong Business

2008-04-15T17:04:00.003-04:00

I just got our first "Insurance Pending" notice from our increase in physical therapy. It covers March 5th thru March 28. That is 7 visits. It is $2,002. Holy crap. Time to dust off the boxing gloves and prep for an "Insurance Denied" notice.

The Straw

2008-04-11T09:48:00.003-04:00

The straw that broke the camels back. A phrase that had little meaning to me as a child is lived out on a regular basis in my house. When I first heard it I remember thinking "It's just a straw." while visions of fast food cups were running around in my mind. Just a tiny little thing would have no impact on a camel. Then I learned that we were talking about straw. Literally the stem of the wheat that grew behind my house. Oh...Nope still didn't seem enough to send the camel over the edge and so I began thinking about the author of the saying and what camel we were talking about. I had ideas of a weak, sad old camel just keeling over dead causing some man to think that the straw had done the damage and not the fact that the camel's heart stopped due to being 110 years old. I had thoughts of someone who just wanted his words to live throughout time so kicked the poor beast over. Then I grew up a little and thought I had an idea of what we were really talking about. The 4th paper assigned in two days, all due on Monday. Then I grew up a little more. Totally out of money, rent is due and my car wont start. Then I grew up some more and grief taught me its own lessons. Then I grew up even more and found that the "straw" doesn't have to be the great big things on top of great big things but just the tiny packet of taco seasoning that is missing from the cupboard when dinner is 5 minutes away from on the table. That's it. Not a bale of hay just a simple straw that takes the wind right out of your sails and makes you want to run screaming from your home note in hand stating that the straw has finally broke the camels back and could you please go check on my hungry confused children.

2008-04-03T19:14:00.011-04:00

As I listen to my dear, sweet daughter scream to wake the dead while thrashing her body into everything that didn't get away fast enough (so sorry Dave) I have some thoughts about our day...

You may not get as angry about getting dressed if you would keep your clothes on. When I help you put on your clothes because we are going somewhere and you take them off, we need to put them back on. Every time you take them off. If you take off your clothes three times then you will get dressed four times in the morning. Nakey bottom is not an acceptable outfit for school.

You will not get a positive response to phrases like "get it Mama!", "No Mama!" and "COME HERE RIGHT NOW!"
Taking your brothers milk is not funny and will make him yell. So will eating his food, taking his toys, hitting, pushing and bugging him while he is on the potty. It also just sucks when you run to the potty so that you can get on first when he says he has to go. Give a guy a break.

If you ask for a cookie and I pass you a cookie then you yell "No!" I actually think that you don't want a cookie. The look of confusion on my face when you start crying because you don't have a cookie is real.

Wrapping paper belongs on the roll unless you ask otherwise and is not as pretty around a present when it has been crumpled in a ball.

Toys are for playing with. Simply transferring them all around the house is not really a game. It is a chore. For me. And I don't like it.

Hand soap is for hands. Just two small hands mind you and if you use the whole pump of soap you are not really more clean then after the first washing. Also, if you feel the need for clean feet please ask for help. Sitting on the counter isn't safe. The "soap for your hands guide" applies to feet.

A sandbox is made to hold sand. Not just to store it until you have time to dump it on the ground. And when I ask you to keep the sand in the sandbox I expected an answer like "OK" and wasn't really excited about you telling me to "Bewax (relax), Mama".

55 degrees is not no-jacket-bare-feet weather.

Sleds don't work on dry pavement. Even if you scream and cry.

Snorting is pretty funny but I will tease you about it when you are older.

If you wander off while outside you may get lost, hit by something with wheels or run into a wild animal. So when I ask you to come back I'm not being mean. I really am trying to protect you.

If you chase the animals while screaming, or not for that matter, they will run away.

Please ask for help if you have decided to use the potty chair. Cleaning pee pee and poop off of the floor is no fun. AT ALL.

While standing on the chair at dinner with no pants on, dumping water on the floor and screaming into your cup may be funny, we won't laugh and you will get in trouble.

Please only unwrap gifts that are intended for you.

Please sleep in your bed. Wandering into my room every night is not a good choice and sleeping on the couch when you feel like it scares the daylights out of Daddy. Its a comfy bed, good blankets, nice pillow, use it.

Lastly, because of days like today (yes this all happened today), when you get older and bigger and you think that you are the center of the world I will show your prom date this picture.

Or maybe this one.

I love you.
Love Mom.

Two Steps Back, One Step Forward

2008-03-27T02:24:00.002-04:00

Well, he did it. I say he because when it comes right down to it, all the coaching and pushing and pulling and reminding and blah, blah ,blah doesn't mean a thing if the boy doesn't do the work. So he did it. The threat of medical intervention to deal with his spasticity has been removed. His range of motion has greatly improved in his heals, quads and aductors as well as a few other muscles that I can't come up with the names for but by golly know how to stretch and strengthen them! We took the two steps back to retrain muscles away from bad habits and came away with greater strength, increased flexibility and unfortunately a much more wobbly gate. Turns out that if you attempt to re-teach a child to walk correctly they actually have to learn how to walk again. So we have a wobbly but much better gait pattern that is improving daily. Sounds good to me. Ben even agreed that he would keep working hard when the doctor asked. Then gave her a hug and told her he loved her. This is something Kiera said to me today when she was trying not to lay down for her nap: "Mama, I have to go find my Elmo before I go to bed. He is out here but it's OK you can stay there. I'll be right back." I need to get this stuff on tape. Her Doc just doesn't believe that she is conversational. What you should never say while holding the hand of a child of any ability: "He's just different" Not to people you know, not to strangers, not to other children. A child should never hear himself spoke of as an object that needs explaining. Never.

Happy St. Patrick's Day!

2008-03-17T12:28:00.005-04:00

Happy St. Patricks Day all!

So much to write, so much to share, no time at all so...

I'll leave you with this...

Oh yea, I'm 35 now.

no, NO, NO!

2008-03-12T22:36:00.002-04:00

I hate the word cancer. Everything about the word, the way it looks the way is sounds and the way it feels when you say it. I hate what it means, what it does to a persons hopes, how it makes you feel fear like you have never felt it before. How it means that your life will never be the same. Never. Even if you recover you will forever be touched by cancer. I just heard that a person that I care for very much has cancer. She is a new friend. Which in my case means that I didn't go to elementary school with her. She is a friend that came into our life because of Ben and stayed a part of our life because she is wonderful. She is one of those people who doesn't need to have her feet in the special needs world but does because she cares so, so much. She has an amazing talent for kindness that you can see in her work and in her life and I hate, hate hate that she is facing this battle. I had cancer. Thyroid. So now I have no thyroid. I only think about it every time I take my meds so...everyday. I remember thinking "Is this really what is supposed to kill me?". Answer was apparently no, or at least no right now. I have been cancer free for a little over 7 years. Which means that my mom has been cancer free for over 8 years. She is a cancer survivor too. Breast. My grandmother had breast cancer as well. I just found out that a woman I know had thyroid cancer. I noticed our matching scars. Dave's old boss just found out that he has "bad" colon cancer. I think that bad is man speak for advanced. Everywhere I look people are being devastated by this word. Lives forever changed, holding onto scars that will never fully heal because the word strips all those it touches of there sense of balance, of there sense of right. I am so afraid for her. My heart breaks for her and her new husband. Pray, in any way, for her. I hate cancer.

Too Much Help

2008-03-07T23:20:00.005-05:00

I want to be approachable. I want for people to offer a hand. I want people to interact with Ben. In other words I want everyone out there to treat us like they would any other mother and son they see. Except for today. I, in my ignorance, thought it would be easier and faster to go into a kid luring french fry haven at lunch time today. The drive thru line was so, so long and we were on a tight schedule to make it from physical therapy to school. I really had no idea that Ben would see the play place and walk, no run, away toward it while nearly tearing off his jacket. My response to this action was an off handed call out for him to leave his coat on because we couldn't stay; we were on our way to school. He turned around so suddenly to object that he fell. And you know what? Everyone wanted to help. I had three people try to tell me what had happened, two people offer to help us out with our order and two more people trying to sooth Ben's tears with treats. Everyone reached out a helping hand with not a blink of that uncomfortable look that we often get when people realize that Ben is not a typical kid. And I was grateful and thankful and offered explanation to all questions that needed answering and inside I was screaming. LEAVE ME ALONE! LET ME DEAL WITH THIS! HE IS MAD AND SAD AND NOW HE FELL AND IS SO EMBARRASSED AND I AM ADDING INSULT TO INJURY EXPLAINING TO YOU WHAT IS GOING ON INSTEAD OF DIFFUSING THE SITUATION AND TAKING CARE OF MY SON. Interesting huh? I have spent the last five years wishing for just this reaction to Ben and when I got it, it frustrated the daylights out of me. I wanted to be grateful but it made me so sad. A conflict of emotions that I couldn't wrap my head around. The utter sadness that we are in need of or warrant that attention. My inability to make it all better made me feel different even when others were treating us as if we weren't. I can kiss his head but I can't take away the cause of the fall. CP sucks.

Happy Accidents

2008-03-05T21:38:00.003-05:00

Happy Accidents. You know, ordering just the burger because you didn't want to admit that you want the fries and then the cook puts some on your plate by mistake. Or going down the wrong aisle in the grocery store causing you to remembering that you are in fact out of coffee (gasp) and you forgot to put it on the list. And my new favorite- driving 40 minutes away from home to look for shoes and bumping into friends in a store you didn't plan on going into. Ta Da! Happy accident turns into impromptu play date at Old Navy. I'm serious. I really thought that any moment the staff was going to kick us out of the store but the silliness was really their fault. Who puts 4 big baskets of balls in reach of children in a children's section. Kiera got a chance to play with friends that didn't run from her (that has been happening lately) and Ben got to play with friends that didn't care if he had a walker. One of the girls walks with a walker too so it's nothing new to them. There really is nothing like the openly happy look on Ben's face when he sees these girls. It could be that he just likes the bell on the other walker but based on the fact that he told both girls that he loved them about 100 times I think that it is more than that. We ended up spending a really fun afternoon playing and being silly. But can you believe, no camera! This was Ben and my conversation at bedtime-(when you read this try to picture bright, happy blue eyes, a soft smile and little giggles) Me: I had a really fun day with you today. Ben: (big smile) Mama, Eden wants to walk. Eden wants to walk just like Ben wants to walk. I walk in my walker just like Eden and Eden walks in her walker just like me. Eden has a bell. I ring the bell on Edens walker. Eden rings the bell too. Well, I'm tired mama. I love you.

Problem Solved

2008-03-03T02:04:00.007-05:00

Here I am, in the midst of inches of beautiful new snow. And we can't play in it. That's Michigan's trick you see. It gives you snow, you get maybe one day to play in it then it does one of two things 1)turns to muddy slop or 2)becomes so blasted cold outside that you are actually being mean if you take your kids out. This time it was choice 2. Something like 18 degrees outside. Then I remembered! I was a fun mom last winter! I had heard from a friend, I think it was Billie, that she brought snow inside to play with so I filled a bucket with snow and put it on the kitchen floor.

Having remembered this I ran to the garage (I have to run there is no telling what my kids will do while I'm gone), dug through the boxes that won't allow me to park in there and brought up the water table. Buckets and all. Brought in a few shovels of snow and presto! snow to play with. Problem solved. Kids get to play with snow, I get to skip the whole getting kids dressed thing, anyone can pee anytime they like AND I get to stay warm. After a good pat on the back I realized that they are not loving it like I am. Oh they came and gave it a good looking at, Kiera ate the snow off of a sand toy, Ben even picked up a shovel WITH A FROWN ON HIS FACE. What is this! I have actually brought a mess into the house MYSELF. You would think that they would have jumped at the chance to go nuts. But no. Then they answered the question themselves "It's too cold mama." Ohhhhhh. Mittens! I forgot mittens. So I found some mittens (no small task) and yep, problem solved! Warm hands and fun were had by all. That is until they asked for ice and Kiera got a piece stuck to her lip (only partly my fault) and then ripped a bit of skin off (totally not my fault).

As a quick side note-it is very hard to get fun pictures when your counters have dishes all over them and your daughter has decided that "nakey bottom" is the way to be. Also note the sad pathetic dog who is pouting because what fell out of the table was just really cold water.

I Don't Belong Here

2008-02-26T14:55:00.002-05:00

As I watch the snow melt I always think that it is too bad the kids don't get to play in it anymore. Then is snows and I think about how much I hate being cold when I have to play in the snow. I really don't belong in Michigan.

BABY SLEEPING!!!!

2008-02-24T18:43:00.006-05:00

If you have been reading then you have probably noticed that my mom has graduated to "super mom" status. She has always been fantastic, well it was iffy for a while when I was between the ages of 14 and 18, but that may have been me. Note the MAY HAVE BEEN. She has been so wonderfully supportive to our little family and we have been so lucky to have her near by.

Recently we have been putting her to the test. With all of the doctors appointments and therapy she has spent day after day playing with my kids or at least kid so that I can be more attentive to the doctors that we are visiting. Not only is she graciously giving her time but she has brought milk when we were flat out and I had two sick kids on hand. She has come at a moments notice to help out with birthday parties and to just let me get out. She has run to the rescue when she heard the "help me" tone in my voice and has pretty much saved the sanity of our household over the last month. Add to her list of accomplishments that she has taught me how to use a pattern and walked me through making an apron for myself. I should note that she gave me the sewing machine in the first place, provided the patterns and went with me to find fabric so that she could entertain Kiera allowing me to spend some time picking out what I wanted rather than grabbing the first bolt I touched and running out the door with it. To top it off, she may have single handedly saved me from any future door solicitation.

To put it mildly, Kiera has trouble getting to sleep. This has been VERY apparent to my helpful mom. An afternoon just a couple of days ago I struggled to put Kiera down for her nap then went to pick up Ben from school. I hadn't been gone very long when an unknowing young man appeared at our door and rang the door bell. Our dog came flying past Kiera's door barking her head off, Kiera started screaming and my wonderful mom answered the door, barking mad dog in hand, by saying "You woke the baby. I'm not happy." The poor terrified man (not sure what was scarier my barking dog, my growling mom or my screaming daughter) begged many apologies and scurried back to his car. From what she tells me, the exchange may have been good enough to spread as rumor and protect us from all future bell ringing. Just in case, she put this up

Now that I have let everyone know how fantastic she has been in the last few weeks, forgive me if I just start calling her mom again. I am not a fast typer AT ALL (my niece laughs at me) so for the sake of time I will leave out the "super" and hope that you just hear it in your head before the "mom".

On The Up Swing?

2008-02-21T23:48:00.003-05:00

We went to the doc on Wednesday, just to (donate $20 to the till) be on the safe side and came out with...the flu. That's right, like everyone else my germ chasers caught the flu of the season. Great thing is that Kiera went to the appointment with us and is very demanding. Why is this great? Well it means that the wonderful MA and doc couldn't say no to her when she said "My turn please?" so she got a pretty thorough check with out the co-pay. Both were sating at 96, both were ear infection free and both had clear lungs. Good enough for me! And even better news, a taste of fresh air peeked Ben's drive to feel better and he is on the go again. We really lucked out on this because it was a crazy day. My wonder mom came to stay with Kiera while Ben and I headed out to my neurologist. Not sure if I have mentioned this, I have a seizure disorder. This is usually where people give me a look. No worries, I have a very controlled seizure disorder that takes me to the neurologist once a year so that I can hear about his kids. Had my reflexes tested, he looked into my eyes, asked if I had had any seizures ("Oh you would know!"), told me all about his family while not asking once about my child that is right in front of him, another co-pay and we were off. On to the Hospital for our 1st visit with a new PT. Our goal is to stretch him out of some pretty serious tightness. She took some measurements, did some muscle testing and then started into a few low key strengthening exercises. Suggested that I work on some supported long sitting. Really? He's five. That means that he has been in PT for four years and seven months. That also means that we have been fighting the "tighties" FOREVER and all you have for me is long sitting. This poor woman has no idea what she is dealing with. When I said that I was looking for help with deep stretching to avoid medication and other interventions I was actually looking for something new and aggressive. Something more than I have been doing. Yes! Please give me home work. But teach me something beyond PT 101. Enough of that rant. I will give her our three times a day routine and see what she has to add. Please, please, please be able to add something! We left the appt. and Ben walked all the way out of the hospital. It was with his walker but still! He hasn't been walking too much with this bug and he was wearing his newly cut down DAFO's. This was more than just a step forward. We watched the big trucks and cranes that are "building my new hospital"- I'm a bit sad that we have spent so much time there that we keep up with the building progress. Anyway!! He asked if he could go to school! So we went. He met with his school PT and she actually gave him a good stretch then went to school and stayed all day. I'm telling you, wonder kid. When he gets tired of being down he just picks himself up. I came home with just enough time to grab a quick bite and struggle to get Kiera to bed then I was off again to get Ben. When I got to school I was told that there had been an argument. An argument? It turns out that Ben was playing blocks with another child (his new buddy) and both said that they made a car, little friend had it, Ben took it, little friend grabbed Ben by the shoulders and pushed him down. Isn't that awesome! Seriously! I can't tell you how excited I am! First, he has a buddy. Not just someone who says Hi in passing but a little friend that takes the time to wait for Ben . So cool! Second they were playing with blocks together. Not guided, not near each other but together. Third, they were comfortable enough to argue. Ben didn't get steam rolled and little friend didn't let Ben have it because he is "entitled" just because he is not as strong. Forth, little friend treated Ben as he would have anyone else. You take my toy, I'm gonna tackle you. Little friend saw a child that took his toy. That's it. So cool.

Out Of The Blue

2008-02-18T10:06:00.005-05:00

One minute we're healthy, the next we're not.

We woke up on Saturday planning on spending the day with friend’s oogling campers we can't afford. That’s right, we ventured out to a Camper and RV Show. Admitting that should be part of a campers 12 step program. If there is one thing that true tent campers don't want to admit to it is that they crave shelter. In years past (many, many years) Dave and I were rustic campers. Back packs, tiny gear, dehydrated food and all. Showers and potties? Those are for wimps, right? Well the last time we ventured into the great wilderness I was 12 weeks pregnant with Ben and it just wasn't as much fun being sooo out of touch with civilization. Frankly, my back hurt, I had to pee all the time and a shower would have been a really good thing. Swimming in Lake Superior (extremely cold water if you aren't familiar)to get clean, in a bathing suit not meant for a body that just looked, well, weird wasn't a lot of fun. Fast forward about a year and we had a baby on our hands that was just off oxygen and I was too worried to take him camping. Well, we have now been tent camping for the last 3 summers and realize that it may just be a good thing to get off of the ground. I can’t believe that I just spent a whole paragraph defending the thought of camping on a mattress…

That brings us to the camper show. Where Ben got sick. Yep as quick as a wink he was fine then he was white as a sheet. On the way home he coughed. A gunky, congested coughing up guck sound that took Dave and me completely by surprise because that sound usually comes after he has been sick for a while. Then Kiera coughed. And her cough was nasty too! Is this is a new kind of sick that starts half way in? So far low grade temps, lots of fatigue, decreased appetite, gunky coughs and lots of waking at night. This means that Kiera has a pretty bad attitude, Ben is a noodle and we are really tired. I'm hoping since we seem to have started in the middle that we will be out of this in no time.

Little bit of cuteness-
Kiera came "walking" into the kitchen like this saying "Look mama, I upside down."

Did I Just Do That?

2008-02-15T21:03:00.004-05:00

This thought came racing through my head as I was sticking my tongue out at my darling two year old daughter's back. Did I just do that? How old am I that the best I can do is pull out school yard retaliation. As quickly as I thought it, I made sure that Ben wasn't witness to my bad behavior. Thankfully it was just my mom that saw me and was laughing behind her hand. It's not that she thought it was a good idea but she has spent a lot of time with us over the last few days and I think part of her couldn't blame me.

I have decided that one can only be expected to stomach so many nasty looks in one day. Kiera has mastered the "what ever” and "make me" looks as well as the "you don't know what your talking about". It would seem that she is teaching Ben the art of the look because he has some of his own now. The "Naa, I don't think I will" and "I don't even hear you" are at the top of my making-me-nuts list right now. To be honest, I don't know which one is making me crazier. Kiera for her blatant disregard for anything I say or Ben's disregard for what I say based on the fact that he knows I am busy keeping Kiera from burning down the house so it will be a while before I get back to deal with him.

the haircut

It has been a really busy two weeks with appointments ranging from surgery clinic to a haircut. By the way- if your barber seems to be acting a little kooky, smell his breath and save yourself from the wacked out haircut. Anyway, we had about 10 appointments in all plus playgroups and preschool so I have had to deal with the backlash of diverting so far off of the routine. Toss in that I feel a bit overwhelmed and it turns into bad behavior mad house, thus the tongue thing.

On the brighter side (I'll leave out the crappy stuff because I made it clear how I felt about it in the last post) we don't have to go back to surgery clinic for a year barring any changes. The surgeon feels really good about the overall results of the fundo. We did the fundo to improve and preserve lung health. So far so good on that front. We have made it through colds, sinus infections and GI bugs without pneumonia. He can burp a little and vomit if needed and the remaining reflux is being controlled with meds. So check that one off the list for now. Next, we made it to the dentist with no vomit. We did several days of story prep and oral stimulation (basically me feeling his teeth for several days and chewing on a vibrating teether). It helps that we are on the empty stomach list and had Zofran on board but who cares about the "hows"... I didn't get puked on and that is a really good thing.

We also made it to our perspective 5 and 2 year check ups with the ped. I never know what would be worse, going twice or taking both at the same time but this time my wonder mom came with us to help run interference and we all made it out in one piece. Ben is 44" tall (75%) and 39lbs (25%) so we are still long and lean. No surprise there. Kiera is 34" tall (35%) and 26lbs (35%). A bit of a surprise there. I have friends with tiny little dainty girls so I was beginning to think that Kiera was a bit of an amazon baby. Nope. Just right for her, just like my wonder mom and sister keep saying. The doc and I keep in pretty close communication about Ben but we really don't need to deal with Kiera too often. Well, except when we needed to call when she ate strange berries outside or swallowed a clippie or painted the inside of her ear with nail polish. But that is just the call-in nurse that hears all of those crazy stories. The last time I had to call there was a long pause before the nurse said "She really does have a knack for this kind of mischief, doesn't she." Anyway...The conversation regarding Kiera began with "is she putting any words together?" to which I replied "All of them." To be followed by "Really. She is conversational with strangers." By the time we left a half hour later the doctor conceded that I am a pretty busy person. Reminded me to "keep it up" and left me with the sage advice "Don't let that one get ahead of you." What I said was "I'm trying" what I wanted to do was cry "How! How do I keep ahead of her when she never stops?" But I kept it together and we had a round of stickers and happily off we went.

This was the beginning of how we spent the last two weeks. I think that living through it has earned me some tongue sticking out. Now, I am so, so tired...

Break Your Heart

2008-02-11T18:30:00.000-05:00

We went to the physiatrist this morning. (deep breath) I have heard a lot of good and bad news over the years so I pretty much know when what a doctor tells me is off the mark. In the same respect I typically have an idea of what I am going to hear when we visit any of our 11 or so doctors and therapists. So what. It doesn't mean that I want to hear it. It doesn’t mean that anything can prepare you for hearing anything negative come out of a doctor’s mouth. Just because I know its coming doesn’t mean that I want to hear it spoken. It also doesn't mean that I will swallow it and move on. It means beginning a whole series of questions all over again. Like: why?, what went wrong?, what did I do wrong?, what didn't I do?, what should I have been doing?, who's fault is this?, how can I do more?, am I strong enough?, why can't I suffer instead of him?, will anything ever be enough? I doesn't matter that our situation hasn't changed. It doesn't matter that we will do what we have to do to move on. I doesn't matter that what is said was expected. You go right back to the beginning and start over with the doubt, guilt, blame, fear and heavy heavy sadness that once again life is not and never will be simple for a child with CP. Four months ago Ben had hypotonic cerebral palsy. Today he has spastic cerebral palsy. No big deal. We stretch him everyday. We knew it was coming. But I didn't want to hear it. I also didn't want to hear intensive intervention or Baclofen or Botox or risotomy. At the appointment today Ben said that his legs wanted to be straight. The doctor and I looked at each other and I told Ben that that is why we stretch his legs, so that they will bend easily. He said "Let’s just let them be straight Mama." He is tired of this whole thing too. At school a student assistant had a cute story to tell me. She is using crutches and was helping Ben at his locker. He said "You use something to help you walk too." She agreed and he said "Now I don't have to feel alone today." I cried all the way home.

Bedtime

2008-02-07T16:33:00.000-05:00

There are so many wonderful and fun things to post about but I am too lost in the bedtime battle to think of them! I guess the trigger to my current woes, is that Kiera started climbing out of her crib. Four weeks ago. OK, so I'm a little behind on info sharing but we've been really busy. After we mysteriously found our little mischief maker in the living room after bedtime, we began talk of what to do next. Do we try one of those crib tents? Do remember that this little girl has yet to be conquered by any puzzle that she sets her mind to so... do we spend the however may dollars on a tent? With only a zipper holding her back? In the meantime how do we saver her from herself? Well, get a gate for her door of course! So there goes a little bundle of $ on a gate that lasted about 1 minute. Really! Up an over she went and our grand plan to keep Kiera (and our house) safe was foiled. So we just keep putting her back in her crib per doctor instructions, avoiding eye contact and any speaking so as not to reinforce the behavior with attention. Then she miraculously began staying in her bed! Except that she wasn't. She was just tired of being put back in her crib and had begun making little beds for herself on the floor.On to plan, what is it now "C"? We go with the toddler bed. Bring it home, she loves it! And absolutely refuses to stay in it at bed time. For THREE WEEKS that little joker has put us through 45 minutes (at best) of using our best parenting materials to keep her in her bed. To absolutely no avail. I've got nothing folks. Help!

Funny Guy!

2008-02-05T17:01:00.000-05:00

Me: Do you guys want a snack? Kids: Crabby, wine, wine, crabby, complain, wine... Me: OK, how about turkey toes? Ben: Peeyou stinky turkey toes?!? Beginning to smile Kiera: "You're Crazy" look directed at yours truely Ben: How about toegurt? I love that boy!

Happy Birthday My Amazing Boy

2008-01-28T22:41:00.000-05:00

Five years.

Wow...

Where to begin?

Five years ago my water broke...six weeks sooner than expected...

Five years ago a sweet doctors answered my call with "Looks like we're having a baby! Wait, how many weeks are you?"

Five years ago my seemingly complicated world became silly.

Five years ago things got serious.

Five years ago you came into this world kicking a screaming and a dream began.

Five years ago you stopped breathing and we nearly lost you.

Five years ago my heart shattered.

Five years ago a dream that never was, slipped through my fingers as hard as I tried not to let go.

Five years ago I begged to see my beautiful but all too still baby boy.

Five years ago my life and my world ended, changed and began anew.

Five years ago I learned what a mothers love is.

Five years ago I started fighting for you.

Since than...

"He will never hold his head up"- you do.

"He will never roll over"- you do

"He will never sit up"- you do

"He will never crawl"- you do

"He will never bear weight on his legs"- you do.

"He will never talk"- you do

"He will never never walk"- you do and now you run!

and the best...

"He doesn't love you. He will never love you or form human bonds"- you do! You are the most loving little person that I have ever known.

NEVER SAY NEVER LITTLE MAN!

You have taught so much. You have given me so much. You have shown me the world through a completely different lens that misses nothing and never skips past the little things. You have shown me what courage is. You have shown me what strength is and it has little to do with muscles. You have proven over and over that there is no such thing as never. You have broken my heart with "I want to walk mama" then made it burst with joy with "I can do it!".

I will be strong for you.

I will cheer for you.

I will cry with you.

I will always be there for you.

I love you my first child.

I love you my amazing boy.

Happy Birthday Sweet Girl

2008-01-24T23:45:00.000-05:00

Happy birthday to my vibrant daughter.

Happy birthday to the infant who cried for 18 weeks, straight, every waking moment.

Happy Birthday to the all knowing baby who looked into my eyes and told me with hers "I get it".

Happy Birthday to the lips that kissed as soon as they stopped screaming.

Happy Birthday to the little face that looked at me with glee the first time she scooted to the cat and came back with a kiss full of cat hair.

Happy birthday to the strong girl that has always out done herself trying to catch up the the brother she adores.

Happy Birthday to the little voice that started with "dada" and has moved on to "Look at my face. I love you mama, I want a snuggle bug with you."

Happy birthday to my intuitive little girl that finds for me what I have lost before I even ask. Happy Birthday to my mischief maker that has me so often teetering between laughter and tears.

Happy Birthday to the big two year old that never admitted to being a baby in the first place. Happy Birthday to my joyful big girl that can find mystery and intrigue and amazement around any corner.

Happy Birthday to my determined girl who's "I'm smarter than that" attitude which makes me nuts will carry her through many challenges.

Happy Birthday to the sweet sister who loves her brother so much that the hugs sometimes hurt both of them.

Happy Birthday to the youngest but by far most power packed little person in our house.

Happy Birthday to my sweet (really, she is) two year old Kiera. I love you.

2008-01-19T14:53:00.000-05:00

I have run into a bit of a problem with blogging. People read it. I don't mean everyone but some people read it and now I have a problem. My ordinary life which often turns toward ironic, silly, frustrating and ridiculous is out there for the misunderstanding. I write about what catches my minds eye. I write about the things that take me by surprise. I write about the things that both exceed and fall short of what I thought my life would be but most of all I write for me. I have found though, that when you type it it seems like the little things are bigger than they are. People that I know read this blog and say things like "How you doing, really?" or "Are you doing OK today?" as if my life is dramatically different than it was a year ago when I stared this thing. It's not. And I'm not. I (and my life) are not that much different from when I started writing although Ben and Kiera definitely keep me busier then...Oh for goodness sake! All that I am trying to say is relax everyone! I write about the little things that SEEM huge AT THE TIME. The little things that you read about are just that. No bigger than your little things. Just worth writing about for their momentary impression on my psyche. OK, rant over. So...Kiera got into a drawer behind a locked cupboard door, opened a bottle of nail polish and stuck the brush into her ear. You see! How could I not write about that! Who does this sort of thing and how can I possibly be expected to predict it? Did I mention that she did this while wearing two pair of Curious George undies over her onsie shirt and third pair of George undies with winter boots and sun hat? She is hilarious!