Wednesday, April 25, 2012

Mini Push

I have four days. Four days to give just a mini push, a mini push that I hope reaches the eyes, ears, hearts, and frankly pockets of the people that we know. The people who know us and have come to know and love Ben, because to even know of Ben is to love Ben. To know his fight, his heart, his laugh, his love, his temper, his propensity to flirt with pretty blonds is simply irresistible. The boy is amazing. The boy lived and lives everyday with an understanding that bewilders me.
He went form this... 

To this...

in no small part because of the work done by the March Of Dimes. This Sunday we walk to support this organization in the hopes that someday we will see the end of the pictures like the first one, and only pictures like the second. Four days, we'll do our best. 

Monday, April 16, 2012

These Little Things

Clearly I am running on empty (see time stamp on last post) but kiddo's don't know this and neither does the bus, so we get on with our morning bustle.
Our morning bustle is a well oiled machine. It allows for a misstep here, a minor delay there, but that is really all any of us can handle. Forty-eight minutes from my alarm going off until the bus pulling up is what the three of us need to drag sleepy bodies out of bed and pull together something fit for public viewing. Not me, I walk the dog out to the bus in my sweats and a ponytail, but at least I try to wipe away most of yesterdays make-up.
This morning was tough. Not for me because I haven't had enough sleep for my body to figure out what is going on yet, but for the kiddo's. I had sleepy kids who were dragging a step behind. Interestingly Ben pulled it together but being a step behind for him means that he didn't eat most of his breakfast. "I'll be OK, Mom," he said. But there he went nearly empty belly and I feel terrible that he won't complain. I feel terrible that he will be tired and unable to pay attention and forget that he doesn't feel good because he is hungry, not because he is sick.
I can't stand that he is nine and I am fretting over him not eating breakfast. If you are wondering what that sentence means exactly, take it any way you like. I am sure I have felt it in that way. No one could judge that sentence more or in more ways than I have, but I am getting off track.
The really interesting part of the morning was that Kiera wasn't pulling it together. She wanted to hug the cat, she wanted to hang out in the bathroom, she wanted to stare at the wall... When all of a sudden we had three minutes until the bus was going to be there and I had my girl in PJ's and my boy with no shoes on. Now that my friends is a pickle. What does a mama do when her freaking six year old asks for help getting dressed and her nine year old sits before her unable to get DAFO's into sneakers, let alone tie the damn things, just three minutes before the bus comes? You tell me how you balance parenting in this house. You tell me there is a such thing as fair because I will tell you right now, there is not. There is no bloody reason that I should have to play super mom and put Kiera's clothes next to me and "you can do it" talked her through it while I explained that I needed to help get Ben's DAFO's into his shoes. Ben even told her what a great job she did when she went from naked to bus stop in 2 2/1 minutes.
We did make it. She was so proud of all of us, not just herself. She wasn't upset or hurt or put out. "We made it Mom!" she said when she got on the bus. Team Us.
I sat back stunned at what a typical six year old could pull off in 2 1/2 minutes (she even grabbed a butterfly for her hair) and then my heart just crumbled because I asked her to because he can't.   

How Ya Doing?

How ya doing? I ask the question and find myself wondering for an answer regardless. It is the question that, quite literally, has me up at night. How are they doing? How are we doing? How am I doing for that matter?
It's the goofy little triggers that all add up on one day that make me dream and wish and beg with all of my heart for Ben to answer that question for me. I wish for answers to all kinds of questions, like why sometimes I can get answers and sometimes can't. Why were you yelling all day? Why are you crying out in your sleep? Lost party invitation for Ben is making me nuts but I won't know how he feels until he is so disappointed, or not. Kiera has been up twice just to tell me she loves me after going to sleep so sad. And she is just your typical wreck of a six year old.
So, how ya doing, because I have no idea. It's all good but just a bit of a mess. Or is it all a mess but still good? Tomorrow(today) is Monday and my lovely madness will get on the bus and I will try to write a couple of papers and channel some super mom powers of let it be what it is. Now please, let me sleep.  

Thursday, April 5, 2012

Tired Just Thinking About It

Oh no. Was I supposed to be doing something about me? I totally forgot to put it on the calender. OK, if I am being honest, taking care of me is both first and last on my list. I must take my meds, I must sleep, and I must avoid exercise at all cost. Wait, did I type that out loud? Take my meds and sleep so that I can care for my family, eat healthy food so my children will have a good example to base eating habits on, and completely flake on the fitness thing. Yep that's me. It wasn't always me though.
It has become apparent that I surround myself with folks who do not share my current wimpy ways. I am surrounded by runners, cyclists, and triathletes. According to what folks are telling me and posting on FB pretty much everyone I know is on some sort of a training program, even ballet and yoga. So where did my motivation go? For nearly twenty years I considered myself a dancer, but that was nearly fifteen years ago. Since then I have found all sorts of love for different sorts of exercise but it occurs to me that what I don't have is the sense of community that I once had.
Part of the problem is I live in an area that struggles with being a community at all. Its called "In a Pocket Between Places" and good luck finding "community" in a place that really has no place. I would love to have a buddy to exercise with but my bizarre neighbors get up a 5AM (HELL NO) to do a video or run together in the evening. Which brings me to my next problem. What about all of us moms who can hardly sneeze without crossing our legs? Where is the super cool race that has thirty-five porta potties along the 5K so no one coughs by accident and pees a little? My body can not take high impact the way it used to, lets just say that.
The reason for this little rant? Other than listening to everyone go on and on about how great they feel getting in shape and blah blah blah (I'm not hostile, really) is that it has become very apparent that I am terribly, terribly out of shape in the past few days. First reminder was pushing Ben in his stroller. Yes the thing is an ancient hand me down that saw better days years ago, but still, the kid weighs 54lbs. and it was barely a hill and I was barely talking AND I GOT OUT OF BREATH. Second, Ben was sick this week and lethargic enough that he couldn't walk. So I carried him. And got very, very tired. Like I said, he only weighs 54lbs. What am I going to do when he is bigger and can't walk? No excuses now, got to get this ass in gear. And these arms and these legs and this gut... Man, tired just thinking about it...

Wednesday, April 4, 2012


Well, we lived through another one. IEP that is, but as usual, the process has left us with more loose ends than we started with. The reality is that the loose ends were already there, but it takes getting the team together to actually acknowledge them. Now the trick is moving on to what is next. Not just saying what is next, outlining an idea of what is next, but implementing the reality of next. This year that is going to be hard for everyone, even me.
Ben's qualification for services is fairly simple. He is physically impaired. BUT his picture is much bigger than that. When we sit down for an IEP we have six or seven people in the room, not including Dave and myself. To make the conversation as effective as possible the day of the IEP, I do a lot of talking to folks ahead of time. This year the big concern is Ben's focus. Considering that time was short and it was on every ones radar, that was the first concern we addressed. What a can of worms.
What exactly are his focus issues? We have always wondered if this was associated with his CP, still do,  but this is the first meeting that no one wondered if it was a spectrum issue. No one. Interesting that when we asked, the consensus was across the board, "no." What is out there is ADD. ADD? Now there is something I don't know enough about anymore. For instance, would ADD explain the cycle of attention issues we see throughout the year? And what if it does? What then? Please tell me what do we do then because if you tell me medication I may just melt into a puddle of fear and sadness.
First, we talk about testing. Tests are all tossed about in quick conversation then some sent out in email and again I am nearly immobile because every test mentioned is standardized. Standardized and compared against his peers to be kept and referred to and used for future reference. But who are they considering his peers? Who is scoring this evaluation, the lady who sent me the email because that is a name I have never seen before and she doesn't know Ben. How would she know that when she writes her conclusion then sits down with me she is dealing with a boy who doesn't benefit from the efforts of standardized tests.
This is the unknown territory that I make every effort to prepare myself for, but can't always cover. This is the reason that IEP's suck. This is what's next.