Thursday, November 29, 2007

Getting better

Can I tell you how often we sing the Beatles "Getting Better All The Time"? OK, saw the doc and spoke with the surgeons nurse. We figure that Ben's little cold turned into a sinus infection and is just wreaking havoc on his whole torso. So much mucus and not much ability to differentiate between the cough muscles and gag muscles. He is on "pink medicine" and "no more pukies medicine" which both seem to be helping. He even went to school today! On a side note- there was a new college student in the room today and Ben was just gaga for her. He has a thing for blonds...So we are just going to quietly breath a bit and wait this out. I am just sitting here listening to the kids cough. I have been so tired and it is just now that I am realizing that I haven't slept well for a long time. I never sleep hard at night when I'm listening. Now the morning is another story. Thank goodness (and Dave) for coffee! Ben is doing so much better than this weekend that even I am surprised at the recoup time. Our next issue will be trying to get him to eat again. Every time we get within a pound of the car seat weight limit the boy stops eating. I really need to get the new one quickly just to be sure that he isn't trying to do me a favor! Well, safe for a couple of weeks I'm sure. What comes off in days takes weeks to get back. But...we're getting better...

Monday, November 26, 2007

Aww man!

I did it! Did you see that? In my last truly sad and frustrated post I did that "thing" that so many people talk about. I wrote "that parents with children who get REALLY sick". Hold on there-what does that mean? It means that I was really sad about what Ben has to go through but more importantly what does that sound like? Does it sound like Ben is the sickest kid ever? Does it sound like I decide who is really sick? Does it sound like I am a member of the only club that is allowed to fear for their child? Does it sound like other parents fears are unjustified? Well, I hope that what is sound like is that I am afraid for my child, like anyone else, and needed to cry about it a bit. We're big kids right, and we can allow each other an opportunity to say "this sucks".

Staying positive

I really hate following up a hopeful post with one that is not as positive. I really strive for a half full outlook on life. I have spent enough time in the land of fear and sadness that I don't like it there and know how easy it is to slip into that cement leg feeling that makes it hard to get out of bed. When I refer to the little things I mean vacuuming, other peoples bad attitudes, and little arguments that didn't need to happen. Illness is never a little thing. Ben is sick. He has had a cold for a while now and we keep hoping that it will be just that, a cold. Well it's not. The fear that we have been pushing away is always lurking and pulling at the edges of that place that parents with children who get REALLY sick don't like to go. It is an awful feeling putting on a face for your baby to keep him away from the fear that once again he won't be able to fight a cold like everyone else. It is just a stupid cold for goodness sake. A cold that has made him unable to cough because he is so fatigued. A cough that has blurred the line between cough and vomit. Vomiting through Zofran on a new fundo because he is so full of mucus that every cough makes him gag. A fundo that may not be tight enough because not only are we not supposed to vomit be are we supposed to be able to this soon? Some good friends are posting about loss right now and it is amazing what it applies to. It is the feeling that you get every time your child isn't typical. It is the heart break that you feel when you know that your perfect child will probably end up in the hospital again because of a stupid freaking cold. Then you wrap up your post, let out one last sob, dry your eyes and go back to the trenches and fight for your children. It's what any mother would do for her babies.

Saturday, November 24, 2007


I can safely say that Thanksgiving is my favorite holiday. It is a wonderful opportunity to get together with family and loved ones with out the pressure of gifts and pretense. It is a day that is set aside to look around and say "I love you and I love that you are a part of my life". I clearly have been lucky through out the years to have great Thanksgivings despite illness, loss and raw turkey.

This year my Thanksgiving was filled with thoughts of what I am really thankful for. I find that while I try to be a good wife, mother, daughter, sister and friend I am not very good at telling people how important they are to me. I have the "thank you" down pat but most of the time the real heart felt expressions of my gratitude seem to get stuck somewhere between cheesy and sappy. Both of which are uncomfortable. How do you say to a person that they are so important in your life with out breaching the comfort zone. I feel that I am important to many people that I care for yet they rarely make me uncomfortable with the knowledge. How do they slip it under the wire? Do I just know because I know? Did I miss a class in manners or do they know how important they are to me with out it being spelled out? I do fear at times that I am leaving important things unsaid and do try to fit them in at better times but I would be really upset to find that people in my life aren't sure about their importance to me. I really must have missed a manners class.

That is a really good thing about Thanksgiving. It makes me try harder to make sure that I treat who and what I am thankful for with a caring hand. I know that the holiday is representative of bigger things but I think that making it personal has to be a good thing. I am not only thankful but grateful for so many things in my life. My loving husband. My beautiful children. My Mom and sister who love me no matter what. My bigger family including a Grandma and Papa that love my children as if they were their actual grand babies. My friends that help me keep my head above water. All of Ben's teachers and therapists that have loved him through the years. All of our doctors that have brought us through so much. The opportunity to stay at home and care for my children. Living. Loving. Laughing. Too many things to think about let alone name. Each one of these reasons to be thankful is so very important that the little things seem, well, just little.

Sunday, November 18, 2007

The Fashion Show

The Fashion Show. That is what I have been doing for the last few weeks. I have been tired, discouraged, frustrated, sad, sleepless, crabby, short tempered and worst-absent. The good news is that I was rarely more than one of these things at a time and not for very long periods of time. Well, now it is over and it was amazing. Not perfect but full of little things that you hope that people not in the know would never notice. Also, my kids (and my Mom) lived through me working my tail off doing things that for the most part I have never done before. I'm a full time Mom. In my previous life I was a Preschool Teacher. Neither of these professions taught me the ins and outs of fashion show/silent auction planning BUT thank goodness that I am on my third one and working with a woman who in a past life was in fact a special events person. I could have drowned in all of the little things that I didn't know about but what I do know is that I got done what I set out to do. I also know that I did my best to remember why I was working on this project. My children and more specifically, Ben.

This Fashion Show was a benefit for the NICU where Ben spent the first 28 days of his life. His birth (and complications) brought us into a world that was nearly unknown to me and into the lives of so many doctors, nurses and amazing families. If I could have chosen, we would be walking a different path. One that led right past that NICU door and into the recovery rooms with Ben in my arms but like so may others, I didn't get a vote and here we are. Tremendously lucky to have come through such an amazing NICU full of hope, reassurance and warmth. Our experience there led us to work with a group supporting and giving back to our NICU and low and behold we have pulled off our third fashion show. Every time the tired or crabby side of me would come out I could look the reason for this show right in the eye. It has reminded me that every day I can work a little harder than the last to be the Mama that my children deserve.
This whole process was pretty hard on Ben or really bad timing or both. But, once again Ben showed us that he is SO much tougher than we know. Also that he knows a lot more about himself than we give him credit for. He was a champ! He ran around like crazy, couldn't keep his hands off our little friends pony walker (it has a bell!) and when it was time for us to walk on stage he went right on out. We had 2 entrances and then returned to the stage with the entire group. Tons of clapping and laughing and the whole time Ben just held my hand. After the final thank yous Ben turned his face up to me and said "I did it Mama!". How proud am I.

I am incredibly lucky to be a part of this amazing little group. Thanks guys!

Monday, November 12, 2007


I came around the corner and this is what I found. All on their own sitting together in the chair. Fantastic!

Friday, November 9, 2007

I asked for it

We are getting our morning dose of Backyardigans (is that how you spell it) and Ben is leaning against the rocking foot stool "rocking and bopping". This is an action very close to the self stimulating throwing back of his head, kicking out of his legs and pulling up on his shoulders. We are trying to encourage Ben to slow down with this action because like anything else this becomes an over-used habit if not redirected and because his balance is poor, lands him on the floor way to often. Well he landed on the floor again. This time on top of a Lego that we are playing with. It hurt! I know it did because the look of the Lego mark made me cringe. After a few minutes of comfort I remind him to practice keeping his balance to protect his body. This standard reminder is met with a new burst of tears! He looked right at me and said "But Mama, I really like to dance!" and fell into my arms. Do you ever feel like your heart might break right out of your chest?


Communication is completely taken for granted! When you have a child that can not communicate his needs and feelings you learn this very quickly. So, Ben is having a hard time. Why you ask, I DON'T KNOW! There are too many variables. Is it that Mom and Dad went away? Kiera making strides? Teacher taking a bit of, well deserved and very necessary, time off? Increased social awareness? Dad working late? Mom volunteering? Decreased intake? Change in bus schedule? Like I said, too many variables. So what do we do? Our best to cover ALL of the bases that's what. Here is the good news-in the car after school pick up yesterday I gave Ben the overview of the evening. This came back at me from the backseat: "I want to tell you a story Mama. Once upon a time Mama was riding in Daddy's truck. Then she came to see you at school. Then we went for a ride in Daddy's truck together to home. Then we get to say hi to Nana. Then Mama goes to a meeting. Then Daddy comes to say Hi to you. Then Nana goes to rehearsal-show. The end." Huge progress.