Why I Feel Useless

I'm a stay at home mom whose kid is gone 9 hours a day.

We made the decision for me to stay home before we knew that Noah would be born early, have a long hospital stay, and have long term consequences of his premature birth. When he was born I knew it was the right decision for him. I was able to take the time to really focus on Noah and what he needed, and I know he has benefitted from it. Early on it was very isolating. When I decided to stay home I thought about how fun it would be for me to drop my little guy off at the church nursery so that I could attend the Wednesday morning Bible study. I pictured playdates at the park and buying french fries at chick fil a so the kids could play when it was too hot outside. Almost all of my friends had kids the same year so I knew it would be a wonderful bonding experience for all of us. But then I had a preemie...

Church nursery is full of germs and to be avoided at all costs when you're trying to grow healthy lungs in your baby or toddler. I didn't end up joining the Wednesday morning Bible study until Noah started school.

We've had a few playdates through the years, but rarely at the park since pollin makes Noah puke, and they're few and far between since many parents seem to think that disabilities are contageous.

Chick fil a is wonderful but the play area is full of static and germs. At 5 Noah still doesn't have the physical ability to climb up into the tunnels without a hand to hold and is too tall to pass as young enough for the baby/toddler area so unless we're there with friends with older kids it doesn't happen. And although Noah has become pretty insistant that we buy him a kids meal when we go to chick fil a, he still doesn't eat french fries or chicken nuggets or drink lemonade.

Through the years I've found other ways to keep from going crazy. I have a few friends who are wonderful and don't mind my kid acting a little weird or different when he plays with their kids. Noah is an avid shopper and is always up for a trip to Target or the fabric store. He loves to play dress up, act silly, do craft projets and read books.

I really truly believe that I've done what I can to prepare Noah for school. He's not potty trained. He can't write his name small enough to fit on a line. He needs help blowing his nose and buttoning his pants. But he can do more than he could last week, which is more than the week before and so on. He might not be making quick progress but he's always learning and growing and he although he gets frustrated at what he can't do that he wants to do, he has a generally good attitude about his abilities and is always willing to try.

Somehow I didn't realize that sending Noah off meant an end to all of that. For years I've been Noah's primary teacher, now I'm just his advocate. It's an important job, but its hard learning to change. I feed Noah breakfast and dinner. I put him to bed and wash his clothes.

I miss him.

Soon I'll find other things to occupy my time. That Wednesday morning Bible study is about to start. Volunteer orientation is in a few weeks at Noah's school and then they'll be sick of me. Once I get my wrist surgery out of the way I hope to start substitute teaching. But it won't ever be the same again. As much as staying at home with Noah was frustrating and crazy and overwhelming, staying home without him is sad and lonely and empty.

Progress Report, continued...

We briefly discussed Noah's progress report with him on Friday. We told him that he had done a good job at school, and that his teacher liked how he did his best work, obeyed the rules and was kind to his friends and polite to adults. We told him that she wanted him to work harder at listening, following directions, and paying attention. We gave it a generally celebratory bent even though it wasn't exactly a stellar report, because I know he did work hard to do his best at school. After letting him watch a little TV as a treat we didn't bring it up again.
This morning when Noah woke up he told me "I'm going to be a good listener and follow directions and get lots of check marks." All morning he wanted to pretend he was at school and have me give directions for him to follow. He practiced sitting still with his hands folded and putting one finger over his mouth while the other pointed to his ear (his "I'm a good listener" pose). Noah may not get all check marks this week, but it certainly won't be from lack of effort.

Noah's first progress report

As an only-ever-got-check-plus type of student, my initial reaction to this progress report was disappointment, but then I got over it. Noah did his best work, followed the rules, and respected others. What a great kid! The needs improvement areas are not at all a surprise to me, although it does make me wonder whether the FM system is in place yet. I haven't yet decided what to write as a parent comment. My husband suggested "I know. Isn't it frustrating?" and my first thought was, "That's why he has a one on one paraprofessional." but I think I'm leaning toward something like "This is pretty typical of Noah's past school experiences. We were hoping the FM system would help with those areas." I must say that I give a general ed. teacher major kudos for being that gracious about how difficult it is for Noah to fit in with a class of 20 kindergarteners. I know it can't be easy for her, but she really seems to have embraced having him in her classroom.

Vote for Noah's friends!

Vote for Noah's friends Abby and Becca! Noah and Abby lived together in the NICU for many months. They were the only two 24 weekers at the time so our families got to know each other well and have been close friends ever since. Becca tried to come at 24 weeks too, but thanks to some great doctoring and lots of bed rest, they were able to hold her off until 39 weeks. Abby is #2190 (in purple with the Eiffel Tower) and Becca is #2109 (in polka dots). Here they are playing video games with Noah on the 4th of July.

Kindergarten

This morning Noah left our house on a school bus. He didn't look back. With him he took his LL Bean backpack, Scooby Doo lunchbox, extra batteries, his cane, his magnifier, and his monocular. He took a "special" bus and his one on one paraprofessional will be with him all day but for the first time ever he's in a full inclusion situation. He still has a lot of needs and his IEP is still more than 60 pages, but I know that he can and will learn. Five years ago at this time we were dealing with mutiple surgeries and the threat of a trach. We weren't sure Noah would live long enough to see kindergarten, and yet here he is. I couldn't be more proud.

Glasses

Noah goes through glasses with about the same regularity that monkeys go through bananas. Between poor eyesight, poor balance, and a delayed protective reflex (he doesn't stick out his hands to catch himself) his glasses don't stand much of a chance. We visit our neighborhood Lenscrafters quite regularly and are quite loyal to them, because we love their free repairs and inexpensive replacements. We got our most recent pair of frames in early June and have been struggling to keep them in mostly the correct shape to fit his face since then. We go in for repairs every two weeks or so and tonight was a big one. Noah somehow managed to bend his glasses in half so that the two eye holes were facing each other. We were pretty sure we'd be forking over the money for a new pair which is unfortunate since in less than a month we go back to optho for a new prescription. They managed to bend them more or less into a normal shape but then the thing we'd been dreading happened - they snapped in half. To our surprise they gave us a new set of frames at no charge. If we weren't already loyal customers we would be after tonight. Hooray for Lenscrafters!

Awww!

If you've ever asked Noah what he's thinking about 9 times out of 10 the answer is "Tinkerbell". He was in awe to get to meet his hero a few weeks ago at Disneyland.