Letting Go

For the first two years of Charlie’s life, I wouldn’t buy him or dress him in anything with a sport theme. If mom was in charge, Charlie would not be wearing basketballs, footballs, baseballs, or soccer balls. No “future quarterback” graced the body of my little one.

I hated to dress him in a constant reminder of what he might never do. The wheelchair was always a possibility and that made sports seem pretty unlikely.

These days I find I don’t notice these things very much any more. Sports aren’t my first pick, but that’s only because Charlie loves music, so I try to pick “rock n roll” themed stuff for him instead.

I’ve let go of some things. It doesn’t sting any more that Charlie might never play baseball or basketball. He might still be a fan. He might play wheelchair basketball. He might have never played sports as a typical child–Lord knows I was no star athlete.

So, one hang-up gone. Only five thousand left to go, right?

Do you have any hang-ups? Making any progress on them?

family of three

Name Game

I’ve got names on the brain so forgive me if you’ve heard this one before.

Notice I didn’t say stop me? I’ve been listening to baby stories on my Facebook page and got inspired to tell Charlie’s again.

Have I ever told you, oh Interwebs, that Charlie’s name should not be Charlie?

You see, we selected two different names that we like equally. In our heads, one name was for a brown-haired boy and one was for a blonde. We assumed our son would have brown hair like my husband and I both do, and so we also assumed that our son would be named Charlie. We didn’t really call him Charlie in advance or anything, though–we were waiting to see if he looked like a Charlie.

Well, Charlie’s dramatic birth happened and I was given no moment to lovingly cradle my baby in my arms. Instead, I glimpsed a foot and later waved at his isolette as it was rolled off to emergency transport to the Children’s Hospital.

I really wanted to wait–to make sure he looked like a Charlie. But he got sicker and sicker and they called twice asking me if he had a name yet. I hated the idea of him dying without a name. I hated strangers calling him “baby boy.” So Charlie it was.

Later, after the puffiness had gone down and the tubes were removed, Hubby and I agreed–he was not our vision of a Charlie. Had we been given the time, we certainly would have gone with the other name.

At that point, he was Charlie, and had been for several weeks. A legion of people had prayed for “baby Charlie.” There was no going back. Whenever I try to explain that he doesn’t look like a Charlie, people disagree with me. I guess it suits him.

Does your child’s name have a story? I’d love to hear to it.

boy laughing

Sandman Updates

You may recall that we were having some serious sleep issues at our house. Lots of waking up, lots of middle-of-the-night TV, and not nearly enough sleep for Hubby and I.

Well, you guys, the lovely people inside the computer, left me about a million suggestions and Hubby and I started working our way through them. We also paid a visit to the pediatrician to make sure he didn’t have swollen tonsils which can lead to sleep apnea.

Well, tonsils were fine and so we started experimenting. We seemed to have found a solution. We’re still not in perfection land, but waking up an hour later or falling asleep later is more the problem as opposed to waking everyone up at two wanting to party.I MUCH PREFER getting up an hour ahead of schedule to trying to keep a three-year-old happy at two in the morning.

So! What was the solution? Really, it was a combination of things. First of all, we have become re-dedicated to our nightly stretch. Each night we spend at least twenty minutes slowly and thoroughly stretching out Charlie’s hamstrings. I’ve heard from several adults with CP that cramping during the night can be a problem, so we figured a good stretch might help with that.

The other major thing we changed was eating. We now feed Charlie a pretty sizable meal right before bed. This goes against what a lot of people might suggest, but the kid has such a voracious appetite, it seems to be working. He eats two eggs (or the equivalent) before bed every night. I swear, we should get some chickens because egg consumption is getting crazy around here.

In addition to these two big changes, we’re also putting him down about half an hour later. He goes to bed incredibly late for a preschooler (nine o’clock), but every single member of my family is a veteran night owl, so I can only assume that he’s taking after my side of the family.

So that’s where we’re at–not perfect, but SO much better than before

boy looking at camera

Charlie's winter eczema has returned

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On a related note, Hubby and I have decided that Charlie is now old enough and healthy enough to sleep in his own room. Since he was born, he has always slept in our room. When he out-grew his co-sleeper, we put a crib mattress on the floor next to our bed, bumpered it with some pillows, and there’s he remained for probably the last two years. I know there are a lot of people who would be horrified by this, but kids with epilepsy have a nasty habit of dying in their sleep, so I was always really worried that something might happen to Charlie. After a couple of years of uneventful sleeping, I feel pretty good about moving him to his own room although it will definitely have to be a gradual process. I’m still trying to decide on whether or not we need a “baby” monitor.

One of the things we are already doing, however, is getting Charlie more comfortable in “his” room. Before now, it’s just been a place where I keep his clothes, craft supplies, etc. We’re rarely in there. So I went and bought a TV at a thrift store and put it right down on the floor in his room. Let me tell you, my kid loves a TV and he loves buttons. As far as he’s concerned, there’s little in life as awesome as a TV that has all the buttons in reach. We’ve got it hooked up to a DVD player which we leave running during the day, so all he has to do it turn it on and the fabulous Mrs. Rachel Coleman will appear to sing him songs. It’s as close to paradise as this three year old can get.

And this (omigosh, if you are still reading, thank you) has led to my most-favorite Charlie development yet.

Charlie can now move from room to room.

I have done almost everything I can think of to encourage Charlie to be a little more independent. He is able to get around, so my ultimate goal is for him to be able to move from room to room–even if that means he commando crawls all over the house. I’ve tried all sorts of things, but he has remained stuck.

Enter: his own TV.

The other day he was in the den, listening to his iPad, when he caught sight of the TV in his room, which was still on. Wouldn’t you know he just crawled right into his room? And later, he crawled back into the den! I announced this on Twitter and got like no response. I can only assume that the rest of the world has no idea how long I have wanted this to happen. Also, how many doors this opens for Charlie. He can go where he wants!

We’re still a long way from moving about the entire house, but I’m fine with small victories.

Boy crying

Charlie did NOT want to go on a bike ride

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