That Damned Ol' Baby Book

I always hear parents commenting about how their second (and subsequent) children get the short end of the stick when it comes to baby books & photos. Kidlet #1 rules supreme in baby-ness documentation, but who has time for all of that when the next baby, or two, or three come along?

Like other parents I vowed not to let Jordan's baby-ness slip through the cracks. And, to be honest, I haven't. That's not the way I am. I'm sure if I counted there would be an approximately equal number of pictures of Jordan & Avery through 15 months of age. And Jordan's baby book is as full as can be, too.

But that's the sad part, too. Opening up that damned ol' baby book for Jordan is a whole different beast in our home. It's not that I don't have time, or forget, it's that I don't want to get it out. Well, at least part of it. Perhaps some of the pages I should just tear out instead of having to flip past them: Doctor Visits (my comment: "too many to list here"), Record of Firsts (still blank), When I Was A Baby (still blank), So Many Reasons Why I'm Special (uhhhh, where would I start?). And second to that are the pages staring back at me that I can only dream of using, if we are so lucky: My Second (Third, Fourth, Fifth) Birthday, My First Day Of School.

So tonight was the big baby book event. I finally got it out and wrote down the tooth that came in on 6 March 2007 & her MMRV vaccine from Wednesday. I made a very specific mental note of the tooth on that date, but had been avoiding the book until there was more than one thing to write down (thereby minimizing my exposure to those pages listed above).

Along with the baby book comes the complimentary growth chart & medical log from the pediatrician's office. Jordan's on chart #3, whereas Avery's only 1/3 of the way through her first chart. Every time we go to a doctor's office we write it all down -- length, weight, head circumference, percentiles. These are things I always look forward to when Avery goes to the doctor & has her check ups. But with Jordan it's torture. In particular I hate the head circumference measurements. I hate watching them, I hate hearing the results, and, fittingly, Jordan hates it more than I do. She turns & screams & fights as soon as the tape touches her head -- as though she knows it's bad news (hey, maybe she does know more than she's letting on).

Getting her head measured reminds me how scared I still am, and how, even though I feel like we've accepted Jordan's condition, we are still broken from the cruel turn of events that broadsided our family 15 months ago. I'm scared to know her head circumference (in case it's not growing), I'm scared to get another MRI (in case her brain is still atrophying), I'm scared of what a new EEG would show & when she makes new, strange uncoordinated movements (in case she's having new & different seizures), I'm scared to find out what her actual diagnosis is (in case it's something truly horrible)*. Of course the scientist in me wants to perform these tests & collect the data, follow the curves, extrapolate into the future. But, the parent in me far outweighs the scientist when it comes to Jordan, and even though I feel like I do want to know what's going on, I'm much more comfortable on a daily basis not knowing (ignorance is bliss, right? right?).

We resolved to make 2007 the year we got back to "normal" in this family; make Jordan a part of the family instead of the center of the family. We're focusing on therapies & equipment to make life more manageable for all of us, instead of doctors and tests to find answers and cures. It's good to move forward a bit, even if the actions far exceed the emotions. It took me forever to say 'wheelchair', and I still joke about Hannibal Lector each time the 'stander' comes up -- humor helps dull the pain of having such giant pieces of equipment in the living room to remind me in yet another way how "un-normal" we are. [I remember when the baby swing and exersaucer were considered obnoxious baby equipment cluttering up our living room. Ahhhhh, for an exersaucer. . . .].

So when she smiles, we cherish it and play it up. When her neck doesn't instantly flop forward in her wheelchair or car seat it's worth noting out loud. When she allows something in her mouth we enthusiastically call it sucking, even though it's really just an uncoordinated chewing motion (nothing is ever swallowed when we give her a bottle or even some soft food, but she can certainly fool us into thinking it is at the time). We don't spend hours and hours chasing doctors and investigating diseases so rare that less than a hundred people have been diagnosed with them worldwide (we've ruled out so many of those we're literally running out of diseases). But it's still painful, every day, to see people and their kids out and about, doing things families do, playing the way siblings play, laughing, smiling, crying, fighting, and not feel as though we've been robbed of those simple treasures. Even the other special needs kids** we know from PRIDE are light-years ahead of Jordan -- singing, crawling, clapping, well, you get the idea.

I find that I prefer my time alone with Jordan, when I can just hold her and give her kisses, and tell her over & over & over again how much I love her -- just like you can do with newborns (but usually not-so-much with 15-month-olds). Time stands still then, and there is no comparison to what she should or could be doing. There are no worries about what we did "wrong" to deserve this, even though we tried to do everything right***. There's just Jordan.

So perhaps while the baby book is still out tonight I'll just tape together those yucky pages, and as overwhelming as it seems, see what I can come up with for the So Many Reasons Why I'm Special page. One thing we DO know about Jordan is that she really is special. One in a gazillion, in fact. And we've got the doctor & lab reports to prove it!

*At least I don't have to worry too much about the latter, there's very little chance we'll ever have a diagnosis for her. And, as I've said before, even if we do have one someday, there's virtually no chance there will be any treatments, cures, or even prognoses.

**While those children really do have special needs, Jordan is a "complete needs" kiddo in my book, and there aren't too many of those around anywhere, so it's hard for people to understand. As Devon says, if someone sees a child with a cold it's easy to relate to the agony the family is going through, and empathize with the situation. But Jordan's condition and development is so obscure that it must be virtually impossible to imagine, let alone relate to, even if your child does have special needs.

***I know, I know, the laws of nature apply equally to everyone. Life is random, and someone has to draw the short straw every-so-often. But, really, no matter how much I try to remember those truths, there's a semi-constant track in my head playing this recording: There are crack-whores out there with healthier babies than mine. I hope that record breaks someday soon. Luckily it's getting a little scratched up & less frequently played than last year, starting about this time.