Friday, March 20, 2009

Cerebral Palsy Awareness Day


In honor of Cerebral Palsy Awareness Day, there is a sweepstakes going on over at "Life of Logan." Check it out, follow the rules and enter to win a couple of pretty cool prizes, including one from my friend Melanie.

A few quick facts about Cerebral Palsy:

- The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Monday, March 9, 2009

Copying Coping

I've mentioned in past posts that through ABR I have met some really great moms to other kids with CP, right? And in particular, I have had the good fortune to spend some time with one such mom named Katy, who goes by the name Bird on her blog, yes? Well, as I have done in the past, I am totally freeloading off one of Katy's recent posts on coping when you find out your child is going to be disabled.

Normally, I may feel a little bad about totally mooching off her post idea (not that the rest of my posts are so spectacularly original or anything), but, you know, it's late, I'm tired, I am long overdue to post, it is a great topic, and Katy herself was inspired to write it after reading a post from Melanie (another awesome mom I've met through ABR).

Katy writes the following about her son Charlie:

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

This is exactly how I feel about Fletcher, at least the vast majority of the time. Thanks, Katy, for giving me the words and also the incentive to post them (amazing how I find cut-and-paste posting is so much less intimidating than, I don't know, completely original thought).

I also can relate to the part in Katy's post where she wonders if her past experiences were a way of God preparing her to be a mom to a child with special needs. I have no doubt that is what happened to me. Unlike Katy, I didn't have any prior experience with kids with special needs, volunteering, or really even praying regularly for that matter (all three of those have increased tenfold as a result of Fletcher, though). Instead, I think I was prepared by enduring isolating circumstances.

One of the toughest things I think moms of children with special needs face is a sense of isolation. Not many people can relate to what you are going through, and, afraid they will say the wrong thing, people don't really talk about it (and I don't blame them, I was one of them, once). My version of parenthood is so diametrically opposed to the "typical" parent experience that it becomes hard to relate to other moms at times. This is nothing new for me, however.

Nothing about Fletcher, from his conception, to his birth, to his homecoming, etc, etc has been typical. It took us two years and four IVF cycles just to conceive Fletcher (and even the cause of our infertility and the cycles themselves were atypical... we were outliers of the misfits!). Then I develop a condition that only half of one percent of pregnant women get. Then Fletcher is born so soon... and you know the rest. I don't recount this here to garner sympathy, rather I am trying illustrate the point that I have gotten plenty of experience of being "not normal" when it comes to children, and I really feel like it has prepared me to have a child that isn't like the others. Just another way perspective changes everything.

Sunday, March 1, 2009

Second Anniversary

Today is the second anniversary of the day we got to bring our precious baby boy home from the NICU, exactly three months after his birth and two weeks before his due date.

Many people talk about how the most nerve-wracking car ride of their life is the one bringing their newborn home from the hospital. I say try bringing home a 4 pound three-month-old who can barely fit in the car seat and is on supplemental oxygen and an apnea monitor!

And lest you feel like I am exaggerating about barely fitting in the car seat, here is a picture from what us NICU grads know as the "car seat test." Notice how the chest buckle is right up against the crotch-latch. The baby has to sit in the seat and not set off an alarm (apnea or bradycardia) for the greater of an hour or the length of your commute home. Our nurse commented on how serious Fletcher looked during this trial. I had to remind him that us Smykays take our tests seriously (which is even funnier if you know my husband).

Today is also a big day for Smykeeney Baby. A link to her blog is in the right-hand margin, so go check it out!