We're waiting for the call from the Surgery Scheduler today. Both Annie and I are completely exhausted from a weekend of worry and anticipating the days and weeks ahead.
I'm back at work this Monday morning, finishing up my television commercial. I met with the client on Friday afternoon and he seemed pleased with it.
It's a new month. October. Fall and Halloween and now a new occasion, at least for our family, Down Syndrome Awareness Month.
Annie was at Target yesterday with Silvi, looking at some of the Halloween costumes. Later that night she wept when she realized that she didn't look for a costume for Ian; she didn't think he would live long enough to see Halloween.
Some friends brought us lunch on Saturday. They lost a baby to Trisomy 18, a devastating genetic disorder. They said more in their actions than words. They understand.
We went out for breakfast with Annie's sister and her husband and kids. I was lousy company. Afterwards, we took the kids to Adventure Peak, one of the largest indoor play structures in the US. It's a two-story climbing structure like the one's you see at McDonald's, only this one allows adults to climb as well. It was a nice change of pace to chase Silvi through the labyrinth of tunnels and rope bridges, even if I can't lift my hands above my head today. At least I didn't break my finger like my brother-in-law did.
Ian sleeps and sleeps and sleeps. It's because his lungs aren't getting enough oxygen-rich blood. He is most awake from 6pm - 9pm, which is great because I get to be with him.
I have started reading the five books I recently purchased on Downs:
- Theology and Down Syndrome: I bought this book because I need terms and definitions. Language has the power to heal, to shape and to define. A scholarly study unlike any other.
- Life as We Know it, by Michael Berube: Too often Christians "read the end of the book" first to find out what happens. Berube is an agnostic and I'm hoping he will help me to better understand the muck between "the first and last chapters."
- Becoming Human, by Jean Vanier: Founder of L'Arche. Who understands better the practical day-to-day life of those with mental disabilities? (Other than parents, of course.)
- The Man who Loved Clowns: So far, this simple story is the most moving and profound. Funny how that is so often the case.
- Critical Reflections Of Stanley Hauerwas' Theology Of Disability: Another scholarly text that has me asking many difficult questions. I'll write more on this later.
6 comments:
Hang in there guys. Hang in there! Babies with DS tend to sleep ALOT. Some of it has to do with their lungs and heart if they have issues there, but it also has to do with low muscle tone.
When a baby has low tone it's more work to get the body to move. For a typical baby to move an arm around is nothing. For a baby with DS who has low tone, working on moving that arm can be exhausting!
Lots of new parents ask, "When is this baby gonna WAKE UP???" Angela didn't wake up till she was 4 months old, which was about to drive me crazy. That and a lack of smiles! Finally one day her alert times lasted longer and longer, and there it was... a smile!!! Until those first smiles happened it kind of felt like I was just a tool to this baby's existence and nothing more. The smile changes all that. It melts you.
I have some friends who's babies weren't sleepy for quite as long as Angela was, but it's definitely a trait with lots of new babies who have DS.
I'm quite interested to read what you write about theology and DS - it's an area completely unexplored by me
Sounds like you and I are reading the same books. I am not a Hauwerwas fan, but that might be because I graduated from UNC and not Duke! Joe's surgery was the hardest thing that we had to face. I feel for you, it is such a scary time. But the surgery changed everything. And you will find that too. Your baby may still sleep a lot, but you will see a difference right away in your baby's rosy complexion and remarkable spirit. I'll be thinking of you.
Adventure Peak sounds like a blast! I always wonder why kids get to have all the fun, climbing things & why we adults have to just watch. Take encouragement from those small moments of joy. They will grow more frequent. Also, tell Annie she's not the only mom who has had those thoughts. I have definitely been there, and not just when Ev was a baby! Evan slept a lot, also, until his heart was fixed. Then he was lively & healthy as could be, rarely even getting colds! He didn't even get the flu until he was 5 years old. Until this year, his heart was the only health issue we had really. And now his hip is fixed & he's back in the game. Doctor stuff can be so intimidating & scary! I'll be praying for you all this week.
Leah: Glad to know other babies with DS sleep this much; we were starting to get really worried. Can't wait for the smile, other than the gas-induced ones of course :)
Kim: Look for more pontifications from professor Tom, PhD in grand generalizations and speculation, in the coming weeks.
Amy: Thanks for the pop-in. I've got to check out your site if you're reading Hauerwas, (or not reading him.) At least you've heard of him.
Lori: I've been looking at Ian's hip and how it looks a little "off." Too much bend to it, seems to be. Next issue, I'm sure. One thing at a time. Thanks.
Yes - stop by: http://emmajoseph.blogspot.com.
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