Thursday, March 26, 2009

Would I, Would He?

If I could, would I take away my daughter’s 47th chromosome and leave her Down syndrome-less? This question has been floating around the blogosphere.

It is not a possibility. It will not be a possibility. So why are we struggling to answer it? Consider what other questions lay behind the question. Do I accept my child as is? Would my child still have the same endearing personality without the Down syndrome? Did God specifically design my child this way? Is it wrong of me to want to excise the 47th C? Would life be better for my child if he or she had only 46C?

Yes, I accept my child as she is. I love her completely. If we could go back and not make her, we would not go back.

Maybe her personality would be the same, maybe it wouldn’t. This is a tangle of Nature vs. Nurture. I can see how her low tone causes her to be more mellow about everything which in turn causes us to respond to her in ways we might not otherwise, which in turn causes her to develop new actions and reactions. It’s the butterfly effect and yet our genetic makeup does influence our personalities. So there is no way to know the answer to this but either way, I am convinced she would have a wonderful personality.

No, God didn’t decide to throw in an extra 21st chromosome. He didn’t “do” this to her but He did allow it to happen. And I am glad He did because if He had stopped it from happening, she would be either never conceived or dead. (Uh, and in case you’re wondering, God doesn’t have a special needs nursery up there. He doesn’t pick out “special” babies and send them to “great” parents like us. Genetically speaking, sh*t happens and He can turn that into a learning experience and a blessing.)

Maybe it is wrong to want to alter our children into a more “typical” state, maybe it isn’t. We think nothing of having a conspicuous birthmark or an extra toe removed, why not an extra chromosome? Then again, surely these upgrades come with risks. Wishing your baby could magically not have Down syndrome is not the same as wanting your child to undergo a medical procedure that would alter his genetic code. One could make a subjective argument that the latter is wrong.

A better life? Well, that depends on how it’s lived, doesn’t it? We all hope our children turn out ok but the world is full of depression, divorce, addictions, and dysfunction. There is no guarantee that my typical children will have more fulfilling “better” lives than my 47C girl. More importantly, this life is ephemeral but what we do here determines our eternity. The Ds probably gives Kimani an advantage for securing a happy afterlife.

Yes. Maybe. No. Maybe. That depends. Those are my answers. Add them up and you get my answer to the first question, Would I? And, since it is just theoretical, I can vacillate at will.

My question is, will God take it away when He gives her a new heavenly body? (2Cr 5:1) I believe He will. While I think that anyone incapable of making a decision about Christ will be saved automatically (and that would certainly include some people with Down syndrome), I do not believe there will be Down syndrome in Heaven.

Does that mean He thinks she is imperfect as is? Aren’t we all? What is His view of perfection anyway? I suppose that would be Jesus, and my dear girl will not be sinless...(especially if she takes after her mother). Whether it’s snitching an extra candy or some other disobedience, she will remain only human until her “house is torn down” and she receives a new, perfect one from God.

When we meet there, will she say to me... “Mom, you turned down a theoretical Ds cure? What were you thinking?” or “Mom, you were going to theoretically rip out one of my chromosomes? What were you thinking?” Lol, I don’t know.

Saturday, March 21, 2009

Celebrate the Beauty of 3/21

Before I had her, I had no idea that I could love like this. I had heard about it from those other moms with children who have Down syndrome, but deep inside I wasn't a believer. I thought that they said things like that to make themselves feel better about something they couldn't change. Oh, Lord, was I wrong.

To all those other moms who are celebrating their 3x21 cherubs today, Cheers and God bless you.

Thursday, March 19, 2009

Thinking Blog Award

Thank you Little Miss E for the Thinking Blog Award.

This award acknowledges the values that you have shown in your effort to transmit cultural, ethical, literary, and personal values every day.

And in the spirit of passing along the love, here's how it is supposed to work:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: Tag - eight other bloggers to do the same.

Ok, I said supposed to because I am not so good at these things and I do not have eight other bloggers I want to award. So I will just do my best. I am not adding a question because, gosh, over time this could make receiving an award quite a cumbersome affair.

1) If you could meet anyone, dead or alive, who would it be?
Jesus, after the crucifixion so I could ask him a bunch of questions, like...

2) What is your biggest fear?
That someone might steal one of my children.

3) Do you nap a lot?
Only in my dreams.

4) Who is the last person you hugged?
My baby girl. Not playing favorites or anything... just she was the last one to go to sleep tonight.

5) What was the last item you bought?
A dress and a bracelet for my daughter. (uh, really I am not playing favorites ;-)

6) If you could go anywhere in the world, where would you go?
Hawaii, and I get to stay there for a month with three nannies and a bottomless purse.

7) If you could go to the Oscars, who would you want to sit next to?
My husband. I get to be the one nominated.

8) Where is the best place you’ve vacationed?
A 14 day deep Caribbean cruise with my husband and most of my paternal extended family, compliments of my dad. Key West, Mexico, Costa Rica, Columbia, Panama, Aruba, and Grand Kayman. It was heaven on earth.

9) What is your most embarrassing moment?
Pulling a scrunched up pair of worn undies out of my jeans in 10th grade bio class. Next time I feel an uncomfortable lump, I will leave it alone!

10) What was the last movie you watched? The Grocer’s Son. It is French, and I fell asleep half way through it. Tant pis pour moi.

11) What is the luckiest thing that ever happened to you?
I didn’t die before I accepted Christ.

12) If you had a whole day to yourself with no work, commitments or interruptions what would you do?
Read, sleep, scrap, write... read, sleep, scrap, write...

13) Is there a major goal you have that you haven't yet achieved?
To write a book that helps to change the way someone thinks about something.

14) Drinks are on the house!! What do you order?
Absolut and Cranberry with a twist of lime, then Absolut Vanilla and Vanilla Coke, then a Mudslide, then water and aspirin.

15) Name one thing you would change about your life.
I would never have smoked.

I am passing this award on to Jennifer at Getting Down with Jesus because she deserves to be acknowledged for the values presented in her posts.

Monday, March 16, 2009

Stolen Embrace

“Do you want to hold her?” The nurse asks me. I do want to, but I am nervous. She is very ill now, deeply poisoned by an army of invisible creatures. Her body is so weakened that it has been skipping and faltering. There is a zigzag of wires and tubes connected to her, all feeding her body something it needs to survive this. There is a gaping hole in her flesh just above her stomach, where the stitches surrounding her feeding tube have slipped out. Through the hole I can see her dark red, almost brown, shiny stomach beneath the skin edge. I look away and face the nurse.

“Yes” I say bravely. I settle myself into the chair they have placed beside her metal and plexiglass bassinet. The hard, wide chair is set awkwardly close to the equipment because my baby’s lines don’t go far. I tuck blankets under and around me, trying to mimic the feel of a nursery rocker. It takes me a moment to drape a sweet smelling cotton blanket over me, arranging the pink-edged swath across me to form a barrier between my perhaps germ-infected clothes and my daughter’s fragile body. As I get settled, the nurse adeptly wraps up wires, moves feeders and medicine pumps, disconnects the heater, and scoops my child out of her bed into my waiting arms.

I study her beautiful face. She is so dainty with a rosebud mouth, tiny nub of a nose, and huge dark blue ringed eyes. I want her to smile or somehow indicate that she is happy to be with me, that she knows me to be different from the hoards of others who handle her but she is too sick for such affections. Her six and a half pound body feels very heavy to me. I realize that she is perfectly still, not breathing. Bile and panic rise in the back of my throat.

“She’s not breathing.” I manage to squeak out to the nurse who is hovering over us. The nurse quickly turns to consult the monitor screen. The numbers reassure her.

“She’s ok,” the nurse replies over my shoulder.

“She’s not breathing,” I say again louder with strong emphasis on the word not.

The nurse glances at the screen again. She puts her hand on my shoulder to soothe me and says, “She’s ok. It’s ok.”

A baby girl in our pod has died this morning. Infection, our shared enemy, destroyed her overnight. Not more than an hour ago I was with that mother and child as the mourning process began in the hospital’s small “family” room. That mother and I had passed a bit of NICU time together waiting on our daughters. She held out her baby, already dressed up like a little princess, and I accepted the bundle because no other reaction seemed appropriate.

It has only been a few seconds. The nurse trusts the monitors and she thinks I am having a reaction to the morning’s sorrow. But now I know what it feels like to hold a lifeless baby and this feels exactly the same. I am shaking from an overload of adrenaline in my system. I want to throw my baby into the nurse’s hands. “She is NOT breathing,” I hear myself shouting. My arms will not obey me and I cannot lift her up.

Finally the monitor corroborates with me and sounds the alarms. Immediately the nurse whisks my baby away, up on to the open bassinet, and begins to bag her with a portable mask and oxygen pump. I stare at the monitor watching for my baby’s return. It comes swiftly. The nurse assures me that Kimani is ok, that the apnea has passed.

It is not ok though, because now I don’t want to hold her anymore.

Friday, March 6, 2009

Scraps of the Good Life

I arrange photos of my busy children on the 12 by 12 inch patterned paper. Then I rearrange them, wanting to get it just right. It is not a birthday or holiday layout, just an ordinary moment in the backyard. Two boys playing in the dirt pile. I stare into their happy faces and try to think up a catchy page title.

And then it hits me. There is no picture of the older child pushing the younger one face first down the pile. There is no record of the little guy’s muddy face and his frightened, angry screams. There is also no picture of the little one throwing a Tonka truck down the hill into the bigger child’s back. Nothing to remind anyone of how that boy fell over screeching “mama, mama, he hit me.” I’m not scrapping the ugly stuff.

In my defense, it would probably be poor parenting to run for the camera, instead of a washcloth, when your howling two-year-old’s face is caked with dirt. So there really aren’t any pictures of the bad times. But, I didn’t mention it in my page journaling either. Hmmm, I pull out a stack of scrapbooks and flip through them with new vision. I am struck by my lies of omission.

I am recreating their childhood. I am memorializing the parts I am pleased with. I am embellishing the pages and their memories. I am showing them what to keep and hoping that they will forget the trucks to the back, especially the ones I have thrown (put the phone down, it's a metaphor). I take a moment to contemplate this, wondering if it is a bad thing or not.

My nearly pictureless childhood weighs in on the matter. There was so much dirt in my face. Suddenly a great lie of a page title pops into my head, A Little Dirt Never Hurt. Pushing my sad thoughts away, I reach for my die cutting machine.

p.s. Billy has been thinking about memories too. Turns out there is a new name for my style of scrapbooking... propranolol.