I've been delaying the writing of this blog post for a while now. I had to come to grips with it myself and had to be absolutely ready so that I would do it justice.
I'm ready now. We're ready.
You all know the beginning of the story... a beautiful baby boy born on Saturday, August 7, 2010, with long hair almost in a mohawk, big curious blue eyes and lots of love.
For two days, we were living the fairytale that we -- that every set of parents -- practice for and believe in for nine months and then some.
Then on Monday afternoon,the hospital pediatrician who had been looking after Zack came in to our room, saying he needed to talk to us. He's a great guy and we will probably never forget how well he treated us during our stay at the hospital and even after. Anyway, Dr. S came in and couldn't really make eye contact with us. His hands were shaking as he did his usual exam over Zack.
Then the bomb.
"I hope I'm wrong," he said. "I really think I might be, but I just can't ignore this. I need to be a good doctor..."
I got nervous, but was still eerily calm.
Maybe it's a bad case of jaundice. Or maybe it's getting really bad that Zack still hasn't passed his hearing test. Gosh, I thought, maybe he's sick.
"Zachary has several of the signs of Down Syndrome."
I nodded. Scott nodded. I don't think it hit us yet.
After a long, long conversation, I looked over at Scott and couldn't look back. It was the saddest look I had ever seen on his face. Maybe sad is not the right word. I don't know that either one of us could ever put that day, that conversation into accurate words. Maybe there are no words.
We didn't even have time to adjust to the words that had just slapped our faces and our hearts. Visitors were on their way to see our healthy baby boy and who were we to tell them otherwise. We smiled and put on our tough exteriors and talked about labor and delivery and Zack's eating habits and whether or not he looked like his mom or his dad. The words stung because inside, we knew he looked like a baby with Down Syndrome.
We kept the news to ourselves.
We watched our baby wheeled out of the room to get blood drawn for a chromosome test, the only way to ultimately tell whether or not a baby is positive for Down Syndrome, which, by the way, is basically just a genetic "whoops." Nothing causes it; it's no one's fault (although that's hard to accept sometimes. It's just easier if it's something or someone's fault). There's a 1 in 1000 or 1 in 1200 chance that there will be a genetic mutation, giving a baby one extra chromosome in his cells. Guess we're pretty lucky, huh?
By the end of the week, awesome Dr. S called us on a Saturday from his cell phone with the test results. He had called the lab in North Carolina every hour for the past day or two and called us as soon as he had news.
Zack tested positive for Down Syndrome.
The rest of our lives; our variation of that fairytale had begun.
My friend Julie expressed it best -- this news, at least for me, required a bit of grieving. Selflessly, I promise. I love Zack and I love him more and want to give him everything I can. But for a day or so, I had to grieve. I had to grieve for the baby and for the life of that baby that I had been imagining since before we even tried to conceive. For the plans we made throughout the pregnancy. For the child we thought we had for two days who disappeared with the shaking of a pediatrician's hands.
But now I feel healed already.
With every pull of my hair in his tiny fist, with every smile of his little mouth, with every blink of his beautiful eyes, I fall more in love with this little boy that was created by me and my best friend.
He is so lucky.
We have none, and I mean NONE of the current signs of a more serious variation of Down Syndrome.
His heart checked out fine. (I can not tell you the agony of watching your newborn son hooked up to an EKG, wires hanging off of his tiny chest and then ultrasound goo getting in between his fingers while a doctor performs an ultrasound of his heart at five days old). He needs no surgery, has no major heart defects typical of children with Down Syndrome.
Most babies with Down Syndrome have little to no muscle tone and will just go limp if held up in the air. Not our boy. He is stronger than most babies his age and loves to flail out those long arms and legs. Nothing makes us happier than to see his squirms and wiggles.
And he passed his hearing test finally! Down Syndrome often causes hearing problems. Nope, not our Super Baby.
He's eating well, has great digestion and is your typical newborn baby. We pray the rest of his life treats him as well, but are prepared for any outcome at this point.
We have chosen to surround ourselves with positive support only. That is making the difference. We have no time for negative thoughts, pessimism or a lack in faith for our little man. We have chosen hope and love and, perhaps most importantly, normalcy.
We ask our loved ones to continue to educate themselves and inform themselves about Down Syndrome and to ask us with any (any!!!) questions they may have. We are becoming advocates ourselves, as best as we can.
In the meantime, we have already gotten some books to help prepare us better. (I'm especially excited to start Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives) And we've been in touch with a local support group and are anxiously awaiting our first meeting with them in a month or two.
The pediatrician we've selected to see Zack had a daughter with Down Syndrome himself. He's already fallen in love with Zachary.
We are ready.
Our first week with Zachary was difficult. We spent five long days in the hospital. Really long days. On top of caring for a newborn, and recovering from surgery, we had to accept and deal with unexpected news.
But our second week brought us strength and love and hope.
And the realization that perhaps we are luckier than we had originally thought.
There have been some bumps along the way, but even those can't bring us down.
Perhaps we are the lucky ones after all.
*Life is so generous a giver,
but we, judging its gifts
by their covering,
cast them away as ugly
or heavy or hard.
Remove the covering
and you will find beneath it
a living splendor,
woven of love, by wisdom,
with power.*
-Fra Giovanni-
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