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Tuesday, November 23, 2004

No more dances

We knew it when we first saw him, that terrifying and exhilarating day: Will is pretty darn special.

You can't deny his cuteness, but it's more than that. Will seems to touch people in ways his parents are still learning to comprehend. In the past few weeks, friends and strangers have placed Will on prayer lists from Detroit to the Vatican. People we don't know are making quilts. Nurses are stopped in their tracks by his charm. Pretty impressive for a guy who should still be in the womb.

Will has already taught us a lot, and Mo and I think he has much more to teach us. Will has a genetic condition.

We've danced around the issue since he was born, especially on this blog. We can't dance any more. Beaumont's chief geneticist is fairly certain Will has a condition called Cornelia de Lange Syndrome. There's a slight possibility he may have Noonan's Syndrome.

Neither are good. Both involve retardation and severe shortness. Cornelia de Lange is more devastating. At best, children with the syndrome will speak by the time they are five or six and be mildly retarded. They'll grow to four or five feet tall and have normal life expectancies. The worst? Severe hearing and vision problems, autistic-like tendencies followed by an early death. The long-term prognosis is better for Noonan's Syndrome.

There is a blood test to determine whether Will has either syndrome, but it's inconclusive. At best, it would confirm the existence of a syndrome. A negative result would not alter his diagnosis. That's not because Will is healthy. It's because the test is very limited.

Unfortunately, Will's diagnosis doesn't explain his current problems. Instead, it complicates them. Will is nearly term and still on the ventilator. That's not the fault of either syndrome. What's more, the ventilator is a vicious cycle: The longer you're on it, the more damage it does to the lungs, the more damaged the lungs, the more you need the ventilator.

We struggled mightily about whether to post this news on the Internet. We began the blog to keep close friends and family in the loop about Will's progress and to avoid having the same conversation 15 times a day. The blog has grown into something more than that. We're happy for it, but hesitant as well.

A parent's first instinct is to protect their child. We hate the thought of anyone judging, ridiculing or pitying Will. Mo has already become a pitbull for Will. My pity extends to anyone who utters the wrong word about him in her presence.

We thought about starting an alternate blog to post the real news, the stuff prying eyes and friends of friends couldn't see. While tempting, the idea is unseemly. It suggests we're somehow ashamed of our son. Nothing could be further from the truth.

As journalists, Mo and I tend to err on the side of commission rather than omission. For too long, problems like Will's simply weren't talked about. If they were, hushed tones were involved. Thirty years ago, Will would have been sent off to a state institution.

We're not going to become part of that legacy. This stuff happens. It happens to people whose parents are college professors and people who thought their children would become senators. It happens to people -- like me -- who have spent a lifetime avoiding people with disabilities because he was afraid of them. It happens to people like his mother, who's involved in the cystic fibrosis community.

It's lightning in a bottle, a chance gene that went astray through no fault of us, our parents or grandparents.

Every baby changes parents' lives. Every parent loves their child in ways that surprise them. We love Will more. His diagnosis makes us love him more. He's overcome longer odds in his 39 days than I have in my entire life.

We cherish the great moments, the times his eyes widen every day at 7:30 p.m. and he wiggles his hips and sucks on his ventilator tube. We're thankful for those times his eyes seem to follow us as we read him poems. We love the puddles of drool he leaves on our stomachs when we hold him.

There are many tears ahead. We've all but been assured by doctors the next two or three months could be the hardest of our lives. The facts are more frightening, the future is murkier, but our job is the same: Love Will more than you think is possible, then love him more. Each and every day.

5 Comments:

Anonymous Anonymous said...

Stumbled into your blog. For what it is worth, we had a 2 pounder nearly 11 years ago. She has grown up to be a wonderful child and I can't imagine life without her and her two younger siblings.

Good luck to you and Will.

12:33 AM  
Blogger amylee said...

I admire your courage and understand your hesitation about posting this latest news. Will has been blessed to be given to two really strong parents -- parents who will give him the best life he can possibly have. What a wonderful thing to cherish this Thanksgiving!

11:20 AM  
Anonymous Anonymous said...

We can't wait for that day when we can finally meet the little guy who is charming hearts and whose lifeforce can't be be broken. He, like his parents, continue to show us what life and love is about.
We are inspired by your strength Mo, Joel and Will. Know that when you need to lean back, your friends will always be here to provide unflinching support. Jeff and Kim

12:22 PM  
Anonymous Anonymous said...

Hey Guys (including Will!),

Thanks for sharing ALL the news on the little guy! He's a special dude and deserves all the love and awesome support he has from his parents, family, friends and health care team.

Thanks also for sharing your views about how others may feel or think. It's hard to know what to say or do, but you bringing up your wishes makes it easier just to talk/write to you in a honest and open way.

Somehow, Will's story and pictures, make us know and love him. He's really a cute guy and almost appears to be looking at us in his pictures. We guess he's a ham (just like his folks!) and likes the attention. Heck, how many babies have professional journalists writing about them and get so much press!

We love the three of you, hope and pray for you, and know that God will take care of you in his own way.

Much like everyone else, if we can do anything, PLEASE don't hesitate.

We love you all!

Gary, Lucy, Alex & Jeffrey La Hood

4:54 PM  
Anonymous Anonymous said...

Hey Guys,

You show me in every entry how much there is to be thankful for and how much strength can be mustered from seemingly impossible situations. Will's stamina and determination inspires me every day and I am thankful for your continued sharing and openness on the blog. I check in every day and believe that all of the good thoughts, warm wishes and love manifested from including the masses really can have powerful positve results for all 3 of you. An amazing bunch you are!

Hey, from the pics, it looks like Will is hankerin' for a lil' turykey. Are you going to try to sneak him a leg? Happy Turkey Day!

Michelle Belanger

8:57 AM  

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