We were preparing for Sawyer's birth. We knew he likely had Down Syndrome. We researched and reached out to folks and tried to learn what we could. (In fact, while in the hospital all the social workers/doctors/nurses would come up and try to tell us about something related to Down Syndrome. We'd say, "yes we've heard of that". They soon learned we were their worst nightmare. We were internet savvy and would ask questions to which they had no answer. But I digress) We also knew he had some sort of heart defect. About fifty percent of babies born with Down Syndrome have a heart defect. What we didn't know was he would be the 1 in a million baby to have Pulmonary Arterial Hypertension. What we didn't know was there was no cure for PAH. What we didn't know was how few doctors wanted to deal with us after such a diagnosis.What THEY did not know was our Sawyer was a fighter! He was too stubborn to believe their prognosis. He comes by that honestly because we, too, are stubborn and refused to follow the status quo. If the doctors didn't have a known cure, we'd follow our instincts and fight right along beside Sawyer. Sawyer slowly began to convert the doctors. They slowly began to believe he would get better because indeed, he was getting better. In the end, we had 3 very good cardiologist and 1 wonderful surgeon(along with hundreds of folks sending up prayers on his behalf) who stood beside us when the rest of their doctors were still doubtful. They operated to correct his heart defect about 10 months after his birth. Immediately, his PAH went to normal. Still there were doubters. Our 'team' refused to listen to the naysayers. Today, this is the result of their dedication. He's still stubborn. He is also very funny and smart and annoying (according to Turner) and loving and engaging. He's all any mommy and daddy could ever want. We are blessed beyond measure because he is ours.
We gave him drums for his birthday. We decided to give them to him early so he'd have all weekend to play them.(Dad, this is a video. You may not can play it)
3 comments:
Um, so this is gonna sound really crazy but...
I always thought you had adopted Sawyer.
Hmm. Wow.
So I originally found your blog on the Gladney FBI list a really long time ago. Then I saw the Reece's Rainbow video on the blog. (That was the first I had heard of RR and I LOVE it.) I guess I just assumed that you had adopted Sawyer through RR.
Not that it really matters at all one way or the other but...hmm. It's just funny when you assume something is one way and it isn't really.
Way to be stubborn! (That's a compliment.)
Sometimes we (doctors especially) rely on our own strength and knowledge. And when it goes beyond what we can do, we think it isn't possible (and/or we don't believe that God can do it when HE CAN!).
That is a great story of your lives!
Happy Belated Birthday to Sawyer.
So you gave your 5 year old a drum set. Now I know what I think is true--you are a brave and amazingly nice (and slightly crazy?) family! Hope you all have a lot of fun! God Bless.Debbie
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