Thursday, November 11, 2010

Carrie, go get your tissues now...

Our local Down syndrome group hands out a binder to new parents of children with Down syndrome. We got ours, along with a bunch of books about Down syndrome when we left the hospital with Jake. The binder has information about DSAMC (Down Syndrome Association of the Mid Columbia), and stories from parents in the group. The binder is being updated and we were asked to share Jake's story! Here it is!!

Our life with Jake
Our lives were forever changed in ways we never thought imaginable on September 25, 2008. That was the day that Jake was born. To us, his birth was pretty typical, nothing out of the ordinary. I was pretty shocked and a little disturbed to see that each of his hands had two webbed fingers, but “we see it all the time, it’s a easy fix” we were assured by the delivering doctor. I tucked my beautiful baby boy’s hands into his blanket so nobody would see, judge, make fun of, or love him any less. I was ashamed of myself for doing such a thing, but it felt like the right thing to do. I was protecting my son. We were about to learn that our sons hands were the least of our worries. Our pediatrician came to our room later on that evening, and started doing her newborn check up. Without skipping a beat she looked at us and said, “I believe Jake has Down syndrome”. Confused, heartbroken, scared, shocked, and in total disbelief were only a few of the emotions that slapped us in the face right at that moment. We spent the next few hours try to process that kind of life changing information. There was a lot of silence between out burst of crying that night. A lot of, “what are we going to do, how did this happen, I don’t know anything about Down syndrome” was said between Zach and I. A wave of extreme mental and physical exhaustion fell over us. We looked at each other, agreed that we were going to be ok and fell asleep. That was short lived. A few hours later our nurse came into our room to do her checks on Jake and decided to take him to the nursery because she wasn’t getting a good reading on his oxygen levels. Turns out, she did have a good reading. Jake had very poor oxygen saturations. Off to the NICU he goes. He spent 24 hours in the NICU, then another 48 hours on the Peds floor. While we were waiting to get the ok to go home, his diagnosis was confirmed. He did in fact have Down syndrome. I felt my heart break a little more seeing it on paper, but I was completely drained of emotion by this point. We went home.

Jake’s first year was exhausting. Not only were we still trying to accept our new life, but we were trying to understand it as well. Parades of people, necessary people, were brought into our lives. Social workers, in home nurses, developmental therapist, and medical specialist, to name a few. Exhausting. He had a lot of major medical issues to overcome as well. We spent a majority of his first year dealing with health issues. We became very familiar with MedStar, and Seattle Children’s Hospital. The silver cloud to this story…we learned who we are, and what we are made of. Acceptance is no longer an issue. We fully accept Jake the way he is and would have him no other way. We learned that we are not as weak as we once thought. Jake made us open our eyes to how precious life is. Trust me when I tell you, it took a long time to come to terms and accept that Down Syndrome is in fact a gift. It’s a different gift for each and every one of us. The gift is what you make of it. We choose to embrace Down syndrome as part of our lives. We don’t hide it, we don’t run from it, we love it and embrace it for the gift that it has given us.

The most important thing that we have learned is this…it will come with time. Acceptance will come. Understanding will come. Goals will come. In their own time, all things will come. And life will be good!


Jen said...

great story- that's great that famlies leave the hospital with all that info- we got absolutely nothing, hardly anything even from our own pediatrician. It sucked- your story will help so many others- love the pictures.(your story even helped me look at things differently) thanks for sharing

Anonymous said...