While it’s true that every Thanksgiving brings with it much to be thankful for, this year’s Thanksgiving (our son’s first) was perhaps our families most thankful Thanksgiving yet. (Whew….try trying that 7 times real fast!)
This year our family has something to be thankful for that less than a year ago we would have never imagined it even being a part of our life, much less saying we were thankful for it. But we are.
This thanksgiving we’re thankful to have a son with Down syndrome.
Our son almost came with an extra, extra bonus….
A few days after our son surprised us by being born with Down syndrome we were called to our pediatrician’s office to discuss something that came back on his newborn screen. This something ended up being the possibility that our son could have Glutaric Acidemia, type 1 (GA-1), in addition to Down syndrome.
Now if you’ve never heard of GA-1, you’re not alone. Neither had I until this doctor visit, but I’ll give you the long and short of it: It could kill you. We were told that it was likely a false positive, not to worry (yah, right.), and to go home and enjoy Christmas with our new baby (after taking him to the lab to have some blood drawn.)
I’ll never forget walking in the front door of our apartment after that doctor visit. I was still trying to wrap my mind around the fact that our son was unexpectedly born with Down syndrome just a few days earlier. I was still trying to sort through what that meant for him and for our family. I was still hurt, confused, heavy hearted, and worried about our little baby boy. I mean come on, he was only a few days old, and it takes time for a new parent to sort through all of the emotions of a Down syndrome diagnosis.
Now not only does my son have Down syndrome, but he may also have a very rare metabolic disorder that could kill him. Wow! Talk about kicking a guy when he’s down. I”m getting teary eyed just reflecting on that day as I draft this post.
You can read more about what I call the scariest week of my life if you’d like, but after about a month and a half of testing, which included taking our few weeks old son to a geneticist to have his DNS sequenced, he ended up not having Glutaric Acidemia. Thank God!
The 6 weeks that changed my life…forever.
Waiting on the test results to come back (about 6 weeks) really changed my life in more ways than anyone will ever know. When Noah was born I had to think about how our life was going to change as a result of his being born with Down syndrome
When I found out Noah may have GA-1 I had to think about how our life was going to change if Noah had Down syndrome and Glutaric Acidemia, including the possibility of loosing our son. That was a whole different animal.
Down syndrome I was ok with, GA-1 (and the reality that our son could die) I was not. I had to have a lot of heart to heart conversations with God during those 6 weeks. I remember pleading with God that our son would just have Down syndrome. When all the dusted settled (and before we received the results) I came to grips with the fact that our children are not are own. They are God’s. They belong to them. We are their parents, their stewards.
One day they will leave us. They get married, they move out, they get a roommate and at some point our children die. Sometimes they die after us, and sometimes, sadly, they die before us. I say that not to be morbid, but just to remind you (and me) that our children aren’t forever. We never know what any day may hold. Our children (and us) are only one Doctor’s appointment away from having their lives changed forever.
Yes, that’s scary, but you have a choice…
You can either allow fear to paralyze you and keep you from enjoying the joy of today, or you can move forward choosing to trust that God truly does have the whole world in His hands, including you and your family. It doesn’t mean that what your facing isn’t scary. But it does means coming to a very real place in your life where you truly trust that God is bigger than your fear, and He is able to see you through it. Your fear doesn’t control you.
When fear comes knocking at your family’s door you tell it to go somewhere else, because fear doesn’t win in your house, God does.
All of that to say that on the other side of that 6 week waiting period, I came out a different person. God used those 6 weeks to help me deal with my fear and anxiety issues. (Yes, my name’s Rick Smith and I’m worrier!) 🙂 He wanted to show me that He is able to give us joy even in one of the scariest moments of our life. Up until that point in my life I had only heard stories about God giving people this kind of joy, but now I know first hand those stories are true. God really can meet our needs when nothing else on this planet can. How amazing is that!
So on this thanksgiving (our son’s first) I am extremely thankful that I’m not faced with the reality of raising a child born with Down syndrome and GA-1. Don’t get me wrong, our God is a big God. If Noah would have had GA-1, He would have certainly enabled us to get through it. However I’m speaking honest and from my heart when I say I am thankful that we don’t have to go down that road.
To the parents of a child facing a posable Glutaric Acidemia diagnosis…
If you ended up on this page somehow because your child is facing the possibility of a GA-1 diagnosis I’m sure I’ve only added to your fear. But I want you to know that I’m speaking to you from the heart, and yes as a parent that is scary, very scary. Your child really can die as a result of it. That’s perhaps one of the scariest things I can think of. Now let me try to give you some encouragement.
First, there are a lot of false positives on the newborn screen. and it’s very likely that will be the case with your child. If that’s not the case, GA-1 is like most everything medically related in that there is a wide range of how it affects a person. Your medical team will help you develop a plan for your child that helps keep them from having a metabolic crisis. Furthermore, as stressful as newborn screens (and false positives) can be, it’s all worth it if it helps just one child catch a genetic condition as early as possible.
As with almost everything medically related, the earlier a person is diagnosed with a condition, the better. I tell you all of this in an attempt to encourage you. I’m sure you are very scared, but know that we live in a time like no other time in history, and our medical community has become very good at helping children with all sorts of conditions (including GA-1) live long and healthy lives.
Noah’s first Thanksgiving
As I’ve mentioned we have a lot to be thankful for this Thanksgiving. I can honestly say that I’m thankful to be the parent of a child with Down syndrome. This child has changed our family’s life in more ways than I could even begin count. I’m thankful that my son is healthy. That he is growing, learning, and developing. I’m thankful for how joyous and fun this little boy is. It’s awesome being his daddy.
Will there be bumps in the road? Sure. Will there be lots of scary times in our future? Sure, what child doesn’t scare his parents from time to time? But for today, for this first Thanksgiving with our new little baby boy, things are ok. The rush of emotions we dealt with the few months of Noah’s birth has subsided. I don’t freak out as much every time we have to take Noah to see his pediatrician (although waiting for the results every time Noah gets a CBC still causes my heart to beat faster than normal.) I don’t get (as) worried every time Noah gets a little cough.
Other than Noah having a little virus (as you can see in some of the pictures) today is a great day of enjoying life, eating lots of yummy food (thanks Abbie!) and enjoying time with family…and being very, very thankful that my son just has Down syndrome!
I know it’s not Thanksgiving right now, but it’s always good to reflect on things you’re thankful for. So please take a second to leave a comment below and let me know one or two things that your especially thankful for right now.