When You Find Out You Have A Child With Down Syndrome
This is a true story. (I wrote this in a heightened state of emotion, but God has impressed upon to post this anyway)
I will start by telling you that in the last couple of days, we have gone through a myriad of emotions ranging from joy to heartbroken to anger with a bit of frustration and confusion added to the mix. It has even reached the level of questioning my own faith. I can honestly say to you right now that this is the hardest thing I have ever had to face; not even being sexually, physically or emotionally mistreated as a child was harder for me than what we are facing right now.
Two days ago, on November 26, 2012 at 6:18 am, my second son and my 5th child was born. A day that is normally filled with great joy and un-wavered thankfulness; but for us, it was a day of mixed emotions; joy that our son was finally here and heartbreak to learn that he likely has Down Syndrome. At first, you think of all the Down Syndrome children you know and how beautiful they are a people and then you start to look up things about it and doctors begin to expose you to all the potential realities and hardships that could be in store for your child and your heart breaks completely.
For me I was angry and not just a little angry; I was angry at the situation, at myself and even at God because I couldn’t understand why my prayers weren’t enough or why He allowed my son to be born into this world facing so many challenges. It was so different from our expectation of who he should be. And yes, I know that God doesn’t give people diseases but He can take them away and the moment the doctors suspected and issue we prayed and prayed and prayed some more, truly believing that he would defy the doctors suspicions and be completely normal, but now we know it wasn’t to be.
When you invest so much into your faith and the answer from God is no, for something of this magnitude it’s emotionally devastating, not to mention overwhelmingly confusing. I won’t lie and tell you I didn’t question God, whether He even cared about our son or us and why He would allow this “syndrome” into my son’s body.
I know this sounds incredibly selfish and the reality is that there are parents who have children with situations that are much worse than ours are. But honestly, no matter what the circumstance when you see YOUR child with anything challenging in their lives, especially as a father, you want nothing more than to take it away, but I can’t and it kills me inside to know that I can’t.
We haven’t really told too many people, largely because we’re grieving and in our grief, the good intentions of people, no matter how close they are to you, seem so hollow. They try to encourage you, mostly be telling you about a person they know who has Down’s and how beautiful and wonderful they are; which I understand why they do and I don’t hold anything against them, but truth be told. Until we walk completely through our grief, it’s very difficult to receive their kind words and encouragements. Hearing things like “God has a plan” or “Just trust God” after investing so much into just that, only to have the doctors predictions become our new reality just isn’t helpful or encouraging; truthfully, its salt in an open wound.
And yes I said grief, not that our son was born, but that he was born with this “syndrome” and we don’t know what hardships are ahead of him. I’m grieving for the life my son will be forced to live and the challenges that he will have to face and in so many ways I feel like it’s my fault even if I can rationalize that it’s not.
Today I just keep asking the same question… Why God, Why?
Now that I’ve had a few days to deal with my emotions, and because a close friend of ours knew that the right help was to get us in touch with some other friends who’ve gone through what we are going through now; of course I’ve also had the chance to pray for and received some understanding and I’ve come to the conclusion that if John-Michael does have Down Syndrome, that we are the right parents for the job/ Because no matter what his situation, we love him. No matter what we face in the days, weeks, months and years ahead, we will enjoy every moment with him.
I realize that this isn’t one of my more typical posts, but I left the words above exactly as I wrote them because I believe it is what I’m supposed to do and I hope that everyone who reads it understands that it was written initially as a way for me to work through my pain and wasn’t actually intended for public consumption. It is because my Faith has been rekindled in God’s plan for my life and John-Michael’s life that I once again step out in Faith to expose my weaknesses, as I believe God wants me to do, so that He can shine a light into the world through our son and the miracles we will see in his life.
We have seen our first of what I believe to be many miracles. John-Michael was having some challenges nursing in the first couple of days, but now he is starting to nurse which as we’ve come to understand is overcoming a mountain for many babies with Down’s.
We have also become aware of some close friends who found out recently that their baby girl will likely be born with Down’s as well and God has made a way for us to connect to encourage each other during the difficult times ahead; which I believe to be a Divine appointment.
Today we got the official call from the doctor confirming that John-Michael has the extra chromosome 21 and have labeled him with Down Syndrome…. Deep breath…
If you’re reading this, thank you for allowing me to be a bit emotional and transparent with you.
God Bless you.