How does a Down Syndrome diagnosis feel?
It feels like the air just got knocked out of you.
It feels like the tears won’t ever stop.
It feels like someone took all of your joy.
It feels like no one will ever understand.
It feels like you are alone.
It feels like you don’t know this new little life you have grown.
It feels like fear.
Fear is the word that describes it most accurately.
There is fear of the unknown, fear of the future, fear deep seeded in wondering what your life will now be like. Fear that wraps you like the swaddling blanket you had prepared for your very new and perfect precious life. Fear that you will not be enough. Fear of rejection from the world. Fear of sharing the news with family and friends. A Down Syndrome diagnosis can cause all of these feelings, and so many more.
It is a very hard and lonely place to be, I know because this is exactly where I found myself when I gave birth to my son.
It all began 9 months ago when I was elated to learn that we were expecting our 6th child. I enjoy the chaos of our large family, we never started out planning a big family but each child brings so much joy to our home that we welcomed each and every one of them.
This last child was a bit of a surprise, not because I don’t know how babies are made (though there have been many who have suggested that when they see how many children we have) but because we were getting older and it had been 2 years since our last was born and there was no sign I would be having another.
Once I learned our news, I did find myself wondering if I was going to be able to keep up with the home, the children, homeschooling, our farm, gardening, all of it, but I just figured life would work itself out, it always does.
My pregnancy was uneventful with the exception of an ultrasound scare…I say scare because an ultrasound tech had told us that she had some concerns that she wanted to refer us to someone else for. Something along the lines of club feet and hands and wanting to be sure there were no other issues with internal organs… as they were not clearly visible on the ultrasound.
I was scared to death. I cried a lot and prayed a lot. I let God know that I just couldn’t handle a child with special needs; he had already blessed us with 5 healthy children.
I couldn’t do special needs.
We went to that level two ultrasound and I lay back while a complete stranger ran a Doppler back and forth across my round belly. She pointed to the heart, the kidneys, and the perfectly formed little hands and feet, tears of relief fell down my cheeks.
My little one was perfect.
We were told that all the organs looked great and there did not appear to be any cause for concern. I felt so much relief wash over me when I realized that we wouldn’t be called to be the parents of a special needs child. I thought that is what happens to other people, not to us, I just didn’t feel prepared for that. We declined any other tests because, though I didn’t feel I was capable of dealing with special needs, I also had no plans of doing anything but giving birth to the child God had given us.
Armed with the knowledge that our homebirth plans wouldn’t be hampered by any medical issues we proceeded planning for, and anxiously awaiting our little one. He moved and kicked a lot, especially when I caressed my belly, and my little ones talked to my belly. He moved and kicked so much that he couldn’t decide which end was up as he continuously flipped breech and then vertex and back again. It seemed like a game he was playing and we joked that this one would definitely be a firecracker like his siblings.
The day came when I knew meeting my new babe was imminent, and once again this little one had a surprise, he decided to be born breech, during our planned homebirth. (I’ll let that one sink in for just a moment)
All went very smoothly and looking back, I realize that God was giving us another gift, the gift of precious time to process. When my husband and I began admiring our new little one, we noticed a few things that were unique about his appearance. His little ears were folded, his eyes were slightly slanted. We asked our midwife a few questions and she smiled and nodded that she too noticed, I just knew that we were wrong though…
We asked our midwife a few questions and she smiled and nodded that she too noticed, I just knew that we were wrong though…
A few days later at our very first pediatrician appointment, my husband and I asked the pediatrician for her thoughts, she smiled and kindly told us in a soft voice that our son had Down Syndrome.
I couldn’t stop crying. Our pediatrician was very positive and encouraging but the tears kept falling.
The next few days were a whirlwind of crying, not sleeping, more crying, and praying. We met with a cardiologist at the urging of our pediatrician and were told that our son was very lucky to only have a minor Atrial Septal Defect and PDA that may well close on its own.
My husband, an RN, was elated.
I was having trouble processing the words.
There was a blood test done to confirm the diagnosis of Down Syndrome and I was still holding out hope that everyone was wrong, I was still in a bit of post-partum denial. His blood test confirmed that he had Down Syndrome, I cried some more.
I didn’t want to talk to anyone…because I didn’t want to cry anymore.
It is a very strange place that I found myself in, I am normally a force to be reckoned with and I didn’t want to tell anyone what was going on because I wasn’t yet at the place where I could talk about my new baby without crying.
What kind of mother did that make me that I couldn’t look at him and smile without that smile being accompanied by trails of tears?
It all felt so wrong to me because by crying when I spoke about him I worried that people would feel sorry for us, that they would think I didn’t want him, I detested the thought of anyone feeling sorry for us or misunderstanding my tears.
I also felt that people we told would take their cues from my husband and I, and here I was a blubbering, sleep deprived, hormonal mess. Not what I wanted anyone to see. I wanted people to treat us like we just had a baby, not like there was a problem.
I wish I could have told myself that it was going to be okay.
I wish I would have inherently known that my smile would return and my tears would slow.
I gave my husband the burden of telling our family, friends and church what was going on, I just couldn’t do it.
The outpouring of support has been amazing but more than that, our new little one is amazing. I worried that I wouldn’t bond with him like with my other children, I have no idea why that thought was allowed to cross my mind, but it did.
It was a waste to worry about that, as the days went by and I got more sleep, the hormones calmed down a bit and I began to process everything. I began reading story after story online of families who found themselves in exactly the same place we were.
They were all doing well.
They had beautiful children and their children were pictured doing normal everyday things.
There was an echo of words that, though ordered differently in each story, said…
I wish I could go back to those first few days and tell myself that this is not something to mourn but instead it is something beautiful.
This gift is the one that I never knew I wanted, until I got it.
You haven’t lived until you have had someone with Down Syndrome touch your life.
Surely all of these women and families weren’t lying.
This is when I chose to begin learning everything I could about my son, his diagnosis, and others like him.
So, what does it feel like to learn your child has Down Syndrome?
It feels like fear…
But, on the other side there is hope, beauty, and the most plentiful baby smiles I have ever seen. There is camaraderie among mothers you didn’t even know you would seek out. There is a sense of understanding of others and a new passion to make the world an even better place so your child can live abundantly in it.
And the tears do subside, because there is no reason to mourn when you have something so beautiful for the world to meet.