Before Nicholas, I had previously known some things about Down Syndrome. After the doctors told us that they were going to order genetic testing to see if he had it, they kindly asked us not to google anything. There was no way I could do that anyway. I couldn’t even look at my phone at all. I heard it buzzing non-stop because everyone wanted to congratulate me. My brain was in such a state of shock that I couldn’t fathom speaking to anyone but my husband. Is seemed as though everyone else was the enemy.
There was one thing that I knew was a common problem with children with Down syndrome, aside from the common physical features, and that was low muscle tone.
I remember already feeling so ragged. I had just done the hardest thing a human being can do, and the wounds were still fresh. I, a once super-human moving incubator, was now feeling empty inside. I was brand new to breastfeeding, which is a whole new kind of torture. I didn’t yet understand the “mourning” feeling I was feeling mentally. It felt like there was no world outside of the small recovery room.
The nurse, who already had suspicions about Nicholas, seemed frantic that day when it came to his feedings. She was being pushy like we were in a big hurry to get him to eat. I remember feeling really uncomfortable about it. Little did I know that she was worried that his low muscle tone was going to cause him to have trouble feeding. A few hours later, she clued us in.
I looked down and saw his little tiny hand. I wanted so badly for that hand to grip my finger and squeeze, much like I had been seeing with new moms on social media. But instead, it limply succumbed to my hand movements. My mind raced with fears of what his life would be like. Will he walk on his own? Will I be able to understand his speech?
It is so amazing the difference a couple of months can make. After a few weeks, I finally felt him squeeze my finger while he was laying on the changing table, and even though this was a small accomplishment, I couldn’t believe the rush of joy that I felt. “Rush” is really the perfect word for it. Ever since then, I have been obsessed with seeing him succeed. From there, he started holding rattles and shaking them around, and eventually we saw some awesome head control! Now, he can lay on his belly and straighten his arms all the way so he can check out the whole room!
Is it hard to know that other kids his age are sitting up? Absolutely! Not because I am sad that he is behind a little, but because he is constantly looking around and is interested in everything that is going on around him. I want him to be able to explore the way that he wants to! I know he will get there when he is ready!
He has been in physical therapy since he was five months old, and our therapist says that he is one of the only babies that she works with that doesn’t cry the whole time. Look at this guy exercise!
He just loves working on those muscles! I look forward to these sessions every week.
It has been eight months since he was born, and I can’t believe that I am in a place where I can talk about it so freely. As I am writing this, some memories are hard to revisit, but I want those mommies out there who are going through the same thing to know that they don’t need to feel guilty about the feelings they are having. Soon enough, you will get to a point where all you want to do is tell your story because it makes you feel like a super hero.
If you have just received a diagnosis, I know it is hard to listen to what everyone has to say because no one can possibly know how you feel unless they have been through it. But, your baby is going to succeed at his/her own pace, and those successes are going to bring you joy that is 10x stronger than the shock you felt in the hospital.
How can this muscle machine not bring me joy?