So Much To Say One Day

When we were first told by Noah's NICU team that he needed a tracheostomy my first 2 questions were:

1. Will be be able to breastfeed?

2. Will he be able to talk?

This was many, many months before he was officially diagnosed with Pelizaeus-Merzbacher Disease (P.M.D.) so of course the team was thinking who knows? while they expressed to me, "We can try."

Of course the breastfeeding failed and we learned shortly after our 2-3 attempts that Noah had absolutely ZERO swallow reflex. I resigned myself back to my trusty breast pump because I knew that's what he needed to get stronger and frankly, that's the only thing in his life I truly had control over. Secretly, I hoped he would one day be able to at least latch on or suck for comfort. 

When he had his in-home speech therapy evaluation at just over 2 months old, I still was adamant on breastfeeding. In fact, that was one of the goals that I wanted to achieve with the help of his therapists. As the months went by and I continued my pumping journey, I began to realize that this dream of mine just may never be. I pump for almost 6 months and soon after I stopped Noah was diagnosed. 

At that point I was "okay" with the fact that he would not breastfeed. I had given him the best nutrition for nearly 6 months and we had bigger things to deal with. When I got home from that dreadful neurologist appointment (which, to this day I still cry when I think about) I went straight to the computer and began my research on P.M.D.. 

He had all the symptoms and I knew. I knew we had an answer. A devastating, heart breaking answer. When I read that most people with P.M.D. do not walk and seldom even learn to talk, I was crushed. It is still hard to think about a year after his diagnosis. And with Noah having a trach, his ability to talk is hindered even further. 

I dove into a depression after that. I cared for him and did what had to be done but I felt a certain disconnect. I'm not exactly sure what snapped me out of it. Maybe my pregnancy and my maternal instinct going into over-drive. I don't know. But at some point I realized, the best way to make this work, the best way to give Noah the greatest chance at life is to treat him as normal as possible.

Okay, that sounds weird but I don't know of any other way to phrase it. And I don't mean treat him like a regular 19 month old child. That would not be effective or productive in any way. What I mean is to treat him how I would treat a child on his level. Talk to him in a way that he can cognitively understand. When you have an infant, everyone says to talk to them about everything around them. The infant can't talk back but they are building their vocabulary to use one day when they are more physically able. And that's what I do with Noah.

His cognitive level for understanding things far surpasses his physical abilities. Which is why it is so important to talk to him. There is even room for discipline in an appropriate way. My hope is that one day, once we finally unlock the magic door to Noah's speech that he will have so many tools and have so much to say. I'm fairly certain that he will have to use some type of communication device, whether that's an iPad or something else. But I can tell that he is smart. He knows what he wants and he tries his hardest to communicate his needs the best way he knows how. Right now that is mostly by crying but I know that with some hard work and lots and lots of practice that one day we will find a better way. 

I know we have a long way to go in the communication department and I don't know exactly what "talking" will look like for us in a few months or years. But I hold on to hope. And I want to give hope to other parents or caregivers going through a similar situation. Please talk to your child. Please give them every opportunity to show you what they can do. It may seem pointless or silly to talk to someone that can't talk back but it's not. It probably means that world to that child even if they can't express it to you. And if they can express it, it will make you feel that much better and it will make your relationship that much stronger.   

Here is a picture of Noah playing with his favorite app on his iPad.