I would be lying if I said I wasn’t a little bit scared. A little bit nervous, okay, maybe a lot. To be honest, not thinking about it is easier than thinking about it. Isn’t that a strange way to talk about a pregnancy? Let me explain.
I know I have a beautiful wonderful child inside of me who is already loved beyond measure. I can feel his flutters and kicks; an amazing gift of the life I’m growing. I can see my belly growing and I lose count of the daily trips to use the restroom. He’s happy and thriving. Inside. But outside, that’s where my thoughts always drift to. So, sometimes it’s easier to just smile when he knocks from inside and not think any farther.
When I allow myself to think about his future, I can’t help but think of the “what-ifs.” We know the chances. We know the possibilities of our unborn baby boy being affected by congenital disorder of glycosylation, just like one of his brothers, is 33%. We know it’s not easy. We know the multiple hospitalizations, illnesses, worries, surgeries, specialist appointments, daily therapy tasks…we know it all. We know full well the amount of work and dedication it takes to raise a child with special needs.
It’s very strange carrying a child who could have a very difficult life.
I am doing my very best to not get caught up in scenarios that are possibilities, either way. I cannot bring myself to envision him crawling, talking, playing with his brothers. His first words. Saying “mama.” Tears stream down my face as I type those words. I just can’t. I am not going to pretend – I am not going to break my own heart. I have to try to protect myself from further heartache. Because if I don’t dream those dreams, maybe, just maybe, I can protect my heart a little.
Of course, we would love for him to be unaffected but there is a reality that he may not be. And that’s a reality we are ready to face.
I know we can handle anything that comes our way. After all, we are “experts” in CDG according to the genetic counselor I spoke to. If anyone is prepared, we are. We didn’t know if we could handle it 4 years ago, we were scared and nervous…but here we are…killing it.
But I still can’t think of that either. I can’t bring myself to relive the first two years of Christopher’s life. A night in the emergency department where we were told he was close to death, surgeries with complications of infections, numerous sleepless nights in the hospital, and having to let go of the dreams we once had for him. The grief that follows you; even when you are looking on the bright side. I can’t think further ahead, think about the possibilities of wheelchairs, gait trainers, therapy after therapy….the endless trek up the mountain.
I can’t think beyond now. Not beyond today. And that’s ok. I think. 😉