I think…

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. 😉

 

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Nowhere else

Our family went to a pool party a few weeks ago and on our way home I texted my girlfriend to let her know I wasn’t going to cry. I didn’t have the urge to take my son and leave. Oddly enough, I felt ok, not great, not sad, but just ok.

Our son is nonverbal, continuous tube fed, has severe hearing loss and wears aids, with very low muscle tone and cannot sit alone, stand, or walk.  He’s also stubborn, funny, very affectionate, and extremely charming. He loves kisses, books, and his iPad. And when he gets excited or is content he can be very vocal while flailing his arms and legs all over which can be confusing to people who don’t know him.

I can’t tell you how many times we go to an event and all I want to do is retreat to the safety of our home. Away from the stares, ignorant comments, and small twinges of sadness knocking on my heart waiting for me to release them all. I spend time looking at other children and wonder what life would be like if our child was typical. I watch kids his age run around while we lay on the ground together as a passerby asks how old he is, and then when I say “four” I watch their face change to pity. I watch their face drop as they have no idea what else to say to us.

Some days I just don’t want to do it. I don’t want to feel alone in a room full of people. Have you ever felt that way? There can be people all around me but yet I feel alone because the majority of everyone surrounding me simply doesn’t understand our life. They don’t know what it’s like to have a child with a complex medical condition with severe developmental disabilities. Our day to day life is anything but typical. So, I’ll be honest, sometimes it’s easier for me to just NOT participate.  I don’t want the whispers behind our back or the blatant stares. I don’t have to face any of that if we just stay home. But as I sat with our son enjoying the laughter at the pool while he happily watched his iPad in the breeze, something occurred to me.

There was no where else he would have rather been.

He kept looking up at me with his sparkling eyes as if to tell me he was enjoying himself and was thrilled to be there. His little legs were going crazy. He was happy. He had two of his favorite things; his mom and his iPad. And as much as I would have loved to be the mom in the pool with a glass of wine, I wasn’t. As much as I would give to have him jumping off of the side of the pool, he wasn’t. I would love to take this all away from him and make his life easier, but I can’t. I realized then that longing for the life I dreamed of is futile. My life is happening right now. Our lives are now.

Sitting there, I may have appeared alone, on the sidelines, but that’s not the truth. We were together.  We weren’t alone.

And at that moment, there was nowhere else I would have rather been.

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