You never know

I expected joy. I expected so much happiness. I didn’t expect the tears.

On the way home from the airport after my weekend in San Diego I started to tear up. I was telling my husband all about the medical conference I was at that was focused on congenital disorders of glycosylation, the genetic condition our middle son has. I told him there was so much buzz and excitement regarding research. The medical community and parents are determined to find a treatment and cure. There’s hope. But when I talked about the kids I started to cry.

It was hard. It was hard for me to see the children walking with purpose in their gait trainers. It was difficult for me to see them propelling themselves in their wheelchairs. And most of all, it was heartbreaking to hear their sweet voices.

I am always the first to say every child is different. I always remind newly diagnosed parents that CDG has a wide spectrum of severity. I try so hard not to compare our son to others and yet here I was doing just that. I know he’s very different than his typical peers but here it was glaringly obvious what he isn’t doing, and how much more severe he was regarding developmental delay. We are severe and although I already knew that here I was actually seeing it.

And the thing is we try. We try SO frickin’ hard. Man I want my son to talk. I want him to have the ability to communicate. Yes, we have our communication device and we are making great progress but just ONCE I want to hear his voice. I want to know what he would sound like saying mom or dad or cup or hi. Anything. Anything at all.

On the drive my husband said he’s sort of resorted to the reality that he may never talk. He may never say words. And he’s come to terms with it, accepted that it may never happen. It’s not giving up, just letting the dream go I guess, and I’m just not ready. I’m not ready to accept that we may never hear his little voice ask for help or say I love you. I don’t know if I should tuck this dream into my “nevers” or not. I don’t know if I should let it go now so it doesn’t continue to hurt so much.

I continued this conversation at home when our boys were around. My 7 year old looked at me and said “you never know, you can never know the future.” And he’s right, so I won’t tuck it away.

Because you never know.