What's Wrong With Him?

This is the question I'm most afraid of.

It's the question I hear when people say my son's glasses are so cute. When that's the first thing they mention about him. You can see that he's different--he can't look you in the eye (oh how our hearts ache for that one). His eyes are different and it shows. I assume it's the first thing people notice. Maybe it's the first thing I notice.

Ironically it's something we didn't notice. How do you see something that's off in your first child? I didn't know when to expect him to start making eye contact. Now when I meet a baby younger than 4 months I'm struck at how solid their gaze is. I guess we just didn't see day to day that Sky wasn't doing that.

I've been wanting to share more of his story for some time. It's been a journey of figuring out how much to share, how much to hold close, and when to do it.

When we found out he had vision impairments at 4 months, I shut down all social media--for work and personal. Life had become so raw, so vulnerable. I was stuck so hard in the comparison game of watching other kiddos his age sitting up and reaching for things, while I'm holding my baby in the OR as he wakes up from surgery. I'm spending the night at the children's hospital so we can monitor his breathing post-op while someone else is capturing their baby rolling over for the first time.

It was too much for this mama's heart.

And time heals. I think it's time to start sharing more.

I'm scared of getting the question "What's wrong with him?" in all its forms. And...I know they will come.

We live in the world and the world has curiosity.

And he is different. I will need to get used to sharing his story and figuring out how and when and how much to share, so I'm starting it here. This is intended to be a trove of my own thoughts and musings, my own processing--which has been happening over the year-plus since his diagnosis. Graham might chime in too, if he is moved in that way. (After all, he's the writer in the family. ;) )

I heard the advice once to write from your scars, not your wounds. This is why it took me over a year to start writing. Things have healed. We have practiced using the word "blind" and "disability." We have talked through and cried through the grief of what we thought parenthood would look like, and acknowledged that we aren't grieving our son--we are grieving the life we thought we'd have. This process is by no means complete.

I have much more to say on all these things. I just want to start somewhere. So I'm starting here.

Thanks for being here.

I want you to meet my son and hear his story.

I want you to see Sky.