Our baby boy is turning 1 in a couple of days, and there’s a whole lot of emotions I am dealing with. Longing for last year when we did not know about Usher syndrome. When we were so looking forward to meet this little human. The baby boy that arrived so promptly in the early morning of October 29th, it was a beautiful and warm autumn day (my favorite season). My husband and the gynecologist placing bets on how fast I would deliver this baby, my husband won, I did it under 30 minutes. I am competitive, even during labour…

Going home to our dog Dexter. That evening we lay on our couch for the first time as a family. It felt so familiar. Those first precious weeks when we believed our son Jackson was perfectly healthy and we felt so blessed with this easy going baby. Looking back on it, I wish I could stop time right there and then.

But you cannot live a time bubble. You cannot control life. You have to deal with it. And that is exactly what we have done the past few months. Dealing with Usher syndrome. Do I wish it would not have happened to us? Yes. Do I sometimes think what our lives would look like if I would not have gotten pregnant? Yes, it all crossed my mind at one point. And I guess that’s normal, I am still grieving.

We have been thrown from absolute bliss to absolute despair. Instead of simply enjoying our son, there came such worry. Hospital visits, tests, seeing specialists, more tests, surgery, therapy… To me, it looked like all the people around me had perfectly healthy children and they all took it for granted. It cut like a knife.

“Come on dream on, dream baby dream” I love hearing Springsteen sing this song, even though I will cry my eyes out every time, there is so much hope and beauty in it. When Jackson was born, we had little sweets made that said “dream big, little one”. I still hold on to that, regardless of any limitation or disability that my son might have. Because as heavy as Jackson’s first year might have been to us, we are so lucky to have him and he is so very loved.

“Yeah I just wanna see you smile”