It’s been three years since we had the diagnosis. Three years of being Ushermom. Sometimes it’s all I can think about, sometimes I don’t think about it at all. Sometimes it’s the biggest thing in our lives, sometimes the smallest.
Three years ago our world was in ruins, today I can honestly say that I am happy. Am I the same person as I was before the diagnosis? I don’t know, perhaps not. You learn to accept the things that you cannot change. I cannot change the condition my son has. I can try to change the way the world sees him, make sure he gets all the opportunities he deserves.
On May 26th 2016 the hospital told us Jackson had Usher syndrome, Jackson did not sleep any less that night. Or any of the nights thereafter. I was afraid he might never learn to walk. Jackson took the time he needed, enjoyed his physiotherapy and at 2 years old he took off. I worried about his speech and language skills. Today, I sometimes wish he would just shut up for 5 seconds.
I know there is trouble ahead, but I try not to let this control our daily lives. Jackson also makes sure of that. His most pressing concerns are: ‘Are there pancakes for breakfast? Where’s my firetruck? Can I watch Peppa Pig?’ Jackson teaches me that having Usher syndrome is not a game-over thing, it’s a game-changer. Kids really do teach us.
People ask me if it becomes easier after three years? While making this video I mostly smiled. Because as difficult as this journey has been so far, it’s also been beautiful. See for yourself.