5 years ago I became a mom. I worked my last day at the office and the same evening I was in labor at the hospital. Next morning at 7:30 am he was born. My carefree pregnancy and child-birth were followed by a tumultuous couple of months of tests, hospital visits, surgeries and finally a devastating diagnosis.
Since then, birthdays haven’t been easy. I can read that here on the blog. While other parents celebrate a new year, we say goodbye to something that might never come back. With each year that Jackson gets older, his vision will deteriorate. A process that’s irreversible and leaves us powerless. That idea often brought me to tears in the days leading up to his birthday. Feeling sad and afraid of what lies ahead of us and our son. This year there were no tears. I didn’t feel grief or anger. I try to understand why. What’s different, what has changed? Is this acceptance? Is my grief slowly wearing off? Is it because Jackson is getting older and we see his potential, the things he’s capable of? Does that comfort me?
I don’t know. I know I read a really good book ‘Special’ that has helped me a lot on how to deal with this situation. I joined the USH Connections week in July and listened to a lot of Usher parents and Usher teens. Those conversations aren’t always easy, sometimes they are even outright confronting. But they always leave me with a feeling of hope. Maybe it’s even more than hope. Maybe, at this point, it’s the realization that Jackson will be all right. Regardless of any future treatment.
I see kids doing it. Having Usher syndrome and not letting it define their lives, their futures, their hopes and their dreams. Not thinking in terms of disabilities but possibilities. How they, provided with the right care and supported by a strong network, can amount to great things. How they can be valuable for this society, like other Usher patients have done before them. You don’t have to be an advocate, stand on a stage, write a book or win a golden medal to be an inspiration for others. Role models come in different sizes, big and small.
All those years ago, after the diagnosis, I was on a serious quest to find role models. Thank god I found them. I still find them. I have met so many wonderful people because of Usher syndrome, I even get to call some of them my friend. I have my son to thank for that. I am so grateful he came into our lives 5 years ago. Yes he arrived with an unexpected and rare diagnosis, like the winning lottery ticket. We still consider ourselves lucky every day.
Happy 5th birthday my darling Jackson.
