I am a positive person, I think people who know me will agree. I don’t dwell in the past, I don’t hold a grudge, life’s too short and my energy is too precious to spend on negativity. But going through the past year, I have been seriously tested. Getting bad news is awful, especially when it concerns your newborn. Jackson being deaf was a lot to take in, it still is. I am still frightened of how his hearing will evolve, what will his future look like, will he need help in school, will he have friends? Will he be angry and upset about not hearing like we do? Do we as parents do enough to help and support him? Enough concerns to keep me awake at night…
And then I even choose to ignore the other issue that we will be facing in the future. His vision. When will it start to deteriorate? At what speed? Nobody can tell us. This uncertainty is killing, especially for a control freak like me. I dread the day when we have to start testing his eyes, afraid of the results and the impact it will have on all of our lives. How to explain this situation to Jackson? I am so not looking forward to the remaining journey on this emotional rollercoaster.
But I cannot walk away from it. This is my son, he made me a mom. I will be there for the good and the bad. And there is a light. Thank god there is a light. There are a lot of potential treatments coming for people with Usher syndrome. From gene therapy to stem cells to drug therapies to optogenetics to vestibular and ocular implants. Specialists have assured me: there has never been a more hopeful time for Usher patients. Hope is a powerful word. Hope means a chance, hope lights a spark, hope makes me get up every morning, without hope I am lost.
Let your faith be bigger than your fears.
I try to focus on what we can do for Jackson right now, help him in the process of hearing with his CI’s. Learn sign language. Go to therapy for his balance issues. Challenge him to explore, to sit, to walk, to speak, one step at a time. Every little achievement makes my heart jump and my belief stronger. Jackson can do this, we can do this.
If you want to read promising news concerning treatments for Usher syndrome:
- The Casey Eye Institute in Portland (USA) has started an Usher syndrome type 1B gene therapy trial. Read more.
- Stichting Ushersyndroom (NL) has set a target that a cure for all Usher patients should be available in 2025. Read more.
- Researches of the Radboudumc in Nijmegen (NL) recently announced a breakthrough in their gene therapy trial for Usher syndrome type 2A. Read more.