My son has Usher syndrome type 1b. He is deaf and will become blind, his vestibular organs do not function resulting in severe balance issues. These are the facts.
Jackson announced himself on my last day at the office. I closed the door behind me and a couple of hours later I was in labour. I guess he already knew me well: I like to keep a tight schedule. We spent one night in the hospital and went home to our dog Dexter, who sniffed and approved of the new little human in the house. One happy little family, for about 4 weeks. Jackson failed his first hearing test on November 23rd, “no big deal”, “it happens a lot”, “probably still some amniotic fluid behind his ears”. Still, I checked with some friends, some of them had the same with their babies, had to do the test twice, don’t worry. And I didn’t, because our baby was healthy and doing great. The second hearing test was one week later and he failed again, so we got a hospital referral. I started to worry and did the worse you can do: google. So I worried even more. My husband, confident as ever, believed there was absolutely nothing wrong with our son.
He will not develop as a normal kid, he cannot hear so his speech and language skills will not develop naturally.
On December 7th more hearing tests at the local hospital and the audiologist brought it to us pretty bluntly: Jackson has a severe loss of hearing. He will not develop as a normal kid, he cannot hear so his speech and language skills will not develop naturally. More tests will have to show if this is part of “something bigger” and what the cause of his deafness is. Another hospital referral.
I did not catch most of what she said. Our baby boy cannot hear? How did this happen? What did I do wrong? I remember leaving the hospital, crying uncontrollably, people asking me if I was all right while my husband got the car. No I am not all right. What was happening to us?
The following months, more hospital visits, more tests, learning and understanding more about our son being deaf. We were beginning to see that Jackson could lead a perfectly ‘normal’ life whilst being deaf. The people at the University Hospital in Antwerp (UZA) explained to us the wonderful concept of Cochlear Implants (CI). I will spare you the medical technicalities, but basically it is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf. It wouldn’t make Jackson hear like we do, but he would be able to learn to interpret sound and thus develop speech and language skills. Sure, lots of obstacles along the way but we had seen the results, we met with children and parents who went through the same process, it gave us so much hope and something to look forward to.
So our boy was deaf, so what?
So our boy was deaf, so what? We addressed it all very pragmatically, I guess that happens when both parents are entrepreneurs. We started lessons in sign language, and seeing Jackson respond to this was just the best thing ever. Being deaf was not the end, “at least he is not blind” people told us. If this is what we have to deal with, then we would deal with it in the best possible way. People got worse news everyday we figured. We could do this.
May 26th 2016, an important day. Back to the hospital for results of the MRI scan, which would show if Jackson was a suitable candidate for Cochlear Implants. The results were good, so a date was set for the first CI to be implanted. Months earlier, during one of our first visits to UZA they asked us if we would agree to genetic testing to see if they could find any cause for Jacksons deafness. This meant both me and my husband’s blood would be tested for any syndromes causing deafness. I had a look at these syndromes and they scared the shit out of me, but the doctors reassured me “no need to worry, these are all very rare conditions”. Jackson had already undergone every possible examination and he was as healthy as can be. So I did not worry. When I saw the genetics doctor in the room that day I just thought, finally the results of these tests, let’s get it over with and move on with the CI surgery. “I am afraid I have bad news for you, your son has been diagnosed with Usher syndrome”. BLACK OUT.
Our son was deaf and he would eventually become blind.
I do not remember how we got home. I know that the sun came up the next day and that it wasn’t a bad dream. Our son was deaf and he would eventually become blind. Remember when people told us, “better deaf than blind”, well guess what, my son just hit the jackpot. How am I ever going to explain to a little boy that he will loose his vision? Because that’s the ugliness of this condition, it’s progressive. So while Jacksons vision is fine for now and the forthcoming years, it will slowly deteriorate, starting with night blindness around his tenth birthday. I could not even begin to grasp this.
I felt so guilty, I was partly to blame for this. Unknowingly I carried the Usher gene and what a sick joke that the love of my life (for over 20 years and counting) carried this gene as well. What are the odds? And even then, the chance of us passing on the actual syndrome to our baby is 25%. So three chances out of four that he would not have it.
Just when we had totally accepted the fact that our son was deaf, embracing the challenging future that lay ahead of us, this news just felt so unfair, too much and too big to take in. So we cried, a lot. With each other, with family and friends, who were speechless and astounded, it was all just utterly sad. Except for Jackson, who was his happy little self.
I know for a fact that Jackson is happy right now, and I cannot ask for more.
A dear friend told me a while back, the hardest part for you as a parent is that you need to adjust the dreams you have for your child. And she was so right. Jackson was born deaf, with non functioning vestibular organs, he does not know any better and probably will deal better with his limitations than us, his parents, ever will. It physically hurts me to think that he might not be able to enjoy music the way I do. To find comfort in it, experience the joy and happiness it can bring, the thrill of a live show. I went through days thinking with every move I made: “will my son still be able to do this when he is 15, or 25, or 35?” I do not know the answer. Perhaps I don’t need to know. I know for a fact that Jackson is happy right now, and I cannot ask for more.
We will deal with this day by day and enjoy our amazing little kid, who I am sure will continue to surprise and delight us. He did not chose to have this condition, so I will not define him by it. I will stick to what I know, and raise him like my parents raised me: be kind, stay strong, work hard and everything is possible.
It’s the little steps that count right?
Does it scare me? You bet. Does it make me feel angry, disappointed, sad, helpless and guilty? Yes, all of the above. But writing about it helps, reaching out to other people as well. It is my way of helping Jackson, making people aware of Usher syndrome. To let him know he is not alone in this, 400,000 people are affected by Usher syndrome worldwide. So if you, by reading this post, now know about Usher syndrome, that’s one more person than before. And that’s great. It’s the little steps that count right?
If you want to know more you can follow me right here and join #teamjackson.
PS: sorry for the long post