“Mommy I can’t see in the dark.” The words I dreaded to hear. The reality of it just hit me extremely hard, being on a picture perfect holiday here in Tulum, Mexico. But even in paradise tears fall. Hard.
Just before we left on holiday he told me he couldn’t see in the dark. A couple of times. My mother instinct tells me this is it. It’s starting. But he’s so young. Too young. Please no. Doctors told us night blindness would occur around the age of 10, Jackson is only 3. Reading about Usher syndrome and talking to other parents did point out that kids with Ush1b start having problems earlier, so I worried obviously, never daring to ask myself the question: when will it start?
I guess I know the answer now. I am not ready to see a doctor. I don’t want anyone giving me the diagnosis. I don’t want it to be confirmed. I don’t want to hear any of it. I just wish it wasn’t so. Not now, not this early on in his life. Maybe I am wrong, maybe I should hold on to that. I am torn between my gut feeling telling me it’s happening and my self-preservation telling me it’s not.
How long can you protect yourself from the truth? How long are you allowed to put your head in the sand? Are you as a mother even entitled to do so? When Jackson said those words I just reassured him, told him it was dark indeed, that it is difficult to see in the dark. I put a light on. I take his hand. It does not seem to bother him, so I pretend that it doesn’t bother me. On the inside I scream, I hurt, it hurts so bad.
The past three years we’ve been so focused on his hearing and his balance issue. There simply was no room for his eye condition. It did not present itself, so we did not have to face it, or acknowledge it. There was more than enough on our plate. And to be honest, I choose to ignore it. I think my husband still tries to ignore it, to not see it. But we have to face what’s coming. Ready or not.
And I am not ready. I am not ready to let this happen, but I don’t have a choice. Jackson does not have a choice. There is no cure to stop this. He will lose his vision and the process has started. The cruelty of Usher syndrome never felt more real. I feel utterly helpless and scared. We’re here in this beautiful place, surrounded by the sweetest people who adore this little blond guy with the blue eyes. I still want to show you so much of the world Jackson, I want you to meet so many people. I hope to fill your heart and mind with all the flavors, colors, sounds and shapes of the world. Making memories is my greatest gift to you.
As you sleep I cry it all out. Because when you awake a new adventure awaits. These past three years nothing has hold you back. I will follow your lead. Usher syndrome is not a game over thing – it’s a game changer. I still struggle to accept this, but I am on my way.
You have brought tears to my eyes. We too have a two year old grandson with Ush1b. I know all too welI the feelings and emotions you are feeling. These beautiful boys are smart and resiliant and I know in my heart they will find there way in life. Keep being strong for him as we are for ours and know that you are not alone.
thank you, i know I am not alone, it helps to share
Your sharing means more than you can imagine to me, so thankyou.
I also remember hearing those words for the first time. From my son.. around the same age as Jackson, also with type 1b. Words you just don’t want to hear.. And the first time I noticed that he had troubles finding his way trough the dark.. absolutely heartbreaking.
I can relate to all of what you are writing. Also to in some way choose put thoughts around the diagnosis to the side and just be in what is beautiful and available right now. Whilst hoping for a cure. Hoping for a miracle. Maybe coping this way sounds like difficulty to accept. I don’t know. Maybe it is. Well for sure it is difficult to accept. And when the reality of the diagnosis suddenly strike, just like you describe – it hits hard.
It really is a challenge to navigate through it all. Sometimes you have to let yourself cry through the night, don’t you.
And then, in the next moment, we wake up to a new day with happy playful toddlers ready to continue their exploration of the world..
I so much appreciate you sharing all that you do Carolien. Thank you. It is a rare journey this, and easy to feel alone in it all, I think. So to follow you, and relate to practically every single thing, is very helpful and supportive. Your courage and strength shine through it all and for sure it will help also Jackson throughout his onward journey.
Anna thank you so much. I started this blog just for this reason and to meet moms like you. It’s so valuable to share experiences and to know that we are not alone. I can’t wait to meet you and Samuel.
Ik las dit net voor Kerst en kreeg tranen in mijn ogen. Ik volg jullie nu op meerdere social media en word zo vrolijk van de foto’s van Jackson. Ik hoop zo echt dat het een eerder onschuldige opmerking is, maar moederinstincten zijn sterk.
Ik herken heel sterk het gevoel van weg te willen lopen van realiteit, van wat komen zal nog even in een kast op slot willen steken en even vergeten dat die kast er is.
Een dikke knuffel voor jou en voor Jackson. Hoe gaat het inmiddels ?
Beter. Misschien zie ik spoken, wie zal het zeggen. Hij blijft wel zeggen dat hij het niet ziet in het donker, maar als ik vraag hoeveel vingers ik opsteek weet hij het perfect. Er zal al wel iets spelen, hij kan het zelf waarschijnlijk ook niet benoemen en wellicht is het nog heel minimaal. Het maakt eigenlijk ook niet uit, ik zit niet te wachten op een uitslag van een arts. Ik weet dat hij die oogaandoening heeft. Maar zolang er niet over gesproken werd, was het ook nog niet echt aan de hand. Vandaar dat zijn woorden ‘ik zie het niet in het donker’ zo’n enorme impact op mij hebben. Het is dus echt echt echt zo. Dat blijft een enorme harde realiteit. Dank voor je steun!