… not exactly what you want to hear.
Just a few days after our annual Retinal checkup, the words are still resonating. The truth is still hard hitting and well… it sucks.
My ophthalmologist is a great doctor and was the first one to confirm that I had Retinitis Pigmentosa several years ago. At our checkup this year, confirmation of decreased was given in my right and left eye. The lovely day of flashing lights, field of vision tests and of course dilation resulted in news that we “knew” but don’t like one bit.
In the past year, a lot has changed with my vision. The cane is becoming a constant companion, not for want but for need. My home, where I feel most comfortable, has caused some pretty good bumps and bruises in the past months and my family can see the differences happening.
Whether it’s a bump into a doorway, tripping over a toy, another broken glass or a tumble over a chair not put way, the “little things” are surmountable. In the past 6 months, we have had a lot of these “little things” and before we went into the appointment this year, already had a feeling of what the results were going to be.
While having the mental preparedness for the day is one thing, hearing the words is a whole other experience.
The Doctor applauded the use of my cane and the mobility that I’ve been working on. He applauded my use of magnifiers, big screens and tech. However, his next inquiry was “Have you started learning Braille yet?”
No. I haven’t and I truly don’t want to. I’m not ready for that yet and am just now getting “ok” with the use of the cane being a necessity, not an option. It’s a strong feeling to be told that your vision is deteriorating and there are about 20,000 feelings that come from the words “prepare for the worse.”
The Next Chapter
My family is strong and although the appointment this year was a confirmation, we are thriving and growing, despite the failure of my sight. My daughter, who is now almost 6, just was awarded at school for Excellence and is absolutely crushing it in Kindergarten, advancing to the “first group” in her class of 16.
My wife has come leaps and bounds forward in terms of acceptance, role changes and her new position in our family. While this was NOT what we had planned, their adjustments, understanding, compassion and love has been the fuel for the fire to keep moving forward. Our littlest, now 20 months, is already showing signs of understanding. Whether it’s picking up a toy for me that I can’t see or now responding with a “Da” when I call her name, her small awareness to the uniqueness of our family is inspiring.
We have come a long way in the past year.as a family and as individuals. There is not a single doubt about that. While I am truly proud of where we are today, it has not been easy. There have been tears from us all, sad talks about the future and “I don’t want Daddy to go blind” conversations that wretch my heart into a spiral of guilt and shame.
Some days are great and some are not. Some days are full of visual related issues and challenges and some are filled with successes in navigation and ease of life. Each day is different and as we embark on these next chapters, I try to remember how far we’ve come, as a family.
To those of you battling, whatever it may be, remember that nothing worth doing is easy and that all good things come to those who put in the work.
I’m here to work. I’m here to show my daughters that “giving up” is NEVER an option. I’m here to be blind and successful. I’m here to continue down this very unknown road. I’m here to show people that shit happens and it’s how you react to it that really matters.