It’s been quite the journey..
No matter what, life continues it’s twists and turns and lately, that is all that has been happening. Adjustments here and failures there, adaptation here and frustration there.
Life has been challenging as of late and while I know that this, like all storms, will pass, it’s been quite the challenging time for my family and I.
The reality is that, vision loss is no joke and as soon as you get used to it, poof, it changes again. For about a year now, that seems to be the reality every single day / week / month. What I could see last year, is no longer there and what I could do last month, is becoming more challenging today. It’s not an easy road and I would not wish this on anyone.
Losing your vision isn’t just about “going blind.” You lose your world. You lose the sights that used to bring your joy. You lose the ability to do very simplest tasks. You lose the drive for adventure, in fear of the challenge. You lose the sky, stars and moon at night. You lose the beauty of nature and the colors it holds. You lose the ability to watch and see the ones you love. Their smiles, their tears, their joy and growth becomes something that you can only feel, but can no longer visually see.
The world becomes gray.
Now, for myself, this has all been challenging. It’s been hard, harder than I could have prepared myself for. The reality is that I am going blind, much more quickly than we had thought, or been told. Every day, I wake and prepare myself for the challenges, frustrations and pain that will shortly follow leaving our bed. Some days, I awake with hopefulness that the day won’t hold that, but it always does.
For myself, it’s become reality and a constant in life. For my family, it’s just now starting to creep in to their days. The responsibility I hold is surmountable and at times, overwhelming. It isn’t my job to bitch and moan about my challenges, it is my responsibility to show strength, courage and our families motto of “never give-up.” It is my responsibility to do everything I can to help my wife and my daughters learn that in life, nothing is given and everything is earned. Whether it be respect, a paycheck or freedom.
As of late, my wife has been fighting. She has not been fighting with me but she has been fighting for acceptance. That fight, one that I have been battling for 3+ years is no joke. It includes a lot of feelings and a lot of challenging moments. Some days, to this very moment, I feel like I loss the fight, however, I know that I have not, and neither will she. She is a strong, powerful, smart and loving woman that I hcould not imagine life without.
She is the first person I feel in the morning and the last before I go to sleep. She has become more to me than I ever thought possible and as she battles through this trying time of acceptance, she will rise and become an even more powerful woman in the world. I know that this road is challenging, unfair and down right cruel, however, through all of the pain, comes a new appreciation. I appreciate her more than my brain can depict because that appreciation is in heart.
At 7 years old, my daughter, Peyton, remembers her Daddy seeing. She remembers me driving a car, taking her shopping and having the ability to read her any book on her shelf. She remembers her Daddy being a different man than he is today. That breaks me heart and makes me feel angry at what this disease has caused. However, with the correct mindset, I am so very proud of her.
Peyton has become the strongest, most sensitive and caring girls in the world. She loves her family dearly and it shows. She doesn’t hesitate to guide me through a restaurant or help me find the restroom when we are out and about. She doesn’t shy away from helping me find something that I’ve dropped and she would never stand for someone making any sort of ridicule at our family. I am so proud of the woman she is and who she will become.
Our youngest, Lyla, doesn’t remember Daddy driving, nor does she remember Daddy any different than a Dad who can’t see well. In fact, for a while, she assumed that all Dad’s didn’t see well, but has since learned that isn’t the case. At 3 years old, Lyla doesn’t have memories of what was, she is only pleased with what is. She may not have Daddy reading her books every night but she has a Daddy that loves her and shows her that love every single day. She doesn’t “miss” things because for her, this is all she knows. At only 3 years old, Lyla is one of the most caring, loving and happiest children I have ever met. She helps when she can and learns everything from her beautiful mother and amazing big sister.
It’s been hard, really hard. I’ve broken down more in the past few months, than the past few years. The challenges are mounting and acceptance is growing. The guilt is real and while I fully comprehend that going blind is nothing I have done, you simply can not help to feel guilty. Guilty for the pain you cause to others, the sacrifices made by your family and the moments that are missed, simply because you can’t see them anymore.
People look at our family and call us an “inspiration.” I don’t see inspiration. I see fighters, survivors and a mindset. People wonder how we do anything, I do too at times. The reality is we are a different family. We are unique in just about every single way. We work as a team and consistently grow as one, and as individuals. We fail, well I fail a lot, but we learn. We fall short and then grow taller. We fight, only to grow closer together.
It’s been sone time since I’ve talked candidly about the reality of what Retinitis Pigmentosa is like and the truth is, it sucks.
However, if I can note anything from our recent challenges, it’s that we all survive. Maybe some more than others, but we all will make it. Life feels differently already and I am confident that it will continue to with time. It will never be what it once was, as both my wife and Peyton remember it, but it does have the opportunity to be pretty amazing, different but amazing.
I haven’t wrote like this in months, maybe because I have been fearful of what would come out. I haven’t let myself open up about it because I can’t stand to have others feel any sadness from this, but that must change. It is time to open up. It is time to step forward and push. It is time to fight, harder than we ever have. It is time to thrive.