It’s been a minute…
Since I’ve had the free time to actually sit down and compose. Life has been wild these past few months. My busy season for our business, travel, conventions, family, the holidays… the list goes on and on. Through these past few months, a lot has changed, as life does constantly. Some change for the good and some for the different.
The road that I am traveling has changed quite a bit in 2019 and while we had hoped that my vision had “slowed” down in it’s decrease of availability, it has not. In fact, the difference from last year at this time to this year, is just plain scary. It feels like my vision is just on a constant spiral to darkness and with every rising sun, the reality is served immediately as soon as my eyes open.
It’s been challenging as things have changed. I’ve been utilizing my cane much more and while the cane is very helpful, there are a lot of new emotions and feelings that come along with it’s addition to our family. The looks, assumptions, judgements and curiosity that arises out of it’s presence has been challenging, not only for me, but my beautiful wife and daughters.
While our little Lyla is still too young to really understand what it means (18 months), her un-biased joy and support has been a blessing. She walks through our home using the cane, just like her Dad does, not for need but for fun. My wife has been through a lot this year and through all of the challenges, bad days and growth, has continued to shine like a bright star on a dark night. Without her, I truly don’t know how i’d be doing with all of the recent changes in my perception of the world. She is my rock, comfort and understanding that continues to motivate me to not give up.
The true surprise in the past 6 months has been my daughter Peyton, now 5 1/2. Her outlook has been amazinging inspirational but behind that strength, our first born daughter is having some very strong and difficult feelings about her Daddy seeing less. She doesn’t like it, doesn’t want it and has anger towards it. Angela and I have been present, communicative and open with her through this entire endeavor and while we are doing our best, the feelings are strong for Peyton. We have reached out for assistance from her wonderful Charter School and the school has provided counseling for her to not only have a person to speak to but also to assist in managing these strong feelings.
Peyton has not acted poorly, it’s important that I clarify that through the entire process of her maturity, she has continued to be an absolutely amazing little girl, full of hope, love, compassion and understanding. She is the help I need with Mom is holding Lyla and is understanding when I am unable to read her favorite book without help from my magnifying tools.
For some time, we kept holding hope that my vision had hit it’s “lowest point” but unfortunately, it has not. The world has changed and even our home, my safe haven, has become a bit more challenging to navigate. Broken glasses, bumps into the door frames and kicked toys are a daily occurrence. It’s been a measurable change in the past year, and more so in the past 5 years. The question of “What’s next?” is quite the popular topic in my mind as it’s hard to describe how little i’m seeing today, compared to what the future may look like.
Last year, in 2018, I travelled to Fort Lauderdale to speak and attend a conference in our industry. Last year, I did not use my cane and while walking home in the dark, walked into a chain-linked fence cutting my forehead and face. This year, in 2019, I used my cane 50% of the time but always in the dark. While it kind of sucks to use the thing, I learned a lot in the 4 days of my trip and as a result, I am much more willing to use the cane when it’s needed to avoid more injuries and incidents.
To know what’s to come. Perhaps my vision has stopped it’s progression to darkness but my gut tells me it has not. We still have a lot of challenges coming our way but it’s important to note the accomplishments and with no certainty of my future with sight, we are preparing (as much as possible) for continued decline in my visual ability.
What I’ve lost in vision is missed, dearly. I miss my independence. I miss driving our car. I miss not having to be scared when out in public. I miss confidence. I miss the days when I wasn’t inhibited by my vision. I miss the feelings of feeling capable in all aspects of my functionality. I miss a lot of things…
The future is scary. The future appears to be darker than today and that sucks. I worry for my daughters and how this change to their Daddy will affect them. I worry what they will think of me as my role in our family is much different than most Dads. I worry every day that my inability to visually see will cause negative results for them as they blossom into the woman they were meant to be. I’m scared for my wife and all of the new roles she is carrying. From the driver to protector. To the bill signer to the seat finder. From the guide of me to the mother of our two beautiful girls, her responsibilities and reality have changed far greater than we could have ever thought.
While all of these changes, fears and apprehensions are real, they are countered with positives. Our family isclose, I mean REALLY close. We are together nearly all day, every day. We are communicative and in tune with one another, to a level that I never new possible. We know each other and trust one another more than I have every experienced in my previous portions of life. My girls see their Dad and Husband fail constantly but they also see me get back up and try again, a sesson that I’ve felt important far before my vision decreased to a challenging point.
With all of these words put down, it occurs to me that all of us have a battle and a change we are dealing with. Some are fantastic and full of excitement, some are challenging and overbearing with qualifications for continued advancement. No matter what the change, we can fight or flee.
I choose to fight.