Albinism awareness one red carpet at a time.

I feel like I haven’t written anything in a while although it probably hasn’t been that long and really this blog wasn’t intended to be a summary of my daily life. You would be bored senseless if it was. I woke up this morning and noticed an article about a young girl walking the red carpet with Beyoncé at the VMA awards, she has albinism. This isn’t the first time she has had a model with albinism in one of her videos. Since I am all for spreading awareness I wanted to share.

I am always amazed how little people know about albinism but that is only because I have learned so much in the last year. I was once one of those people and I have to remind myself that many times (or my husband does, thank you spouse). I generally use the term Albinism when talking about Nash, however, I think the term throws people. An elderly couple on our vacation asked me at the checkout of the local grocery store how I knew that my son needed glasses so young. I wasn’t sure how to respond so I told them he had albinism and that is how we knew. When I said “albinism,” they said “autism,” I said, “no albinism,” they said, well you can imagine how that conversation continued. I tried, I failed! What is it they say you win some, you lose some? I’d like to think they maybe went home and searched on the internet to see what that crazy mother at the grocery store was talking about but I doubt it. For further reading about the beautiful Ava Clarke please see the link below.

https://www.yahoo.com/beauty/meet-ava-clarke-a-gorgeous-black-girl-with-albinism-191501762.html

Depth perception

I am sitting here in the dark, sweaty and hot with a head light on my head since our power has gone out. Welcome to Houston! We just got back from a wonderful trip visiting some friends in the not so stinking hot Lake Tahoe area. After settling the screaming children, one who was frightened and the other who was woken up by the frightened one, I started contemplating what to do with my evening. I mean what does one do without electricity! I had already walked the dog, cleaned the kitchen, filled up the water bottles and found all the flashlights and candles. As you can tell I decided to write a blog post. I knew my laptop had battery power left so instead of becoming one with nature and appreciating the dark and quiet, I opted for the hum and bright light of the laptop.

As I mentioned above we just came back from vacation. The boys did great especially Nash, nothing keeps that kid down for long. Loved being on a boat, loved playing on the beach at the Lake, loved the paddling pool, loved to run for the road, loved climbing anything he could find. That kid is going to be an adventurer someday or at least I hope so. I hope that this spirit that lives inside him never gets knocked out of him or pushed down. I wish I had half the enthusiasm he has for life.

What became apparent from this trip into unknown territory on Nash’s part was that he is showing some depth perception issues. Depth perception is described as the visual ability to perceive the world in three dimensions (3D) and the distance of an object. I already knew that he had some trouble seeing 1 or 2 steps in front of him particularly if the flooring proceeding the step is the same color. He has a habit of walking full speed over it, as you can imagine that means he is prone to falling over. At our friends house we noticed that he had an issue leaving their garage. There was a strip of metal or wood that joined the garage flooring to the cement outside. He wasn’t sure how to tackle this so he decided to do it like he would the stairs in our house. He turned around, got down on his belly and then attempted to slide down. The second time this happened we were at the airport leaving Tahoe. He stopped bang in the middle of the walkway and ran up and down a metal strip that was joining two types of flooring, he then proceeded to the edge by the wall where he began to lift his foot up as if to step over something and then decided better of it. In the end I had to grab his hand and help him ‘over’. Because he doesn’t read, write or really talk yet it is really hard to grasp how his vision affects him especially since he is such a wonderfully happy, outgoing and active child. I really don’t know if depth perception improves for him or if it stays challenging his whole life (perhaps a question I need to pose to the albinism community). If you see a person randomly stopping in the street or at the top of some steps and looking like they are having trouble maneuvering over or around think of my little guy as it could be him out there having a real struggle with something not obvious to the well sighted.

Power came on and so did the air.. phew (first world problems).

Featured Image – black and white image of Nash wearing a checked shirt, hat and glasses, standing at water table lifting up a water wheel with a paddling pool to the right of him.

 

Fearless

I had a conversation with a friend recently about how my eldest son and her son weren’t ‘runners’ – that is to say they always stay pretty close to home, mom, dad and generally listen when told not to go further. I say generally, as let’s face it no child listens all the time. I have almost prided myself on this fact, my son Jack rarely ran amok, rarely pulled every toy out of the box, didn’t ever make a run for the open swimming pool or touch the gas fireplace in our old home in Scotland, or try to pull out the stones in the gas fire of our new house. He just never did those things and because of that I was always shocked and admittedly maybe a tiny bit judgemental when I saw kids who seemed uncontrollable and strong-willed. I didn’t realize that the poor mom was run ragged. The reason I bring this up is because now I have one of those kids and it just happens to be the one who is visually impaired, he is fearless. Twice over the 4th of July weekend, I heard the beep of the sensor over our front door go. We inherited it from the previous owner, and although it drives me batty with the incessant beeping every time one of us opens a door, I am also incredibly grateful. If I hadn’t heard the beep who knows how long it would have been before I noticed he was missing. Both times I caught him, door open trying to move over the step of our front entryway and when I asked him what he was doing he started moving faster out the door. I feel like this brave, outgoing, no hold bars personality will be an asset when he is a teenager but right now as a mom to an 18-month-old, it scares the living shit out of me.

He roams around our house without a care in the world, pulling toys out, dragging toys everywhere. On two occasions the baby gate had been accidentally left open and he immediately climbed up the stairs with glee. If he isn’t tired or hungry he doesn’t need me. He climbs the sofa and looks over at me with a cheeky smile on his face taunting me to come over and tell him not to do it. His new favorite thing is to move chairs and climb onto tables. I often walk by and just find him sitting there smack dab in the middle of our kitchen table just smiling at me as if it is totally normal to be sitting there. He has more personality and more balls than I ever expected, I expected so much from his albinism diagnosis, I expected that he would fear the stairs, that he would be nervous to go outside, that he wouldn’t enjoy swimming due to the glare. He breaks all my expectations and seems to enjoy all that life is offering him right now.

He is teaching me so much about myself, about how to be a kinder more compassionate and less judgemental human being. I can’t say I win every day but knowing him has changed me. I also believe my blood pressure may be steadily rising. What is it they say? Easy baby, crazy teenager or crazy baby, easy teenager (an old wives tale maybe but one can only hope).

Featured image – Nash on the left holding dad’s hand as they walk into the sea (no fear).