International Albinism Awareness day

Today is International Albinism Awareness Day. In 2014 the General Assembly adopted a resolution proclaiming, with effect from 2015 that June 13th be known as International Albinism Awareness Day. People with albinism all over the world face discrimination particularly those living in Africa. Albinism also continues to be misunderstood socially and medically even here in America. I am still blown away by the lack of knowledge many doctors have about this. I read stories of people in the UK and the USA whose children were not diagnosed for years even after seeing various doctors or they have a limited knowledge of the medical needs of a person with albinism.

Albinofoundation.org states “The overall aim of the celebration is to create the much needed awareness that members of the public and governments at all levels need, on the challenges faced by persons with albinism and ensure the total eradication of all forms of discrimination, dehumanization, and stigmatization associated with the condition, as well as provide the necessary tools that will improve their wellbeing”.

One of the ways I like to spread awareness is through this blog, others hold events with families and friends, perhaps one day my sons will be able to help spread awareness through their schools. I count myself lucky every day to live in a city with some of the best doctors and with some wonderful organisations that have been instrumental in assisting me in getting Nash the best support, others are not so lucky.

 

No Big Deal.

Love is

Alright alright, Nash didn’t actually hop on the school bus but he did start one day a week last month at his brother’s preschool. As I mentioned in a previous post I was overwhelmed with a range of emotions when I dropped him off that first day. I hadn’t expected to be so sad but maybe it was to be expected since he is the youngest. I am not the most sentimental person as you can probably tell.

My initial feelings about leaving him at school were focused on how he would fit in. Would the other kids notice his nystagmus or are they too young? Would they pull on his glasses (you would not believe how often this happens)? How will he deal with his photophobia?  What if he flings his glasses off and the lens pops out? What if he refuses to wear his glasses? Did I put enough sunscreen on him? One time I put him in a long sleeve shirt and thought it would be safe to forgo the sunscreen on his arms, big mistake. Although these are valid concerns I was spending my time worrying about a lot of things that were generally out of my control.

As Bob Marley tells us “Don’t worry, about a thing. Every little thing is gonna be alright.” This song has been regularly requested by my eldest son in the car, I think he is trying to chill me the #$@&%*! out! I admit it wasn’t really Bob Marley who got me to chill out it was the little kids at Blossom Heights preschool although wise words Bob. One day I walk into school on a non-Nash school day and these little girls from Nash’s class start shouting “Look there’s Nash, there he is, Nash, Nash”. It was just about the sweetest thing I had seen they were so excited to see him. It was in that moment that I thought what am I worrying about this kid has got it and is charming the socks off of his classmates all the other stuff isn’t worth worrying about. If his glasses come off, no big deal, if I haven’t applied 3 layers of sunscreen, no big deal, if he takes his hat off, NO BIG DEAL.

(Featured image – black and white cartoon courtesy of www.LoveIsComix.com of a mother seeing her child on to the school bus).