A good friend encouraged me to start writing about my experiences with Nash and Albinism. It has taken me a whole year to take the plunge and start this blog. Sleep deprivation, playing candy land 5 million times, acting out various superhero capers and trying to keep the baby alive took up all of my energy. I will warn you I am by no means an accomplished writer. In fact, my husband loves to correct my grammar on a daily basis, it has become a thing in our marriage. I text him, he texts back highlighting something I wrote incorrectly and so on. Subconsciously I probably just do it on purpose now to annoy him. Life wouldn’t be fun if you can’t irritate your husband a little bit.
When Nash was born we were shocked by the masses of blonde hair, I had always wanted a blonde haired baby but I being of half Asian ethnicity knew this to be a dream. My husband and I both mentioned to each other that perhaps our son was Albino (this is the word that was used and I am repeating it here, but I do know many find it to be a derogatory term that has negative connotations). The doctors and nurses disregarded our comments and we went on to assume that his coloring came from his father’s side.
After one month I suspected something was not right. For some reason, I had completely disregarded Albinism primarily due to my ignorance about the condition. I thought Nash was blind I was convinced of it. He wouldn’t look up at me as I breastfed him and even though it was still early days I knew he wasn’t tracking objects. At first family and friends told me to wait that it was too soon but by month two they too noticed and encouraged me to go see his pediatrician. Nash had by this point developed Nystagmus and involuntary movement of the eyes (this will never go away but depending on how far he is looking I notice it increasing and decreasing).
The first thing my pediatrician told me was that he should have a brain scan – my worst nightmares from good old ‘Dr. Google’ were coming true. I can’t be sure if she decided to use ‘Dr. Google’ also but she downgraded her plan of action to Ophthalmologist first. I know you’re going to do it but if you ever think there is something wrong with your child don’t Google, Bing, etc. it is like Alice going down the Rabbit hole once you are in there it is hard to get out.
We made it to the Ophthalmologist where we were almost relieved to find out that he had Albinism. Of all the things I had imagined this was by far the best outcome. We were nervous and scared as to what this meant for Nash but we knew he could see, just not very well. His life would definitely be more challenging but lots of people lead challenging lives and who said life would be easy for anyone, not just Nash. He was unofficially diagnosed with Ocular Albinism although his diagnosis was incorrect (more on this another time). He has now been diagnosed with Oculocutaneous Albinism OCA2, unless we decide to do genetic testing we cannot 100% confirm this diagnosis. We have decided as a family that the testing won’t change much, it would narrow down the type of Albinism but it won’t change the outcome of his condition or how to treat it.
Nash has really been a breath of fresh air to our little family and has surprised me in so many ways. Nash is happy to be with anyone and loves to get in amongst the older kids, he started practicing planking at 4 months ( I knew there would be another yogi in the family) and was crawling by 7 months. He is such a happy little guy. I have no idea what the future holds for him but I know we will try our hardest to make it a bright one.