Babys First Year Blog
Tough News to Swallow
We got an update yesterday from a Nystagmus specialist on Arlo’s eyes. I’m too drained tonight to rehash it here.
It took me nearly all day to write it, but I’ve posted the details on my personal blog. We’re going to find our way through this as a family and I hope that in ten years time (heck in a years time!) that I look back on this heartache and realize that his vision has far exceeded our expectations.
~Melissa
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6 Comments
Lou commented on Sep 07 11 at 10:43 pm<3
Emily commented on Sep 07 11 at 10:47 pm*Hugs* to you Melissa. We’re rooting for you and little Arlo! He’s blessed to have such a loving family that will give him all of the encouragement and support he needs.
Alyssa commented on Sep 08 11 at 9:00 amThought and prayers to you and your family.
Hope this makes you feel a little bit better… I taught high school for years and had students with varying vision abilities. We, the teachers, were well informed about how to best serve this students as part of their federally mandated individualized education plan (IEP).
We would then work behind the scenes to help these students without the other students knowing. I would always make seating charts and move them around the room to places they could see best.
I would pass out papers with their special copy on the top or bottom of the pile. We would have a signal so I would know if they needed something special.
The other students had no idea what was going on and we were able to set these students up for success :)
Bridget commented on Sep 08 11 at 9:38 amMy husband has ocular albinism and it has never held him back in life. He describes it as making everything look a little fuzzy, but he has adjusted. He drives, has played ice hockey since the age of 8, reads, watches tv – there have never been any limits on what he can do. In school he would sit in the front of the class and get large print text books. In college he got first pick at student housing because of his “disability” (and as a kid it got him extra good seats to baseball games). My in-laws never treated my husband’s condition as a big deal and because of that, he never considered that it would limit his life in any way (except ruining his dream of being a fighter pilot after watching Top Gun a few too many times).
I know this must be scary for you and your husband, but with your love and support, your son will be fine. You and your family are in my thoughts and prayers.
Madtown commented on Sep 08 11 at 1:17 pmMy Father was born with OA, along with Albinism that left his skin and hair without pigment as well. He played little league baseball, high school baseball, graduated top of his class from AU, and at 60 years old still drives a car. His disability was never an offset for him. He is an amazing Father (as I’m sure your little one will be one day) and all four of his children and one grandson have inherited his sky blue eyes. I think as time heals the hurt you feel you will come to realize that this is nothing to be upset over, rather a uniqueness that your magical boy was born with. for. a. reason.
Best wishes to your family.
Johanna commented on Sep 08 11 at 8:21 pmMelissa – My thoughts are with you and little Arlo. I know I would have been just as devastated as you to get this news about my own little nine-month old guy.
I did start thinking about how we really all do have our “thing” (meaning our obstacle or challenge). I had pneumonia at four which triggered lifelong moderate-severe asthma; my brother was diagnosed with a fatal kidney disease at 10 and is still going strong at 41, but has been on med.s constantly since the beginning. Neither of us have EVER let our conditions hold us back from anything we really wanted to do.
Arlo will be the same – his challenge will make him both strong and compassionate, and you will most likely look back one day and be glad you caught it so early so you could support and accommodate him as much as possible from day one!
Stay strong – you have a lovely family and a beautiful baby boy. He’s going to be a star, you’ll see!
Peace – Johanna
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