Annabel turned One

Annabel turned One which means it's been over a year since I've tracked our daily lives of raising our two little girls with Albinism. It's time I recount our year with all its triumphs and tragedies.

We survived another summer without sunburns, or heat stroke which in and of itself is no small feat when you have a wild 2/3 year old who lives to be outside and often doesn't want to wear her hat. We spent weekends at the indoor pool while everyone else we knew was at the beach, days at the indoor playground instead of the splash park, and evenings at the outdoor slides when the sun slowly started to drift down enough that a pulled off hat or shoulder peaking out didn't send me and my husband into sunburn hysteria. Maybe we worry too much maybe we don't. Annabel was most often covered up in her stroller and she was most content out of bright lights.

Summer is upon us again and right now our biggest struggle is getting Annie to wear shoes and walk outside. She is terrified of being outside unless she's held, so we are trying to figure that all out right now, but I feel confident she won't start school barefoot, so I am trying not to overthink it.

Our ophthalmologist referred us to CNIB (Canadian National Institute of the Blind) and we began  vision therapy with the girls. Our vision therapist, Sandy, drives over two hours to be here for an hour with the girls doing different hand-eye coordinated activities. When I hear the words Vision Therapist I automatically imagine someone serious, but when you meet Sandy she has one of those souls you feel like you've known forever and my anxious two year old, who is notoriously not a people person, sat and played with her like they'd been best friends their entire lives. Now that I am back to work full time it's harder to make these sessions work, but Sandy is so great and we will make it happen as often as we can.

We tried again and again to get support from FSCD and have been denied again. We know other families with children with Albinism, who do get support from them, but after many battles with them we've decided it isn't worth the stress, so we've let it go. If you feel like you have the energy to take them on they offer so much great support to children with disabilities IF you can get approved.

Annabel started walking much later than Scotlyn taking her first steps at around 15 months old and still isn't talking. The interesting thing about this is that her vision is a lot better than Scotlyns and Scottie walked by 10 months and had so many words at the age Annie is now. I think so much of it depends on the kid and we tend to want to blame the vision.

What I can tell you is that we have fully adjusted to raising children with Albinism, every year it gets easier, and every moment is so worth it.