I have been asked quite frequently of late about the disabilities that our children have. I realized that I haven't really touched on that topic here on my blog. Maybe by posting here it will help others to understand our kids.
Nathaniel and Lily both have albinism. They lack pigment causing them to have white hair, light skin, and blue eyes. Lily's eyes are an icy blue, while Nate's are more deep blue. They both have nystagmus causing the eyes to jump back and forth. It appears that they never settle to focus, but the do. Nate's nystagmus appears to be less than Lily's. They are also both photophobic. Lily is much more sensitive than Nate. I do not know the extent of their vision, and will not until they are older and able to express themselves. We are hoping to get in to a genetic opthomalogist soon. I am often asked if Nate sees better than Lily. I just don't know. Lily holds things closer and is not able to recognize people without other clues. We haven't had Nate long enough to really get a feel for his vision. Someday we will have better answers.
Mae has nerve damage in her right arm. When she was born, her shoulder was separated causing a brachial plexus injury. Because of this injury, she has limited use of her right arm and hand. We accepted her referral assuming that she would never have use of that arm. We were quite pleased when we met her with how much she is able to use her arm and hand. Mae is able to lift her arm a few inches and hold toys between her arm and torso. She is also able to put toys in-between her thumb and first finger. I am hopeful that someday she will be able to pick things up with those pinchers. The other three fingers do not move at all. She has no grasping ability with her hand. Her arm does hang awkwardly, and appears to be shorter. However, when I straighten it out, I believe her arms are the same length. In December, we will be traveling to Sacramento to the Shriners Hospital. Hopefully, we will get more answers on what we can do for her in the future. We are perfectly content with her abilities as of now, but we do want to do everything we can so that she can reach her fullest potential.
One of my prayers is that people will see past their disabilities and just see who they are. I want them growing up feeling confident in who they are, and not letting their disabilities define them. They have the potential to be whatever they want. Well.... except for maybe surgeons!