Exhale
Having to explain to my 9 year old daughter who can’t see very well that she can’t learn to ice skate really SUCKED! If only for one winter, I wish that Rachel can ice skate. Please let it be possible.
Earlier today Rachel told me the money she is saving is for a car. I gently reminded her that she can’t drive a car and she said her “person helper” would drive her in it. I told her she should have Julie drive her.
This sucks so hard. A nightmare. I have noticed she is having a harder time identifying her siblings. As of late she would confuse her brothers but now she can’t differentiate between her sister and brothers. She’ll walk into a room looking for me and if I don’t immediately answer her calls of “Mom, Mommy?” she immediately walks out because she can’t see me. Such a good kid that deserves a full life. I guess I better get moving because I don’t have as long as I expected. Its a very painful lesson. I’m currently looking into planning some mini trips for us when the weather warms up, doing things that can be DONE rather than just seen.
Lots of rage today from her. Her emotional filter is apparently on vacation (hopefully not a permanent one). I’m grateful, in some ways, that Julie, London and Boston are so young because they are doing great in the face of our daily life. But its hard because they cannot grasp the concept of her recent blindness and can’t remember to “keep the floor clear” (or she’ll trip and fall or break their stuff out of sheer frustration). Most adults I know can’t grasp the concept of her recent blindness, either. What does that tell you? My little 3 are awesome with her. I’m starting work with having them identify themselves to her but that will take time.
DO NOT TAKE YOUR LIFE FOR GRANTED!!!!!!!!!!!!!!!!!!!!!!!!!
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Try taking Rachel by herself sometime to ice skate. Great one on one time and it would allow you to help her “learn” to ice skate. She probably doesn’t realize that she CAN’T… just allow her to enjoy as close to independent as you can. Which might involve you helping her every step of the way. We’ve found that a lot of times, *A* is just as happy this way of doing things that he can’t do himself. Just gently remind her your holding onto her for her safety cause the ice is hard or whatever. Don’t tell her it’s because she can’t do it herself.
(((HUGS))) for mama and family! This isn’t an easy struggle but you are doing a great job of taking care of her.
I am going to cry now….she wants to save her money for a car….I don’t know what to say to that.
Hey…you invited me to go ice skating….and you went without me??? I feel very rejected at this moment. But I still and always will love you.
It is nice that Rachel got to go even though she couldn’t see…Could she could feel the motion of it? Did she like that part? xoxo
HUGE HUGE HUGS I can not imagine what you must go through daily as well as the things Rachel has to miss out on. I am sure if you really wanted her to skate, there are programs out there for her to learn while vision impaired. I am thinking of you!!! HUGS!!!