I’ve asked my kiddos to write today about what they are thankful for. This is a common theme in America in November that I think is total crap. Many of us are selfish and take life and health and love for granted throughout the year. Boston and London realized last night that there are website statistics which compare their posts in views and comments. They asked me to assign them a topic which will hopefully get them the most post views so I had them jump on the “Thankful for” posts. I was thankful earlier today for having the common sense to record this video on our make a wish trip back in 2009. Watching it feels like I am being split open and all of the happy is being shopped vac’d out of me but I’m glad to be able to see what my girl was like before this fucking disease activated inside of her.
Can’t believe it is January already. Julie started back to school a few weeks ago and is enjoying her social time, she is pretty overwhelmed with all of the stimulation but loves it overall. London is starting preschool next week in the afternoons and they are all going to Art Class again starting later this week. Rachel was kind of upset about not going but I said she could bring some art supplies to Granny’s house as she’ll be at my Mom’s for her regular Friday night “date.” Rachel is about 95% blind. The other five includes a spec of vision (literally a spec) out of the corner of at least one eye and she still has “light / dark perception.” She is handling it as well as can be expected. I try to get her to talk about it and how she feels and if she has any questions about her blindness and for the most part she is as happy as can be expected (and then some). She and I are going to the University of Rochester next week for a “check in” to see how she is progressing as they are studying Juvenile Batten Disease. My fingers(read the rest)
Lots of good stuff going on with work, Rachel changed to a new medicine and London was covered in spots (the chicken pox). Rachel has lost about 6lbs (I’ve found at least that much) and we ended this week with a ham dinner with my parents and brother. Rachel watched “Ice Princess” tonight which is a movie that she used to watch A LOT but hasn’t seen it since going blind. She kept on saying things and asking questions that only a sighted person would be able to ask / say but it was obvious that she was recalling the visual memories of watching the movie years ago while listening as a newly minted blind person. I can’t describe the complexity of how that broke my heart in at least 3 different ways. You may not know that I often refer to myself as “The Iron Maiden” because I “never” cry (it is a rare event) but thinking about what it must be like for her to not be able to see, how confusing things are for her. It sends me over the EDGE and my iron clad tear ducts fly open. Tomorrow I am taking the girls for haircuts(read the rest)
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(read the rest)
Gosh this has been a busy couple of UNEVENTFUL weeks! Just the way I want it! We had THE REAL Santa and his Elves pay a visit to our house on Friday night, complete with presents for the kids, the cats and Holly (our dog). The kids were SO excited! This week is a short week at school and on Wednesday they are having “Polar Express” day and I’ll be going in to help out with that. Today at 12:30 a blind man is coming into Rachel’s special ed class to talk about being blind but Rachel gets out of school everyday at 11:15 so I’ll be bringing her home for lunch then taking her back in. I hope I get to stay and listen to him speak. I hope everyone is enjoying this Holiday Season. I have plenty of pictures to post and will get around to doing that this week before Christmas. Now tell me, what are your family plans this week? My children and I LOVE this time of year! If you quickly type out your traditions I’ll read them to my kiddos and maybe we’ll adopt some of your traditions. Thank you!!
Over the past two days I have developed some kind of lung infection with a sore throat. Julie has a cough that keeps her up coughing at night. I need to feel better tomorrow. NEED TO. We had a good Sunday, our only family day together ever week. Each kiddo took a bath and while Rachel (who was the last to go) had a good soak we talked a bit about her eyes. You’ll have to remember that she has made very few comments about the loss of her eyesight in these last months which was another symptom of something “major”going on with her. She was about 20/40 at the beginning of this year, tested at 20/125 and 20/320 in May 2009, then tested at 20/400 (with lighthouse cards) in early June 2009, then 20/250 in July (but was inconsistent with her answers, as she had been at the other two eye places). Her “certificate of Blindness” is signed 7/13/09. Her eyes have progressed welllllllllllll passed 20/200 in these last couple of months with substantial loss of peripheral vision. You can literally tell by looking at her eyes that they are substantially more affected than they were in early October(read the rest)
This is a repost from Rachel’s Mom’s blog @ www.mrskatvon.com Title: 847pm When you get a call at nearly 9pm from the head of Neurology you have to kind of figure that it is going to be bad news. Dr Darras called this evening to let me know that Rachel’s Juvenile Batten Disease test came back positive with the standard DNA presentation. For those who are new to the road I have been traveling with Rachel, Batten Disease is 100% fatal. There is no cure, no real treatment… from what I have read up on it within the last few weeks all they can do is treat the symptoms. I will leave you to google “Juvenile Batten Disease” because while I am ok right now (I was pretty sure that she had something neuro-degenerative) I will not let myself think of the future right now. And to anyone who reads this please take heart in the fact that you can’t say the wrong thing to me. I’d much rather you stick your foot into your mouth than ignore me because you couldn’t come up with the right words. The next step: MRI on Thursday which will give us a good(read the rest)