I just found myself googling the 4 stages of grief only to find out that there are 5. Who knew? I’m assuming that its normal to bounce around from one stage to the next and back again? Anyways, here are the four FIVE stages of grief. 1. Denial (Check) and Isolation (No) (Doesn’t that make six stages?) 2. Anger. (Check) 3. Bargaining. (No) 4. Depression. (No. I’m so sad for her and what she will miss out on but I won’t give into depression and miss out on the good moments and the good days) 5. Acceptance. (No) I can’t imagine the day that the warm sun rises and I actually feel acceptance. I tried to spend a few moments today imagining what Rachel would do if she were in my shoes. What would be her plan of attack if it were her daughter with this disease. What would she do? Because whatever *that* is, is what I want to be doing. I need to get out of the overwhelming sadness I feel for her and the speechlessness of it. I need to start fundraising so there is never another child lose their eyes, lose their mobility, lose their mind. In Rachel’s honor I need to make a difference. I changed the “About me” on the top right hand side of the blog to sound a bit more cheery. I don’t feel that cheery yet but I’m hoping to get there. I want to spend my “Kat time” (when I’m not working or with the children) on promoting awareness and fundraising for the www.BDSRA.org. I start most of these paragraphs with I. I don’t know why. I have talked about fundraising a few times since July but I don’t know where to get started. I haven’t gotten closer to figuring the “getting started” part in the months since July so I figure I better get started NOW or I might find that 2 years has passed and I’ve done nothing. And doing nothing is simply not an option. Please email me at mrskatvon@gmail.com or comment if you have fundraising ideas that have worked for you (or someone you know) in the past. Also please contact me if you are willing and able to help. I definitely plan to have a raffle. I also plan to contact Rosie. 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. Still can’t get over it. She was born and was normal! (There aren’t enough exclamation points to emphasize that point, in my opinion). I had to remind her that glasses can’t fix her eyes and that there is nothing that we can do to make it better. I’ve talked about this with her a couple of times before. This time her reply was “You mean I’m gonna be a blind kid?” I said that yes, she is (trying not to let her hear me cry). She then became concerned that she was going to be alone. I reassured her that she won’t be alone and she became concerned that I am going to die, that Daddy will die and that Granny will die. Then she asks me: “What if you and Daddy and Granny and Julie, London and Boston all die?” I then went through all of the people that will help take care of her and she kind of mentally walked away from the topic to play in the bath water. Tomorrow is another school / work week. Hopefully it will be a bit brighter.

Can’t get over this and what is in Rachel’s future. Can’t get over how unfair this is for her. Can’t get over how hard it must be for her. Can barely breathe. I just can’t believe this is happening.

The Orientation and Mobility Specialist came to fit Rachel for a “pre cane” an pointed out that the sign I requested has been hung. She, btw, is totally awesome and gave me a ton of helpful suggestions for the “right now” while Rachel has some usable vision and for when the vision goes away. But between the arrival of the sign and the pre cane I just don’t think I am capable of ingesting enough chocolate to eat the feelings from this day away. It can’t hurt to try, right?

Very interesting article @ Daily Mail Reporter here.

Thank you to those that emailed and commented on my blog. It does make me feel better to be heard and not “suffer in silence.” Really I am not the one who is suffering but it is very painful to have a front row seat. And thank you to Veronica at ATT Wireless who kindly cancelled Rachel’s cell phone and waived the early termination fee. Better day today. “Better” is a relative term I should clarify. I still had to lay her on the floor with a rolled up towel under her head for a pillow and pin her body and arms down so I could brush her teeth and she tried to spit in my face in the process but the bottom line is that I got the job done. I hope she is having a good day with the Melissa & Doug music set I got for her this week. She was unhappy with music class this week because she couldn’t sing YMCA (she can’t mentally keep up with the song and can’t see the arm movements) and she actually was able to tell me “I can’t keep up.” I can’t imagine. Hopefully her person (Mrs P) isn’t suffering from a headache right now. 🙂 Julie is at home with me today with a hacking cough. She isn’t sick, just sick of coughing. (And she is eating oreos next to me right now). If anyone has any grocery coupons they no longer want / need I would be very appreciative to have them. I am trying to cut down our food bill as much as possible.

could explain to me how to be a good mother to a child that is recently blind, suffering from dementia and borderling schizophrenic symptoms with a good dose of rage and topped of with the inability to self inhibit… THAT WOULD BE BLOODY AWESOME. Because I wake up feeling like shit and I go to bed feeling like shit. And nothing I do for her ever seems to be right. This is a nightmare and at the end of this I will be eaten alive by guilt because on some level I am sure I will feel some relief. I HATE THIS DISEASE! Please let tomorrow be a better day. I want my little girl back.

Took the Halloween decorations down and put them away and my 4 little helpers assisted me with putting up Christmas lights. All 4 of my beautiful babies are thrilled!

After my post about “dressing up” for Halloween I went bought a cheap cape, witch hat and black lipstick / nail polish. Painted my nails, applied lipstick and was all ready to go out. Enter Murphy’s Law. The wind was HOWLING all evening causing the hat to blow away and the cape to be a choke chain. I didn’t make it down our front steps before deciding to take off the hat and cape (leaving me with no costume). So I figure that there has to be some Murphy’s law about that… Nevertheless, here are some pictures of my Halloween creatures. Kids had a good time, the boys quit early and Rachel’s vision loss was extremely noticeable. She was a trooper despite being unsteady and unsure of her steps. Julie had a great time. We walked from our house to “F” street and then got a ride home. We have a huge pile of candy and the kids feel so good about this day. Today was lived to its fullest and I am grateful to my brother and parents who helped us enjoy it.

I feel like a jerk today even though I’m having a good day and the kiddos are as well. What if this is the last year that Rachel can see? I said I was going to dress up for Halloween but over the last two weeks I’ve decided against buying a costume. The kids were really excited that Mommy was going to dress-up. John even has a costume idea (tough biker guy with fake tattoo sleeves). I need to get out tonight and buy a costume. Maybe I will drag my brother with me. Seriously, people. You only live once. Try and make it count at every turn in the road, at every bump and on every rainy day.