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.
Also known as trash day. Must pay respect to the best day of the week. I have been struggling with something recently, nothing to do with my children and nothing to do with this nightmare of a disease. And nothing (suprise suprise) even to be blamed on John. Actually, John and I are doing well, as well as anyone would in our shoes. I’m taking a break from TV, from facebook and any distractions in my life that lead me away from tackling something (and no, not my weight) that needs to be tackled. Yes, this is a vague entry but I truthfully feel very uncomfortable talking about it. I’m not a “vague for vague’s sake” kind of person but thats how this has to be. Keep reading my blog if you’re interested in keeping in touch. Would it kill you to post a comment once in a while? 🙂
Just got back from a couple hours out with my brother and friend. Still can’t tolerate the heat of a buffalo wing. Maybe I’ll try them again in 15 years. I was reading a comment on someone’s facebook status update. The comment on the update was along the lines of “God is watching over your son making sure he is okay.” Um, dude. The child is terminally ill due to a genetic and incurable neuro-degenerative disease. I didn’t even really understand the concept of neuro-degenerative until this summer. Wiki covers the gist of it: http://en.wikipedia.org/wiki/Neurodegenerative_disease
It is dark and gloomy today but soccer is still on. Julie still won’t play on the team that we sponsored and are coaching. My girl is, at this age, not interested in playing team sports. I prefer solitary fitness activities as well so I can’t say that I blame her. Boston won’t stop eating the organic banilla yogurt. Gross! At least no one is fighting him for it. Rachel is, right now, watching Nickelodeon as best as she can. Her blindness is becoming more and more apparent. London is my cookie monster. Can’t keep fresh baked goods in the house for very long with London Jack around. I am clearing out my email, ordering pictures via shutterfly and tying up some loose ends. I cannot say enough about having a regularly updated “to do” list, it really makes a difference. gmail + google calendar + google docs = increased productivity and happiness I love Google! Rachel goes back to school on Monday. Her new schedule is M, Tu, W, Th. 8:45 – 11:15. I am excited for the new set-up.
Another trash day has come and gone. This was a pretty uneventful week, the kiddos are all healthy (knock on wood) and Rachel went in to school for some OT and Speech therapy which she enjoyed. Next week she is going back to school on a modified schedule that fits in with London and his preschool hours. She hasn’t been going to school since the week of Disney (Make A Wish) trip. Julie is sitting next to me playing with her new wooden stamp set that I amazoned her as a special treat. The weather is perfect for October and Rachel, London and Boston are playing on our porch, actually on the other side of the window I am sitting next to. Its very nice to see them playing. Rachel is doing some pretend play in their play structure, pretending it is a ship that she is sailing to California with her GPS. Its nice to see her imagination at play. She started a stimulant medication this morning and I’m hoping that we will see some long-term benefit and behavioral improvement. Her vision continues to get worse, which we know to expect, but it still sucks to see. The blind have their own world that I have never been exposed to but I’ve been thrown into the deep end of the pool and am trying to learn quickly. London and Boston are back to daycare 2 days a week and are staying until 5 so I can get some work done (which is quite busy as of late). Both boys are in preschool (London is where Julie went and Boston is in the little green school across the street from our house) and they are happy. London is going to be Woody and Boston is going to be Buzz Light year. Julie wants to be a “Girl Frankenstein” and Rachel wants to be a “Mummy.” WTH am I going to find a Girl Frankenstein??? The kids are convinced that I *NEED* to be “Jessie” from Toy Story. Looking forward to Halloween (which is also my last day as soccer coach for the season). A very nice person is taking my girls out tonight for a couple of hours and I am sitting next to three hampers full of clean laundry with no chance I can get it folded before she comes. I guess, on the bright side, is that the laundry is clean. Most people say “Calgon take me away” but I’d rather think about this: