Love Thursdays
No matter how horrible life is or how wonderful distracting, Trash Day is my *FAVORITE* day of the week. Happy Thursday everyone!
We have a few more weeks before school starts and home life is pretty stressful. Lots of arguing and general sibling rivalry. Oh how I wish there was a manual for parents of children with brain disease. How the hell do you parent / discipline a child when her actions are very much disease related. TOTALLY SUCKS.
I go to bed trying not to think about the disease and the path of our future but my mind wanders that direction every night. John and I were talking late last night and knowing that this will only get harder when things were supposed to get somewhat easier is so depressing. Putting myself in Rachels shoes is even more depressing and definitely very very scary to me. I am so glad that she doesn’t know because it would most certainly decrease her quality of life TODAY. The only thing I want for Rachel is to maintain her current quality of life for as long as possible, with mobility or without.
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.
Only 3 barrels of trash today…sigh…very disappointing. Maybe next week.
As for Rachel it still hasn’t sunk in. It will get bad…we will adjust and get used to it…that will last a while…then it will get worse…repeat.
I don’t like the dog but glad she has it.
Hey Girl! This was a big question that came up on a forum event I coordinated a few months ago. Not sure if this thread will help in any way but just in case…
http://focusonlinecommunities.com/message/64476#64476
Kate…I just wanted to let you know I really appreciate your help on the top floor.
For those that haven’t seen it. I have a massive man cave. I am very territorial about it. Due to the heat the kids slept upstairs with me for 3 days. The place was a mess. Add to that the cats wouldn’t leave the top floor with the new dog. They peed on my new sheets, pooped on my bed then pooped on a laptop(closed). Kate relocated the cats, the liter box and washed the sheets. Now my cave is clean and smells nice again. Thanks Kate.
Man oh man… You have some tough questions about a very tough road ahead. Having just gone through our own scary ordeal with Spawnling last week, I have gained a new appreciation for anyone who has a chronically ill child. We may end up there ourselves to some degree, but not anywhere near what you’re dealing with (ours could be eye and heart related). Just raising a family is hard; raising a family with an unwell child who is on the decline is a whole new ballgame, and I am SO sorry you’re going through this. I’m even more sorry Rachel has been dealt such an unfair and tragic hand. Having had the pleasure of her company in the earlier years, I can honestly say she’s a gem and it breaks my heart to know her life path is going to be cut short in such a terrible way.
I wish I had some answers, or some wisdom, or something to offer you. I guess all I can say is that I’m here, I’m reading, I’m listening and I’m sending you all so much love. Always.
Trash day ROCKS!!! Tuesdays here….thanks again for yesterday, I had a lot of fun!!! Love you and Happy birthday!