Well
I pretty much feel dead inside tonight and I thought I’d be nice and share it all with everyone who reads my blog. John went last week and got tested to make sure he isn’t a carrier of Batten Disease. Those results should be back in another week or 2.
I’m terrified, literally terrified that he will come back as a carrier for JNCL. Its really unlikely, but I have heard of this happening before in a conversation with another Batten Parent who got their diagnosis some years before we did.
My healthy other 3 children can sometimes be what get me out of bed in the morning, knowing that they have this future I must look forward to. I can’t imagine what it is like for the other parents that have multiple children affected. Please don’t ever let me find out what that is like.
I know my mind is getting the best of me tonight. I’m going to bed.
Oh and Rachel is having sinus surgery on Thursday. I haven’t told her. It is going to be hell. A more acutely experienced hell than normal. I’d like to add some curse words at this time but I don’t want to lose my most regular commenter (my Mom). So assume I said them so I can temporarily feel better.
‘Nite
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.
Oh honey, I pray he isn’t a carrier. I always have you in my thoughts and marvel at how strong you “appear”. If you ever need to just get it out, you can always call me and I will just listen or whatever you need. Love you!
You know that unconditional love is part of being a good mother. It is this love that hurts so much when you are trying to do too much & all those bad what if’s take over. Hang in there my beautiful daughter.
John is with you in the what if;s. he too is hurting.Together we wait .
Lets plan Julies 6 th birthday & get ready to celebrate BIG. Hugs XX
Counting on those odds being in your favor. (((hug)))
Good luck tomorrow! Let me know if I can do anything!
Hang in there Kate! I’ll be thinking of Rach tomorrow.. coffee soon!
ps… you said enough curse words the other day when I saw you, so you’re good! ;o)
xo
I hope surgery went as well as expected today. I’m thinking really good thoughts for John’s rest results, too. I know the odds are strongly in your favour of it coming back negative, but of course you’re worried. How could you NOT worry? I just said this in another comment, but damn how I wish i lived closer… 8 hours is just too far away to be of any use, and I sure wish I could help in some way. xo
Hang in there Kate! I’ll be thinking of Rach tomorrow.. coffee soon!
ps… you said enough curse words the other day when I saw you, so you’re good! ;o)
xo