It absolutely kills me that so few people have heard of any of these, know nothing about all of the rare diseases out there. If we don’t have awareness, we won’t be able to cure any of them. As selfish as I know it is, my disease of choice is Juvenile Batten Disease because my daughter suffers from it. I want to do so much for this disease but I just don’t know where to start. The science behind it is extremely interesting to me but it will take me years of school to be in a professional position to do any research. I have this child 3 feet from me listening to Star Wars Clone Wars and I need to do something to help her.

Here are some pictures from yesterday. The last picture is historical proof that my Mom (in her late sixties) will still climb into a gokart.

Where I’m at. The kids are all out of school for the summer and the first week has gone really well. We’re hanging out inside in the mornings and going in the backyard for swimming / playing in the afternoon. I am determined to have the most memorable summer on record with them (for them). We have a lot of day trips planned and are even taking a long road trip as far as Kansas City and Colorado in August. My class finishes next week so I can really let loose after that.

Still in disbelief of what is to come, still very upset about the new signs of her disease popping up. Watching her struggle breaks my heart. I’d trade places with her a thousand times over. We have some good memories to make and I won’t let this stupid disease take her chances away, even if we have to shove a lot into this short time.

I’ll blog as I have more good things to say, some memories to share with you. You don’t need to see what kind of mess I am inside so I’ll show you the good stuff. We’re going to the carnival on Friday night and I promise to bring my camera. I’ll get some pool shots up later this week.

Click here to Watch So Much to Say – DMB

I was pretty proud of Rachel for getting ready to completion (medicine, nasal spray, hair, teeth, GREEN clothes) in about 10 minutes. I guess the dude (or people) who thought of this time change thing had no children.

Spring is coming! Loving the warmer weather today (although I am definitely a big fan of the snow).

We went to BJs last night and got piles of fruit and veggies which I can’t wait to dig into today. My brother promised to make us breakfast this morning and I’m trying to balance waking him up vs. letting him sleep. Kids will be starving soon. Maybe one of the kiddos will have to go up one flight and make a lot of noise at the bottom of the stairs leading up to the floor he is sleeping on.

I’ve been spending a lot of time thinking about how to handle childcare this summer and what to do. I definitely have several trips planned with this summer, several of them will take us to amusement parks. Sometimes I wish I were a child again so these heavy things wouldn’t be hanging over my head.

Bills. Parent/Teacher Conferences. IEPs. Marriage. Familial Responsibility. Playdates. Volunteering. Childcare. Fundraisers. Boatloads of Laundry. Dishes. Pets. I’d like to escape from reality for just one day and enjoy the freedom of not always having to put on a “happy face”. Trust me, I know that isn’t going to happen but it is certainly nice to daydream….

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

We had a good weekend. The kids loved having friends over and I loved having the cake John bought. I ate way too much of it but I really don’t give a shit. Cake washed down my feelings, kept a smile on Rachel, Julie, London and Boston’s Mommy’s face. And sometimes all they need to see is their Mommy smiling and the world will be okay.

Turns out my regular dentist and I thought it was THE WRONG TOOTH. This Endodontist was amazing. Numbed me up once we figured out that it was a rear molar (#2) and then did a fantastic root canal (which I fell asleep during 3 times).

My tooth is fixed.

I am in no pain.

I have my life back and my kids have their Mom back. Yay!

My children don’t see the struggle. This evening for dinner they had their choice of Mommy’s homemade chili or an unlimited supply of cupcakes. 3 / 4 chose cupcakes and my Julie chose both.

Who doesn’t love cupcakes? (Answer: No one I care to know).

Some kids don’t have a “happily ever after.” They just don’t.

Friday night Rachel and Boston had a sleepover at Granny’s because Boston is POTTY TRAINED! We promised him a sleepover as a reward and he had THE BEST time. I took advantage of being “half off” from kid duty and took Julie and London to dinner at Barefoot Bobs Friday night and then to the dollar store on Saturday. We managed a playdate and met a HUGE dog called MayDay and ran some errands.

Sunday I took John and the kiddos to the MFA and everyone had a good time. Karen, our tour guide, gave us gloves so we could TOUCH some of the exhibits. AMAZING! Even Boston had a good time.