We’ll see
It is apparent to me that people who need sleep the most get it the least. Either my mind keeps me up or I am too stubborn and need to finish just one more thing. Just. One. More. Thing.
John and I fell asleep early tonight and at 3am I shot out of bed and ran downstairs to take Holly out to walk. What a good girl! No accidents!
Yesterday I had an intake meeting with Pediatric Palliative Care and I requested a Personal Care Attendant (PCA) to help Rachel get ready in the morning because we have had such a difficult time getting her ready in the morning for YEARS. They also have a volunteer program and we talked about having someone come into the house and help me with the children while John is working at the shop on Saturdays. We’ll see…
Today (Wednesday) I have an intake appointment for Rachel with Psychiatry at Childrens Hospital to discuss Rachel’s medical situation and behaviors at home and see what type of medication we can give her that won’t lower her seizure threshold but will take the edge off of her extreme moods (without making her a zombie). Let’s hope this is possible, I kind of feel like I am asking for something that can’t happen. We’ll see…
Tomorrow Night (Thursday) we have two volunteers from Make-A-Wish coming to talk with the 6 of us about Rachel and her wish. They know about her cognition and attention issues but I’m hoping she will have a good night and be clear. She often has heightened anxiety when in new places or with new people and can become extremely silly. We’ll see.
All of this is such a surreal experience, like a really bad dream. The weather yesterday felt very cool and I briefly forgot about the diagnosis and felt so good and hopeful about all of the fun shit we’re going to do this fall and winter. I quickly slapped myself into place and felt really down. I think the funny part about this is I sound really unhappy and miserable, maybe like I am not getting out of bed or showering. I WISH. I don’t really wish but I’m certainly not letting this stop me from being alive and participating both as a person and mother. Just about all of the horrible crap I am feeling is contained within, while I am hanging out with the children, making dinner or running errands. Except for the occasional set of puffy eyes, you would never know if you saw me out with the kiddos.
Julie had a meltdown while Palliative Care was here. It started off as she needed my help playing Webkinz every 60 seconds but then it progressed to where she was crying over tasks on that game I know she can complete. I had to send her up to her room so should could have a good flipout and Annie (the social worker from Palliative Care) suggested that Julie was feeling upset and was simply seeking my attention. It never dawned on me before but it makes complete sense.
Boston WONT STOP asking (well beyond the point of obsessing) about a Buzz Lightyear toy so I caved a few days ago and bought it on amazon. It comes today. Hopefully he will be satisfied for a few days and will stop following me around in misery while carrying his HTML printout of the toy and description. Fingers crossed because that sucks the life out of me. Maybe he is seeking my attention as well? I kind of think that he is just being a regular 2 year old and DRIVING ME CRAZY! 
The boys have their birthdays coming up and I am trying to decide whether to do a “movie theatre party” at the new cinema that opened up at the Hingham Shipyard or to have a home-grown party and invite everyone. If I can have my Mom on Rachel duty (which I am sure she is reading right now and saying “yes, of course”) I am leading toward the joint, home-party. Any suggestions?
I have been really, unimaginably lucky to have found the BDSRA and all of the kind parents that belong. The amount of information I have received from them has been tremendously helpful and the only saving grace of this shit diagnosis that I still have a hard time accepting for my Rachel.
If you’re reading my blog, leave a comment and say hello. If you want to trade blog links, be sure to let me know.
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.
Blog links already traded in this case, but hi anyway. Just checking in. Good luck with all the appointments. I know from growing up with a special needs brother that there are always a ton of those to be had. Let us know what happens! *hugs*
Hey Kat-I am reading every day and most of the time don’t post because I just don’t have any words, but know that I am thinking about you often.
I’m reading! I check for new stuff daily. I hope things start to look up for YOU soon. ((hugs)) from the Simonte’s.
Hope today is going well! ((hug))
I read every day too. Your whole family are constantly in my thoughts and prayers. I often have no adequate words.
wanted to let you know I’m still reading and checking in on you.
I really don’t know what to say. I am so sorry you are going through this. I just want you to know you and your family are in my thoughts.
You know I stalk you on a regular basis
Gotta keep tabs on my future wife. Hugs as always!
It cracks me up that Boston was carrying around a HTML printout. That is really pathetic. Sounds like something my little guy would do. Hope the Buzz keeps him happy for a while.
As always hugs!
Xina
I’m reading & following along as well. Your whole family has been in my thoughts.
I hope the PCA really helps you and Rachel have calmer started to the day. Also, going to a school that understands her issues will probably make each day less scary too.
Here and following regularly!
Lots of love. xx