Another preschool mom came up to me and said she had read my blog from when we were trying to figure out what was wrong with Rachel through getting her diagnosis and beyond.  And it dawned on me that I really haven’t blogged in a while and I really should.  I have a hard time with some of the comments I get from people when I post on Rachel’s Facebook page or even entries on here.  I’m 33 and I have 4 kids and I rock.  Sometimes people are going to say stuff that rubs me the wrong way and I need to learn to ignore them and remind myself that they’re only trying to be supportive.  Its hard to know what the “right thing” is to say.

So last week I took Rachel in for an EKG at Mass Gen. (an amazing hospital in Boston) and got the results this week that her heart is fine. Her Neuro (Dr Sims) requested that Rach get the EKG to make sure her meds aren’t affecting her heart.  Later on in the same day of her EKG I took her to Spaulding Rehab hospital and got Rachel fitted for her first wheelchair.

I remember a time about 3 years ago when I was hoping and hoping that my child was “just” going blind.  And now we have a wheelchair soon to be added to the family.  It’ll be pink with wheels that we won’t need to maintain and folds up.  Rachel is having a harder time with balance while standing and walking and her knees are turning a bit more inward while she does this shuffle walk.  When I walk with her we go arm in arm or I put my arm around her.  She is also having a harder time with the stairs and getting into the jeep and her school 13 passenger van.

Her appetite is very healthy.  She takes seizure meds 3 times a day, just started on Abilify (an anti-psychotic) in the AM to help with her agression and at night she takes Klonopin and Prozac.  Kids with her type of Batten Disease struggle with sleeping as a part of the disease and dementia so we kind of have to load her up at night to get her to fall asleep (and give her a book on tape to listen to).

This disease sucks and there isn’t a damn thing I can do about it other than just be as supportive of her as possible, make sure her school stuff is appropriate and ever changing and keep on top of her meds.  I also try to remind myself daily that when she tells me for the 5th time in a day that she hates me or that I am a bad mother its just the monster of a disease living inside her head.  I’d give up everything I own to spend a single day with a normal version of my child just to see how badass she would be.  She is amazing in her own way now but I’d love to see a non diseased version of my child.  She’d probably kick my ass and make me make her 10 batches of cookies.  Just a daydream….

I’m also in the process of trying to sort out our living arrangements.  We have a 4 story house (3 sets of stairs inside) and a flight of stairs to get to our front door.  She won’t be able to navigate it forever so I need to come up with a solution to this before it becomes too dangerous.  A ramp? Maybe… but we don’t have the room in our first floor to put a bedroom and handicap accessible toilet with a separate living area from the “normal” kids once her brain becomes more affected.

Between work and the kids my marriage is kind of in the toilet right now but I’m hoping we’ll just hold on until it gets better because we just don’t have the time for each other that we should.  Divorce rates amongst batten families are very high and its a fact I ignore and hope for the best.

Thanks for reading if you’re still reading.   My other  3 kids are healthy and happy, albeit always asking for stuff and eating me out of house and home.  I hear that is what normal is.  :)

Photo:  Last weekend we went to the Drowned Hogs swim (in the Atlantic Ocean) to raise money for our local community service organization that helps families in our town with computer training, legal advice, food, thrift shop and book store.  John, Julie and I swam while my parents and Sue kept the kids.  It was such a cool experience.  Julie went as a vampire, I was the devil and I dressed John up as Redfoo from LMFAO.…