I’m watching Rachel stuff herself a few feet from me with some pancake donut holes that you can buy at Trader Joes. It’s a Tuesday morning at 8:40 and my triplets (my other three children who are unaffected by this disease (I call them the triplets) are all at school. A little over a month ago I sent Rachel off to a new residential school and we lasted a month. They offer some amazing activities there for kids who have a wide range of disabilities and I highly recommend the place.
But the place just wasn’t for us.
She’s home for now while we figure out the next step. If the decision were hers she would return to the Middle School she was attending but we have to consider another option as well before she (hopefully) gets to return to her old school. She is sitting in her recliner under an electric blanket and listening to Sesame Street on Sprouts. Happy as a clam. I followed my gut and I’m happy about my decision to bring her home.
My favorite part about her being home? She is walking up and down the stairs and sleeping in her old bunk bed in her old room with her little sister, Julie.Read More
Its 10:51 on Monday night and I haven’t been able to shake how much I miss Rachel since I shipped her off on the van yesterday afternoon at 4:00pm. I pushed for her to go to this school (she has never wanted to leave home) and now I can’t stop missing her.
I have some big decisions to make. I have an appointment tomorrow with the Pediatrician on staff at her new school to go over the MOLST form. Grab a box of tissues and imagine filling it out for your formerly healthy baby girl:
I want to pick her up and bring her home. The last day has been the hardest since she left. I left a voicemail for school at 7:20 tonight for her to call me but no luck. I will definitely be bumping into her tomorrow. She drives me crazy but I love the shit out of her. I usually get upset and just want my healthy daughter back but the last 48 hours has kind of been me realizing that I will take any version of her because sooner rather than later there will be NO version of her to have back.
This disease is relentless.
Rachel’s new school is full of people just like me and just like you with feelings, hopes, laughs and tears. Young people who have been admitted to the school because they were born with (most) a disability or acquired one along the way like my Rachel. I know that some of the kids there will probably attend the school until age 22 and will transition into the mainstream world. I also know that due to privacy the staff is unable to divulge medical information to the other children about Rachel or her fate. When I am visiting, different kids will strike up a conversation and I have started to tell them things about Rachel. That she was totally normal and healthy, reminding them (especially the boys) that she is only 13, that she is blind.
Last night I told two of the other students that Rachel is terminal and the name of her disease (Batten Disease) so that they could read more about Rachel.
There is a boy at her school who is truly amazing. He can maneuver his iPad with his feet faster than I can with my fingers. He took a liking to Rachel over the summer when she was in summer camp at her new school and I have reminded him, specifically, that she is only 13 and a MINOR. :-) Last night at the theme dinner I told him about her disease and that she is terminal. I also told him about her website that you are reading right now.
I think its only fair that the kids who care about her know that the Rachel you see today is not the Rachel that will be in a few years (and not the Rachel that I knew when a few years ago). It is heartbreaking, but only fair to let the other students who are cognitively capable of grasping her disease know what is to come.
Reality sucks but I’d rather be a realist. Living an honest, pragmatic life has made living with this stupid disease much more bearable for me. The picture is from dinner last night. I had to threaten her to get a smile because she was so busy letting me stuff her face with mashed potatoes, gravy and chicken. <3Read More
Rachel has finished her first full week at school and is sitting in her lazy boy chair listening to Danny Phantom. She likes a TV show marathon (who doesn’t?). She definitely likes school but a large portion of her hates it because she misses the familiarity of knowing where things are, knowing who the people are, being aware of her surroundings. As she has more time under her belt and the disease takes more of her mind away, I feel confident that she will learn to love Mass Hospital School as much as possible.
I feel guilty that I have enjoyed the break from her and the care of her. I am actually looking forward to later today when the van picks her and her stuff up for another week. The thought of all of this killed me but the physical care of her and missing out on so many things because of not being able to go anywhere combined with the depression of staying home all the time was really killing me.
I love my Rachel and I feel that this place will give her better care than I am able to now. Bathing her is becoming so unsafe for her because she doesn’t have the quadricep strength to push herself up safely and consistently. I have really enjoyed spending time with my other kids without the incessant noise and the new freedom to go places and do things.
I feel good about my choice to send her to the new residential school. Guilty but very good. Batten Disease sucks but life does go on for the rest of us and I have to keep that in mind while making sure she is well taken care of. I love my Rachel. <3
Here is a picture of our mid-week visit last week with her sister Juliebean. Granny came as well and Rachel loved seeing us. If you want to visit her send me an email at email@example.com and I will let them know to expect you. Visiting hours is 4-8pm Monday – Thursday.
Now if we could just get this horrible breakthrough bleeding that has arrived two weekends in a row under control, that would be great!!!!!
Rachel and JuliebeanRead More
My apologies for not updating this website in months. I’ve either posted bits and pieces about how things are going on facebook or I have completely fallen off the face of the earth. Some days I would really like to just disappear and not have to watch as this disease slowly kills my daughter. So much of who Rachel is gone but I saw a glimpse of my “old” daughter today.
Tami (the lady who worked with Rachel on a 1 to 1 basis in elementary school) stopped by with her beautiful daughter Becca today and Rachel was bringing up things that we had forgotten. Rachel speech is terrible, her extremities are always freezing yet she lacks the sensation of them being cold and she can barely walk (and for those who are late to this blog she is also completely blind yet born totally healthy). She has become a danger to herself and those who work with her because she is so unsteady on her feet. If 190 pounds comes crashing down due to a motor planning or balance faltering moment, she can easily break a leg (and bleed out internally (hypovolemia)).
This is not a pretty picture and I will be completely honest (something I am known for, they tell me):
I have tapped out.
Rachel, my beautiful Rachel, will be starting at a hospital school about 30 minutes from our house in 8 days. She will live there during the week and come home on the weekends. I know it won’t be long before the weekend trips home will become too difficult.
Batten disease is so hard on myself and especially my other 3 children. As much as Rachel didn’t ask to be born with a rare, terminal brain disease, my other 3 children didn’t ask for Batten Disease to be front and center in their childhoods.
To listen to their sister scream, yell, demand and generally wreak emotional havoc on their Mom is really hard on them. A lot of her behaviors that I deal with are well worn grooves that have become deep over time. Things that Rachel does with me, at home, are behaviors that are much, much less with others (especially new people). The yelling, the death threats, the hitting, the everything. Its all a product of a little girl who’s brain is dying. Things got much worse when she started her period.
I love Rachel so much and wish there was something more that I could do but if you have to pick between your sanity and the emotional health of your children who will hopefully live long happy, healthy lives or a very ill and terminal daughter…
I had to choose. I HAD TO.
And I have chosen myself and healthy children.
And it kills me.
The school that she is going to be living at is awesome. She spent last summer there as a day camper and had THE BEST time.
Like legit. The best time (a few iPhone pics are below).
They have every piece of equipment you can possibly imagine to safely take care of Rachel. They have activities adapted to kids (under the age of 22) that you have to see to believe.. They swim, they ride horses, they do awesome crafts, they cook, they are a community. She has fought me on wanting to go, not wanting to leave home but I’ve worked the idea into her head with the help of my Mom. I know the transition will be hard on her I believe that this is the absolute best place for her to go.
As a Mom you want to protect your kids, see them grow and develop and harvest a passion for life. I’ve done so much with her yet I wish I could do so much more. I’ve been told that this transition will be harder on me than on her. And I believe it.
My other 3 kids need me and Rachel needs to be in a place that can physically manage her and have enough people in rotation to give her the best years of the rest of her life. This is the hardest thing I will ever do.
I wish it didn’t have to be this way.
I love her so much.
Here are some pictures of Rachel taken by her awesome person that was with her during middle school (Gina). Gina has taken a job at the same school Rachel is moving into and is helping Rachel (and me) bridge over into this new way of life.
It’s 4am. I need sleep. Vacation week is upon me and this is my last week with her.