Tag: batten disease

My last post was about following my gut and taking Rachel out of her residential school, which I did.  Tonight I will briefly write about the last few weeks and the immediate future.

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(read the rest)

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: http://www.molst-ma.org/sites/molst-ma.org/files/MOLST%20Form%20and%20Instructions%208.10.13%20FINAL.pdf 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(read the rest)

[dropcap] THE ROAD RACE  IS BACK!!! [/dropcap] Last week I decided (after some gentle nudging from a few people that I love as much as the sun loves the moon) to hold a second road race for Batten Disease Research. The third Team Rachel Race 4 A Cure is being held on May 18th (which happens to be my Rachel’s 14th birthday) in Hull, Mass. We are looking for everyone to chip in either as a walker, runner, volunteer, sponsor or raffle donor. Please get in touch with me if you can help at team@teamrachel.com – click here for more information on the road race! We’ve raised a lot of money and donated it all to research and would love to see several thousands more!  I know this is a rare disease and it seems hopeless but research into Batten Disease also helps other brain / neurological diseases like Alzheimers, Parkinsons, Multiple Sclerosis, Huntingtons and so many other rarer diseases which you hopefully never have to learn about. So excited! Road Race meetings are being held every Wednesday night at my house 8pm starting Wed, March  26th!  <3

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(read the rest)

I feel like I have turned into a caterpillar these last few weeks. I feel silly using the caterpillar to butterfly analogy. Like, please don’t bring it up to my face, but it’s such a valid feeling for me. The last few years of my life have focused on taking care of my oldest daughter (first) and her younger siblings (second). I have tried to take care of my husband but mostly gave that job up except for a bout of vertigo this year. I have sat at the very bottom of the list for a very long time. I think that this is a common practice, for women (especially mothers) take care of everyone else before themselves. It’s time to re-evaluate things and put myself at the top of the list. Last week London hit his head really hard and was unable to remember the last few weeks and every 15 seconds was asking me the same questions over and over again.  What is today?  Why am I not at school? Where is Dad? What happened? Why am I bleeding? He cut his lip open and was bleeding and the questions didn’t stop coming and his short term memory(read the rest)

I gave up working on the steps I am taking to a somewhat normal life during the last 7 or 8 days. This past week has been a blur and has felt so strange, very not normal. The only two feelings that keep coming to mind are: 1. I feel like I have left my baby in the maternity ward and I am home. I should be with her. It is painfully quiet at night without her yelling for me. The first night I had the wind taken from my lungs when I snuck past her bed (in the dining room) to grab a glass of water before I went to sleep. I looked over toward her bed on my way into the kitchen and saw she wasn’t there. The resulting feeling was terrible. That feeling was actually worse than how I felt when I had unpacked her stuff and settled into her new room and walked away from her hospital cottage with an empty suitcase. AN EMPTY SUITCASE. 2. This is similar to how I will feel when she is gone forever. I’m sure friends who have lost children will tell me I have no idea what I am(read the rest)

Friends from all over the country wore their jeans to support Rachel for National Rare Disease Day. The idea is that you wear jeans to show support of rare genetic diseases because the disease is in our genes. I asked all of my friends and family (well, any of them on facebook) to tell at least 5 people about Batten Disease and my Rachel. Here are the ladies and gents who wore jeans for genes! BECCA NICOLE MEREDITH MELISSA KERRIE KATIE Me (Rachel’s Mom) Heather Cyrille Chris Tami The Brightson Family Susie Apryl Kelly

It’s a different kind of Christmas this year.  There are 5 stockings hung, the house is absent one husband and has gained one puppy.  Rachel’s health is continuing to decline on a continual basis and my other three kids are aware of some of the harsh realities of our life, more than last year.  Rachel’s speech is becoming harder to understand and she is mostly in a wheelchair or on the floor crawling but I have her walk to the bathroom and to her wheelchair on the front porch.  Often when she is in an angry mood she gets upset easily and screams like a toddler when her needs aren’t immediately met, other times she will sit content for hours listening to her favorite shows and movies. Her decline has been hard for me because I have always liked to get out of the house and DO stuff.  We’ve spent more time at home this past year than we have ever done before and I find it depressing.  I’ve avoided the thought of obtaining a wheelchair van because I’m able to lift her as she still has some lower body strength (although it is considerably weaker since this time last(read the rest)

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