→BATTEN DISEASE

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 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)

Rachel completed her first week at Massachusetts Hospital School.  Tuesday was a long admission process and she stayed at school until Friday night.  The school receives students (patients) on Sunday afternoon and sends the kids home on Friday afternoon.  The activities they offer to their student population cannot be compared at any other facility that I have ever heard of (swimming, horseback riding, water sports, bowling, cooking, music, PT, OT, ST, TVI and the list goes on… WOW!).  Over 90% of students are in wheelchairs and Rachel attended summer camp at the school. The first week was hard on Rachel but Meredith and I visited her Thursday night for the monthly themed dinner (event) to check up on her and help her feel more grounded. As difficult as it was on her with her blindness and dementia, she did not get upset when I put her on the van today (Sunday) to return to school. Rachel has a 1:1 person with her from the start of school until 9pm and it turns out that Gina (her 1:1 from public school) has been assigned to work with Rachel during the school week!! This made for a much easier transition on Rachel(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

For the 4th day of spirit week at school (Olympic Day), I sent her in as a Gold Medalist Snowboard (complete with board and all). She won a prize and $5 to the book fair.  The smile on her face was priceless!

I am taking a few days off from work this week to celebrate the holiday with my beautiful children. Today I am working efficiently to finish off the last work related things so I can enjoy a few days of relaxation. My children are bursting with anticipation with the upcoming gift opening and I suppose I didn’t help keep their anxiety at bay when I wrapped their gifts last night. I love this time of year. The music, the decorations, the baking and the general feeling of togetherness that most people seem to share because we are all kind of in sync. We are all hustling and bustling to finish off our shopping, about to spend time with family we don’t see very often (willingly and unwillingly) and all awaiting “the big day.” I like feeling in touch with people I don’t know, the extra smiles, the friendly “Happy Holidays” so as not to offend someone if they don’t celebrate Christmas. I really like the whole thing and there isn’t a thing I want “from Santa.” I always find a few things to put under the tree to keep my children happy but honestly there isn’t a thing I could(read the rest)

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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