Tag: (Team) Rachel & Batten Disease

Today is like any other day.  Well, today is London’s 9th birthday and I let Rachel stay home today to hang out with all of us and simply relax.  I can’t believe my children are 14, 10, 9 and 8.  Seems like a happy day, which it is, but it is also a very sad day for me. This sadness I keep inside because my children don’t need to have a sad mother.    I have been avoiding this for a long time but today… Today I took delivery on Rachel’s hospital bed. She’s had a hospital bed at my Mom’s house and really quite enjoyed it.  Using the controllers to move her head and legs up and down. I don’t see this bed as a fun, good time.  I see this  bed as death coming closer to my door. I hate this disease. I hate this bed. Surreal to have a child’s stuffed animals on a hospital bed in OUR home.  I don’t like it. She is all happy because I made her ramen for lunch.  Ramen slides down her throat which has an epiglottis that likes to forget to close from time to time. Rachel listening to Disney(read the rest)

Today at her special needs school in Lakewood, Colorado, Rachel participated in bike day. Unable to see and barely able to walk with tremendous assistance, they brought adaptive bicycle equipment for her to enjoy. She has been on the patch for 2 days which will hopefully decrease her saliva production because her terrible choking cough has been getting worse as saliva creeps its way past her faulty epiglottis. She also had a grand mal seizure tonight at respite. Here are two pictures her principal emailed me tonight:

Thank you so much to all of the GoFundMe donations toward Rachel’s van. I found a van only a few minutes away with low mileage and a great price. I am still working on raising a bit more money to purchase a fold up hoyer lift. Meet Cartman:  

The weeks after the road race have been super busy for Rachel, me and her siblings.  Rachel finished up her home schooling with several weeks of seeing Anneliese the awesome TVI (Teacher of the Visually Impaired) at our home and baking.  Once school was out I loaded up the kids, pets and the Airstream and we drove out to Colorado.  Rachel had a hard time over the 4 day journey as it was very disorienting for her but once we arrived she has been doing much better.  I sent her IEP (education plan) to the school district here and they started her in summer school the Monday after we got here.  She likes going to school as much as she ever has (says she hates it but has a good time when she is there).  A huge difference for me was putting her on a big yellow school bus when I am used to putting her on a 13 passenger van.

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)

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