Thank you so much to Sue Ann and Mr Divito for sponsoring the road race for another year! We really appreciate your support!
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.
Rachel has been in her wheelchair twice since leaving school. Once to walk to have pizza around the corner and once to come to the park on our street. While at the park Rachel was able to swing in the “disabled people” swing for several minutes and could not have been happier.
Since she has been home I have put our house on the market! As a result of selling the house I moved her bedroom back to the second floor and she is sharing a room with her 10 year old sister, Julie. Rachel’s lower body strength and endurance for walking has dramatically increased. She is happier due to a lack of repeated transitions and having a verbal translator (me) near her at all times.
The school is trying to force the issue and send Rachel to a “Collaborative” school. I have requested, for the time being, pull out services. If Rachel’s Dad accepts her “Collaborative” placement then I will be forced to send her (unless she has diarrhea all of those days of the week), or I have to get a Dr note every 60 days requiring school to bring school to home. Since the house is on the market and the kids and I are moving, I think I am going to go for the homeschool option.
Rachel is happy at home. I am doing just fine with her. This is such a stupid “fight” and one which I am completely unwilling to lose because advocating for Rachel is at the top of my priority list. I know what she wants, I know what she lives and I know what she is trying to say when the words fail her. I guess I am up at bat. I haven’t swung a bat (literally) since high school. Luckily this is a metaphor and I will do my job as her Mom.
In 50 years this won’t matter to anyone. But the next few years mean everything. For Rachel, for me and for her siblings. Standing up for what you know is right for Rachel is the right thing to do.
I shall stand tall and proud and wearing a gas mask because Rachel sure does love to fart. <3Read More
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
For the third year in a row, BJ’s Auto Repair in Norwell Massachusetts generously sponsors Team Rachel’s Race for a Cure! BJ’s Auto is our first sponsor of the year!
Website: http://www.bjsautonorwell.com/Read More
Petrocelli Public Insurance Adjusters are faithful sponsors of Team Rachel Race 4 A Cure and has sponsored all 3 races! This year Tami made sure that Petrocelli was our first road race sponsor. Thank you!!!
Website: http://www.petrocelliadjusters.com/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.
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 firstname.lastname@example.org – 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! <3Read More
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
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 talking about and I respect that but this is a real feeling and it is mine. At some point, long before should ever be possible in a parent’s worst nightmare I will lose my Rachel and my house, her room, her voice will be quiet forever.
I’m holding up incredibly well. She had a rough couple of days and I am sure the nursing staff is sick of seeing my (303) area code number show up but until I feel fully confident I am going to call as often as I think I need to. I did this job for 5 years with her disease and I know every facet of it. They forgot to send home her weekend medications on Friday but I was able to purchase what she needed for the weekend from our locally owned pharmacy. There were a few other issues which they are hopefully working out. A transition this giant can’t be perfect.
I want to lay in the street in front of my house and scream “I just want my baby back” but she is not coming home. This disease has robbed her of so much and none of us will ever be the same.
Letting her go was the hardest thing I have ever done. Admitting that someone else could take care of her better than I could was the strongest thing I have ever done.
I’m exhausted but so glad to be alive and healthy.Read More