I spent a lot of time in the car yesterday driving. Driving to see the kids new school (which is on the other side of Denver) driving Rachel to respite (and back. Twice.) and running a bunch of errands.
When I got home from running my errands I found that my friend’s husband, who will probably kick my ass for not referring to him as my friend (which he totally is but we don’t admit it, or hug lol), had built Rachel this:
My parents, with the help of my brother, built something similar for Rachel back in Massachusetts so Rachel could enter my parents home. I never expressed my thanks because it’s too painful to realize that that is her future. Yes it is inevitable that she is completely losing the ability to walk but sometimes I just can’t face it.
So for what its worth: Thank youRead More
So my name is Kat (Kate) and I have four children. My oldest is Rachel. She is 14, blind, developmentally disabled and can’t eat, toilet, bathe or do very much on her own. She is unable to maintain her temperature on her own and is having a harder time walking and will yell multiple times throughout the day until you figure out what she wants to get her needs met.
To say she is a handful, is the understatement of the fucking century.
She was healthy. Perfect. Sweet. Sighted, Never a brilliant child but certainly normal for her age (well, medically speaking, she was “within normal limits”).
She and I have been on this journey together for 14 years. It has been a rough road. When I was pregnant with her I lost my shit, mentally, and although I don’t often admit this, I was induced 6 weeks early because I didn’t care whether either or she or I lived…. or died.
Very dark days back in 2000.
When she started to show signs that there might be something wrong I had three mains sources of guilt that I hated myself for. Daily.
1. I lightly smoked when I was pregnant with her.
2. Her biological father made zero effort to be in her life either emotionally or financially (he has been consistent like that for nearly the entirety of her life. Apparently he thought they would have a relationship when she grew up. He is an idiot who went on to have two beautiful and perfectly healthy daughters).
3. I remarried and had 3 more children “back to back” and for a while chalked up her difficulties to some kind of rebellion to her younger siblings.
None of those three things actually matter. It took me a long time to get through those. July 2009 I found out she had Juvenile Batten Disease and was dying.
The whole process has sucked for her. She has lost so much, we have lost our normal lives. She is losing her ability to walk and talk and has a very hard time with bathing and toileting. Both activities she and I dread everyday. Because of accidents and period issues she has gone from underwear to wearing adult pull-ups.
I see other parents with children who have the same disease and I compare. I never compare with the parents who have infantile or late infantile batten disease because they truly are very different diseases that have their own set of problems.
I see other parents who pray for a miracle cure and I steer clear of them because I know that the miracle isn’t coming.
I see other parents who will keep their child alive for as long as they possibly can and while I support their level of intervention, I know that isn’t what I want for my daughter.
I see my face when I am helping her into the bathroom, I feel my arms ripping to safely lower her nearing 200 pound body into the bath tub. I feel my frustration level rise when I have to hear her yell yet again because she is upset.
She hates being bathed very much like a cat does. The getting wet, the getting in and out of the bath, the feeling cold while she is dressed, the hair brushing. I could write a whole paragraph on how much she hates having her teeth brushed. I don’t blame her (close your eyes and have someone else brush your teeth just once) but it has to be done even though she and I would rather skip it.
I see the other parents of Batten children who have the same form as Rachel and I feel like the other kids are happier. Rachel has been consistently unhappy for a long time. She loves my mother back in Boston when they spend time together and she has moments of happiness and giggling but for the most part she is either yelling or unhappy. I can’t imagine what it is like to rely on another person to do everything. To eat, to pee, to watch a tv show, to be washed. But I look back and think of her time with her teacher of the blind, Anneliese. She loved her time with Anneliese. I want the Rachel that appeared when she and Anneliese worked together to bake, to craft and to make music.
I want a happier daughter because I know that will lead to a happier Mom and a happier life. I have employed an external respite facility to have her for a few hours twice a week and she starts school next week.
Now I have to look inside myself, inside my tired body and figure out what I can change to make this happier Rachel happen. I’m open to suggestions because if I can figure this out it will change our lives in so many ways. I know most teenage daughters hate their Moms…. but Rachel, mentally, isn’t a teenager and she certainly didn’t go through puberty and exhibit the “NASTY” that I may have been seeing in my younger daughter entering into “the change.” (Not naming any names. Right, Julie?)
I also need to teach my younger children to have more patience for their sister…. and I must lead by positive example. This is the hardest thing I will ever, ever go through. This is the hardest thing they will go through. Oh hell. I hope this is the hardest thing my other, unaffected children will ever go through. I can’t even think about that.
Taken August 2007. I miss this. This girl is still in my daughter but the disease is taking over. I took Rachel to see a primary care doctor here in Denver and she is willing to treat Rachel both as a person and a person with a neurological disorder. This is a big weight off of my shoulders. As she is still having breakthrough bleeding despite the pill and extra estrogen I decided to try her on the depo shot and so far so good. She weighed 186 at the doctor and I am still getting her in and out of the bath with minimal help from her. As long as I can physically care for her I am keeping her endlessly chatty, yelling, hungry, sometimes irritable self at home (which is still an airstream – so cool).
I hate what this disease is doing. I absolutely hate it. Taking her abilities and making it hard to do things as a single-parent family. I won’t give up but unfortunately, Batten Disease doesn’t give up, either. My arms hurt from my muscles ripping to grow larger as her muscles give out more and more each week. Being built like a brick shit house has its advantages that I never dreamed of.
Rachel was supposed to come to the gun range with me back in Boston several months ago, but the day I had planned to take her she had a seizure. Yesterday we went up to Spring Creek which is just outside of Idaho Springs in Colorado. With the help of multiple, legal gun owners, Rachel was given the opportunity to handle an unloaded rifle and with assistance she was able to shoot it. She loved it! She held it, I balanced it and aimed while she pulled the trigger. Very cool day. There are more pictures of this day on my personal blog www.katwasabi.com
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 have been making her walk everywhere but I let her use the wheelchair to go to school with for her safety. Yesterday she went 4 wheeling which tired her out from having to keep her core balanced. She also went pee in the woods! This morning she slept in until nearly 10am so I know she had a work out. She is definitely losing her ability to walk but I am trying to fight it as much as possible. Soon I will let her sit (she wants to just about always) but for now, while I think its in her best interest she is stuck with me and walking.
Here are a few recent pictures:
Thank you Thank you Thank you! The Cohasset Sports Complex has committed to being Silver Sponsors of Team Rachel Race 4 A Cure. Thank you!
Thank you so much to Clean Harbors for donating $1000 to Team Rachel! They have been so generous to our efforts to raise money for Batten Disease Research and we are so grateful. Thank you!!!! <3Read More
Thank you to Gary Wyrosdic of Wyrosdic Builder Design & Construction for sponsoring Team Rachel Race for A Cure!!! They are returning sponsors of our race and we are so grateful!
Wyrosdic is located in Lynfield, MA and graciously put in ramps to both our front and back door at Rachel’s home.Read More
Thank you to John and Good Geeks for sponsoring the T-Shirts for Team Rachel this year! People love the shirts and they last forever, we appreciate the donation and support of Rachel and Batten Disease Research!
Website: www.goodgeeks.coRead More
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.