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 Junior.
Please someone wake us up from this nightmare. All of the parents of dying kids are living in a nightmare. Nightmares are for night and you’re supposed to wake up from them in the morning being grateful that it wasn’t real.
Except this is real.Read More
So I finally did it. I have been thinking about it and after it was suggested again and again (and again), I created an online, “crown funding” campaign to help me raise the money I need to trade in our older Navigator and get a wheelchair van that Rachel can ride in… in her wheelchair. My pride, as a person, has vanished but I know it was the right thing to do. Sometimes I hate doing the right thing. Over $1000.00 towards the van in just a few hours. Thank you for sharing and donating. Please continue to share the link because these vans, unless you want a retired airport shuttle bus with 250,000 miles, are expensive! On behalf of my Rachel who is losing her walking legs faster than I imagined, and my other 3 kids who still like to go places like NORMAL kids… thank you. And thank you from me. SEE RACHEL’S VAN CAMPAIGNRead More
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
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!
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
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
My apologies for not updating this website in months. I’ve either posted bits and pieces about how things are going on facebook or I have completely fallen off the face of the earth. Some days I would really like to just disappear and not have to watch as this disease slowly kills my daughter. So much of who Rachel is gone but I saw a glimpse of my “old” daughter today.
Tami (the lady who worked with Rachel on a 1 to 1 basis in elementary school) stopped by with her beautiful daughter Becca today and Rachel was bringing up things that we had forgotten. Rachel speech is terrible, her extremities are always freezing yet she lacks the sensation of them being cold and she can barely walk (and for those who are late to this blog she is also completely blind yet born totally healthy). She has become a danger to herself and those who work with her because she is so unsteady on her feet. If 190 pounds comes crashing down due to a motor planning or balance faltering moment, she can easily break a leg (and bleed out internally (hypovolemia)).
This is not a pretty picture and I will be completely honest (something I am known for, they tell me):
I have tapped out.
Rachel, my beautiful Rachel, will be starting at a hospital school about 30 minutes from our house in 8 days. She will live there during the week and come home on the weekends. I know it won’t be long before the weekend trips home will become too difficult.
Batten disease is so hard on myself and especially my other 3 children. As much as Rachel didn’t ask to be born with a rare, terminal brain disease, my other 3 children didn’t ask for Batten Disease to be front and center in their childhoods.
To listen to their sister scream, yell, demand and generally wreak emotional havoc on their Mom is really hard on them. A lot of her behaviors that I deal with are well worn grooves that have become deep over time. Things that Rachel does with me, at home, are behaviors that are much, much less with others (especially new people). The yelling, the death threats, the hitting, the everything. Its all a product of a little girl who’s brain is dying. Things got much worse when she started her period.
I love Rachel so much and wish there was something more that I could do but if you have to pick between your sanity and the emotional health of your children who will hopefully live long happy, healthy lives or a very ill and terminal daughter…
I had to choose. I HAD TO.
And I have chosen myself and healthy children.
And it kills me.
The school that she is going to be living at is awesome. She spent last summer there as a day camper and had THE BEST time.
Like legit. The best time (a few iPhone pics are below).
They have every piece of equipment you can possibly imagine to safely take care of Rachel. They have activities adapted to kids (under the age of 22) that you have to see to believe.. They swim, they ride horses, they do awesome crafts, they cook, they are a community. She has fought me on wanting to go, not wanting to leave home but I’ve worked the idea into her head with the help of my Mom. I know the transition will be hard on her I believe that this is the absolute best place for her to go.
As a Mom you want to protect your kids, see them grow and develop and harvest a passion for life. I’ve done so much with her yet I wish I could do so much more. I’ve been told that this transition will be harder on me than on her. And I believe it.
My other 3 kids need me and Rachel needs to be in a place that can physically manage her and have enough people in rotation to give her the best years of the rest of her life. This is the hardest thing I will ever do.
I wish it didn’t have to be this way.
I love her so much.
Here are some pictures of Rachel taken by her awesome person that was with her during middle school (Gina). Gina has taken a job at the same school Rachel is moving into and is helping Rachel (and me) bridge over into this new way of life.
It’s 4am. I need sleep. Vacation week is upon me and this is my last week with her.
Hello folks. I just wanted to officially announce on Rachel’s website that we won’t be holding the race this year. Between Rachel’s worsening condition and our family dynamic changing I just don’t have the energy or time to invest in the race this year. My number one priority in life is to make sure all 4 of my children are taken care of to my best ability.
I know lots of people are bummed about this but in my heart I know its the right thing to do.
– KatRead More
Between the 428 registered runners and walkers plus all of the gracious volunteers and Aquarion Water who were passing out reusable and recyclable water bottles, we had over 450 people! About an hour after the race, costume contest and raffle was over it started to rain. I couldn’t be more thankful to Hurricane Sandy for holding out and not ruining Rachel’s special day.
We have over $22,000 in the bank that we are going to donate to research once the donations stop flowing in! Thank you so much to our WONDERFUL friends and family and the community of Hull, Massachusetts for supporting our second race. It was an incredible day!Read More
We are currently in Colorado Springs, staying just one more night before we head west. Colorado has been riddled with multiple forest fires because of the extreme heat and lack of rain, dry lightning and a suspected arsonist. We were staying at the beautiful Garden of the Gods Campground but because of the high heat and the eventual smoke and nearby evacuations I moved the kids and I to a hotel in the eastern part of Colorado Springs (near Peterson Air Force Base).
Today we are having lunch with some of my favorite people then we’ll come back here and do some swimming and tonight we are going to a Heather’s house of pets (haha Heather, I love you) and a simple, PASTA dinner. Pasta is one thing my kids really miss on the road.
Tomorrow morning, before the roosters come out to crow, we are driving up through Denver, through Wyoming and staying the night in Utah. After one night in Utah we are driving to Eureka California and spending two nights there. We can’t wait to get to California, visit the pacific ocean and see / feel the Redwood Forest. That will effectively cross 3 more items off of our bucket list…Read More