Almost a month ago I posted a request asking folks to send musical birthday cards for Rachel’s 15th birthday. Our family has experienced the power of social media and the internet. Last fall I posted a “Go Fund Me” seeking donations to help me purchase a wheelchair van as Batten Disease is taking Rachel’s ability to walk. I was able to buy “Cartman” the low mileage wheelchair van at a very low price within a few weeks. People are incredibly generous and kind. Continue reading “And the birthday cards for Rachel came flooding in” »
I’ve been wanting to write this post for months but have had such a hard time coming up with the right words. This is a problem I never seem to have but it has been so hard for me because I’m too close to the problem. I’m not sure that makes sense, my head feels crazy every weekend and sometimes I want to sleep it away. Continue reading “Dreading the weekends” »
We’ve been in Boston (well, Hull Massachusetts overlooking Nantasket Beach) since Sunday and have seen so many people we love and miss. Friends and family. People who have seen Rachel decline since 2009 and were able to hide their sadness after seeing her decline of 9 months (since we moved) better than I expected. I have only cried once since being here, maybe twice. Not bad, all things considered. Continue reading “Hull, Massachusetts trip during Easter 2015” »
I’ve asked my kiddos to write today about what they are thankful for. This is a common theme in America in November that I think is total crap. Many of us are selfish and take life and health and love for granted throughout the year.
Boston and London realized last night that there are website statistics which compare their posts in views and comments. They asked me to assign them a topic which will hopefully get them the most post views so I had them jump on the “Thankful for” posts.
I was thankful earlier today for having the common sense to record this video on our make a wish trip back in 2009. Watching it feels like I am being split open and all of the happy is being shopped vac’d out of me but I’m glad to be able to see what my girl was like before this fucking disease activated inside of her.
Rachel has been very difficult the past couple of days thanks to Batten Disease. Constantly yelling, needing, demanding you come to her *NOW* and yesterday and Friday evening she was requesting to go to the bathroom several times. Usually she only goes to the bathroom about 4 times a day (sometimes less). Her walking is terrible and I am literally holding her up to make it the ten steps to the toilet.
I’m at the point where I’m ready for her to start using her absorbent briefs. I think that would be safer for her… and apparently my back. There was no big event yesterday where I “pulled something” – but I woke up in excruciating pain that is not going away.
Rachel was so upset last night. She is still asleep now. Friday and Saturday night she didn’t go to bed until midnight. Saturday night she had her meds a 6:15. I need to get some rescue medication for nights when she is extremely emotional, sad, angry, ADD, and all over the place. :/
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.
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:
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. Continue reading “On that note” »
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.