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
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:
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
Today we met up with Heather, Nick and Sky (her boys) at the Omlette Parlour. Great food, even better company!
Gotta love a place that serves up good, vegetarian omlettes! Check it out: http://www.co-spgs-omeletteparlor.com/
Picture: Heather and her son NickRead More