This year Rachel dressed up as a pirate, Julie was a midwife, London was Captain America and Boston Iron Man. We had a great day and was able to attend a few high school sponsored trick-or-treating events and also went to Rachel’s school for a halloween parade.

rachel happily asleep.

This picture was taken a few months ago.  I was daydreaming of happier days. So this morning I woke up and I now know what it means when someone would say “my back is out.”  The center portion of my back has died the black death. 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.

hospital_bed_stuffed_animals

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.

rachel_bike

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:

Despite passing her swallow study in May, Rachel’s body continues to fail her because of this wretched disease.  Over the last 3-4 months I have noticed that she has been coughing a lot and after researching the effect of neurological disease on swallowing, observing Rachel and watching this become a frequent occurrence I decided to take action. The hope by starting Rachel on Scopolamine she will decrease how much saliva she is producing and will choke less.  This medication is administered through the skin, kind of like a motion sickness dot behind the ear. Today is day 2 and I haven’t seen much (if any of an improvement) but hopefully I’ll see something by the weekend.

10672340_1487625561502032_265371296205220144_n

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 is getting worse, much more difficult to physically manage and cognitively she can’t be held accountable for half of the things she does.

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. [button link=”http://www.gofundme.com/deamec/” type=”big” color=”red” newwindow=”yes”] SEE RACHEL’S VAN CAMPAIGN[/button]

After a long day of doing Mom stuff, Mom of dying kid stuff and working on websites, I came home to this. A ramp into the airstream for Rachel, built by my friend Christopher. Good friends are hard to come by and I have been very lucky in the friend department.