Todd and I took the kids to Rainbow Lakes outside of Nederland, Colorado the weekend before Labor Day Weekend. Rachel’s urn in tow. These are the pictures Todd took. ❤️
Took the kids camping a week or two ago and had a great time! Looking forward to getting out there and doing more primitive camping. We had no problems eating vegan and were all quite cozy. Julie slept in my jeep, the boys slept in a 2 man tent and Todd and I slept on an air mattress in my Eureka Tent (Colorado made).
Julie even took her first turn behind the steering wheel!
The kids are totally stoked with the Halloween decorations adorning the front yard in our little rented home. It has been nearly a year since I broke my ankle. A whole year of living in this house. Another year of Batten Disease taking a stronger hold of my child. A year of Julie getting taller and more mature. A year of my boys fighting, getting better at video games and learning how to cook.
I love this time of year. Its bittersweet but still my favorite.
Rachel decided it was time. She was ready to hold “Rosie” the Tarantula that lives at the Butterfly Pavilion in Westminster, Colorado. They have dozens of Rosies to swap in and out throughout a typical day and this Rosie was presumed to be about 10 years old. Continue reading “Rachel conquers her fear of Spiders!” »
This weekend I was determined to get the kids out of the house. I did some googling and asking around to the very limited number of parents I know in Denver and came up with Washington Park. I must sound like a newbie because I refuse to call it “WashPark.” 🙂 It was a bit like Boston Common but without the giant buildings surrounding it and there we no “duck boats”. WashPark is situated in the middle of an upscale neighborhood with streets wide enough for me to “bang a u-ey.” I don’t like to push the Rachel and her wheelchair across any street with 3 kids in tow. Continue reading “Washington Park – We left the house!” »
My dear friends from Boston came out to visit me. Gina had been booked to fly out for a month and when I arrived at the airport I found out that she brought Mary as a surprise! Continue reading “Pictures from Mary & Gina’s Visit” »
I have to say that I was really impressed. I’ve been a lot of places and seen a lot of things (events, attractions, freak shows) and the rodeo really blew me away. I’ve seen clips of bull riding in my time but nothing really prepared me with the sheer force that the bull riders are flung back at. No way in HELL I’d let my kids do it. I took a bunch of pictures, wish I had taken some video. Continue reading “2015 National Western Stock Show & Rodeo” »
Its been really cold in Colorado for the last few days it started Monday the 11 November 2014. My Granny was coming from Boston and it was Zero visibility and Zero degrees it was hard for my mom aka creator of this web site to drive there was alot of accidents on the way to to the airport we found 75 UPS TRUCKS!!!!! The next day was Veterans day and the snow was still falling the temperature was 11 degrees at the highest point of the day. On the day granny came we had a chicken dinner. Today it is Thursday and it is very cold but my mother took us to Savers and we got a lot of good stuff. The best thing in my opinion is a VCR player we bought.
Tonight is still very cold and icy.
This is the last couple of hours where my boys are technically both 8. Today is London’s 9th birthday and on September 30th Boston turned 8. A gift that I mentally decided to give the boys was being on my phone less. Facebook, while fun, is a huge distraction for me. My iPhone takes pictures, easily, but doesn’t provide me with the quality I’d like to archive long-term.
I have a really nice camera which I splurged on but haven’t really used it. It is pretty stupid. I have 4 beautiful children and a gorgeous jeep. The season is autumn and the leaves are gorgeous.
So this afternoon I handed the boys specific colored shirts to contrast with each other but also to celebrate the season. I like the fall, I think just about everyone I know would pick this as their favorite season.
New England definitely has prettier foliage than Colorado but it is still beautiful here. I haven’t spent an Autumn in Colorado since 2005 when London was born at our home in Colorado Springs.
Here are my “Irish Twins.” London is wearing a burnt orange waffle shirt and Boston is, well, Boston. Boston always needs a haircut or he looks like he has just been cured of lice. Love my boys.
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.
Yesterday, aka Field Trip day, we went to the Butterfly Pavilion in Westminster, Colorado. It cost $29 for 1 adult and 3 children for admission, a fact that I will include in my blog entries about our field trips. Its important to know how much things cost, right?
We had a good time, mostly. London wasn’t entirely thrilled with all of the noise when the school bus of kids arrived, but such is life.
We learned about Rainforests and how they produce so much of our food. We got to watch a colony of bees fly in and out (and are tracked how often they enter). It was amazing to see the bees that were leaving get the bottom of the plastic tunnel, the priority spot and the bees that were coming back in did everything they could to stay at the top.
We got to hold Rosie the tarantula. I honestly didn’t think I would be able to because like most people, spiders freak me out. I held her twice and Julie and Boston held her a lot. London wanted to hold her, but didn’t (maybe next time).
They had a small touch tank and we got to “pet” 2 different starfish that definitely didn’t come from the northeastern part of the atlantic ocean. In the second touch tank were horseshoe and hermit crabs. I’ve been pinched by the hermit crab when living in New England, I left that one alone.
The Pavillion itself was an indoor yet very much outdoor simulated rainforest holding butterflies of all shapes and sizes. There was a wall, inside a case, that had multiple chrysalis held up by a tiny glue dot and you can literally watch butterflies hatch. Once they hatch and are ready to fly, the new butterflies are released inside.
The place was super cool. They also had a maze with a scavenger hunt which we all took turns with finding the different butterflies and spiders.
I just moved to Colorado from hull Massachusetts . These are some likes and dislikes. The first thing I like about Colorado is the beautiful Rocky Mountains. The only thing that I don’t like is I miss my three friends Kaleigh Chloe and Duncan. The next thing I like about Colorado is how the humidity doesn’t bother me anymore.
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: