Something I want to write down to remember, to put into words… When Rachel died, a small part of me felt relief. For me. For her. Some people who have a child die after a very long illness don’t feel this way and some won’t admit to feeling this way. But I felt a small piece of relief when she died. I feel incredibly guilty for this feeling. My daughter died after suffering for a long time. It wasn’t, usually, painful for her. But emotionally, she missed out on several good years of life. Batten Disease robbed her of her sight, her ability to walk, function normally, her friends and her childhood. It got harder and harder to take care of her. Listening to her talking incessantly. The diapers that followed. She couldn’t leave the house, she didn’t really want to leave the house. It was really hard on her. Hard on me. Hard on her siblings. There was definitely a strain on our relationship that grew more obvious to me as she got more affected by Batten Disease, as more of her brain cells died. I am sure that part of my feeling of relief comes from the strain on our relationship. This is the part I really want to write down: When I look at Julie and see how smart and awesome she is and reflect on my relationship with Julie (and her brothers) it makes me realize how much this disease really robbed me of. What it robbed Rachel of. When I think of what it would be like to have a healthy, nearly 18 year old daughter, it brings me to my knees. What would it be like? It’s a daydream I try not to have very often because it’s a reality I will never know. One that I would do anything to have. I miss her so much.
They aren’t really triplets but so close in age that I started calling them that, especially after Rachel was diagnosed. It was easier than saying 1, 2, 3 and 4 because I knew at some point “Thing 1,” Rachel wouldn’t be here. And here we are. This is a picture of the kids taken by a photographer at their Homeschool Enrichment Program. I purchased the rights to share this picture on social media and make prints but I think she deserves credit. 🙂 Elizabeth Osberg Photography
Lots of folks still haven’t updated their website with 2018 copyright information as well as added their social media (Facebook, Twitter, Instagram, LinkedIn) to their website. Give me a shout and I can make updates for you… inexpensively. Adding a cute image giving a nod to our London trip for attention. ❤
My Aunts, Uncle, Cousins and their kiddos + dog went to visit my Rachel right before Christmas. They made her a Christmas tree out of roses. She would have like to have touched the tree, very tactile for a blind kid. How I wish things could be different.
Juvenile Batten disease is a fatal, genetic disorder of the central nervous system that begins in childhood. Early symptoms of this disorder appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of vision, motor skills and the abilities to eat and initiate elimination. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is fatal by late teens or early twenties. This was 2004 when she was 4. She was perfect.
Julie had been wanting to try making vegan cupcakes but hadn’t gotten around to it, mainly because she was waiting on me to buy the ingredients. I took a stab at the cake while they were in their homeschooling enrichment classes today and this is quite good. I doubled the recipe and bought frosting off the shelf. I made this into cupcakes, paper lined and baked each pan of 12 at 350 degrees for 23 minutes. Since we are a mile above sea level you may need to adjust the time. Ingredients 1 1/2 cups all-purpose flour (I added a few extra TBS to thicken the mixture up) 1 cup sugar (I used evaporated cane sugar) 1/4 cup cocoa powder 1 teaspoon baking soda 1/2 teaspoon salt 1/3 cup vegetable oil 1 teaspoon vanilla extract 1 teaspoon distilled white vinegar 1 cup water Directions Preheat oven to 350 degrees F (175 degrees C). Lightly grease one 9×5 inch loaf pan. Sift together the flour, sugar, cocoa, baking soda and salt. Add the oil, vanilla, vinegar and water. Mix together until smooth. Pour into prepared pan and bake at 350 degrees F (175 degrees C) for 45 minutes. Remove from oven and allow to cool. Hope the kids like them. I’m going to bring each child 2 cupcakes at pick-up. Letting them eat in the jeep is such a bad idea. Rachel would have loved these so much.
I did keep about a soda can’s worth of “her” because I couldn’t let go and I want some for necklaces in the future or to plant a tree with when I buy a house again. Julie, London, Boston, my Auntie Alison and her daughter – Cousin Zoe we’re all there. I found a beautiful tree in one of London’sRoyal parks called Bushy Park. Todd and my parents had not flown to England when we spread the ashes but Todd took this picture when he did arrive. I miss her so much.
We’re headed to London in 10 days and my kids have never really been on public transportation. I took Boston on the RTD Train and Bus so we can practice getting places and timing our arrival time accurately. I know the London Underground is going to be a whole different ballgame but I figured we better get our feet wet. Boston agreed to ride the Bus / Train to take a yoga class with me if I agreed to take him to see IT. Deal done! Here are the pictures from our day trip. We ended up having to take an Uber home because we got on the wrong bus after the movie but it was fine, a real learning experience and honestly I really enjoyed his company. He was tech free and didn’t complain once. Boston and I headed out. London took the picture in front of our house. Boston waiting at the bus stop near our house. Me and Boston, super excited for our little adventure. Here comes the bus! On the bus! Waiting for the train. It’s a new train called the A Line that goes all the way to Denver International Airport. Here comes the train! On the A Line At Yoga Leaving yoga, headed to IT the movie We ran late for the movie and the yoga class even though I left extra time for getting to both. I learned that you need to plan to arrive 1 hour before you need to be somewhere in order to get somewhere on time. I didn’t take more pics because we ran late to the movie and then were on a mad dash to get the bus home from the theatre. It was a splendid day with this kid.
I’ve been busting my ass this past month. Trying to bring myself back into the land of the living. Therapy, a physical, multiple medication appointments to slow my racing mind. I’m redoing our website for Geek Media in line with coming back from England. Headed to England in a week and a half. I signed up to start a 500 hour, comprehensive, Yoga Teacher Training as I want to teach yoga classes for grief and healing. Rachel died 188 days ago. 6 months without her, it feels like she died yesterday. People think that losing a child gets easier with time and I can say after 6 months it seems to be getting harder. I know I’ll never be “right” with her death. This trip to England should have been organized by Rachel, not taken in her memory. London and Boston had their birthdays and my kiddos are now Forever 16, 13, 12 and 11. I have been offered a part time job at amazon at night sorting packages for delivery. I’m actually looking forward to it despite the low wage. An excuse to get out of the house in a 1 million square foot facility, 4 minutes from home… I’ll be hitting my step goals for sure. My thoughts are all over the place but I wanted to put them on paper. I’m trying to decide if I want to bring back my fundraising for Batten Disease. No one I know in Denver, now, knew Rachel. Could I get people interested? I finally started meeting people just in the last week out here. I had friends before she died here but everyone has pretty much disappeared. Anna hasn’t left me, and I know she never will, but we have a bit more distance between our houses. I imagine its frustrating for those who haven’t been through losing a child because they want you back to the way you were, the person you were. The thing I enjoyed the most before she died terrifies me (4 wheeling). Be kind to myself is what I keep on hearing. Self care is another big phrase that gets spoken. I’m not even sure what self care is. I get sleep, I drink water and eat healthy and exercise but I think there is more to self care than just that. I have the rest of my life to figure it out. I am definitely hoping to hold some kind of memorial for Rachel next year around her birthday in Massachusetts. To fundraise for Batten Disease. That is the question…? The featured image in this blog is me and my youngest in a yoga class in Denver.
This week as part of my grief journey and personal development I have enrolled in a 500 hour Yoga Teacher Training as I want to become a Yoga Instructor that focuses on grief, trauma, ptsd and healing. My first assignment was to record a video introduction about myself. It’s rough and dirty but its authentic. 🙂
Weeks before Boston’s 11th birthday I came across a picture from his third birthday party and decided I wanted to try and inexpensively recreate the picture. I think I nailed it without spending a fortune. The main difference, to me, was the cost of the cake. Vegan cakes are much more expensive than an ole vanilla box cake by Betty Crocker. This is the resulting picture. This is the comparison picture between 2017 and 2009. London turned 12 just 10 days later and I sprung for a full vegan cake for him. It was INCREDIBLE! A few days before his birthday we went to a party for Ruby who was turning 4 and Boston took this picture of his brother. I love when they take pictures on my phone, seeing the world through their eyes.
It has been 139 days since my daughter died and I still haven’t been able to write her obituary. I don’t want anyone else to write it or any offers of help, it’s something I feel I must do on my own. 139 days feels like a grain of sand on a very large beach. Like no time has passed. Like it was yesterday. It still surprises me how much harder it gets with the more time that passes. I need a road trip. Maybe that will give me some inspiration to write a tribute to my daughter, one that she really deserves.
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!
It has been my goal for many years to be able to be successful while maintaining the ability to be mobile as much as possible. I had 4 young children, my oldest was diagnosed with a progressive, terminal brain disease. I was one of those few, true candidates for a mobile office. Not knowing if I was going to a hospital or if my child had a seizure at school. I have literally been ready at any minute to drop everything and run. Now that my daughter has died I still like the flexibility of bringing my work with me. Why can’t I work from a tent in the middle of the Rocky Mountains? (Generally speaking the internet doesn’t live in the Mouintains but that is another post for another day). I have been really excited about testing the limits in having a mobile office, especially since I have a lot of extra time on my hands with my daughter being gone. I am a bit of a wanderlust and I love traveling! I have always felt that working on websites and digital marketing is the perfect job and I have had a ridiculous amount of people tell me how lucky I am to work on websites because I can work from nearly anywhere. Built in 4g LTE, built in wireless capabilities. With the iPad 12.9″ Professional I have a really good sized screen for text editing and even some graphic design work for social media marketing. I’ve been playing around with different apps to find what works best and how to best upload and transfer files from email to WordPress websites. There are a lot of tricks I have learned and plan to write about to help other people who want to be successful and travel. At my leisure I choose to work from a Dell Desktop (i7)with a 60″ screen, a 23″ Lenovo All in One (i5), a 15.6″ Toshiba (i7), 2 iPad minis, an iPad 3rd Gen or one of the new iPad Professionals that I like to call “monster.” There is also a pretty nifty iMac that I hop on from time to time. I’ve tried tethering my laptop to my phone and am now trying to get a substantial amount of my work done from this giant iPad. Monster the iPad has a 12.9″ screen and I am using wifi and LTE from Verizon. I love him and have been able to work out some of the kinks between IOS, Apps and Website work. I am really disappointed in one very crucial piece of this iPad’s design. Simply put: the battery is shit. I bought him brand new and the battery lasts only a couple of hours when I am working. I have Bluetooth off, I am directly connected to wifi that stays UP, so Monster isn’t constantly searching for internet. The screen brightness is turned about 2/3 of the way up and I am not using this device to play music. Apple claims that I should be able to get 10 hours out of the battery but I have been able to get 1/3 of that, at most. I am definitely someone who force closes apps I am not using and even after looking at the battery life as I was instructed by a few tutorials, my battery still dies a lot. Maybe I am expecting too much? Being able to fly from Denver to Boston without having to charge would be a dream come true!
One of Rachel’s favorite movies. Rachel became a vegan before she died, perhaps you can try a vegan meal in her honor.
The triplets are taking a bike class at a recent Rec center all week. I didn’t know it was there, about 2 blocks from where Rachel was in school. I have to drive past it 20 times this week. She isn’t inside in a classroom, waiting for donuts or me to bring her something. She isn’t anywhere. My mind still lives in escape mode, that she is alive, she will just be back later. Passing buildings where she might be existing inside and return from “later” tears open my mind’s game and rips me back into reality. The worst feeling I’ve ever felt. I hate this life. The only escape is sleep and alcohol.
It’s amazing and terrifying the difference a year makes. 2017 2016 is at the top. Another Batten family sent us free tickets again this year and the boys were so excited to go. I am very grateful for kind gestures like these and swallow my grief so the boys can attend without pain or grief themselves. Thank you Kristine! <3