This is how I like to remember her…
The picture with 2 of her siblings (the little one wasn’t born yet) also features my brother, Clive.
When Rachel was little she loved a boy who had cancer. She was a sweet soul who only saw the boy for the boy, she did not see the affects of cancer on his body. After having cancer for a long time, he died as a result of having Neuroblastoma.
It is no secret that I didn’t put myself or Rachel’s brothers and sister through having a funeral for Rachel.
Instead, in March, I am going to shave my head (for the second time since 2006) in honor of Rachel’s friend, Nathan and all kids who have survived cancer, who died as a result of cancer or who are currently fighting cancer.
St. Baldrick’s raises money for pediatric cancer research and they hold fundraisers all over the United States, where folks raise money through donations and then shave their heads.
I am shaving my head on March 16, 2018 and am asking for donations. For Rachel. For Rachel’s friend, Nathan. For any child you know who has or has had cancer.
I shave my head back in 2006 for St. Baldrick’s. This featured image on this post is me and Rachel as I was pregnant with her youngest sibling, Boston. My hair was growing back in.
Please donate. Please share. Pediatric Cancer is such a underfunded and curable cluster of diseases.
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. 🙂
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.
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.
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.
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.
I wanted to perch the urn on the tree behind them but I didn’t do it for their sake. Julie starts 8th, London 6th and a Boston 5th. They are all taking a bunch of science classes in their Friday Homeschooling Enrichment. Julie is super excited about sewing class, one step closer to being ready for the zombie apocalypse….. 🙂
I am missing their sister like crazy. I was definitely a ball of tears on the drive to the kids Friday school.
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!