Tag: life

It’s been 11 months to the day that Rachel went away. Well, closer to a year now that I let this blog post slip away and stay in draft mode. I’ve been talking a lot with the kids and having conversations in my mind about what I am doing with my life. What kind of Mom I am. When Rachel was alive but getting worse because of Batten Disease, it became more difficult to leave the house. I was able to get her out of the house but it was really hard to accomplish and we could only go out for very short periods of time towards the end because of the bathroom and she couldn’t bear her own weight long enough to safely transfer from her wheelchair to the toilet. She didn’t really want to go many places because it was hard on her and loud. In private moments away from Rachel (when she was in school) I would talk to the kids about what we would do when she was gone. It was a shit conversation to have with them. Knowing that their sick sister was holding them back from living life, knowing that I would one day(read the rest)

Last night was a disaster. I work at an Amazon warehouse about 28 hours a week at night / on the weekends. Lots of deaf people work there and in order to help the deaf and the hearing communicate, Amazon periodically offers (optional) basic sign language classes. I went to my first class last night. The teacher and interpreter come in, both awesome and friendly. What are the odds that the teacher’s name is Rachel, the same name as my dead daughter? I fought back tears the whole class, tried everything I could think of to hold it together. Seeing her sign the letters for R a c h e l repeatedly, knowing my daughter could never have learned to sign because she went blind. It was too much. I am so upset that I couldn’t control my emotions, in public, for the first time since she died. I am angry that my grief is public and I feel exposed. My grief life and my fake work life have intersected. I want to quit. I tried to cry it out in a bathroom stall but had to stop in order to clock in to start my shift. Standing in the(read the rest)

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(read the rest)

Nantasket Beach in Hull Massachusetts

We’ve been in Boston (well, Hull Massachusetts overlooking Nantasket Beach) since Sunday and have seen so many people we love and miss.  Friends and family.  People who have seen Rachel decline since 2009 and were able to hide their sadness after seeing her decline of 9 months (since we moved) better than I expected.  I have only cried once since being here, maybe twice.  Not bad, all things considered.

The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them.

I am interested in Animation,Warner Brothers, Marvel , DC Universe. and photography  Im interested in Animation cause when i grow up i want to make animations for my kids and i watch cartoons all the time and i really want to know what its like to make them I am also interested in photography cause i think it would be awesome to meet celebreritys also its basic so yeah. I am also a fan in marvel and dc movies and comics cause ive played the video games  and every body needs batman and ironman in there life i like this stuff cause my imagination is huge      

1972 airstream sovereign

We have a big day today. The kids are going to meet the teachers and other students attending their virtual academy tonight. Rachel is going to the Carnation Festival with Megans’s Place and will have a dinner and shower with them before she comes home. While Rachel is having respite from us (lol) we are driving to Boulder and having a BBQ dinner with our extended family in Northern Colorado.

A lot of very big decisions need to be made.  Until they are said and done I feel like I am being robbed of my happy.  Its silly to let “the now” rob of your happy but sometimes we don’t have a choice. I was separated from my husband for 6 months last year and have filed for divorce 3 times.  Husband came home in January at my suggestion when he was having some health issues. We are at a stale mate and he won’t separate again, and you can’t force someone to move out of the house if they are on the mortgage. We are both in ABSOLUTE agreement that we are divorcing. So the next step is to put the house on the market.  Soon. Last Friday I took Rachel out of her residential school after one month and am working on figuring out where to have her go next.  She and I both vote that she returns to the local middle school for now. I also need to sort out a vehicle that will fit all of my children and a wheel chair.  Preferably that can pull an airstream or I am going to have to sell(read the rest)

[dropcap] THE ROAD RACE  IS BACK!!! [/dropcap] Last week I decided (after some gentle nudging from a few people that I love as much as the sun loves the moon) to hold a second road race for Batten Disease Research. The third Team Rachel Race 4 A Cure is being held on May 18th (which happens to be my Rachel’s 14th birthday) in Hull, Mass. We are looking for everyone to chip in either as a walker, runner, volunteer, sponsor or raffle donor. Please get in touch with me if you can help at team@teamrachel.com – click here for more information on the road race! We’ve raised a lot of money and donated it all to research and would love to see several thousands more!  I know this is a rare disease and it seems hopeless but research into Batten Disease also helps other brain / neurological diseases like Alzheimers, Parkinsons, Multiple Sclerosis, Huntingtons and so many other rarer diseases which you hopefully never have to learn about. So excited! Road Race meetings are being held every Wednesday night at my house 8pm starting Wed, March  26th!  <3

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