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)
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.
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.
I was at a Memorial Day BBQ this weekend and found myself with other parents who both have children the same age as Rachel was (should be). All of our children should be starting their senior year and living through all of the milestones that this year of life has to offer. College tours, homecoming, prom, senior pics, graduation. The other parents knew that my daughter had recently died and yet they found it fitting to complain about having to pay for senior pics, cap and gown fees. Money, from what I can gather, is not an issue. Parents just complaining about the added expenses of their children, their healthy children, moving to the next stage in life. I burst into tears, behind my sunglasses and looked away, toward the field we were sitting next to. Wishing I had my daughter back, healthy. Knowing she’s not coming back, wishing the ground would swallow me whole. If you know someone who should have a child around the same age as yours, please try and be careful with them. We’re sore. Sensitive. Broken hearted. We’d do anything to not be wearing the shoes of a grieving parent. Well, anything except trade with(read the rest)
Tomorrow night will mark seven weeks since my oldest child died. This has been a hard seven weeks, and even longer eight years of her disease taking over, slowly killing her. The kids and I are doing alright, some days are better than others. I find that it is hitting Boston the hardest but he has always been sensitive like that. I love them all so much. An unfortunate and unexpected side effect of such a tremendous and profound loss of my daughter has been involuntary urination in my sleep. I have urinated in my sleep three times since she died. Last night was, by far, the worst. I was soaked. I don’t know what is causing it. I am totally sober, getting in plenty of water and nutritious foods and walking several thousand steps every day for my health. This catastrophe happened three hours after I went to bed, and I went to the bathroom right before I went to bed. So fucking embarrassing. I decided to blog about it because I figured there is somebody else out there who is going through something really hard and maybe, just maybe they’ll Google search this and find me. And know(read the rest)
It’s easier said than done. Having your child die. For years I could speak about having a terminally ill child quite easily as I had clearly removed myself from what that really meant. I sit here next to a box of ashes that holds the true meaning of “terminally ill” and I am frozen. After she was diagnosed with Juvenile Batten Disease I set out on many road trips to take her and my other 3 kids places, while we could. Making the most of life, making loads of awesome memories. On every road trip, as the kids were listening to books on tapes or watching a movie, my mind would always wander and I would think long and hard about what I wanted to do to celebrate her life when the time came. My rule, without question, was to spread her ashes within 48 hours. I have had her ashes for a week. They sit next to me while I work, sit in my lap while I stare at the wall from the couch and they either lay next to me in bed or on the table next to where I sleep. 48 hours is long since gone and(read the rest)