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)
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(read the rest)
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)
I just found myself googling the 4 stages of grief only to find out that there are 5. Who knew? I’m assuming that its normal to bounce around from one stage to the next and back again? Anyways, here are the four FIVE stages of grief. 1. Denial (Check) and Isolation (No) (Doesn’t that make six stages?) 2. Anger. (Check) 3. Bargaining. (No) 4. Depression. (No. I’m so sad for her and what she will miss out on but I won’t give into depression and miss out on the good moments and the good days) 5. Acceptance. (No) I can’t imagine the day that the warm sun rises and I actually feel acceptance. I tried to spend a few moments today imagining what Rachel would do if she were in my shoes. What would be her plan of attack if it were her daughter with this disease. What would she do? Because whatever *that* is, is what I want to be doing. I need to get out of the overwhelming sadness I feel for her and the speechlessness of it. I need to start fundraising so there is never another child lose their eyes, lose their mobility, lose their mind(read the rest)