I’m Allergic to My Life Raft

I was talking with my grief therapist the other day and I was talking about how I didn’t want to be someone that was stuck. Even though I don’t want to forget any one thing about my daughter, I can’t be so stuck in my grief I can’t move. I was using the analogy of being capsized and having an anaphylactic allergy to my latex life raft. He somehow seemed to understand. It is because moving forward is painful and it might require doing things, such as facing certain dates, facing triggers, personal inadequacies, and other people’s inadequacies. It’s like walking through fire to get to the firehose.

I have started to face these painful hurdles related to my daughter’s passing one by one. The most recent hurdle is the process of looking into my children’s genetics as it pertains to medications and depression. I requested a copy of all my daughter’s medical records. The main reason was to see if she had a diagnosis. That was so very difficult. I had one doctor call me to ask if I wanted to schedule a visit to discuss it. “No, I thought. Maybe you should have done that when my daughter was alive,” I thought. I then put that anger aside, it does no good to blame the inadequate psychological community that didn’t see what was going on with her. That is a project for another day when I am mentally healthy enough to promote depression research and helping young adults not slip through the cracks. I just gently declined. For now. I shed a few tears as I was triggered by the phone call of my daughter’s doctor and went down the rabbit hole of what if, but I pulled myself out. I cannot live in the deep waters of what if. I will drown.

One of my other daughters will be getting the testing done, after requesting multiple times, she is finally getting the genetic testing done to see what medications she can safely take. She is still under 18 and I can still advocate for those things. This will help me somewhat with my other daughters and may shed more light on what happened to my angel girl. I have to focus on the hope and the positive and keep afloat. The crazy thing is we have all the technology and science for everyone to see what type of metabolism happens with different medications. We just don’t have the funding behind it all.

Though I have turned a bit of a corner I still have something every day that pulls me into the brain fog abyss. Yesterday it was while I was at work. I am a surgical nurse and I actually had a day where I’ve finally noticed I wasn’t feeling triggered by work. (I got the news while in an operating room theater.) I was doing one of my favorite types of surgery, breast mastectomy with reconstruction. I have always liked female oncology cases. I feel like I am helping these women somehow with their journey through breast cancer.

I was even dancing around at my set up, amusing the young nurses. When one of them brought up we were very short on the tissue we use for reconstruction. The tissue is donated from organ donors. She made some random comment, not meant to be nefarious, about needing more cadaverous. I left on a break quickly, but I couldn’t help thinking about my daughter. She had been a donor though they hadn’t contacted me for her to make any donations. I was thinking about how wonderful it would be to get a letter that your child had saved someone else’s life or improved their quality of life. It’s something I had never thought much about when helping with an operation.

I was also comparing trying to move through grief to trying to survive an autoimmune disease. For whatever reason, so many of the parents surviving the loss a child, suffer from autoimmune disease. I think there’s a huge area of research there for someone wanting that project. There are so many similarities. With an autoimmune disease, you know that getting up and moving your body will most likely help your body in the long run. You also know that getting up and moving will also be painful and could cause a setback or a flare. In grief, it is similar. There are things that are helpful such as exercise, therapy, or just opening up to others about things you are feeling. Even though it will be taking two steps forward, you feel the physical and emotional fatigue of one step backward.

Most of my friends my age are checking off their midlife bucket list. They are doing marathons and other cool physical goals. Even before grief hit, I found myself mourning the physical life I could have had. It kept me from doing anything. The same is true in grief. If I hear, “new normal”, any time soon I might gag. We mourn the life we had and it causes us to be stuck. We don’t want to find our new normal, such as one less child at the table and so on. It is the same with an autoimmune disease. I knew that the only thing that I was going to be able to do at the gym was water classes. I kept thinking of all the things I used to be able to do. I found myself doing nothing.

Before grief hit, someone told me of the spoon theory. “It is used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness.^[a] Spoons are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.” https://en.wikipedia.org/wiki/Spoon_theory

I realized today that the same theory can be used with grief. When I have to interact with others that don’t understand what I am going through, or go through my daughter’s sock drawer, or stacks of her books, or even process some part of grief such as a special holiday or birthday. It takes up emotional and sometimes physical spoons. Many times the events can be healing such as talking with a therapist or support group, but they still require spoons and sometimes more than we have to give. This is why many people in grief will choose to be alone over being around others.

At the one year anniversary of my daughter’s passing, we had a balloon release at her memorial bench five blocks away from my house. I released 48 purple balloons. The next day one of the purple balloons was in the tree in front of our house across the street. A little while later we had a message from our friend who was also one of her employers. He was touched to receive a balloon in his back yard. A couple miles from the balloon release. It was a shout out from heaven, I have no doubt. Especially considering the person’s yard it landed in through the wind and rain.

At the same time in Peru, where I was a year earlier, I was honored and amazed that the locals helped with the FACES foundation having 100 balloons released in my daughter’s honor. As I went to look closer at the picture I was amazed to see that the balloons AGAIN, formed an angel. Just like they did last year. Seeing the balloon release video eases the pain a bit from the PTSD memory I had about Peru and getting the call. I am forever thankful for that. I would have never known that an anniversary like this is filled with the constant reliving of the experience on that day. Having something else happen on that date, that is positive, at least softens the rough edges of the loss.

A few days after the anniversary was my youngest daughter’s birthday. I went a bit over the top, trying to compensate a bit for the year before. I had booked a room for her and her friends downtown. As we were crossing the street in front of the hotel, we all stood perfectly still in awe. Hundreds upon hundreds of ravens, crows or blackbirds were asleep in the trees in front of the hotel. As I stood there, on my last little spoon, (like the sad little shell-shaped gravy spoon) I knew my daughter was sending a “Happy Birthday little sis” and a “you got this mom,” from heaven.