I know I have written about grief before. It's a never ending cycle that people publish books about. The stages of it, the process of healing, the unusual ways that people learn to cope. I could write about it for days and how different each day is; the song that goes on and on and on. But the bottom line is, it sucks. There are days when I feel like my past is just a dream and then there are days when the reality of it cripples me. I have endless issues with over thinking, constructing scenarios that have never happened, self doubt. I constantly fear the day when shit hits the fan again. I brace myself for it. Just the sight of something out of place on the kitchen counter or our mailbox being hit by the snow plow, throws me into irrational thoughts of what may have happened. If we all had time, I could go on and on about the things my mind has blown out of proportion. I have been through months of counseling to help me rewire the way my brain copes. I have to talk myself off the ledge multiple times a week. I drive myself nuts sometimes. If you see me, will you see the pain on my face, feel the ache in my heart or the permanent pit in my stomach? More than likely you will not. I will keep my fears quiet and later find humor in the craziness. But this is a cycle, a never ending cycle. I often wonder if I will ever learn that it's okay. Life is okay. And even if it isn't, it will be.
Today, I got a phone call. I recognized the number as that from University of Michigan hospital, expecting that it may be the cardiology department since my girls have an appointment next month. But the voice on the other end was familiar. It was one that a mother never forgets. From the moment he asked if I was Sierra, I could hear the compassion and worry in his voice. He said, "this is Dr. Innis, is this an okay time to talk?" I felt so many emotions that I burst into tears. YES, YES now is a good time, it will always be a good time to talk to this man. He told me that he got a notification from the genetics study on my son's genome sequencing that we did back in 2013. He explained that the pathogenic cardiac mutation changed to unknown. This means we will continue to have my girls followed by cardiology throughout their lives. He then told me that the unknown significance in the Mitochondrial mutation that came from me had changed to benign. This means that we no longer need to worry that this finding caused Carter's medical issues. So far, there's no indicator that he inherited a genetic problem from me or his dad. I am not sure how to explain the way this feels. All I know is that it makes me cry. We are no closer to answers than we ever were before. But to know that his genetic testing is still being reviewed regularly and that I will hear from this man who has meant so much to us, brings me peace. Dr. Innis has been a place of comfort and alliance in this battle. He has fought so hard to find answers. He spoke at the 4th birthday benefit we organized to raise funds for research and he sat with the rest of Carter's team of specialists the day that we made the decision not to intervene anymore. I remember sitting across from all the doctors as they explained that Carter was tired and that intubating and intervening wasn't helping him anymore and Dr. Innis got up mid way through and walked out. He hurt with us. This decision impacted so many people. Carter mattered to his team, especially to Dr. Innis. In the medical world, they see so many things and so many cases. I imagine that doctors become conditioned and shut off from the pains that disease brings, but I can whole heartedly say that I felt the love and pain from his team as they sat through that decision with us. We have yet to find the answers and hearing from the geneticist today reminded me that it still matters and although Carter's journey has ended, the search for a reason have not.
All of this to say, grief sucks. It can take us from okay to turmoil in an instant. A smell, a voice, a picture, a memory. It is real and it is hard. For some reason that call this morning brought me back to the visits we had with the geneticist. Sitting next to Carter in his wheelchair, the grin on his face and the sound of his voice as he watched and listened. The planning it took to make the trip to Ann Arbor and the endless parking battle once we arrived in P2. The twinge of hope I felt each time we went as I hoped for something, something that might help my little boy. And although there was never a discovery or medication that worked, the team never gave up. Even at the end, I like to think they still hadn't. We all knew the same thing; that fighting was only causing suffering. There is such a thing as saying enough is enough, is still fighting. We had to make the hardest decision there is in life. Letting go. Letting go of all the things we couldn't fix. We had to let this beautiful boy go. Fighting for what was right had become everything wrong. So as I process the phone call I got today, I am still emotional and my heart feels raw.
