Better Days, Dancing in the Sun

Listen, I have silently been stressing about our youngest daughters 5th birthday. It’s the same age Reagan was when she died and I have continued to have this worry that the same fate will happen with Ryan when she turns 5. It makes no logical sense. They are two entirely different people but the worry is still there.

I think it started 6 years ago. A few months after Reagan died we reached out to a legal team. We didn’t really have a good explanation for why Reagan died – not the root cause of it anyway. We knew what happened that ultimately caused her death but we didn’t know (and still don’t) what occurred to cause the symptoms and outcome. So we went searching for answers the only way we knew how. We asked the legal team to help us with a review. That entire process took 13 1/2 months from our initial contact. In the end we still had no answers. However, many opinions were offered up as to how we might be able to continue our search for answers. One of those suggestions came from a pediatric specialist. This specialist who had reviewed her medical records and case recommended we consider genetic testing to see if we could find a root cause. No other information was provided as to how the specialist came to the conclusion we should consider genetic testing nor was the type of genetic testing specific. It felt to me like they didn’t know what else to say because they couldn’t provide an explanation based on the data they had so this was the next path. It also wasn’t that simple to just say yes. Because to say yes meant we had to re-traumatize our 9 year old son when we tried to explain what we were doing. It meant we had to consider the impact to our unborn daughter I was pregnant with at the time.

So we didn’t do it. We were now 16 months after Reagan’s death and in the same spot we were on the day she died in terms of facts related to the root cause. It was exhausting and we decided to stop searching for an answer. Did you know the statute of limitations for this type of legal case is 2 years? Prior to going through this I would have thought that was more than enough time. Now I know it’s not nearly enough (but that’s a blog for a different day) and for complex cases like ours almost impossible. So we dropped it all.

I share that story with you because in the back of my head, deep down in my gut I have always wondered if we should do the “genetic testing.” I don’t regret the decision at the time but it’s a “what if” that has lingered for me since that time. My mind has also wandered to a place where I’ve even thought maybe it’s because they are girls, and it’s something about the genetic makeup of our daughters that caused the sequence of events which led to Reagan’s death. I know it’s crazy. I know it’s not logical. I know it’s because of the trauma I experienced through this that I deal with this aftermath. I know it’s ok and Ryan will not be Reagan.

So because of this I have always had today, Ryans 5th birthday as a milestone day. And the next one is in 5 months. It’s an irrational milestone but grief is irrational. So today we woke up early and celebrated Ryans birthday in the morning since Aidan would be out of town for baseball tonight. We finished breakfast, opened presents, and then left for work and school. I dropped Ryan off at school, she was skipping in to the classroom, so excited to be the birthday girl. It was a magical and beautiful morning. As I continued on to work I had my music on an apple playlist as I drove up the entrance ramp to I-110.

All of a sudden I heard the lyrics of the song and began to listen more intently. It was a song I had not heard before. Take a listen: https://youtu.be/3gqbE9jDI1g

As I listened the tears rolled down my cheeks. I leaned into it and allowed myself to feel sadness, relief, and hope. I let the tears come until they didn’t anymore. By the time the song was over I felt relief and hope. I felt at peace. The song speaks of better days ahead, having been soldiering on for 7 years, waiting for a train to come that never does, and soon will be dancing in the sun together.

In October it will be 7 years since Reagan died. Seems unreal that she has been gone that long but she has and I am soldiering on. SADNESS.

In a prior blog post I’ve talked about a group I attended shortly after her death and how that experience led me to be waiting to fall apart. Waiting for the train to come. It hasn’t. RELIEF.

I’ve talked about focus on the days ahead, not dwelling on what experiences I’m missing. I’ve talked about seeing and feeling her within and around me. I’ve talked about how music is therapeutic for me. How I find solace in the words and musical elements that help me find peace. HOPE.

I will never be the same as I was before. I choose to embrace that and know that the storm is temporary. The doubt and worry will creep in but I will continue to overcome. I am proud of myself and my family for where we are today. I know Reagan would be too. PEACE.

☀️

Until next time,

Maggie