One Breath At a Time
I can still vividly remember the bigger reactions I had as a kid, from that very first time in the car when my Mom made me chew the Benadryl pill as we rushed to the ER to the time I bit into a pizza with jalapeño peppers or reacted at a family dinner. I remember the panic I felt inside - the lack of control that I felt in my body. It wasn’t a fear of actually dying but the unknown of what would happen next that scared me most. I also remember the calmness my Mom had in all of these moments. The immediate action she would take as she would administer my medications and we would spend the next 15 minutes waiting for them to work. I would sit with my finger in my ear until it passed and felt safe to swallow again. This became a warning sign she would learn to recognize even before I told her. But she never seemed rattled by what was happening and it was her calmness and steady instructions to breathe and think about happier things while I awaited the medicine to kick in that I have never forgotten.
As our son’s reactions shift and change I see my younger self in him as he feels the lack of control over his own body and the anxiety that carries with it. After a particularly stressful reaction last month I almost felt I was reliving my own childhood but I was playing my Mom and our son was me. I was calm and matter of fact on how to get through it and knew how important it was for me to remain steady and feel safe for him. We took deep breaths and I assured him he was going to be fine because I knew he would be.
I remember for most of my life thinking how amazing it was that my Mom was always so calm in these moments that felt so terrifying to me. I would wonder why I would become so unhinged and she seemed so unfazed. It wasn’t until a few weeks ago when this happened with our son that I felt a likeness to her that has surprised myself. I never thought of myself like her in these moments but as I have digested the events of the last few weeks I now realize the shift in myself that I had not fully recognized before.
Perhaps it is because I have learned we do have some control over our reactions- we can anticipate them and pre-medicate for them and I now have many tools to use when they do happen. I have stopped searching for reasons why and accepted this is part of daily life when living with a mast cell disease. It is still uncomfortable and anxiety producing when I have a reaction come on suddenly but I know what to do when it happens and I have learned how to breathe and stay centered without her beside me. This small amount of control I feel I know makes it easier to live with and get through these challenging moments.
I know I can't take away the feelings our son has during a reaction but I do know in time he, like me, will also find even small ways he can feel control over them and how to prevent them. It is hard to know I can’t protect him from this learning process but can only continue to reassure him and make him feel safe in these harder moments. I try to instill the same lessons in him that have been passed down to me always reminding myself how impactful my own actions during these stressful times will be to him. He has already proven time and time again his strength and bravery as he navigates his own rare diseases and while I wish he didn’t have to, I know he will find his way.
Many times in the last few weeks I have longed to speak to my Mom to share my own “aha” moment and also know she would have further wisdom to add. But I try to remind myself that we are forever connected by the lessons she instilled in me and that will always guide me on my own journey of motherhood and for that I will always be grateful…one deep breath at a time.
