This life journey has been a freaking rollercoaster so far. I’m fast approaching my 45th birthday, possibly the mid point of my life…
So it’s time for a bit of a midlife crisis, taking stock kinda a talk.
I don’t remember much of my “previous” life anymore, my brain is sheltering me from the pain of our loss. I remember being scared to forget how it felt to touch my daughter’s body. The last four days of her life I have spent holding her foot, while J was sitting across from me holding her hand. We were both silently trying to desperately engrave the feeling of our daughter’s warm skin into our brain forever, because we knew the clock was ticking. We were so excited to hear a recipients for her kidneys and liver have been found. We were excited her precious organs will not be wasted by meaningless death, but this has also started the countdown clock. Because finding the heart recipient had taken a bit longer we have bought ourselves another day with her quiet, motionless body. More precious time to stock pile the very last memories.
I have worn my empty heart pendant for a first time in a very long time today. It felt light and so heavy at the same time. We had survived yet another anniversary month, 4 very long years. We are so busy surviving these days we have no time to look back and over analyze our feelings. I prefer that anyway.
It has been three long years of my life holding me hostage. Imprisoned in my life and my caregiving duties. My life has grinded me down, the once sharp jagged pieces sticking out are now smooth. There are still some spots that will cut you like a knife. I still overreact, I still speak my mind too often, I still say things I regret. It happens less and less, but that could be because I speak less and less to humans. Just as I was ready to give up and somehow to be ok with not being able to work for another two years a miracle gift came my way. Sudden offer for childcare funding for a support person for Tomas. Instead of elation I have been sitting here terrified. I understand now when people talk about prisoners serving long sentences becoming institutionalized. I no longer know how to take care of myself, I only know how to care for others. I no longer feel I have the right to put my feelings and needs first. They are always second and most times they are only the third option to consider. So just like newly released prisoner I’m terrified of the possibilities that freedom has to offer. This freedom still does not contain family vacations or traveling (and not just because COVID). The only traveling I will be doing is a yearly pilgrimage to meet my beautiful “GRIN family” at the annual conference. This freedom is still very dependent on Tomas’ health or the lack of it most likely.
It has taken me several weeks to come to terms with this new version of our possible future. I still find myself too scared to dream big. But you don’t have to dream big to accomplish great things.
This year have been the hardest one so far. So many aspects of our daily living have been out of our control with possibly devastating consequences. We are phrased in living in fear, but this was, and still is, something very different. I find myself mentally collapsing in situations that would not phase me before. I know I’m balancing on a razor blade, keeping a precarious balance. But that what life is when your child might not wake up tomorrow.
The most growth comes from facing hard times. I have grown this year beyond my wildest dreams. I’m still unsatisfied with parts of my life, but I’m trying to be patient with myself. I know that the rest of the year will be even harder than the start, but I know the enemy now and I’m a very fast learner.
So it’s time to kick some butt again. Last year I raised money by baking thousands of cookies for Christmas. That might not be an option this year for many reasons. CureGRIN Foundation is organizing new campaign starting in August. My family is signing up and pledging to walk full marathon over the course of the month. Couple kilometers each day will add up, because you don’t have to aim too high to achieve great things.
ktojoy 