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“That's the thing about pain. It demands to be felt” - John Green In a recent fit of rage I came to a realization. I was under the [false] impression that we were done with the hardest parts of this journey. I was lulled into the belief that we had already experienced enough difficult times and that we had paid our dues to this disease. Now I feel guilty for thinking that we were through the hardest parts. Because right now feels like it actually may be the most challenging. I wonder if I had known that we would be back in this place again, would I have done anything differently? Because stability and the reprieve and status quo felt really good. Because there was so much space for fun and for joy and dreaming and making plans for the future. Because there were options, choices and a focus on things that were not medical. Because I was able to think beyond today, tomorrow, next week. Because we were able to focus fully on her wish which is "I just want to be a regular kid." And right now, the regression and loss and grief and so much pain is visceral. The pain is evident in our home and feels like an uninvited guest that I want to kick out the door. Right now, we are helping our child walk through some intensely heavy experiences. Experiences that I cannot help her rationalize or put a positive spin on. Because they are legitimately unfair and scary and heartbreaking. Right now, I weep openly, while on the phone with neurosurgeons and hematologists. Right now, I feel desperate as I email her team looking for direction, a different plan or another treatment option. Right now, I wish that this could be happening to me, not her. Right now, I want nothing more than to fight and resist what is in front of us with every ounce of my being. I want to fix it & to make it better. Because that is the job of parents right? To kiss the scrapes and dry the tears and to try to help make things better. And right now I am sitting with the question, "what if we cannot fix this?" What I know now is that pain must be felt. I continue to cry every time I drive alone. At first I was irritated about my car crying, but now I have realized that it is part of my process. I am trying to embrace all the tears. What I know now is that I need tons of space to cocoon and rest and re-adjust to this new normal. What I know now is that I need to continue to ask for what I need, even though my 'have-to's' have grown exponentially in the last few weeks. What I know now is that the people who are showing up are angels in disguise. The people who show up in crisis are the most amazing people of all. What I know now is that we are under enormous stress as a family as we try to navigate new needs & new concerns in the midst of our everyday 'regular' lives. Because of that, I want ease in all areas of our lives that can have ease. What I know now is that frustration, anger and pain are easy reasons for me to build walls up around my heart to keep the people I love at bay. This feeling is tight and clenched and closed off. I am working on staying open hearted in the midst of all of this. But sometimes it feels easier to push people away. What I know now is that I want to maintain some sense of normalcy in my life to feel grounded. Because there are so many parts that feel off-center and out of whack. What I know now is that I need support in cultivating hope & positivity. We are up to our ears in the reality of what has changed so significantly in the past two weeks. We are still very much in it and need the love and support of friends and family to keep us going. What I know now is sometimes the easiest questions have no answer. What I know now is that my in-the-moment presence in our current situation is both a challenge and the biggest gift. What I know now is that I am glad I am here. Writing this out. Even though my brain is fried and I am exhausted and overwhelmed. xo- Kristen
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