Nine Years Ago

Dear Simon (aka Bane, Voldemort, Princess Celestia, Megatron, Darth Vader, Trender Hoof, etc etc)

Today is August 1^st. Nine years ago today I thought I knew who I was, what I was doing, and where I was going. You changed all that with a simple wheeze. Several hours later you were fighting for your life with this incredible will, amazing team at Children’s Hospital, a ventilator, and two broken and shell shocked mommies. I will never forget that feeling of handing your sweet exhausted little body over to the nurses and Dr Williams knowing what they had to do, and that it would hopefully save your life. I will never forget that feeling of complete surrender. It was the same feeling I had 6 weeks later when Jaime and I made the decision to not list you for a transplant, believing that whatever needed to happen would happen and that Jaime and I would be whoever we were meant to be, as moms, as partners, as individuals.

 For those 113 days with you in the ICU, I practiced being present. I practiced slowing down. I practiced breathing and trusting and feeling all the feels because if I didn’t I might miss a moment with you and we didn’t know how many more of those we might have.

I remember knowing that I had to take care of myself first because 15 hour days in the ICU was what was being asked of me and I didn’t want to/ couldn’t imagine doing anything else. But when I got to take 15 min breaks or someone came to hold you for an hour while I went home to take Roxie out for a walk in the sun and non-recycled air, I knew I had to do it. I learned to accept and even ask for help. I recommitted to touch and song and finding the Light even in the midst of beeps and needles and medications administered and even in what felt like the darkest of dark.

And we laughed. Jaime and I laughed and welcomed new people and ate RedVines. We did it like there was no tomorrow. We held each other. We held each other physically, emotionally and spiritually.

We did it for months in the hospital. We did it for the years out of the hospital when things were still so dicey with compromised immune systems and feeding tubes and so so many medications. Your Mama and I stayed present to each other during some really hard shit, more hospitalizations, more diagnoses, bigger risks and amazing surprises from you as you worked your magic, on your own timeline, to becoming the weird and wonderful 9 year old you are today.

We will never be out of the woods with Cardiomyopathy. Autism keeps us re-framing and relearning about the world and the way you see it, and ADHD makes sure that we stay in the moment, breathing deeply to be closer to you as you pace yourself in this growing up process, ever drawing those around you into your imaginative and complex world.

This August I will be finishing up my yearlong Residency program in Chaplaincy and I want to thank you. It was you and your ‘big heart’ that took me off my School Social worker path and brought me to this moment. A few days ago I got offered my dream job. It works for me, it works for our family, and it means getting to follow a calling; a calling that you brought me to with what I can only describe as your divine connection.  You have shown me over and over again, through parenting, through partnering with Jaime, through your own bright and unmistakable Light, more of what I meant to do with this life. I love being a chaplain. I love the process, I love the practice, I love the learning. 

You are like my very own living, breathing Shehechianu blessing and I just want to take this moment to thank you. Thank you for bringing me to this time and this place. Thank you for all the ways that you have made our family what it is. Thank you for the opportunities to learn and connect with the world around me in new and wonder-full ways. Thank you for showing me that beautiful and brutal are loving cousins and most of all, thank you for the chance to play, imagine, see, breathe, cry, laugh, love and live during this time with you. I am humbled and honored to be your mom, a chaplain, a wife, and simply me.