…here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

I carry your heart (I carry it in my heart)ā€
ā€• E.E. Cummings

me and noa pacemaker

Today marks two years since Noa received her pacemaker. And this week is Congenital Heart Defect Awareness Week. So, I thought to mark this day, and to honor the intentions of this week, I would share a post that I wrote on Facebook following our last visit to the pacemaker clinic.

Today I took our sweet (and sassy) baby girl (yes, she’s still my baby) Noa to visit the Pacemaker clinic. It remains surreal to me, a little over a year & a half after that grand mal seizure, that our daughter has this little device in her body at 11 & 1/2 years old–that little heart of hers, survived major open heart surgery as an infant–and then endured another trauma that alerted us to the fact that on it’s own–it simply can not function as it is supposed to. The doctor told me today that she is now 100 % dependent on the pacemaker–each time we have visited that number has gone up–until it can go no further–100% dependent. When they test the pacemaker, part of what they do is to stop it and watch her heart’s own rhythm–immediately Noa began missing beats. It is not an easy thing to have your child sit, fully present and aware, through conversations about how much she needs & depends on the pacemaker. How, without it, her heart does not work properly–those are moments that are hard for adults to process, let alone a child. My kid has a tough exterior, but when those moments come during the visit–the anxiety that raises her blood pressure, the tears that quietly stream down the side of her face–that exterior melts away and I see her fear. What more can I do than to reassure her, to hold her & to love her. The tests get completed, the conversations end, the wires come off–and slowly I help her shed the morning reminders of a broken heart–because hers is a heart so full of love, compassion, strength, joy, faith and so much resilience. Her heart bears scars-as does her body–but as we walk out the door of the hospital and return to the promise of the day that lies ahead–I tell her once again that we are strongest in the broken places-the places of healing…. and I know that we are profoundly grateful that, as hard as this journey has been at times, we live in a time where modern technology can save the life of our child–where doctors & nurses can fix & heal a broken heart. And so we journey forward–maybe with a little more sadness today for innocence lost–for what Noa has had to endure–but also with the knowledge that above all else–she has survived, she has thrived, she is here–and today, as every day with her is–today, is a gift!

Noa and Fred in hosp 13

God is closest to those with broken hearts.
– Jewish Proverb