As I was monitoring my twitter account and my 'tweets'... I noticed a headline on one of my news feeds. Joseph Murray, who performed the first Kidney transplant (first coincidence) died in his mid-eighties in Boston (coincidence # two) just days after Thanksgiving (and there's number 3). I felt drawn to the story and feel somewhat compelled to offer my gratitude to this man that I never knew.
It was Thanksgiving when I sat in the unfamiliar office in the hospital that I considered my second home. Patrick's labs had been slowly declining and it was time for him to begin dialysis. The disease that we had been able to manage independently since birth with meds and diet was now requiring something far beyond my understanding and out of my control. Knowing this day would come and being prepared for it are nothing the same and I remember wondering how I would manage it...oddly in the midst of that waiting room my worries were selfish and immature. Still I sat while grim reality was circling my world.
It was strange telling Patrick's story to this doctor. Everyone else knew him. There was never any story to tell, no dates to remember, no charts that needed to be filled in. I didn't like him because he wasn't part of our world and I remember wishing I could retreat to the clinic that I knew so well. The interview continued and the exam was brief - his only concern was access to Patrick's veins. He took Patrick's arm in his hand and it looked no bigger than a twig across his palm. He tapped his veins and rubbed his forearm until I could see his skin turn pink. I was taking it all in...as I had always done... he was the teacher and I was the apprentice...learning how to manage this tiny boy who was the love of my life...
'I've never put a fistula into veins this small...' Abruptly I was delivered from complacency, shocked awake by his admission. Silently declaring that Patrick would not be his first, I felt the power shift as I began to advocate as I had done so many times before. 'Where have they done it before - where do I need to take him... when can you get that scheduled...?' His replies were short and direct 'Boston Children's...yes I can refer you... yes they have experience with infants and children... I can get you an appointment...we will get his records shipped...'
In a matter of minutes I had moved Patrick's primary care from Upstate Medical Center in Syracuse to Boston Children's in Massachusetts. In a few days I would take our first trip south to Utica and across past Albany to the Mass Turnpike. It would be only seconds before the doctor explained that Patrick would have a sub-clavicle catheter with an open port that would save him the torment of almost daily needles inserted into his tiny veins. It was in an instant I knew I had made the right decision.
Being a mom is a balance of judgement calls and informed decisions. There are times to be cautious and times where risks are inevitable. Being blessed with Patrick also meant the awesome responsibility of being that mom...the one that listens and learns - and the one that knows when to take charge. I am blessed that God gave me the power to be that mom...
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