In 2008, our eyes met in the post surgical unit of the hospital that our kids are treated at. That day we simply smiled at each other, knowing what it meant to be at an unexpected procedure on a Sunday, grateful for the same amazing GI brought the kids both in on the weekend to do a much needed procedure that would ease both of their pain. We simply exchanged that "look" of sympathy as we knew each other's child had endured the same procedure.
We didn't see each other again until the summer of 2009. Meeting once again following pretty rough surgeries for both of our kids, we found ourselves next to each other in post op again. We formed a friendship after that day and discovered that it was comforting to not feel alone in this journey. There was another mom in the trenches struggling to dig out.
We have been each other's rock through good and bad, many surgeries, PICU stays, long admissions, walks to the healing garden, boxing matches in our kids' hospital rooms (!), coffee runs, shared lunches to avoid the cafeteria, cheering in our children's triumphs and feeling sadness in their pain. We have found humor and laughter in times of extreme trial, it is what carries us through. We have been pushed many times to the edge and past the point that our mommy hearts' could handle.
Over the years, we were trained by many gracious nurses and doctors to manage the unmanageable at home. Central lines, IV's, ostomy bags, port-a-caths, Broviacs, drainage bags, GJ tubes, G tubes, Cecostomy Tubes, Pain, Nausea...all became words in our vocabulary.
Our wish is for others to not feel alone in their journey, that you may find strength deep within you to continue to find answers. Our goal is to find a treatment and a cure for rare childhood autoimmune disease.
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