The tapestry of the life of a medically complex family

A life with meaning

I have more to say about our trip to see the RedSox. I have warned one friend, but not the other, so for my youngest friend I will just use her initial unless her family approves. Not sure how this will come out, but pretty sure I will need tissues…

Over the last year some special children have lost their lives to rare disease. Two of these children I feel bound to beyond having frequent contact with their parents & pictures on social networks- one had frequent medical care with our ENT, the other began her journey with the disease that took her at the hospital where my kids receive most of their medical care- where they are being evaluated for a similar disease.

Ayrie [forever 4] and M [forever 2] came with me to Fenway Park that day. When we surrendered our tickets and stepped through the doorway onto the concrete ramp, I was struck by the coolness and the image of my oldest strolling with my youngest while a nurse carried his other sister whose twin nestled against my neck in my arms. All 4 of my children were there with me, at this historical park, adventuring on a family outing of their shared social heritage. The enormity of what had been overcome, and the journey yet ahead, brought thoughts of my friends who would never again travel on an outing with all their children physically present. Tears sprang to my eyes and I sent thanks to the Universe for my ability to know the significance and experience the joy of this moment.

It hit me then too, that were it not for the lives of these special children, I may have waited beyond this moment, beyond this day, to ever adventure such a venue. The lives of these 2 children have forever impacted my life and the lives of my children. Without knowing of the tremendous lives of these young children, I may still have bought in to the “waiting until they’re stronger”, “waiting until they’re well” mind-set that governs much of what we choose to do as a family. Having known these children faced uncertainty each day and did so with a smile and adventurous spirit has freed me from some of the limitations binding me as a parent of children with significant medical needs.

The life and death of children so young has reinforced that we need to appreciate EACH day with my children. We need to “take risks”- still calculated and unfoolish- but “risk” to live the moments that can stay with them forever. Before I may have thought “well, it’s possible to go to a game, but it will be easier when their trachs are out”. I would have thought the delay nothing more than protecting them from the exposure to germs, exposure to extremes of temperature that are hard on them physically, a delay of access until they were “well enough” to fully participate & enjoy the experience.

Being there that day brought Ayrie & M fully to the front of my mind. It made me acknowledge that the twins, their older brother and younger sister will have memory of the significance of their first RedSox baseball game, experienced together, WHOLE as a family. Regardless of what the future holds for any of my children, this memory will live in their hearts & minds, cementing the bonds of family across experience. Thank you Ayrie & M for touching our lives in this way. I know you both have strengthened and improved our lives through yours.

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Comments on: "A life with meaning" (1)

  1. You have such a sweet family and what a way to make lasting memories!

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