Family Stories

June 22, 2009 by Rieshy
The only book I've come across that deals with parenting chronically ill children is Chronic Kids, Constant Hope - Elizabeth M. Hoekstra, Mary Bradford. It was in our hospital's lending library- yeah for great children's hospitals!

A section in the book talks about writing the story of your child's illness. I've been pondering this for a few months now. I've sketched out the details of my 6th child's birth and first metabolic crisis.

I can write the bare bones, but how can I describe the first ambulance ride with my unresponsive son wrapped only in a towel? Or write about the amazing relief of seeing his grey body turn pink after an injection of D-25? How can I adequately chronicle my husband's lonely drive to meet us in the E.R.? Where do I fit in the story that occurred 6 months after that first crisis when my 7 year old son fell apart, his thin body sobbing in my arms as he confessed that he should have done something to keep his little brother from getting sick?

I don't think I'll ever get the story finished. I'll never be able to capture all the emotions, partially because the story is monumentally defining to my family, but is of little importance in the world-wide scheme of things .

I do, however, think that the exercise has been helpful. It's made me look at the experience from multiple points of view. I've talked with my other children about their impressions of that first crisis and life since. My husband and I have taken time to compare our memories, which has given us opportunity answer questions about events that we both had.

I've slowly come to accept that what I am in essence writing is not the story of one child's illness, or even two children (our 7th child is currently scheduled for testing), but the story of my whole family's transition into a life that includes, but need not be defined by, chronic illness. That story is a story that continues to evolve and will hopefully be a story full of laughter.

This was an unpaid review. I always love comments. If you know of any other books on raising chronically ill children please, please, put the info into a comment.

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annies home said...

so scary of a life you must have but with that I know that you truly bask in every happy moment as well. We have a son that has asthma so bad that it was several rides doing CPR and nights of worry and while that does not compare to your story I can imagine on the short line of how it must be

Rieshy said...

Shopannies- Similar to dealing with asthma, you get "used" to dealing with the idea that a crisis could happen. I hope your son is doing well:)

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