Pioneer Children

There is a song the kids use to sing when they were little in Primary at church.  It was called Pioneer Children.  I think that title is very fitting to use for the circumstance we find ourselves in. Just as the Pioneers walked long distances to create a better life for themselves and those generations to come, my kids are also part of an elite group of children living with SDS.  Allowing doctors to study them so that life will be better for those still to be diagnosed. 

 When I spoke to our doctor yesterday, he said the kids were in some ways, charting through new territories.  Of course lots of people have ITP and we are not the only ones with SDS and if it turns out the kids have mito disease, we won't be the first for that either.  The doctors are barely skimming the surfaces of these diseases as far as research goes.  Much has been learned but there are still so many missing pieces.  Unfortunately, we find ourselves stuck in that place where there is no sure treatment. We try one thing, hope for the best but if it doesn't work we move on to something else.  Everyday, is a day closer to finding those answers we long for.  For now, we just have to live the questions and the answers will find us in some distant day. 

It was interesting to listen to our Oncologist reason things out with me.  They aren't just planning for this week but for the future of my kids.  I was especially glad to hear that they are not only concerned with their physical well being but their emotional as well.

I guess as a parent and a mother, I too am learning to navigate through this barren land of chronic illness.  There are no markers or footsteps to follow of those gone before.  No defining borders and nothing to tell me I am on the right track. It can be a little overwhelming.   My kids too feel the weight of their responsibility to gracefully accept this life and find an element of 'normal' for themselves. 

I am proud of them everyday.  We have so much fun together despite the problems.  I can't express enough gratitude for all those who have offered prayers, visits, phone calls and warm thoughts.  That makes the journey all more peaceful.  We are really being watched over.

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