Tuesday, June 30, 2015

Another SDS Angel

Yesterday, the Shwachman Diamond Syndrome world lost another sweet soul. She was 52.  One of the oldest living SDSer's and diagnosed back in the day by Dr. Shwachman himself.

While I didn't know her personally and never had the chance to meet her, I knew her mom.  Today, I want to pay tribute to her.

Some 20 years ago, I sat at Primary Children's hospital with Spencer and my husband sat at University Hospital with Shelbie.  The same afternoon.  Tests had previously be done on each child respectively.  We were at different hospitals because it was thought that they each had something completely different.  Shelbie was seeing an Immunologist and Spencer a Gastroenterologist.

We met up later at the GI's office to get the results of Spencer's testing.  I will never forget when the doctor came in.  She carried in her hand a single piece of paper telling me what my son had.  As she spoke, it became more clear that indeed, Shelbie had it too.  Shwachman Diamond Syndrome.  All the clinical signs were there, bone marrow failure, neutropenia, pancreatic insufficiency...

The sheet of paper listed some symptoms and a brief paragraph on how the disease manifests itself and nothing on how to manage it.  The prognosis was grim.  At the bottom, was a number scrawled out.  The doctor said, "Just call this woman.  She is going to know a great deal more than any doctor ever will."


This woman, was the mother of the sweet girl who passed away yesterday.  Joan and Michele were instrumental in forming a network of SDS families.

My heart goes out to Joan.  Not only did she spend endless hours caring for her daughter but she spent endless hours helping me care for my children. I know she has helped just about every SDS family at one point or another.  She was only ever a phone call away and I used her as one of my most valuable resources in navigating the early days of Shwachman Diamond Syndrome.

Joan was always patient and always had good ideas and welcomed advice.  She was my sturdy set of training wheels in our new world of SDS.  As I regained my balance and life became larger than I had expected, we lost contact for a bit.  In the past couple of years, I have been lucky to be reacquainted with her.

I feel a trace of heartache as I think about what her days must be like without her sweet Michele.  I can't even imagine how you go from being a caregiver around the clock for 52 years, to not being needed in that same way.  I'm not sure how you pack up decades of love that continually spilled out around you.  I'm not sure where you find your purpose again.

I suppose like anything, there will be a learning curve; a walk through the land of grief, where the terrain is almost as wearying as SDS itself. I'm sure she will find the void of missing her daughter and surely, best friend, bigger than she imagined it.  I'm sure that she rehearsed the possibilities of this day without Michele but I'm sure, its nothing like she imagined.  Things never are.  Often they are much better in the worlds we fabricate out of more gentle materials than real life.

Oh how I ache for what she is feeling.  Something I hope to never experience but if I do, I know that if Joan can do it, then so can I.  She is a great spirit.  A gentle spirit.  A mamma bear.  She scatters those qualities around like confetti, bright spots for the rest of us still journeying along the bone marrow failure paths.

So, another goodbye, another angel gone, another lesson learned about grief but still, another reminder that Heaven is not that far.


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