Skip to main content

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.


Photobucket

Comments

Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…