Hear the sad story

I recently heard someone say, "It's much easier to hear the sad story than it is to be the sad story."  She lost a child some time ago and she is the sad story.  It was a sad story for sure.

Call me crazy but, I would rather me or my children be the sad story than for me to have to hear the sad story of someone else.  Hearing sad stories makes me feel crazy.  I can't stand it.  I'm not sure why.  Maybe, it's because I know I can handle anything and I worry that other people won't be able to handle the bad things that happen and they will fall apart.  I hate seeing people sad, scared and falling apart.

Sometimes, the hardest thing about being in the Shwachman Diamond Support group is witnessing the new parents joining because their child was just diagnosed or is in the process of being diagnosed.  Some of them are terrified and have little support in place.  My stomach drops.  I remember so clearly the day my kids were diagnosed.  There are scarcely words to describe that fear, the way time races and all you can think about is how long you have left with these priceless children.

Some people think our story is sad.  Maybe it is, I never really give it much thought.  It's not really sad to me, at least not all the time.  There are moments when I look at my kids and ache at all the hard things they have to face but for the most part, we are happy.  We never let a day go by that we haven't tried to pack the best parts of life into it!

The sad story to me is the one who takes the important things in life for granted; who worry more about money, houses, cars, toys and vacation destinations.  I'm sad for the people who can't see the value and importance in even the most ordinary moment. There is no such thing as an ordinary day in our family; not just because there is always something crazy going on but because we celebrate life everyday, we make the moments meaningful!   Even a sad, sad Shwachman Diamond story can be empowering and moving, even joyful cause sometimes it is!  Some of our favorite traditions were born out of sad stories and suffering.  I wouldn't trade that for anything!

I remember 10 years ago this coming week, Spencer had begun having a series of seizures.  He was in the hospital in a medically induced coma I guess you could say.  They would try to taper him off the heavy meds and he did okay for a day or two but then would begin seizing again.  During that week before his diagnosis of Encephalitis, I tried to plan special things for Shelbie and Samuel when I took breaks from the hospital.  Spencer eventually had to be life-flighted to Boise.  I had to be gone from Shelbie and Samuel for two weeks straight.  When Spencer returned from Boise, he spent another week in our local hospital as we tried to rebuild his strength and get him walking again.

One night, I dressed the other two kids up in their Halloween costumes and I filled their treat bags up with candy; it was a few days before Halloween.  We then went door to door in the neighborhood and yelled on the front steps, "We're tricking you with treats!"  When they opened the door, we filled their hands with candy!!  It was so much fun!.  When we covered the neighborhood, we headed up to the hospital where we visited each room to give them some candy.  We finished up with Spencer and watched a movie together and ate pizza.  That is one of my fondest memories even though it was the most tragic too.  We almost lost Spencer that month.    We were also the recipients of such kind thoughts.

I remember one night during that same event, the man that lived across the street came up several nights and tried to coax Spencer into eating.  He lost so much weight and the doctors were worried.  Every time I tried to get him to eat, he would throw a tantrum.  This man was huge in stature but so sweet to see him playing food games with Spencer and making him laugh.  It worked and Spencer did get his appetite back but it took this man coming every single day to help with Spencer.  What an unexpected source of comfort, what a blessing.

So, sad story or not.  I am grateful for all the great stories of love we have accumulated over this Shwachman Diamond Syndrome journey!



  1. I need to be more like that. Enjoying the little things. I feel like I do, but after reading this I do get caught up thinking about houses, and money and things that I want. thanks for that reminder Kathy and sharing those stories. I enjoyed reading those!

  2. Kathy, this is one of many reasons I look up to you!


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