It's not always the obvious

Last night,  I had to be involved with a youth hike for our church.  I thought it was just going to be more of a 'stroll' or walk, not an all out hike up a mountain kind of thing so I encouraged Shelbie to come along.  I figured the exercise and fresh air would do her some good. 

It had already been a horrible day for her.  She had found out that her Counselor is moving to Wyoming so now she has to start all over and find another one.  We went through several just to find one she liked and didn't cry when they heard her SDS story.

We arrive at the bottom of the 'mountain' and really, we aren't talking about a Rocky Mountain here, just a local very large, rugged hill.  It doesn't look too bad but it didn't take more than 20 steps or so to figure out that the incline was much steeper than it looked and Shelbie was already struggling to keep up let alone put one foot in front of the other.  With a low red blood cell count and a very low hemoglobin, there was no way she could get the oxygen she needed for this kind of climb.  She turned back. 

You don't realize just how abnormal and different they are until they are out in the world trying to experience the normal things other teens experience.  Once we got home, she was so defeated and said she just wanted to go to bed and cry in her pillow, which I'm sure she did. 

The pains and discomforts of SDS aren't always obvious.  It affects more than just the bone marrow, pancreas and other major organs.  If affects the size of your world, the way you view the world outside of the small one you know so well.  It affects the friends you have or don't have.  It affects everything and some things you hardly realize or even expect to be affected.  Life with SDS is so interesting to say the least.


  1. That really is sad. I'm sure it's so hard and Shelbie always puts on a happy face (at least when I see her) so you'd never know. Good luck finding a counselor for her and tell Shelbie I think she is really fun to talk to.


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