A picture is worth a thousand words

A picture is worth a thousand words, or so they say.

This weekend, I choose to post a picture of my family enjoying a picture perfect fall day.  It received many likes and smiles.  What you did not see in the photograph was the pain behind my sunglasses or the tears Kelsey had shed the night before.

Kelsey could not walk during the evening hours that preceded the photo and new skin lesions appeared on her ankles that has both doctors and our family concerned.  We almost opted out of the family fun due to the pain, but thought that the fresh air and a stroller ride might be therapeutic for us all.  Without knowing what the evening would bring, we decided to make hay while the sun was shining

All seemed well and the photographs remind us of the fun we were able to have in spite of worry we had within.  However, as soon as Kelsey sat down for the night, her eyes could no longer hide the pain.  Her tears of sorrow expressed all of mine, too.  The strongest and bravest girl I know was out of courage.  Her vulnerability forced my strength.

More widespread and deeper marks appeared throughout the evening hours and a visit to the emergency room was required.  I think to Wendy Mass’s poignant words, Be kind, for everyone you meet is fighting a battle you know nothing about.”  I think to the unsuspecting onlookers at the restaurateur who watched me carry a sobbing child that is half of my body weight at this point because she was unable to walk.  They looked kindly and said, “Poor girl.  Is she sick?”  

“How do I respond?” I thought as I tried my best to keep it together for my kid.  On one hand, I wanted to project everything I was thinking on them.  On the other, I just want to smile and discuss nothing at all.  “She just hurt her leg.  We’re taking her home to take care of it now,” was what I managed to say.

Kelsey is full of sunshine and all of those who meet her remark.  This is nothing new and even the ER nurses and doctors were enamored with Kelsey and her positive presence.  They also noticed me, trying to fight my tears and cover them with the sand-paper-textured paper towels that were present in the room.  I was touched when one nurse caught my glance and returned with a box of tissues.  She has no idea how perfect her timing actually was.

For it was not just my eyes who needed them.  My positive and courageous Kelsey needed to utilize the box before we were released, too.   Even a five year old’s sunshine can be clouded by all that she can not understand.

As we wait for answers, find new marks, watch her closely from a hospital bed, and worry with all that we have within us, we wonder why we can not just keep that sunshine shining brightly all day long.

We pray for strength, we pray for a cure, and we pray for answers.  Please join us in these prayers.

10 thoughts on “A picture is worth a thousand words”

  1. No one can fully understand the emotional and daily existence
    of this horrible disease. She is surrounded by the best family. friends
    love and support a child can have. Let us always keep Kelsey in our
    prayers and be ever so determined to continue our quest to raise funds
    for a cure. This has been a devastating set back and has given me all the
    more strength and unrelenting quest for an answer. Love her with all my heart!

  2. I am just reading this! I am praying for Kels and all of
    You! She is the happiest yet the toughest little girl I know! Please give her a huge hug from all of the Bucks! I am here If you need anything!

  3. Jen we are praying for you all!! If you need anything we will be at DUPONT from Thursday on please let me know.
    Kelly Lehto

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