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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

It's in the Details

As this week ends our family is winding down the activities of our involvement with one of our county’s community Fairs. It is great to see the 4H kids in the show rings showing their animals, but it was the flurry of activity that I observed in and around the barns that left an image in my mind. The many bales of hay, water buckets, washing and scrubbing of animals, scooping poop and the endless highway of wheelbarrows exchanging one cargo (poop) with another cargo (bedding).

The Fair for many of these kids is a chance to show their animals and have a little bit of competition with their friends. It is also a chance for family and friends to see them compete in the show ring.

Hannah and Megan with their dairy cows

It made me think of the milestones that have been reached with Matthew…crawling, walking, communication with sign, reading, spelling, etc. We can now look at these as accomplishments, but they are not the end. If we limit what the possibilities can be, we stop living. A great quote I read and I am reminded of often is from author and Newsweek columnist Anna Quindlen (A Short Guide to a Happy Life);

“Life is made up of moments, small pieces of glittering mica in a long stretch of gray cement. It would be wonderful if they came to us unsummoned, but particularly in lives as busy as the ones most of us lead now, that won’t happen. We have to teach ourselves how to make room for them, to love them, and to live, really live…to love the journey, not the destination.”

When the Fair goers walk through the barns to look at the animals or catch a glimpse of Showmanship in the rings, they may look at it as cute or trivial. What they do not see is the thousands of hours of caring for those animals, working with them, training, learning how to show them…many of them multiple animals and species. Sure, the ribbons are nice, but the most enriching thing is the experience, the heartache, the drama and the friends that are made from the result of the journey.

Some people or even us as parents may look at our special needs children and have thoughts of…limited speech, hearing impaired, delayed function, a lisp, behavior problems…and the list could go on and on. We think that if they could just do ___________ (insert your own word), things would be better.

What about right now? Are we taking time now to enjoy the journey? Sure the ribbons or the dropping of labels like ADHD or SXI or Autism or CHARGE or vision impaired would be great…but that would not be the end of the journey.

An artist does not learn to paint to paint just one picture. A musician does not learn to play to play just one song.

Slow down, take time to enjoy the journey and not just focus on the destination.


  1. Marge Jones

    Love your insights–really get me to thinking!!

  2. Joel Shank

    Very moving. It’s so true that we often miss the purpose of our work in our striving for accomplishments and recognition…that the striving and journey is the relationship building, and the relationship outweighs all other things.

    Great reminder. I was telling my wife about something you wrote one day, and she made me sign her up to receive the blog!