Following is an essay recently written by Breanne, one of Josiah’s older sisters.  She is 18.  Growing up with a sibling with a disability is not a road anyone would choose given the option.  Reading her words, it is evident there is great compassion and growth that results from such an adventure.

I think the most valuable lesson I have learned in my eighteen years of living is that hardship is everywhere, and excuses are never acceptable. It is a lesson I have learned through time, through personal struggles and pain, and the strength I have found in myself to overcome them.

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Josiah is our fifth child.  Even as a baby, he was very different from the others.  Josiah was content to spend lots of time alone, engrossed in musical, light-up toys.  He rarely demanded much attention.  He didn’t make eye contact.  I remember holding Josiah close, wiggling my fingers quickly back and forth in front of his eyes when he was a baby. He didn’t flinch.  He didn’t blink. He just stared.

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We knew before he was born Josiah would have Down Syndrome.  We were prepared, as much as anyone could be prepared.  A woman arrived on our door step when I was 6 or 7 months pregnant.  She came in with her clipboard and official looking papers.  She was from the county.  She sat down across from me.  “What are your goals for your child?” she asked. “To be born”, I replied, truly the only goal I had at the moment for him.

She encouraged me to think beyond his birth.  She helped lay the foundation for possibilities ahead.  We sketched some initial plans.  She assured me others would follow in her footsteps.  Little did I know at the time, the door to our home would quickly become a revolving one.  Or that the initial plans would bcome so labor intensive.  I’m glad I didn’t know at the time.  I might have refused.

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If you’ve followed along this far, you know we had spent much of Josiah’s early days in hospitals. Fortunately he did not have any heart problems which are very common for children with Down Syndrome.

We did however, have the cataract issue to contend with.  The pediatric ophthalmologist wanted to remove it when Josiah was just 6 weeks old.  His lengthy stay in the hospital with RSV however, changed everything.

We waited until he was 9 weeks old and much healthier.  This time our hospital visit was just a one night stay to ensure Josiah had no complications from the procedure.  Cake walk.  Or so I thought.  What I hadn’t bargained on was what followed the surgery.

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Our new room at Rainbow Babies was extremely large. Picture a penthouse suite. O.K. it wasn’t that large, but big enough that we were impressed. Josiah was wheeled in, sleeping in his salad bar crib.  Chandler was placed in baby jail, a crib with metal bars all around. Kind of resembled a monkey cage at the zoo.  No way she was getting out of that contraption.  Good thing too.

Chandler was a feisty one.  Still is actually.  She pulled out her  I.V.very shortly after they inserted it.   She fought the nurses with a strength I never knew the child possessed.  I was told early on they literally drew straws to decide who would be responsible for taking Chandler’s vital signs every few hours.  She was a force to be reckoned with.  The kid was not yet 2 years old.

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