Crazy Schedules

By Sandy on April 5, 2011

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.

Cataracts and Contacts

By Sandy on March 30, 2011

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.

Chandler’s in Charge

By Sandy on March 29, 2011

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.

Hospital Happenings

By Sandy on March 29, 2011

When Josiah was barely 2 weeks old he was transferred from a small county hospital to a large city hospital, Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Josiah had RSV and was not doing well. The difference between the 2 hospitals was astounding.

Sleep…or the lack there of

By Sandy on March 28, 2011

When I was younger, I used to think it would be so amazing if we didn’t need sleep. I used to think about all the things I could do with that time. Sleeping seemed like such a waste. Why not do something productive, something useful instead of resting for so many hours every single day.

I think God was preparing me, even at that young age. He knew Josiah would be in my life. He knew Josiah would be extremely active. He knew Josiah would not require much sleep. He knew Josiah would be awake many hours at night. He knew Josiah would be awake many hours, most every night. He made him that way.

If Josiah were older and capable, he would be the perfect mid-night shift worker.