Josiah (Joey) was born on March 2, 2014, a perfectly healthy baby with ten fingers and ten toes – it was love at first sight. As an only child, my heart was filled with such joy knowing that my oldest, David, was going to have what I had always wanted as a child – a sibling, a little brother to play and wrestle with.
Joey was progressing nicely until about 6-8 months of age. He’d smile, laugh (a lot!) and interact, sit up, reach for toys and feed himself. However, at 9 months he still had a very exaggerated startle response, would not attempt to crawl and had very few vocalizations. That’s when I started my honorary degree in possible causes for developmental delay in babies and toddlers. Hours, I spent hours researching everything form mild autism and sensory processing disorder, to brain tumors, cerebral palsy and various mid-line defects.
When I expressed my concerns at Joey’s nine month check-up, his pediatrician told us not to worry, that he was a big baby and most likely just a “late bloomer.” In hopes of accelerating his developmental gains we enrolled Joey in Help Me Grow when he was 13 months old. The developmental specialist who did the initial evaluation basically told us what we already knew – his social and cognitive skills were up to par, but his motor and communications skills were lagging behind. Having prepared for the worst, I was relieved and felt yet again hopeful that physical therapy would eventually help him catch up.
We knew after the eye exam revealed cherry red spots in the back of each eye that our answers would be painful, but we were not ready to look at our sweet little one and envision losing him. Although the pain of caring for a dying child is more than we can bear or even put words to, we are beyond grateful to God for the enormous privilege he has entrusted us with of loving, nursing, holding and kissing our precious little Joey bear. We will continue to pray for a miracle knowing that with Him all things are possible.