Even the experts don’t know what a child with disabilities will achieve. Guest blogger Kimberly Drew and her husband Ryan continue to watch their youngest daughter with special needs surpass the predictions of wise and well-meaning professionals. Today, Kimberly tells the story of one such event.
Even the Experts…
When Ryan and I were at the beginning stage of adopting our baby with special needs, we were told a lot of different things. Every scan showed something unusual, and we were told “normal” was out of the question for her. We were careful to listen to each doctor and specialist, but we also believed prayer and love can make a difference.
One of our first shocking experiences came from a resident at the children’s hospital while Ellie, the baby we were adopting, was still in the NICU. Because this was not a planned adoption, we traveled across the country every weekend to see our baby. During the week, her birth grandmother and my parents checked in on her regularly.
Like any newborn, Ellie slept most of the day. However, she was also heavily medicated because she was going through drug withdrawal. The result was a rarely awake baby who was tube fed. We worked with the pacifier every chance we got, and we kangarooed every minute possible. But there was very little chance to work with her on oral feeding in the NICU, so she came home with a feeding tube that went through the nose.
During the final weeks of Ellie’s NICU stay, a resident popped in the room to discuss the feeding tube with us. She worked in a clinic with children who have special needs. She was an expert in this area and told us we should consider having a g-tube placed in before Ellie left the hospital. The expert clearly said that “these kids will never….” I was in shock! Why would we do this when we had rarely had a chance to work with her on oral feedings?
I went to the chapel and sobbed hysterically. Then I came back mad and determined. Even the experts couldn’t stop me from trying.
Ellie was discharged to the care of my parents and her birth grandmother. Thankfully my mother was as mad and determined as I was while we waited for legal approval take our daughter across state lines. Mom’s determination meant that Ellie was off of the nasal tube before we ever took her home!
Ellie’s 3 1/2 now. I will tell you that feeding has been a major issue since day one. With her diagnosis of cerebral palsy, feeding will most likely always be an issue. But, we are determined parents! We continue to consult with several specialist to address her nutritional needs, to try and get her off of the bottle and formula, and onto regular food.
Our most recent success, which even the experts couldn’t have imagined, came at a pancake house in Cape May, New Jersey. Ellie was fussing for a fork. When I was distracted, she slipped the fork off the table and stabbed a piece of pancake. I turned around in time to see her putting pancake into her mouth!
I had to stifle a scream so I didn’t scare her. We ignored her, watching furtively as she went back for another bite. I burst into tears of happiness. In the back of my mind, I heard that resident with her “probably nevers” and I laughed to myself. Even the experts don’t know it all.
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