When Hillary was still an infant and I told people that she was always going to have seizures and be severely delayed in her development, many would advise me not to give up hope and to pray because miracles happen. Somehow, that didn’t seem quite right to me. To me a miracle is most commonly not an Earth shattering, big bang, knock your socks off type of event. For me they are present every day. Some days it is a wonder that I have survived without alienating everyone in my personal universe. Some days it’s that Hillary laughed appropriately at something. Sometimes the right person speaks to me at the right time and makes things go smoothly. The phenomenon of Hillary being like all the typically developing children her age will not be happening.
Coming to acceptance of this was not an overnight process. It took someone inadvertently hitting me over the head with reality to open my eyes. Something such as at 18 months looking at “special strollers” (a.k.a. small stroller-like wheelchairs) with a very enthusiastic physical therapist who was non-plussed by my lack of enthusiasm. I recall asking her how long Hillary was going to need it. Looking back on that I do a mental head slap and a “well duh!” The obvious answer of “until she outgrows it and needs a bigger one” was not something I was willing to entertain at that point. It is a miracle that we were able to fairly quickly accept that particular reality and act upon it for Hillary’s benefit. She is currently in her fourth chair, and we are looking forward to perhaps ordering her fifth soon. Miraculous that we can be “looking forward” to that.
It was amazing to me over ten years ago that we were able to see Anna and Hillary on the same stage together in the chorus. Never had we imagined that would happen when we realized the scope of Hillary’s delays. How could someone who can’t do more than make the most infantile sounds participate in chorus? Due to an open minded and creative chorus teacher adding some small rhythm instruments to the chorus, our daughters were able to engage in the same activity with a group of their peers. Upon that foundation the community built a level of acceptance many parents of children with special needs only dream about. Hillary went on to join a scout troop in town, participate in as many activities as possible on her own terms, “graduate” to adult scout with the rest of her troop, and go on a cruise as the final troop activity. Currently Hillary is attending our high school in town, and is enjoying the experience immensely. I could never have dared dream that any of this would be so. I thought that she would forever be segregated from the non-disabled community both by the severity of her disability and the attitudes of those in charge. Miraculously we have found the opposite to be true.
I don’t know who to credit with the success of our efforts to give Hillary as normal a life experience as possible. It seems likely that we all have played a part. Maybe when we were trying to ask for the miracle of Hillary being “normal”, we were really praying for her to be accepted as she is. Miracles do happen.