No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The road families must travel is often rough in places. And yet, most families find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child’s illness or disability.
Many factors can influence the health of a family including the emotional and physical well-being of the parents. Bills must be paid, shopping, caring for other family members, cooking, cleaning up, it is no wonder that many parents of children with disabilities feel overwhelmed. Marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. In one moment, you are joyously awaiting the pending birth of a much-anticipated child and the next you are filling out disability forms for your tiny baby.
That was the case for our family. Life after Christopher’s birth was one of learning and adapting to a new dictionary filled with medical jargon, conditions, words, and unexpected expeditions. We become collectors of information, joining and creating new groups, meeting people with similar issues and concerns and fighting huge battles for small victories. On awakening each day, issues like daycare, transportation, special education, respite and search for available services are on the forefront of mind. Families quickly develop coping skills. Having a child born with special needs also teaches patience, growth, compassion and understanding. Small miracles that might otherwise have been too busy to notice begin to take the forefront and acceptance, tolerance and mostly unconditional love take the forefront.
The Christopher Smith Foundation, named after a beloved son, brother and friend, exists to recognize the many sacrifices of caregiving families and professionals. We are humbled to do our small part.
This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare—that one grows by suffering. And that too is Jessy’s gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life.
Claire Park Jessy’s mom.