Recently, I was invited to a 6th birthday for a special boy.
“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.
John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.
John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.
I was called about John to help with information and support.
At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.
However, John surprised us all by getting better and going home. He was tough!
It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.
When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.
John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.
CONCLUSION
When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.
But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.
I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.
I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.
Too often, people assume that a child with special needs is automatically a family tragedy.
The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.
And, of course, faith.
nancyvalko 