complicated child

I’ve got a complicated child. In the first few years of Calvin’s life he was diagnosed with ventriculomegaly, global hypotonia, cerebral palsy, hypothyroidism, ocular and cerebral visual impairments, nystagmus, slow gastric emptying and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS.) He’s been respirated, tube-fed, x-rayed, sonogrammed, CT-scanned, MR-imaged and Nuclear Medicine-imaged. He’s had a late circumcision and one eye surgery with a history of urinary tract infections, pneumonia and ear infections, plus he’s been tested genetically and for kidney stones, acidosis and urinary reflux. Calvin wears glasses on his face, orthotics on his feet and diapers on his bum.

All of these experiences have been difficult to deal with. I saw my beautiful infant, so feeble, continue to lag behind as the enormous developmental gap became more and more vast with each year. At times, in the early days, I felt I would barely survive the emotions and the rash of complications we faced.

Epilepsy, however, has dwarfed all of these hurdles combined. Calvin’s seizures have never been controlled and are constantly changing. Numerous medicines have failed him. Two rigorous diets didn’t stop the seizures. Instead, they clustered and burned out of control. Ambulances have carried him away and doctors have intubated him without anesthesia as he screamed in agony. Numerous EEGs have exposed little and blood has been drawn countless, painful times. Drugs inhibit his vision, his strength, his coordination, his enthusiasm, his development and his well being. Seizures continue to rack his brain, impede his development and risk his life.

But somehow, after each new battle, Calvin, Michael and I manage to pick ourselves up and dust ourselves off. Out of necessity and desire we try to lead a simple life. The three of us focus on what we have and how fortunate we are and remain hopeful that Calvin will benefit, one day, from a cure. And if he does, he’ll still be light-years behind all the rest, but at least, for my complicated child, the seizures will be in his wake and infinite possibilities will be waiting ahead.

photo by Michael Kolster