Pregnancy is a wondrous time. It is filled with joy and anticipation and daydreams of what is to come. But what if midway through the pregnancy that joyous daydream is interrupted with news of a problem?
My son, Nicholas, had a condition called congenital hydrocephalus which was diagnosed at my baseline ultrasound when I was 21-weeks pregnant. I remember the ultrasound so vividly, and the technician’s face when she realized something was wrong. Cold jelly applied, she started with scanning his body. It was clear that everything was checking out fine – 10 fingers, 10 toes…that kind of thing. Then she moved to scanning his head and the blood drained from her face. She said she needed to step out for a moment and I knew something was terribly wrong. I was there by myself and felt completely alone, terrified and broken.
The doctor came in, and he and the technician started scanning the grainy image of Nicholas’ head stating measurements and medical terms I did not understand. Indeed, something was wrong.
My doctor’s nurse led me into my doctor’s office. He was sitting behind his desk in his dress shirt and tie, no white coat. He explained Nicholas’ condition as excess fluid on the brain and told me that his prognosis was not good. He felt it was best if I was followed for the remainder of my pregnancy by a high risk doctor.
He further explained that congenital hydrocephalus occurs when the small channel in the back of the neck develops too small, a condition called aqueductal stenosis. The purpose of this channel is to allow the approximately eight ounces of cerebral spinal fluid produced each day to escape. Typically, the fluid circulates through the brain, then through the body, passing through this channel. But with Nicholas, the fluid built up and damaged his brain leaving him with significant challenges at a very young age and missing many developmental milestones.
Nick has cerebral palsy, which broadly means damage to the brain. The results of that damage were the inability to walk or talk and also, blindness. When Nick was about three months old, all I wanted to do was curl up in a ball and retreat. I felt confused, overwhelmed and unqualified to provide care for him. I felt completely inadequate to take on the job before me.
But somehow, I don’t know how, two weeks later I woke up, ready for action. I was tired of crying, tired of feeling defeated and ready to move on to the new normal. I knew my life would look nothing like my friends with young kids, but I felt compelled to make life for Nicholas and me the best it could be.
Recognizing that feeling overwhelmed was causing me to be paralyzed, I called on someone who I knew could help me get organized and get going. Her name is Karen, and she was a social worker for St. Joseph’s Hospital in Orange, Calif., the hospital where Nicholas was born.
When I delivered Nicholas, Karen was the most knowledgeable, positive person. She helped me make sense out of the maze of organizations I would need to contact to get Nicholas doctors, insurance and into early start programs. It was clear he was not going to have a normal path in school and instead, it was likely he would be a special education student. Karen helped me make a plan for how I was going to tackle challenges step by step and things started falling into place.
This was the beginning of feelings of hopefulness instead of fear. It was when I started realizing I was going to not only survive this very serious situation, I was going to NAIL IT. I was going to learn how to be a bedside nurse, how to properly lift a disabled person, how to position Nicholas in his wheelchair so he would be comfortable on his ride to school on the bus.
This was the beginning of the new normal, and the acceptance of the new normal.
At that point in my life, I was working at a job managing landscape construction projects. I didn’t like the job, it didn’t pay well, and it was going nowhere. Since I was raising Nicholas on my own (his father left very early on), I quickly came to realize I needed a new plan. I needed three things to happen for myself. I needed to: 1) finish college, 2) find a better job, 3) figure out how to get help.
This became my action plan and it was empowering to have such a purpose for my life.
Am I saying it was not challenging caring for Nicholas? No, it was the hardest thing I have ever done, but it was also the most rewarding – by far. I also was never alone. Since I needed to work to pay the bills, I was so very lucky to have the assistance of some amazing home health nurses who became a part of the family.
Raising him has given me an opportunity to experience life outside the boundary of typical. Raising Nicholas taught me how to view life with a different lens. It taught me how to be grateful and overjoyed for the small things. He taught me how to be tough and strong, stay positive and love unconditionally.
From my perspective, if you are a parent of a child who has special needs, you can do this! Know that there are people available to help; people who care, and whose job it is to connect children who have a disability with resources to help them and to help you raise them.
My courageous and tenacious son, Nicholas, now 22, has taught me more about life than I could learn from a million people. When Nicholas was almost 19, caring for him was getting difficult, so I found an exceptional group home with the Mountain Shadows organization in Riverside. Nicholas now lives in a group home run by the amazing Angel View organization in the Coachella Valley. I see him often. We like to read in the sunshine on the back patio and that gives us both great joy. He’s always grateful, a good hugger and a fine young man. And I’m lucky to be his Mom.
Although Nicholas might not be typically perfect, he’s perfect to me.
Susan Henson of Palm Springs is a Mom, writer and marketing professional. She can be reached at [email protected] or (951) 264.1024.