A Parent's Perspective: Man I Can Be
Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them)
Most men who find out their wife is with child become excited and start the process of planning and imagining their child's future. We ask ourselves: What kind of person will he be? What sport will she like? What kind of activities will he or she want to do? I was excited, like a child on Christmas morning.
During my wife's pregnancy, I used to sit and talk with the other guys at work and boast how strong my child would be. I wanted my child to be better and do better than me. Who wouldn't want that? My imagination ran wild with aspirations for his future. But sometimes what we imagine and what happens are dramatically different.
At six months old, Nolan was diagnosed with a rare type of epilepsy. This disability requires him to have full-time care. At first, it felt like the world was against me. I felt an overwhelming weight of guilt and frustration with all the special needs my child had. I was sad. I felt lost. And all those dreams of our future activities together seemed to drift into darkness. I was mourning for normalcy I would never have.
Nolan is now seven and in first grade. He is formally diagnosed with West syndrome, cerebral palsy, cortical visual impairment, spasticity, global developmental delay, scoliosis, and hypertension hip dysplasia. He is also non-verbal and fed using a G-tube.
Today, I'm so happy that I have reached a time in my life, as a father of a child with intense special needs, where I am proud of my son. And excited! I feel that he is becoming the person I hoped for and more.
A profound moment that I will remember forever recently occurred.
I was driving back to my house to get my laptop and passed Nolan's school. I saw children all lined up outside gathered in groups, and in one of the groups there was a wheelchair covered in camouflage. In it was a smiling boy—my boy—happy to be with friends outside. This made me very happy and proud. Tears of joy streamed down my cheeks, and I had to pull my truck over to gather my emotions.
Despite the physical pain and frustration he has endured during his life, Nolan smiles and changes people from the inside out. He does not speak a word, but he has friends who like talking to him. People are better because of him. I am a different person because he has changed me.
Through his struggles and sacrifices, Nolan has made the world a better place, and we are blessed to have such a gift in our lives. Although he has changed the world in his own way, he is not here just for others. Nolan is Nolan. He is happy to be himself for his own sake.
I have come to accept the challenges my son has. We look outside the box for activities to do with him. I feel excited about his achievements and for his future. I am very proud of the person he is becoming.
My son has changed me in a way that makes me a better man and a better father. He is the funniest person I know, and yet he does not speak one word. We enjoy all the activities I had hoped for, and he has friends and family who love him for who he is. I look forward to the future.
As the sun rises each day, Nolan and I enjoy the warmth of life. Together.
- Chas Waitt
© 2014 Gary M. Dietz, used by permission. This essay is part of the book and ebook Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them). You can learn more about the book and project at www.dadsofdisability.com.