By Edward J. Nitkewicz
Recently, I had an opportunity to spend my annual summer vacation with my wife’s family in Cape May New Jersey. It was, for different reasons, the most difficult week of my life. My 14 year old son suffers from autism. Many in the community rail against using the phrase “suffers from.” I however militantly and liberally employ it when my mood dictates. Though I try, I cannot always embrace my son’s disability cheerily with the earthy Lola Granola attitude that his disabilities make him so unique that we are the luckiest family on the planet. His inability to easily express his feelings, to socialize with any other children or to tell me when he feels disappointment, sadness or sheer joy is something he and his parents endure and “suffer.”
I have spent the entirety of the past 14 years developing a different perspective on what “fatherhood” could be for me. It is certainly not what I planned on or prepared for. As I have offered many in my circumstances, “people plan and God laughs.” Sometimes however, I don’t feel like I am in on his joke. Other times, I just don’t have the emotional strength or desire to celebrate my “unique parenthood.” Sometimes, I just feel bad that my son suffers the significant limitations that come with having autism.
Over the past week, I have visited (albeit as a surrogate) the parenthood I always thought I would have. At the shore house in Cape May, New Jersey, I am the “awesomist uncle in the universe.” That does not represent a baseless boast. It is the title on the portrait of me drawn by one of my niece in laws. It is the term used when I take any of three teams rotating throughout the week for the daily $50 “candy run.” It is the battle cry yelled when the “pool fight” to drown and defeat the evil (yet still awesome) Uncle Ed ensues each day at 2PM after the last hot dog is consumed.
Watching seven children burying each other up to their heads in the white sand is unforgettable. Having them teach me how to boogie board “tasty waves” (as Jeff Spicoli once taught us) is priceless. And seeing them narrowly avoid a sugar coma from literally eating a grocery bag of candy every night is hilarious. It is heartbreaking that my son is not right in the middle of the daily blizzard of activity.
“It is acceptable to feel bad for our child, for our family, and for ourselves. The key is not letting it consume and define you.”
It is watching Edward’s cousins grow from babies to tweeners, witnessing them develop personalities and the accompanying “attitudes”, and seeing them move swiftly towards adulthood in a “typical” way, that cause me to experience a complex combination of joy, admiration, envy and pain. Professionals often push parents of impaired children to celebrate their unique qualities. I get that. However, grief requires that we allow for those moments in our life when we just feel sad for what our children aren’t. It is acceptable to feel bad for our child, for our family, and for ourselves. The key is not letting it consume and define you. This week, as I spent a week in a beach house in New Jersey with seven children related to me only through marriage, I was at once as happy and as sad as I have been in a very long time. I visualized what the world would look like if my son, the first and thus oldest cousin, were “typical.”
I am grateful that Edward has so many terrific cousins on both sides of his family. But as I enjoy their company, I can’t help but wonder in my heart which one among them will take the lead in looking out for my son when I am gone. After this week, I am confident the answer is “all of them.” And, I am eternally grateful to them for allowing me to visit the parenthood I once planned to have.