Being a Parent with Cerebral Palsy
Every morning I say two prayers. It isn’t normal for someone in my position to recite either one, but I’ve never been described as normal.
The first, traditionally said by addicts, is the Serenity Prayer: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.” The second, traditionally said only by women as part of the Jewish morning prayers, is, “Blessed are you Hashem, our God, king of the universe for having made me according to his will.” Together these prayers remind me–a person with cerebral palsy–to be proud of who I am, while accepting, but not diminishing, my challenges.
There were plenty who didn’t believe I should marry and still others who were convinced we were incompatible because Emily can walk without assistance. So I shouldn’t have been surprised when, told that we were expecting a baby, our friends and family asked if we were getting another dog. Some reacted with shock even after seeing the ultrasound on our refrigerator. Nor should it have surprised me when, walking on the sidewalk in midtown Manhattan, an acquaintance of Emily’s noticed she was pregnant and asked, “Who is the lucky father?” Pointing to me, Emily said, “My husband, Jason.” To which the acquaintance replied, “No, really.”
God, grant me the serenity…
Much is written about altered expectations of parents after a child’s disability diagnosis. I found I needed altered expectations as well after finding out I was becoming a parent because of my disability.
At birth, Ruby didn’t cry right away. He was taken away quickly–neither Emily nor I were able to hold him–and hooked up to machines to help him breathe. After he was taken to the neonatal unit, all I kept thinking was, “Does he have Cerebral Palsy?” Despite the pediatrician’s reassurance, when I saw him hooked up to the machinery all I saw was that picture of me in the neonatal unit 33 years earlier. Fortunately, the machinery was removed only a couple of hours later at which point he was breathing fine. It wasn’t until then that I let my fears, in part driven by my experience living with a disability, to subside. I finally saw my son for who he was: a person, a beautiful, amazing, little boy. My son.
Coming of age at the beginning of the 21st century, I’ve always believed that both parents should share parenting responsibility. A good father, I thought, needs to be active, present, and involved in all aspects of child rearing. At 2 in the morning, when the baby needs a diaper changed, parents should alternate that responsibility so neither is over burdened. If one parent needs to help with an ailing relative, the other should step up.
These are great ideals, but as a parent with Cerebral Palsy whose difficulties with balance and hand-eye coordination make it unsafe to change a diaper, I can’t share that responsibility nor can I be alone with our son, Ruby, for more than three or four hours consecutively. I also currently am not comfortable being alone with Ruby outside our home due to the larger number of variables impacting our safety beyond my control.
Most parents make decisions based on what’s best for the child. Our logistics are much more complicated. We need to consider my limitations as well. We chose to give Ruby a pacifier, in part, because I could give him a pacifier when he cries. We chose to minimize the times we would pick him up and walk with him to soothe him when he was younger because I could not do so. We chose not to teach him that things like crutches and leg braces were off limits and bad because they are a part of our life. While it sometimes backfires–like when he takes them across the room–he also tells me he wants to go somewhere by bringing them to me.
Milestones, which are exciting for any parent, are especially exciting for me because many are developmental milestones that didn’t happen for me until later in life, and some I have yet to reach at the age of 34. For example, kneeling at our ottoman, Ruby re-positioned his legs into a half kneel, which is easy for most people. For me, however, it’s still impossible.
Then there was walking. Like me, Ruby began talking relatively early, but was slow to walk. Unlike me, he possessed the ability to walk on his own, standing without assistance and walking with minimal assistance at the appropriate time. Yet, he consistently seemed afraid to take that first step, so he would use my crutches to hoist himself up, leaving me stuck in one place and unable to move for fear of causing Ruby to fall. At other times he attempted to use my crutches to help him stand and walk even though I was not holding them. The fact that they are twice his height did not help in this endeavor.
Emily and his pediatrician were convinced that the delay was because I walked with crutches. This was particularly difficult for me until he began walking. In the end, my disability has increased my anxiety but also increased my sense of awe, joy, and appreciation as my son develops.
I have difficulty accepting that we parent differently because of my disability. I sometimes question the parenting skills I have by focusing on what I cannot do. However, every morning when Ruby wakes up and yells, “Daaa!” despite the fact that nine times out of 10, Emily gets him out of his crib and not me, I am reassured that I am still a loved and wanted parent. It’s then after he calls for me–and I say those two prayers–that I realize I’m more than a collection of “cannots.” While I’m still improving, I now believe that good parenting involves being active, present, and involved to the best of the parent’s ability while being realistic about expectations both for yourself, your child, and his other parent.
God, grant me the serenity.