In September of 2011, my entire world was shattered when my daughter was diagnosed with spastic diplega cerebral palsy. Those four words were like a punch in the stomach and left me feeling a way I never imagined any doctor would ever make me feel — completely and utterly devastated. I was always afraid of something being wrong with my children, but never did I dream there actually would be something wrong with one of them.
The five stages of grief
After my daughter’s diagnosis I went through something I never expected to. I went through the five stages of grief: denial, anger, bargaining, depression and acceptance. I always thought of these stages of grief as being reserved only for when someone died, but here I was, going through them because of my very much alive little girl. I went through these stages more than once, completing one stage, only to return to another for a second round.
I had walked into my daughter’s neurologist’s office expecting to rule things out, but instead, I walked out with a diagnosis that hit me like a knife to the heart. At first, I couldn’t believe it. Initially, the diagnosis stunned me, but then I started trying to rationalize it. My daughter couldn’t possibly have cerebral palsy. She was bright and alert. She could roll over. She was just a colicky baby. There was no way she could have cerebral palsy.
After I spent a couple days in denial, I got angry. I got very angry. Suddenly, everything in the world felt unjust. Why did everyone else have a healthy baby? Why were there women who smoked, drank and used drugs while they were pregnant who ended up with perfectly healthy babies, while I did everything right and my daughter had cerebral palsy? I became so filled with anger and hatred that even seeing another baby close to my daughter’s age who was doing things that my daughter couldn’t was enough to make me want to scream and storm out of the room.
Next came bargaining. I’m not a religious person. I would consider myself spiritual, but I don’t believe in God or another higher power, just in the idea that the energy we put out into the universe will eventually come back to us. Even with my lack of faith, I found myself praying, asking God, that if he did exist, if he could let me trade places with my daughter. I begged and pleaded with whatever divine being that might be out there, to let me be the sick one, just to make her better. Had I said those words out loud, I’m certain I would have sounded as though I was completely mad.
Depression was a stage that I would visit often. Seeing my friends with their healthy babies that could crawl and walk and were gaining weight was enough to make my cry. Why couldn’t my daughter just stop losing weight? Why couldn’t she crawl? There were some days that just looking at her was enough to make my cry. It broke my heart not knowing what her life would be like or how much her disability would affect her later.
Initially acceptance was fleeting. I would start to accept my daughter’s diagnosis only to find myself taking a step back to one of the other five stages of grief. I’d reach a point where I felt okay and as though I could move, only for something to trigger a setback and I was working through the stages once more. This must have happened dozens of times before I finally reached a point where I truly could accept my daughter’s diagnosis and move forward. The process was hard and painful, but eventually, I reached a point of acceptance and started to move on with my life.
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