I come from a large Latin American family. Strictly, we’re something of a melting pot, but we mostly identify with my mothers side of the family. My mom came to the United States from Guatemala in her twenties, met my father, and married him. My father’s side of the family is small while my mom’s side calls anyone who ever stayed at my grandmother’s house a cousin. Any family wedding would require a large hall just for our side to be able to come.
Some years after all of my mother’s four siblings had moved to the US, so did my grandparents. Though my grandfather died when I was still young, my grandmother, (who still mostly speaks Spanish,) is still kicking at 96 years old.
My family had a summer tradition of going on a camping trip to a lake in Northern California. We would take up five camping spots with all of our campers and water toys for a week of playing in the water and soaking up the sun. Everybody would come, including my grandmother.
When Kyle, our oldest, was about two, my wife and I decided to go on the summer trip. Thankfully, my parents offered us a bed in their RV so we could have a place for our son to be out of the dirt if he needed, since he couldn’t walk or get around without his own brand of scooting.
While in the RV one afternoon, my grandmother turned to me and told me the story of one of my cousins. She told me that when my cousin was young she wasn’t walking like me or my other cousins so they rubbed egg whites on her legs and in no time she was walking just like us.
I have to confess I didn’t take this story well. I yelled at my grandmother “My son has cerebral palsy! Egg whites are not going to make him walk!”
I know that my grandmother had the best of intentions. It was probably her way of trying to help. She probably thought this “old country” story would be of some use. But at the moment it was not what I wanted to hear.
My emotional reaction really had nothing to do with my grandmother’s story. It had more to do with what was going on inside me. As a father, I was still in the middle of coming to grips with my son’s condition and what it meant to me. I still couldn’t fully process that my son might never walk. I had no idea what limitations he might have to live with. So many things were unknown that most of the time I probably didn’t think about it for fear of being overwhelmed.
And I know I am not the only parent who has felt this way.
I was talking to another parent whose child has a rare disability. So rare that to get a good diagnosis and treatment options she had to go to a specialty clinic in another state. As she was relaying her story she said that at one point she had to tell the doctor to stop talking because the room had started spinning and she was going to pass out!
At times life can feel like a fire hose on full blast. Sometimes I can handle that, other times I have to step back and catch my breath. For parents of children who have just received a diagnosis or are trying to get a diagnosis, it can feel like more than one hose. It also can feel as if it will never end, but like the bible verse and song that references it, “to everything there is a season. ” Like seasons it will change. Looking back, I struggled with what was going on. I dealt with people and situations from the point of raw emotion at which I was living, but I slowly figured out what I was feeling and came to terms with the fact that our family would not be “normal” and that it was OK. It was a time, not short or long, but just the right amount for me to be angry, to cry, and to wonder why.
It was a season. Like seasons, when winter is over it makes spring that much more enjoyable.
To grandma, I can now say sorry, and the egg thing didn’t work.