I was spring-cleaning last weekend, which is something that gives me immense pleasure. I know… I‘m bizarre. I start by organizing my home and disposing the things that I hold onto needlessly… and yes, that does mean the red dress that just doesn’t quite fit right, but I still believe that I can magically morph my body into it somehow. There’s a calm feeling when I simplify my life and eliminate the dust bunnies that have now mutated into dust rhinos.
I’m just ended my battle with the closet when I come across a yellow tattered file in my desk drawer. I recognized the untitled file that my mom gave to me when I moved out to California but I had never really looked through it. Seeing I was in complete spring-cleanery mode, I decided to dive in. In the file I found school report cards and other miscellaneous documents, but amidst the notes I found letters handwritten by my parents detailing their concerns about me when I first got diagnosed with an autoimmune disease at age 13.
These notes were written to remind my parents what they wanted to discuss with my doctors at future medical appointments. Just reading the words scribbled on paper I can feel their hopelessness, fear and pain. They were watching their daughter, who was a healthy, vibrant (and of course adorable) little girl, deteriorating in front of their eyes. And there wasn’t a thing they could do about it.
Little did we know at that time I would go on to have 14 surgeries within a 3-year period in my twenties because of a diseased colon and then top it off in my thirties with a degenerative neurological disease, Parkinson’s. Man, talk about the fuzzy end of a lollipop.
It got me thinking about what it was like to be parents of a chronically sick child. What did they go through? What challenges did they face? You see… I only know life as a patient. I have made my way through hundreds of hospital visits and countless procedures. But I always had my parents by my side… even if I was highly drugged and didn’t remember they were there. My Dad would joke that he could put a cardboard cut out of himself in my hospital room and I would think that he was there the whole time.
So I asked them to write me a letter of what it was like raising a child who only knows what it feels like to be sick. I would like to share them with you.
My Dad’s letter:
“Denial is not just a river in Egypt, as the joke goes. It’s also a place parents live busy lives with punctuations of their child’s illness that become more frequent, more compelling. Maybe it wasn’t a cheap pizza that caused her to miss three days of school, three times in a month.
A trip to the pediatrician led to a trip to a rheumatologist who used the terms: R.A., autoimmune, Lupus. Everything was going well, dad thought. He stood on the deck staring into the night sky. Well, parents have been dealing with childhood illnesses for a long time and they had a good specialist-good insurance. They followed instructions. The diet change and drugs failed to return the child to a predictable, happy life.
The surgeries and recoveries began, each one more hideous, each one requiring the whole family to be strong, or at least give that appearance. Tears on the pillow at night told another story. That was a special kind of hell, a special kind of pain. Praying seemed futile, for whatever they prayed for, the opposite would occur. What were adhesions anyway? The mental image of her intestines lying on the operating table as the surgeon inspected every inch, is the stuff of nightmares.
But now the family was introduced to the penultimate affliction, Parkinson’s disease. How would they cope, how would they survive, how would the young lady bear up under the latest curse? Parents try to persevere; try to learn another new medical language; try to consider the patient won’t remember they sat in numerous recovery rooms; try to know when to jump on a plane.
When she got back on her feet, they were amazed to see the conviction in her eye. She would work for other “Parkies.” The cold hand of reality reached in touch her again. This time it would be something called a halo. What a euphemism. A metal frame screwed into her skull to position the brain surgeon as he drilled… drilled two holes through her skull. The deep brain stimulation would give her some years of muscle control. The parents are thankful for that, and yet they know the cosmic calendar is marking the passing of months until the next challenge rears its ugly head. Nothing will change the amazement and love they feel for her. The dad.”
And now my mom’s letter:
“As sports and physical activities became more difficult she” re-invented” herself. She became more interested in music and played in the school band and enjoyed photography assignments for the school year book. This has been our daughter’s forte. You can’t do something anymore???? Then you do something else. (And do it with gusto.) She has continued to “re-invent” herself as different medical issues have challenged her. Little did we know that her diagnosis of Juvenile Rheumatoid Arthritis was just the beginning. Her auto-immune disease cropped up as a number of different “itis-es” that would complicate things from time to time. Conditions such as Iritis (inflammation of the eye), pancreatitis, colitis, and costochondritis. (What the heck is costochondritis?? It’s inflammation of a rib or the cartilage connecting a rib.) In fact one of the “itis-es” got so out of control that her ulcerative colitis eventually was managed by removal of the colon. Although the side effects and inflammatory conditions persisted so did our daughter’s resolve. Throughout the numerous surgeries, procedures, infections, ER visits, and her future diagnosis of Young Onset Parkinson’s, her strength and resolve has amazed us. She could write a book — oh wait a minute — she did.
What’s it like for family members when one of those members has health issues? Well, it’s a good day when she doesn’t call us from the ER. We look for blessings wherever we can find them. She has grown into a strong woman, and it’s a privilege for her father and I to have the Perky-Parkie for a daughter. The mom.”
I always knew that I had amazing parents, but to read their letters just further proved my beliefs… I may have not been blessed with perfect health, but I have been blessed with perfect parents.