I am a mother of a person with a rare disease.
Last week, my daughter Ilana was hospitalized for a port infection. She has had the same port for over two years. It is accessed daily to provide hydration and for medication injections. Before the port, her quality of life was horrible – she had to go to the emergency room a minimum of three times a week and deal with physicians who didn’t understand her disease. The germs lurking in the hospital were a nightmare for someone suffering with Primary Immune Deficiency Disease.
The hospitalization and fever caught us by surprise. Loni was shaking and freezing and it was such an unknown feeling to someone who never gets fevers that she was truly bewildered. We both did a double take when the thermometer registered at 101.6.
After a few days of antibiotics, Ilana was released from the hospital and went home to her husband, her puppy, Happy and went back to her normal routine.
Or so I thought.
The electric cart telephone call
My phone rang the following night – it was Ilana, in tears and emotional because she had to use an electric cart at the grocery store, because she was too tired and weak to walk. Truly, I was more surprised to hear she had gone out shopping then I was about her using the cart. She called me to commiserate, and I just couldn’t get to that place in my heart. I searched my mind for the compassion file, but I couldn’t pull it up. I can’t remember exactly how I replied, but I know it wasn’t what she was looking for.
My older daughter, Sammy, called the next day to tell me how upset Ilana was about using the cart in the grocery store. I told her I thought it was incredible how she actually had the strength to drive to the store and go shopping, drive home, unpack groceries, and take care of her dog - all while working full time. We both discussed her unbelievable strength and perseverance dealing with two debilitating diseases, yet still managing to have a pretty awesome life. When I hung up the phone, I started thinking about the people in my life and how they deal with illness.
It’s not about the electric cart
My mom has had two bouts of cancer. Both times she opted for surgery to have the cancer removed, and went back to playing her daily golf. When my father had cancer and a very rare disease that left him hobbling, he made a life on the internet. When he passed away this last March, he left behind hundreds of friends who deeply felt the loss. His humor and kind nature is still being talked about months later by people he has never met.
The next night was my husband’s birthday. Ilana came for dinner and cake celebrations. As we sat alone in the kitchen while I was prepping a salad, I told her I had spoken with her sister. And said something along the lines of this:
“I didn’t know what to say to you the night you called me about having to use an electric cart in the grocery store. I know you were upset. I wish I could be upset for you, but I think of you as a superstar. The fact that you get up every day, you get dressed and work full-time, while others who suffer with your condition are on disability and lying flat in bed, is amazing to me. The way you take care of your home and your puppy, and me, when I need you, is incredible. I love how no matter what life throws at you, you stand tall and know who you are. Using assistance every now and then, like a cart - is a tiny piece of who you are as this incredibly powerful women. We are kind of lucky there are even electric carts in stores so you can go shopping!”
As a mom of a child who has a debilitating rare disease, or any disease for that matter, it’s a privilege to behold. The days I have a migraine and want to curl up in to bed, I think about how my daughter had her last migraine for over a month and worked through it. Our children are the bravest. Going through procedures, clinical trials, pain beyond our imagination, and yet still living each day with hope.
God bless them all.