I was on my way home from picking up Jack at school, when she called me. She could barely get the words out, “Mom, I need to go to the doctor. My throat is on fire!”
I glanced at the clock. At 6:00 pm we had only two options, the emergency room or urgent care. Both would mean Jack missing his afternoon hydration, a much needed diaper change (Jack, not me) and a reasonable dinner time. I only hesitated for a moment, “I’ll call you as soon as we pull in the driveway. Let’s get you to a doctor.”
Several years ago, Anna and I were sitting on our deck and she asked if I would stay in the hospital with her if she ever had a stem cell transplant. I was quick with a speech that girls don’t get affected by ALD and that she would never need one. She didn’t like that answer and asked again, “Would you stay in the hospital with me?”
At first I thought that she wasn’t listening, and then I realized that she needed me to say the words, “Yes Anna. If you ever need a stem cell transplant, I will stay with you.”
Ever since that day, I’ve tried to remember that Anna needs me as much as Jack does. Siblings of kids with special needs can easily be forgotten. Normal childhood issues can be put on the back burner when complicated struggles can land their siblings in the hospital or worse. Although one might guess that these siblings of children with special needs would resent or rebel against their role in the family, I’ve found it’s quite the opposite. Overall, these kids are a remarkable lot – sharing qualities like independence, strength, compassion and a wicked sense of humor. As strong as Anna is (either because of our family or despite it), when Anna’s voice breaks, I know that I need to listen.
Once we were on our way to the urgent care, Anna seemed to relax knowing that the doctors could help sooth her aching throat. As we walked into the waiting room, her focus became less about her and more about her brother. Her major concern was that Jack’s jeans would fall down. Jack had been sent home from school in “loner pants” a size too big (accidents happen). Anna is accustomed to the stares our family gets when we’re out in public, but she wanted to avoid any chance that her older brother might moon everyone in the waiting room. I did my best to register Anna and deal with the copay while holding Jack’s belt loop.
Anna is a fourteen year old girl who knows more than most people twice her age. Words like adrenal, myelin and chimerism are common at our dinner table. She knows how to give her brother medication through his g-tube and has even helped me change the tube. She knows the names of the countless doctors in her brother’s life and that our family occasionally needs to stop everything to deal with a crisis. She knows that sometimes her parents are too tired or preoccupied to help her with homework (not that we’d be much help). I just hope that she also knows that no matter what, her family is there for her too and will always do our best to keep her brother’s pants up.
Love you Banana, Mom
Jesse- as usual, your story touched my heart. It seems Ana is as beautiful and poised on the inside as she is on the outside.
Jesse- as usual, you touched my heart with this story. It seems Ana is as beautiful and poised on the inside as she is on the outside. -phyllis