As battles go, this wasn’t a big one. Caleb had been fighting a skin infection with a topical medication but while under someone else’s care, many doses were missed so when I got him back, it flared up with vengeance. Caleb was in pain. That is trigger number one for any mom.
Due to exceptionally high respiratory and flu viruses in our area, the doctor asked us not to come to the office, lest we be exposed to these rampant diseases. She was very concerned for Caleb with this infection and called in a high dose of an oral medication, a much higher dose than is usually prescribed.
The call from the pharmacy came an hour or so later. Insurance wouldn’t pay for the medication. Caleb has Medicaid and private insurance, so this was rather odd. At this point, I was gearing up for a fight. By the time we walked through those automated doors, I was marching with a purpose.
By the time a special kiddo is 18, we parents have been well-trained. Countless IEPs, well-meaning but sometimes unconcerned doctors, hospital stays where orderlies who are just doing their job keep trying to take blood that was drawn an hour ago—these all lead up to a battle mindset. Even when the IEP goes well, even when the doctor sees what you have been showing them, you still prepare for the worst. You never know what waits behind the door.
I carry a binder that is about four inches thick. In it are IEPs, attendance records, medical records, lab reports, psych exams, notes and current school work that Caleb has done. This is my shield. Whenever there is a question of how long a condition has persisted, I have the lab work or the written diagnosis to show the doctor. The binder allows me to be an efficient medical manager for Caleb.
Our pharmacists know us. They know me by voice when I call. They gave us a Christmas card this year. But when we walked up to the counter, I immediately saw the problem. The nice young man to whom I had spoken on the phone was ready to help, but he was a new hire. I quietly asked him if he could tap Ashley, who was working the drive-through window, because she knew the magic sequence to navigate to make Caleb’s meds be covered (legitimately) through the two insurance companies. It didn’t work, even with Ashley’s considerable efforts, so we both agreed to call the doctor’s office the next day.
Caleb and I left with two doses, at least a start to help him feel better. But I noticed as I walked to the car that I slumped. I sort of crumpled into the car seat and felt such defeat. I was suddenly exhausted. I read once that it takes more energy for a boxer to swing and miss than it does for him to swing and make contact. Even though this wasn’t a full miss, it took the wind right out of me.
Every battle that we fight for our children has the potential to fill us with victor’s energy, or to drain us and leave us with battle fatigue. For me, even the good ones drain me. Because we never know how a battle will go, even the small ones, like a trip to the pharmacy, require us to suit up, stand tall and be ready to fight. We never know when the next battle will present itself. We can’t know the scope until we are already in the trenches.
Even though Caleb is the one physically fighting the infection, I find myself limp from worry. Regular days drain me with their typical load of giving medication, bathing, shaving and dressing my son. I keep the house calm and quiet to help keep him calm and quiet. Sometimes even the small battles tip me over and I’m unable to get off the couch for a bit. I am making an effort to take better care of myself so that I can better care for him, and so I am healthy to fight when the battles arise. I exercise. I take Epsom salt baths twice a week. I’m trying to eat healthy food, rather than the comfort food I run to whenever the days beat me up. In short, I’m trying to care for myself the way I care for Caleb. I’m trying to be the healthiest I can be so I can take care of this wonderful kid who needs constant care.
To quote Dwight D. Eisenhower: “In preparing for battle I have always found that plans are useless, but planning is indispensable.” Here’s hoping we all make plans that help our kids.
Neverland Without a GPS 