By Heidi Fiedler
It has taken me a long time to identify with the phrase “medical motherhood.” I thought it was a label reserved for parents who have children with cancer or a serious physical disability, not us, the parents of a lively autistic boy. Perhaps I was protecting myself, thinking “That’s not me.” But in truth, our son had surgery when he was a baby, we see several specialists at Boston Children’s Hospital, and we have endured some truly grueling procedures, many of them with me in the room, holding him as he cries. The more I realize my experiences are different than most moms, the more I need some kind of vocabulary to explain the difference, even if just to myself.
Having a child with complex needs impacts our lives in big and small ways. One year we celebrated our wedding anniversary in a hospital. It’s always more difficult to find childcare. The list goes on. There are challenges that don’t have easy solutions, and then there are those that should be simple, but are maddeningly complex in our current healthcare system.
This is the story of trying to get our son the medication he needs. It was a long ordeal, but it’s just one example of how life is harder for families like ours.
For years, we cycled through a variety of medicines, hoping to relieve my son’s GI issues, which are common in autistic kids. Twice a day, we squeezed medicine from a syringe into his mouth. Our doctors seemed oblivious to the distress it caused our family, and every morning and night there were tears. When our son learned how to take a pill, he got to try new medications that worked better, and we escaped the horror of forcing it into his mouth.
It makes a real difference. We started at the lowest dose and worked our way up. It still doesn’t feel like quite enough, but we never want to go back. Some months the medication is $60. Other times it’s $25. We know it is necessary. We can leave the house without worrying about how to time everything. We can imagine our son in school.
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At the end of the year, I look back through my notebook, the one where I log what happened each week. I’ve written “This medication is life-changing!” in big letters. Page after page, say “The medicine is working!” “This is amazing!” Triumphant notes from me to me.
A few months later, we have a check-in visit at Boston Children’s Hospital. We hope the doctor will tell us it’s safe for our son to keep taking this new medication. We draw a picture of the pill and make a thank-you card for our nurse. I pack the Yoto cards, fidgets, a visual schedule, and print data for the doctor to review. I straighten my hair, buy a matcha, walk, and do my best to take care of myself, so I will have the reserves to comfort my son, whatever happens. It is the first time we have felt hopeful in years.
We are gone for five hours. I use every trick I can think of to keep us occupied in the waiting room. There are no tests, and we get the all-clear to keep using the medication. It’s not a traumatizing visit, but it’s still draining. After so many awful visits, even a good appointment can feel the opposite of healing.
Then one day, I go to pick up the medication, and the pharmacy tech tells me it now costs $500 a month. No explanation. No guidance. Is there a shortage? I talk to the pharmacist. I call the nurse. I try to call the insurance, but it’s shut down due to a cyberattack. I leave desperate voicemails everywhere I can think to call. I go over my notes and look at my reminders to see if I missed something. No.
Our nurse spends hours on the phone reviewing the options with me, calling the insurance, leaving messages at the pharmacies, and trying to sort out where the confusion lies. Our local pharmacy is understaffed, and they don’t answer phone calls, so I stand in line again and again, waiting to ask the same tech if he can fill our prescription yet. He pretends not to recognize me. Or maybe he’s spent so many hours behind the counter that he truly has amnesia. He tells me the insurance has put a hold on the prescription because they want us to pick up 90 days of medication at a time, instead of 30 days.
We need a new prescription. More calls. Several faxes. More visits to the counter, each one requiring uncommon levels of patience. The pharmacist has no record of the prescription, even though the doctor has sent it over multiple times. At one point I am standing in front of one pharmacist, and my husband is standing in front of another pharmacist, in a store a few miles away. We are talking on our phones, saying, “He’s faxing it right now. It should be there.” “He says it’s not there.”
The 90-day prescription is received by the person who needs to receive it, but the pharmacy can’t fill it because they don’t keep 90 days of the medication on hand. That’s when I learned the insurance actually wants us to switch to mail order — which requires a new prescription. We are down to three days of medicine. We need to find a store that will sell us the medication until we can get it delivered by mail.
Life keeps moving in ordinary ways, but we are trapped, unable to focus on anything else until we get the medication. I am powerless in so many ways, but what I do have is the utter conviction that this must be solved. Nothing about what I’m doing feels loving, but I am doing it out of love. I wish it didn’t make me such a stressed-out, grumpy parent.
“Find a store that has it, and we will go get it. I don’t care how far we have to drive.” I am on the phone with an insurance agent, using a voice my husband hasn’t heard before, wild with fear and determination. Medical motherhood doesn’t define me, yet when we’re in crisis, recovering from a procedure, or banging on imaginary doors trying to set things right, it’s essential to who I am.
The medication finally arrives in the mail. Life is simpler. It all happens so abruptly that I wonder if somehow I made up the problem. But I didn’t, and I know it could happen again at any time.
My experiences with medical motherhood challenge me to stay soft, even as I face what feels like impossible obstacles. I’m not just a mom, but also a sacred witness and advocate for my son. It pushes me to love in ways I never imagined.
There is so much I can’t explain or fix for my son. Many times the only comfort I can offer is promising that one day the pain will pass. I distract him with a snuggle or a treat, and let him feel silly and cared for in deep, life-giving ways. My son deserves to be a kid, carefree, and happy to be alive. And I deserve to delight in simply being his mother.