Why I Have to Remind Myself That It's Not Easy Being a 'Medical Mama'

Our daughter is incredible. She’s inspiring. She’s tough. She’s brave. She’s strong. She is an adorable 4-and-a-half year old living with three rare conditions: Goldenhar syndrome, caudal regression/sacral agenesis, and VACTERL. We are not new to the world of disability.

Each new diagnosis brings fear, questions, heartache and pain. And it never gets easier.

Just a few days ago we were blindsided with news that we are still trying to process.

Another diagnosis. This time, it’s her heart.

What was supposed to be a regular check-up, turned into our worst nightmare.

How naive of me to think we could just walk in to that appointment and come out scot-free.
How naive of me to think that we could just have an easy appointment. And how naive of me to think I could handle all of it.

Ashlyn was diagnosed with left ventricle non-compaction cardiomyopathy (LCVN). This condition seems to be wildly different for each person who has it. The doctors even said, “I can’t tell you what this means for your daughter’s life.” He explained she could live to be an adult before intervention is needed, or she could need a heart transplant in two years. He can’t tell us because he doesn’t know. Ashlyn is at risk of cardiac arrest or heart failure, and as I’m typing this, I still can’t believe it. No diagnosis has been so hard to hear.

My mind runs, and my thoughts go from one extreme to another. I remind myself that it’s not easy being a medical mama.

A medical mama knows a little about a lot.

She knows to expect the unexpected.

She’s knows that appointments will run long, and patience will run thin.

She knows the torment of seeing her child in agonizing pain, and at times, being helpless in taking the pain away.

She knows no appointment is “safe,” and that even a regular check-up can stop her in her tracks with a new diagnosis.

She knows how to hold her head high long enough to get to the car, where she crumbles in heartache.

She’s changed her grown child on a public restroom floor, because her child doesn’t fit in a baby changing station.

She’s been judged by “typical” and mothers of kids with disabilities. She doesn’t quite fit in with either, because her daughter “looks OK,” but not quite “normal” enough.

She’s administered endless amounts of medicine, learned how to do catheterizations, and is an expert on everything to do with her child.

She’s perfected the art of covering ostomies and trying to rig medical devices and supplies to get them to work for her child

She spends hours on phone calls, at appointments, planning surgeries, going to therapies, missing work, and working overtime.

She stays up late and wakes up early, researching studies, specialists, information and statistics for each new diagnosis.

And with each new condition, she wonders how much more her child can endure — and how much more she can handle.

She’s felt alone. Isolated.

She’s felt incapable. Out of control.

She’s neglected herself. Perhaps for too long.

She’s felt five different emotions in a single minute.

Yet, she puts on a smile every single time.

If she can’t be strong, who can?

If she can’t hold it together, who will?

A medical mama knows how to fake it until she makes it.

She has absolutely no other choice.

But for her children, she will do it all. And she will do it over and over and over again, because a medical mama’s love knows no boundaries.

If you’re a fellow medical mama, please have hope. Our daughter has defied many odds, and has over come every single one of them. I have hope and faith that she will overcome and defy the odds yet again. Without hope, we are nothing.

In the meantime, find what calms your soul. Find your escape. For me, today, it’s writing. It’s my therapy, and these words are an extension of my heart.

To all the medical mamas out there: you are not alone. I see you. I sympathize with you. Keep doing your best. You are amazing.