What I’ve Learned From the Reminders of My Child’s Chronic Illness
Every now and again, there’s a reminder. Not a prod or a gentle poke, but an immediate realization that there are no guarantees. There is no foolproof plan. Sometimes, there are no answers.
It always catches me off guard, the reminder. We settle into our routines, live our daily lives and tend to it as we should. Drop the kids at school, pack the emergency meds, go to work, make dinner. It blends into the background like white noise you can’t shut off, no matter what you do, lost in after-school tennis lessons and Saturday morning cooking classes.
And then it’s shattering, announcing itself furiously as I hold her hand in the ER, praying she survives the crash. It’s loud and unruly and in your face, reducing you to tears before you pick yourself back up, determined. Harder around the edges. Stronger on the inside not by choice, but for the sake of her survival.
You struggle with it, refusing to let it define your child, your family. You eventually accept it, live with it and learn to accommodate it. It’s only a diagnosis, after all.
I went to school for economics. We studied probabilities, opportunity cost and utils, the hypothetical measurement of satisfaction.
What have I learned since my daughter’s birth? A diagnosis will cost you. The opportunity to watch your child live an innocent, carefree childhood. The probability your child will live a full and healthy life with zero complications. The satisfaction of good health.
No one talks about how your family will be treated post diagnosis. How you’ll look up and your support circle will either be gathered around you or they won’t.
No one talks about the miracle friendships that materialize from seemingly insignificant interactions to stretch across thousands of miles and Wi-Fi connections, day or night.
No one talks about the frustration that comes when a diagnosis fails to reveal itself, leaving you chasing vapors and harassing specialists.
You can’t fight the enemy you don’t know. But you continue to build the army. Family, friends, school nurses, pediatricians, priests.
She is a reminder all her own. Of strength, of passion and of the determination. She rises every morning to wring every util possible out of her life. She is grace. She is love. She is more than her diagnosis. She is mine.
Eden Lord is the Founder and CEO of My City Med, an online medical community that curates the best available health and medical resources by diagnosis. She is a national advocate for rare disease patients and also helms a non-profit organization for kids and families impacted by rare disease and chronic illness. She lives in Kansas City with her amazing husband and three adorable kids.
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