The Absolute Hardest Part of My Daughter's Complex Medical Journey


To my daughter’s complex medical issues,

We don’t know yet if you have a formal name, like “syndrome,” “disease” or “disorder,” or if you’re just a random group of health issues, but I’ll be honest. I wouldn’t really feel the need to call you be your formal name if I knew it because we’re pretty close. Too close, as far as I’m concerned, but close, nonetheless, and so I can drop the formality and simply call you “complex medical issues.”

There’s so much I want to say to you, like how perplexing you’ve been to both my husband and me and even the team of specialty doctors; how frustrating it’s been to have to research you day in and day out over the past seven months so I’d know best how to advocate for our daughter’s care; how hard it’s been for me as a mother to see my baby struggle at first to breathe, to eat, to grow, to reach milestones because of you; to recognize that I can’t fix you.  

Ugh. I. Can’t. Fix. You.  

That’s been the absolute hardest thing for me on this whole journey. As you know, my close friend, I’m a fixer by nature. That’s what I do. Someone needs something, I can get that for them. There’s a problem to be solved, I can help solve it. There’s a situation that needs to be researched, I’ll get to the bottom of it. In the past, if I worked hard enough, searched long enough, I could fix darn near anything. And then in August of 2014, you came along with the birth of our second daughter.

Don’t let this go to your head or anything, but I was scared of you for a long time. From the moment I knew I was pregnant with all three of my children, one of whom I lost in a miscarriage, I deeply feared your presence in their lives. Ultrasounds were met with both excitement and trepidation as I awaited the news that my children were healthy. 

When your presence at Ava’s birth caused her to be whisked off to the NICU, my fear over you was again palpable. You’d somehow taken the life of my son, and now here you were, trying to take my daughter from me. Doctors assured us you were just a mild airway issue, and we soon had our daughter home safe and sound. But as the days and months passed by and you continued to rear your ugly head, my fear turned into dread. Doctor visits turned into tests, hospital stays and surgeries.  

I was afraid. Of you. Of what you were doing to her. Of what you might continue to do to her throughout her life. Of the fact that I can’t control you.   

And then something amazing happened. As Ava has fought back against you and recovered from surgeries and complications, as she’s gained weight and grown in strength, as she’s met her milestones and even blown past a couple, she showed me I have nothing to be afraid of. Figure that. A little 7-month-old baby teaching her old mother she has nothing to be afraid of! 

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You may remain nameless throughout Ava’s life, and we’re hopeful the worst of her days with you have passed, but we know you will still linger in her life, hopefully more in name than in deed. Yet, no matter what we face, I’m no longer afraid of you. I hope you heard that loud and clear.  

I AM NO LONGER AFRAID OF YOU!

Our tiny but mighty little girl has fought you tirelessly over the past seven months and look at her! Despite all you’ve tried to do, she’s survived and is now thriving. You don’t stand a chance against her or her doctors, who have implemented medications and surgeries. And no, I may not be able to fix you, but I’m happy to say that I’m able to research you, to get to know you inside and out and advocate for the tests, medications and even surgeries that have been needed to loosen your grip on our daughter’s life. And if you haven’t figured this out about me, not only am I a fixer by nature, but I’m also relentless, so you don’t stand a chance against me, either, or her father, sister and extended family who love her dearly and stand by her side.

So, complex medical issues, or whatever your name might be, please keep this letter as a reminder of your glory days because they’ve shown to be short-lived. Health, growth and development have replaced you, and hope has replaced my fear.

P.S. You’ve now made it my lifelong goal to help other families experience likewise in their lives and the lives of their children. So when we talk about fear, I hope that you recognize that the tables have now turned. Be afraid “complex medical issues,” be very afraid. As you know, I’m relentless.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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