To the Mamas of Children Fighting Invisible Battles

To the mamas of children fighting invisible battles…

I see you.

I see you struggle to give your child as much of a “normal” life as possible.

I see you constantly second-guessing yourself; am I being too protective? Am I letting him push himself too far? Is this enough support, too much, or too little?

I see your heart’s desire to let your child pursue her passions like the other kids her age, and the weight of having to balance that against what her body can physically handle, and your efforts to teach her to make these decisions on her own.

I see you fight against the perceptions and judgments of others who look at your child and can’t see the whole truth. They see what appears to be a normal, healthy kid, but they can’t see the broken internal systems or the interventions {tube feedings and oxygen and glucose/ketones/heart rate monitoring and multiple specialist physicians and on and on} it takes to keep your child {hopefully} at his baseline.

I see your fear that one day someone will confront you when your child stands up out of her wheelchair to play or accomplish a task, or notice the two of you walking away from your handicap parking spot without her chair. She looks so normal, they’ll think she must be faking or abusing the system.

I see you immobilized by uncertainty at times, unable to plan for summer break or next month or even later in the same day because your child’s level of functioning is unpredictable and turns on a dime.

I see you schlepping your child to and from appointments – physicians, testing, therapies, and treatments, instead of play dates…or whatever it is normal people do to fill their hours. 

I see you spending hours and hours coordinating care – emailing and calling doctors, hospitals, home health companies, and insurers.

I see you fighting for your child; I see you sharing your struggles to increase awareness and advocating for your child in his school, your neighborhood, your state, and your nation.

I see you toss and turn at night, noting each and every ball in the air, imagining all the other shoes that could drop and trying to prepare for them.

I see you helping him do basic self-care tasks that everyone his age has been handling independently for years.

I see you quietly grieve as things are lost or as baselines change, but also see the way you set that grief aside and focus on dealing with the challenges at hand.

I see you researching, learning, and teaching each and every time a curveball comes your way.

I see the indescribable pride that fills your soul when seeing your child break through barriers, thrive, meet milestones, and make dreams come true. Yes, all parents feel pride in their child’s accomplishments, but when your child is fighting invisible monsters, it makes all of those normal victories that much more amazing.

I see you setting aside your plans, both big and little, to be whatever your child needs you to be so he can thrive.

I see you relishing your time “off the clock” and how you work to keep friendships and relationship thriving, because it is impossible to keep pouring from an empty cup…and your people know how to fill your cup well. {If this isn’t true for you, go find some cup-fillers! They are of immeasurable worth.}

I see you stare at your child in wonder at times, overcome with gratitude that she simply exists, that she has made it this far already, and that you have had so many precious moments and days with her. You know better than to take it all for granted. 

I see the beautiful tapestry of your life; brokenness and adversity woven together with strength, joy, unfathomable depths of love, intelligence, and dedication. The dark bits somehow make the bright bits burn so much brighter, the way a setting sun lights a fire in the sky.

I see you because I am right there beside you, experiencing the same kind of moments. This road can seem lonely at times, but there are so many of us living similar lives, walking similar paths. Much of this is true for ALL kinds of medical parents, not just those whose children struggle with invisible illnesses. And today…wherever you are, whatever you are doing…know that YOU are mighty and invaluable and make me so proud to be a member of this tribe.

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Kyla was born in Alaska, but has lived in the Houston area most of her life. She met her husband Josh online when they were in middle school, and they married shortly after high school. They have three wonderful children, Nathaniel {April 2002}, Katie {February 2005}, and Josephine {April 2015}. Katie and Josie both have their own special medical issues and keep life at the Hebert house exciting every day! Katie has a metabolic disorder, suspected to be mitochondrial disease, and a host of other conditions that stem from that. Josephine was born with a congenital heart defect that was not diagnosed until she was almost 3 months old, and was later diagnosed with multiple life-threatening food allergies. In spite of the craziness at home, Kyla graduated from UHD in 2014 with a degree in psychology. She spends her days homeschooling Katie, caring for Josephine, trying to come up with allergy-safe meal plans, and occasionally ferrying Nathan to and from high school events. She enjoys writing, photography, listening to podcasts {mostly true crime}, binge-watching shows with her husband, and spending time with friends. You can keep up with their adventures at Life Is….



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