Cancer

When Your Child Has An Invisible Diagnosis

How many times have you heard, “Oh my, you wouldn’t know she’s so sick just by looking at her.”  Even though there’s good intentions behind it, it still gets under my skin. People can’t tell how much we suffer when we have a life changing illness affect our family, and believe me, it’s not that I want your pity.

Just look at it through my view.

When my daughter, Lyla, was diagnosed with cancer at age 1, she got sick really quickly. It was noticeable, she dropped almost 10 pounds in a matter of weeks, she stopped all toddler play activity and wouldn’t eat a thing. But not many people saw this part of our journey. After starting chemo, she put up a good fight. We plumped her up with a g-tube and started growing a little peach fuzz on her head. You couldn’t tell Lyla was a cancer patient fighting for her life with those chunky cheeks from her tube feeds and (not so often) bursts of energy. People looked at her and commented how great she looked… so what was the problem?! On the outside, she looked just like any other child, playful and happy. On the inside, it stings because you know it’s far from the truth.

I was okay with people not knowing for the most part, but sometimes I did find myself thinking, “Can they tell? Do people wonder whats wrong with her? Do I tell them or wait to be asked?” I wasn’t trying to hide anything about my daughter’s battle with cancer but when they assumed she was “healthy,” it irked me.

When you tell me “but she looks great, so strong, she’s doing so good!” I would agree with you. But on the inside, all I thought was not knowing what tomorrow would bring, knowing she just threw up her food and has nothing in her stomach. Thinking of the medication she has to take that will make her feel not so “healthy” for a few days. That was the negative side of cancer that lived in my head but would never come out because to the world I shouted Yes! She is doing great, everything has been going as planned.

But what does that mean really?

Maybe it means that she made it through another round of chemo and only vomited for a week after. Maybe it means she only lost just a few pounds this month, or she actually ate a few bites of real food, or she finally didn’t get a fever for a few days. Maybe when you said that I couldn’t take her anywhere, and had to keep her away from other children because they could get her sick. And no, not toddler sick, hospitalized sick.

When you sit there and tell me she doesn’t look sick at all, I smile and accept your well meaning compliment. But my insides tell me she’s not great, and what you see is the best of her. No one could see how weak she was when she stayed home, or her insides getting eaten by cancer. They couldn’t see the lab work showing her weak immune system. They saw how strong she was because we kept her that way. Her cancer sometimes felt invisible to the world because all they saw was were her good moments. So if you’re wondering, that’s what great means in our world. Her health issues were invisible to everyone that looked with only their eyes.

But they weren’t invisible to me.

One year after her tumor resection surgery, my daughter is a cancer survivor. She is a happy, active and smart little girl. The world of cancer will never be far from my mind, the smallest things, like a simple stomach ache, remind us of our journey with her. So when you meet someone with a seemingly invisible diagnosis, remember there’s a whole struggle you don’t see. Let this remind you, there is always a lot more to their battle.

About the author

Hey Little Fighter Blog

Work at home moms to our little fighters. Carla lives in South Carolina with her husband and 3 year old daughter ,a survivor of childhood cancer. Michelle lives in Florida with her husband and son, a heart disease fighting, g-tube wearing 4 year old.

We began our journey as best friends years ago and after all life has handed us, we decided to start heylittlefighter.com together. http://www.heylittlefighter.com/

Join us as we share our experiences as mothers of children who battle life threatening diseases without losing our sense of humor and personality. As friends, women and mothers, we’ll give you strength and motivation to push on. It’s our passion to empower you to be a voice for both yourself and little one.

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