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Challenge: Kids with Special Needs

Congenital Heart Defect: The Emotional Roller Coaster

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Sometimes I forget that anything big is looming in our future.

Sometimes I lay awake just trying to breath because it’s all I can think about.

Sometimes I see my child and know she will overcome everything — beginning with the medical difficulties of her infancy.

Sometimes I see my child and just beg and plead she’ll see next year, and that I’ll watch her grow up alongside her siblings.

Sometimes I read stories about victory from others in similar medical situations, and I feel so invigorated for the life of conquering ahead.

Sometimes I see the face of a little one who didn’t make it and I crumble inside… trying to relate to those feelings in case they should ever become my reality.

It’s this ongoing mental and emotional roller coaster… it’s the torment of the mind. It’s trying to decide whether to cling close to every single moment, or to try to shut off the deep rooted emotional ties for fear it would cause me to hurt more deeply.

Here’s the best metaphor I’ve come up with to describe the waiting period for a big medical intervention for my ill child. Do you remember a time when you were in a new relationship? It was a ton of fun and you soaked it all up? But then you realized you were getting very close and the fear of it not working out took over? That’s how it feels to me to have a child with a congenital heart defect (CHD).

From the outside you wouldn’t have any idea my daughter’s body isn’t functioning like it should; she looks like the majority of babies. But inside… it’s a balancing act of time. It’s giving her enough time to grow to optimize a surgery, but not waiting too long because if we did her body would suffer.

Looking at our family from the outside you probably wouldn’t see that daily we envision our child on a medical table going through a massive operation. You wouldn’t see the fear we have about a faulty move of the doctor’s hand, or a sterilization procedure not being followed thereby welcoming infection; yet these are the things I see every day. Sure, I see her smile and I hear her coo too. I see the way she tracks us across a room. I see the signs of her hunger as she anticipates her next bottle. I see the way she warms her brother’s heart and calls out a new beauty in all of us.

But in the stillness, usually, I also see the worst possibilities. I’m not sure if this is “normal” anxiety or heightened anxiety. I really don’t care to label it. Most of the time I have found it really powerful to experience it and talk about it with my husband and closest friends. Some days I wish it would go away. I know there is not one child or human who is exempt from something terrible happening. But when you have something so big in the future that seems so complex, something that will probably go just fine, but if it doesn’t would be detrimental to your family… you naturally think about it more often. It creeps up on you in the night when you’re snuggling. It causes you to lose sleep, to cry yourself into headaches. You have to fight for the ability to bring the type of energy you want to your day.

So to the families who are carrying heavy hearts over the wellness of a child — I see you. I see the way you pull your strength daily for your family. I see the way you balance going on as normal with caution. I see the way you tug back and forth between faith and fear. I see the way you celebrate other’s victories and also feel the sting of someone’s losses. Your feelings are valid; they are raw and real and to outsiders may seem scary and unsettling, but they are yours and they are important.

So if you’re feeling anxious and fearful — here’s an anxious-filled hug from me to you. I’m not sure if we were “chosen” for this but we are in it together.

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