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Do I Fight to Save My Child's Life, or Fight to Let Them Live It?

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As a parent of a medically fragile child, you will need to make a lot of decisions. Some are much easier than others. The one I struggle with the most is letting my daughter out of her “bubble” to enjoy life. I feel a lot of guilt when thinking about this, because my natural reaction is to protect her, and keep her in a bubble.

You see, a year ago I watched my daughter stop breathing and turn blue. By the grace of God, and the quick thinking of my husband and I, we were able to bring her back before paramedics arrived.

I saw fear in her eyes as she gasped for air — in my mind I saw, “Mommy, save me.” This is
not something that just disappears from your mind one day; it becomes a fear that can haunt you forever.

I’ve tried to bury the fear, not too deep though. Sometimes fear can be your ally too. So, I’ve buried it just enough to remember how fragile her life is, so I don’t become reckless — but also just enough for it not to hold her back from enjoying life.

What was my turning point that made me decide to give in a little and let her live life? Before my father passed away, someone who fought a courageous battle of his own, he said one simple thing: “Let her live life so she knows what it is she’s fighting for.”

Those words have stayed with me and I’ve thought a lot about it. My daughter is very much alive. She’s alert, she’s playful, she just wants to do what other kids do. There is nothing wrong with her cognitively. So, how do you deny her those things? Her life will be different and it will be hard, but I want her to continue to fight for it. I’ve realized that by keeping her in her bubble of safety, she will never experience the joys that make us want to fight for another day.

It sounds like an easy choice and the right thing to do to, to just let a child live life. But when you have a medically complex child, the consequences of the decision you make can sometimes mean life or death.

If your child could talk, what would they tell you? That they want nothing more than to be treated as a normal kid? Or would they say, “Be safe mom, I just want to spend my life in my room home with my family.”

I’m sure they never want to go back to the ICU, which they have spent a lot of their life in. But if they are already enduring so much discomfort and pain, doesn’t it make sense to bring them the joys in life too?

Some days I make decisions, where my fear stays hidden just enough so I will give her all life has to offer, because I will not let this disease define her or hold her back.

And some days that fear finds its way back out, and I want to just hold her in her room and shelter her from the unknown.

Some days, all we can do is our best.

So I’m trying, hoping with each new day I can bury that fear a little more so can I continue to let her enjoy life.

After all, I want her to know what it is she is fighting for.  

Originally published: June 8, 2019
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