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When Your Child Has a Progressive Illness: Finding the Middle Ground Between Hope & Heartache

Updated: Apr 10, 2019

Parenting a special needs child. Parenting a child with a progressive disease or diagnosis. Finding balance. Hope and heartache.

Every motherhood journey requires some amount of balance. BUT, this journey has taken balance to a whole new level.

I feel as if I spend most of my days walking a tightrope.

I take a step out upon it and my legs begin to shake with nervousness. I try to maintain my position- my position on this fine line that is perfectly placed in the middle of two very different sides.

Finding true hope. Faith. Parenting a special needs child. Parenting a child with a progressive disease or diagnosis. Finding balance. Hope and heartache.

On one side there is a hopeful outlook- perhaps to a fault.

I view my daughters future through the lense I always have. The same lense in which I viewed her before she was even born. The same lense that I used before her first seizure, or her diagnosis, or any of the other ugly things that promise to follow us here.

I see her life laid out before me, just as every parent does.

I see her as just another kid.

I think of her going to school, making friends, playing sports.

I watch as she rounds the bases, running full speed ahead, the wind blowing through her long blonde pony tail. It’s all so real.

I imagine her first dance, and her first car, and her first boyfriend.

I picture her graduating high school, and going to college, following her passion- whatever that may become.

I think about her getting married, having kids.

I dream of her world as I would my other children—unstained by this diagnosis. Unscathed by the catastrophic medical prognosis that follows her wherever she goes.

I mean, I know. I know she has this syndrome. But on this side of the rope, she’s that one in a million kid.

Parenting a special needs child. Parenting a child with a progressive disease or diagnosis. Finding balance. Hope and heartache.

The one who somehow makes it out. The one who somehow breaks all the expectations. The one who somehow changes the outlook.

And I like it here, on this side of the rope.

It’s nice. This is where I want to stay- always.

Yet, on the other side, there is a truth that I can’t quite shake. One that I wish to deny, but I know I must in some form come to grips with- though I’m still trying to figure out how.

You see, on the other side of the rope there are statistics—the ones that haunt me at night as I lay her to bed. The numbers that beckon for her life far before mine. The ones that so often remind me of the realities that this syndrome brings.

On the other side of the rope there are lists of symptoms and long-term prognosis for the future of a child with this syndrome.

Yes, here I sit back and observe the journey of so many others--- others who I desperately cheer for yet still I watch helplessly as their bodies and brains slowly give way. And, don’t get me wrong, they are amazing and they are strong and they have fought so dang hard. I am proud of them. But, if I'm honest, I don't want my child to be them. I don't want her to have to fight this never-ending battle.

Here my child endures the unthinkable- the making of most parents nightmares.

Here, her diagnosis steals from her. It steals from her body and her brain. Here it robs her of the ordinary things that we so often take for granted. Here, the seizures never stop. Here this disease continues to progress.

Here my heart aches as the realities play out before me—her life now viewed in a whole different light.

And here, I am totally helpless.

SO, I mostly just stay on this rope. This fine line between the two. Though some days I allow myself to take a step in one direction or the other, visiting for a time before recognizing how far I’ve wondered and ordering myself to return back to middle ground.

And as I practice this balancing act I’ve learned a few things along the way.

Parenting a special needs child. Parenting a child with a progressive disease or diagnosis. Finding balance. Hope and heartache.

The first and most important is this:

Hope in ANYTHING on this side of eternity is bound to disappoint.

If my hope for my child’s future becomes rooted in a cure—

If my hope for my child’s future lies solely on a care plan,

Or a medication,

Or a physician,

Or a specific outcome…

I’m potentially setting myself up for heartbreak. Don’t get me wrong, I hold out a little hope in each of the above mentioned areas, BUT at the end of the day, if all these other things fail—I still have hope.

Because true hope is eternal hope- a hope found in a Savior who has made a way far beyond this earthly journey. And so, when our road sways to the one of hardship, I still hope.

The second is it’s OK to dip my toe into one side or the other for a moment. In fact, becoming educated so that I can provide the best life for my child often requires me to do so. This practice allows me to dream on some days, and to mourn on some days, and this journey is often a combination of the two. BUT, I cannot stay on one side or the other for too long.

And that brings me to the third--- my life is best lived in this middle place, even if no one else can understand that. I have to-- do you here me? I HAVE to intentionally stay here. This is my safe place, where I am hopeful and still dealing with the realities of my child’s diagnosis. Of course, like so many others I pray for my child to be healed and healthy and whole here in this life, BUT I also must be prepared to deal with the broken life we currently live—the one where she is not healed.

So my friend, if you too find yourself walking this tightrope… desperately trying to stay in the middle without faltering in one direction or the other, you are not alone! And you are doing it right- as right as anyone possibly could.

Find the path you must walk and stay there.

Put one foot in front of the other.

You’ve got this, friend!

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