Monday, December 8, 2014

Me Too, Stephanie

"I remember my affliction and my wandering, the bitterness and the gall.
 I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope:
Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." (Lamentations 3:19-23, NLT)

I don’t know Stephanie very well.

But I think I know her voice. And it sounds a lot like my own in many ways.

Stephanie shared a very raw, very real, and transparently honest expression on Facebook the other night.

That’s why I say I think I know her voice.

Because I can just hear her voice in my ears as I read the words she posted.
    “I hate cerebral palsy. HATE IT!! I hate all that it has taken and continues to take from my child. And most of all tonight, I hate that it has brought epilepsy into our world. As I sit here watching my son sleep after his seizure, it takes me back to that helpless feeling when he was born.

     "The one where I could do nothing for him but watch and pray that he survived. I hated that feeling. And I hate it again tonight. That gut wrenching feeling that literally rocks you to your core and takes your breath. That feeling that speeds your heart and makes you feel like it is going to burst out of your chest...and there's absolutely nothing you can do about it. That feeling that makes your face hot and your hands shake and makes tears run down your face when it's finally over because you're so relieved he's ok again...for now.

     "It's not fair. He has been through so much. When is it ever going to be enough? I know it could be a lot worse. I know I should be thankful for the little things -- and I am. I am all the time. I'm strong, I smile, I adjust and readjust and readjust some more to whatever his CP means for us. I appreciate every single normal moment we get -- usually.

     "Tomorrow, I will deal with it all again and be thankful and smile. But tonight, I'm mad. Tonight I hurt and worry and cry. Tonight I hate CP and everything it means. 
 BUT tomorrow will be a better day...because of all the things CP has taken, it can't take away my hope and my faith that God is way bigger than this and my belief that He's got it all under control. It can't take that away. ”

My heart is breaking for you, Stephanie, and my keyboard is wet with tears.

I hate it with everything in me too.

I get it Stephanie. I feel it. I live it. And like you, I'm raging mad!

I’m a dad of a son with cerebral palsy myself Stephanie. And my son has epileptic seizures as well.

As my wife says, Sometimes my reality is just too real.”

And although my heart is breaking, my hands are clapping with applause for you, and my legs are standing up for you.

Because you’ve been robbed of so many things by cerebral palsy, and yet you still have the one thing God has given you that can never be stolen from you.

Never.  Ever.

And you’re bold enough to proclaim it, cling to it, and stand upon it. You have just won the war in the midst of losing the battle.

You are turning defeat into defiance.

You still have your hope.

And when hope is all you have, hope is all you need.

I have cried in despair, shouted with anger, and screamed with my own frustrations at cerebral palsy and epileptic seizures. I’m with you Stephanie.

And I’ve been robbed of so many of the same things you have by these loathsome afflictions.

But cerebral palsy and epilepsy have also robbed me of many things for which I am actually grateful.

I’ve been robbed from my own pride, selfishness, and greed.
I’ve been robbed from my tendency to put my work above my family.
I’ve been robbed from living for myself instead of in service to others.
I’ve been robbed from only caring about those who are just like me.
I’ve been robbed of believing there are some struggles too big to overcome.
God didn’t take away the struggles, the pain, the challenges—He just simply used them in ways I never dreamed or expected.  
He has used them to teach me unconditional love.
He has used them to teach me the essence of grace.
He has used them to teach me to find joy in all things.
He has used them to show me how to be content in the little things.
Really, you can say He has simply used them to draw me closer to Him, help me understand Him, and make me stronger through Him.

Who knew that out of my seeds of hate for cerebral palsy and epileptic seizures could grow such love for my son and for my God?

I know these afflictions will keep trying to harm us and other families. That’s just who they and what they do.

And our God will continue to redeem all of their harm for His glory.

That’s just who He is and what He does.

So me too, Stephanie.

I loathe and hate cerebral palsy and epilepsy with all that is in me.

But I’m also with you on this point too.

Just like you, I still have my hope.

When hope is all we have, we have all we need.

Pray: "Father our hope in you is the anchor for our souls.  Sometimes your love for us is the only thing that sustains us, and encourages us on this journey. We pray you help us find your purpose in our pain."

--Jeff Davidson


  1. The world would be a whole lot different if everyone opened their eyes, I see the things other parents and people talk about and their reality is funny, what they think is a big deal, while some of us fight inn the night, hoping to see day break, and for me its harder to be around the rest of the world.. but we are stronger, and if any one of us know God its all of us, . God bless you and your babies.

  2. This is a beautiful truth. And while we don't live with CP and epilepsy, we hate autism. And even our "autism experience " is different from so many of our friends. When your life is affected by disabilities, it's different and unless it's your life, it's hard to comprehend. I'm so grateful for where we are from where we've been.

  3. So true Teresa! Thanks for reading!

  4. What a lovely and comforting post. Thanks for adding it to's Tusday special needs link share.