As I would imagine, in thousands of churches on Sunday, the sermon spoke of thankfulness.
And, I would also imagine, that thousands of blog posts this week will carry the same theme.
But…in both of these, in my case anyway, there is a twist.
In church, there was discussion that went something like this:
“If we believe all things come from God…then we must then be thankful for ALL things. Even the bad things…because they are actually good…because they came from God too. So we should be thankful for all of it. Every bit of it.”
(That was terribly poor paraphrasing, but you get the drift.)
On Monday night, our small group deconstructed this further. Stories of being thankful that X happened because it meant that Y happened instead. And Y ended up being way better than if X had.
In my gut churned my struggle with thanksgiving. Driving home in the dark I fought my demons.
How on Earth can I be thankful for Jill’s Epilepsy? Her Cerebral Palsy? I won’t be. I can’t be. There is just no way.
THANKFUL for it???
I mean, sure I can make the best of it.
I can make lemonade out of lemons.
I can do my best to not dwell on it.
I can love her fiercely either way.
But thankful for it?
How can I be thankful for the disease that gives my girl life threatening seizures?
How can I be thankful for the secret terror I have every night that I will miss something in my sleep and wake to find a mother’s worst nightmare?
How can I be thankful for the thing that puts our entire family on edge the second she throws the slightest fever? For it can mean 911 calls, ambulance rides, and dizzying doses of medications. The stomach flu is a BIG deal around here.
How can I be thankful for the disorder that leaves my three-year old frustrated she can’t walk or talk…yet, she understands so much and just wants to do what her siblings do?
How can I be thankful for tantrums of being a toddler trapped in an infant’s body?
How on EARTH can I be thankful for a pair of disabilities that has completely changed our family dynamic and that both subtly and overwhelmingly have changed our lives?
You want me to say Thank You for Epilepsy???? Thank you for Cerebral Palsy????
Just typing those words makes my innards somersault and every cell in my body stand at attention, ready to revolt.
No. I am NOT thankful for it. In fact, I HATE it. I despise it. And you know what? If I’m being honest, I’m really mad about it. And I struggle deeply with bitterness about it some days.
So there. I said it. Out loud. I am mad, God. It isn’t fair. And it pisses me off. I bury my anger down, but now that it is bubbling to the surface, it is here, loud and clear.
I HATE that my girl suffers. I HATE that my family suffers. I HATE that it is part of our reality. Thankful can shove it as far as I’m concerned.
You want to know dysfunction?
Andy and I have each sheepishly admitted to one another that whenever we see Owen looking off to his left for even more than a few seconds, we panic. Our stomachs lurch forward and we find ourselves snapping our fingers and calling for his attention.
Because we have been so conditioned to recognize that when Jill gets “stuck” off to her left, she is having a seizure.
Naturally, when my 4 month old baby sees a shiny object that happens to be on his left side, Andy and I go into panic mode.
It is not normal or healthy that I catch myself FREAKING OUT when even the slightest thing looks askew, because I’m certain the other shoe is going to drop…after all, it’s been a few months since I’ve taken a ride on the AMR Express.
It is not normal or healthy that on mornings that Jill sleeps in a few extra minutes, I don’t want to open the door to her room. Because I’m afraid of what I’ll find.
It is not normal that every. single. morning. I rejoice at hearing her voice calling “Maaaaa!!!!” I let go of the breath I didn’t know I was holding. I wish I was being dramatic about this. I wish I was using hyperbole. But I’m not. Every. single. day. I wake up with a seed of terror in my heart. It is not pleasant.
“She’s okay. Nothing happened in the night. We have another day.”
THIS IS NOT A FUN WAY TO LIVE. AND YOU WANT ME TO BE THANKFUL FOR IT????
I will not.
There is no way in the expanses of the Universe that I can do it.
I will do my best to make do. I will even try really really really hard to not be bitter about it. I will work around it. I will put one foot in front of the other. I will find beauty in the midst of it. I will seek out joy and hope in spite of it.
But thankful for it…no way.
As I drove home from small group shaking my fist at God, telling Him that “hey, you know, I’ll do lots of stuff you say, but not this one. It’s just not gonna happen. Sorry.”
And I heard God’s whisper…not an actual voice…but in my head, out of the blue, this popped into my mind:
I was a crying mess. Why hello Ugly Cry. It’s been a while. Good thing it’s dark out.
Jill suffered oxygen deprivation at some point in the womb.
We don’t know when (well, I totally do but doctors always poo poo me)…and we don’t exactly know why…nor do we know for how long.
All we know is that she did.
In those early days when Jill was only a few days old and still in the NICU, the neurologist told me words I will never forget:
“Her symptoms are classic of someone who suffered a near drowning.” Blech.
So why six minutes?
Because that’s the longest a person can go without oxygen before they die.
After about 5 minutes, there is likely permanent brain damage. (Which she has and is what caused her CP and Epilepsy.)
But after 6 minutes…
That’s a crucial 60 seconds, my friends.
And with that…it all clicked into place.
Thank you Lord for depriving Jillian Mary of oxygen for 5 minutes and 59 seconds.
Thank you Lord for Jill’s Epilepsy.
Thank you Lord for Jilly’s Cerebral Palsy.
Thank you, thank you, thank you!!!!
THANK YOU!!!!! To the moon and back. Times infinity.
Because I love that silly girl with that goofy grin and those dorky chipped front teeth.
And I will love her and be thankful for every single bit of her, yes, thankful for even the hard parts, because it means I get to squish her.
He spared her crucial seconds. He spared us crucial seconds. SECONDS.
Thank you for all of it.
It is an honor.
I’m sorry I’m such a thick-headed student. Someday I’ll figure it out.
But probably not.