Thankfulness and Why I Hate it.

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.

Why?

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.

NOT NORMAL.

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 cannot.

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:

“Six Minutes.”

Boom.

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.

Thank you.

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.

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

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Comments

  1. 1

    Thank you for your honesty! And Thank you the reminder… It’s do hard to be Thankful for the “bad” but I was reminded this week that sometimes it’s for others that we experience what we do, and that in the end it’s all for his glory. You are such an encouragement to me… Thank you!
    Candace´s last blog post ..Big News {& New Family Pictures!)

  2. 2

    Hmm. Now you know I am not a Christian, but I do like to think I’m a pretty decent person anyway, and I do try to be thankful, and I understand why it is hard. We went far over the “six minute” rule, because my daughter did die, and was resusitated, but not without severe brain damage. I am very thankful that she even survived at all. She shouldn’t have. So, I guess I’ll take everything else with it, because I don’t have to have a party and then visit a graveyard on my twins’ birthday, but instead have two parties!
    Jenny´s last blog post ..Cici’s first haircut. Ever.

  3. 3

    Crying. Thank you for this. This so beautiful and so true and so real. I’m amazed and inspired by you – and by Jilly – and by God’s work through your family. I’m thankful for you – people I’ve never met – and this blog. Thanks, God :)

  4. 4

    i love your rawness…your heart wrenching honesty, your loving heart that keeps running after jesus! cried while reading whole post. your blog wrecks me in all the right ways. i wish we were neighbors!

  5. 5

    Jeannette…
    I have never met you, but I heart you. A whole heckuva lot. Seeing life through your lens is always a joy. Even the hard stuff.
    Know that there are many of your loyal readers {but I’m a pretty lousy commenter} that love you and pray for your family.
    May you have a blessed and THANKFUL Thanksgiving!!
    kimber´s last blog post ..All Grown Up… {not really}

  6. 6

    It’s so good to see that you are openly honest about your anger, even towards God. It’s a good example. For a long time I thought that I wasn’t supposed to be angry, and I didn’t, couldn’t express my anger. I think many Christians have that mistaken idea. But this post is like a Psalm. David expressed many emotions, including anger. But always He ended with God’s goodness. God can’t work in our hearts if we’re not honest with ourselves about what’s in there. I have my own things that I refuse to be thankful for. I don’t think we necessarily need to be thankful FOR everything, but IN everything FIND something to be thankful for. That’s the trick. That’s the game changer, life changer. And that’s just what you did. Thank you for your example.
    Anne´s last blog post ..It’s a Birthday Party for Jesus! (and a story)

  7. 7

    You are amazing. Your family is amazing. Thank you for putting words to feelings that some of us are afraid to speak. I don’t know you other than through your blog but I am always thankful in new ways when I read it and connect with you.

    I pray for your family and hope you know how important you are to many.
    Sandi

  8. 8

    This is one of the most beautifully written things I’ve ever read. It came from a place of raw, broken honesty. My heart was breaking as I was reading your refusals to be thankful. I was thinking “I get why you’re mad but…!!” And then I lost it when I read “Six minutes”.
    Thank you for being vulnerable in sharing this. I can imagine how scary it is to put something like this out there for all of the internet to read but I can also imagine how God is going to use your words to bring glory to Him. And that’s what it’s all about right?
    Kelly´s last blog post ..Officially Five

  9. 9

    This brought tears to my eyes because it is all about perspective, isn’t it? And sometimes we need God to remind us to change how we are looking at things. Thanks for this reminder, and God bless your sweet family.
    mandy @ this girl’s life´s last blog post ..{playing dress up}

  10. 10

    You have voiced something for me that I have thought about so many times I cannot count them all. My oldest son, who is almost 40 now, and a Daddy 5 times over himself, was diagnosed with Type 1 Juvenile Diabetes 1 month after his 9th birthday. 3 months after his father nearly died from a devestating disease, and 3 months after I had given birth to my third child. Living with that disease, constantly trying to balance insulin and food, and exercise sometimes to no avail, was terrifying. Worrying constantly about him having severe low blood sugars, in childhood, in his teens, in his college years, and even now, has taken its toll on his father and me. Not to mention on him, and his wife and his children. Seizures, unconsiousness, blood sugars so low he could have died, a car accident so devestating due to a low blood sugar driving in the middle of the night, racing to the ER to see if he was still alive, its no way for a parent to have to live. And yet, here we are, He will be 40 and I will be 60 next year. And thanks to God Almighty he is still here, and without complications, blindness, kidney failure, and strokes so far. 31 years of JD, can really wreak havoc with a body and yet he is well. Would I have missed having him? I was a child myself when I did. Would I have missed his family, the five little ones I dearly love? Not on your life. I do understand your feelings though, more than you know. I am happy to say I came to the very same conclusion years ago you did. ” Thank You God for my child… however you made him for me”.

  11. 11

    Beautiful post. You are an amazing write and mother. May your family have a wonderful and blessed Thanksgiving.

  12. 12

    And to that whole post I say- AMEN. Now I’ll go off in a corner and cry. Wish you were here to see me ugly cry. Love you.
    Miq´s last blog post ..Printable Thank You Card

  13. 13

    Beautiful post. Thank you for sharing it with us.

  14. 14

    Thank you for sharing, from one mommy scared to open their child’s door in the morning to another. I am not Thankful for the disease but oh so grateful for my little boy and all of his love, laughs and kisses.

  15. 15

    Serious chills. Thank you for your honesty. We are all thick students, oh yes. We are very thankful for all of your precious family!

  16. 16

    You are a portrait of faith. I needed this lesson. So beautifully written. I can’t even begin to imagine what your life is like day to day, but your courage and steadfastness show me that with faith anything is possible. Thank you for always allowing your readers to read the chapters of your life.
    Happy Thanksgiving
    Megan
    Absolute Mommy´s last blog post ..That’s Living {Instagram}

  17. 17

    I don’t get it. I’m not a religious person, lost that many many moons ago. But I don’t judge anyone based on their religion. But I don’t get this post. How can someone say they are thankful for the bad things because it came from god?! Have you ever had a child who was seculy abused? I have! How can anyone ever be thankful for that!!! Not in any universe can someone say “I’m thankful my child was abused”! How can someone be thankful for a rape?! Come on! No god should allow these demons to happen! I understand your thankful for your child and I’m thankful for mine but not the demons that have happened. No way, not ever! I lost all faith in a god who can allow a child such harm!

  18. 18

    Crying..thank you for your transparency and your way with words is truly a blessing! Thank you for sharing that we all struggle with understanding God’s plan.
    Happy Thanksgiving to you & your sweet family.
    xo

  19. 19

    Damn girl you made me cry….being you sounds exhausting – and yet you have such an amazing attitude about it all.
    Many blessing to all of you this Thanksgiving…thanks for the humbling post!
    Kirsten´s last blog post ..Halloween

  20. 20

    This parenting gig is so hard and yet the best thing we’ll ever do, isn’t it? We’ve been through YEARS of medical mysteries with one of my daughters. Procedures, monitoring, more procedures, prodding and needle-poking-its nearly unbearable to watch your child go through such things. Ive wished I could take it all instead.
    Whatever the reason for these things, we’re promised that we’ll not be alone. Praying for you through this season of life. For rest and peace…and some answers for your sweet girl.
    xo

  21. 21

    I held my breathe in understanding throughout this entire post. I could have written it myself…only not nearly as elloquently. Thank you for challenging my heart. I too, have so much to learn.
    laurie´s last blog post ..it’s a love/hate kinda thing

  22. 22

    <3

  23. 23
    Iowa Expat says:

    I’d like to squish you right now. Not in a creepy stalker way, but in a “thank you for sharing your heart and helping adjust my perspective” way. Rock on mama.

  24. 24

    If I could, I would hug you. No words. Just a hug to let you know that it’s ok to be angry, it’s ok to admit it. There is nothing I could say…so I would just hug.
    Love to you and yours.
    Verna Lantz´s last blog post ..World War III

  25. 25

    I love your honest and raw heart. It is hard to give thanks for the hard things in life. But so freeing when we do. I am still learning.
    Barbie´s last blog post ..Gratitude A to Z

  26. 26

    and I’m crying like a baby! thank you for your honesty. so many of us are afraid to put our emotions into such strong words. there’s fear of people thinking you’re not trusting enough! reality is that God knows our deepest anger and bitterness about life… and He just keeps on loving. I find it so healing to rant and put to words these deep emotions! and what a beautiful reminder that there is always something to be thankful for. your daughter is a gem. :)
    Shelia´s last blog post ..Let Us Give Thanks – SAHM

  27. 27

    This bring tears. Thank you for your perspective. Admire you so much.
    Brittnie (A Joy Renewed)´s last blog post ..Thankful 2012

  28. 28

    You have such a wonderful way with words. Every time I read one of your posts about Jilly I cry.
    It is so special when God speaks to us in the most subtle way. His words send us on an emotional tilt-o-whirl and we wonder why we ever doubted Him.
    He is so good. He is using you in a special way through Jilly’s struggles (that have become your/your family’s struggles) and through your delightful blog. You are a beacon of God’s light and I have no doubt that you are touching many people’s hearts with your posts! Thank you for always being so honest and thank you for sharing your stories!

  29. 29
    Jennifer E says:

    Another beautiful post. I talked about your blog in a lesson I gave at my church on gratitude. How I am so impressed that no matter what struggles you go through with Jill you still can say God is good, always, no matter what. You have blessed me by your faith and trust in God. Thank you!

  30. 30

    beautifully written.
    God good and He is there.
    Becky´s last blog post ..it’s just me

  31. 31

    I completely understand what you are talking about! Every day I have to work at being thankful even though our daughter is gone and God has not given us any other children. That has always been my dream for my life, even as a child, to be a mom, but God has chosen to say no. It’s hard enough accepting it every day, but to be THANKFUL? It often seems impossible…Finding some good in it, maybe, but THANKFUL we lost our little girl and haven’t been given anymore, I guess I’ll have to work on that! I am thankful for the precious 16 months we had with our Chelsie and that she came to know Christ in our care. I will always treasure that special time with her. Thank you for the challenge, your openness and vulnerability in this powerful post Jeannett!

  32. 32

    Wonderfully written. Sometimes it’s hard to say these feelings. While we don’t struggle with seizures we have other medical struggles. In and of themselvest they’re not life threatening but complications can occur in a blink of an eye which can be life threatening. It’s exhausting constantly analyzing every mood swing or change in your child. I wait every day for a phone call from school. Half the time I don’t even realize I’m doing it. Most people don’t know that we have constant concerns because we hide them well. I don’t even think our families realize the daily stress we have from just worrying and waiting for another crisis. While I hate what my son has to go through and how his medical condition dictates so much of our lives, I’m determined to be thankful. Some days it’s a real struggle but I refuse to let his disease get the best of us. God is good and he has a plan for each of us.

  33. 33

    Well said and felt… And received.
    Kerry @ Made For Real´s last blog post ..The Night Before…

  34. 34

    Beautifully written. My favorite post to date. What a gift your writing is. Thank you for being real and honest. Your children are blessed to have you as their mother❤

  35. 35

    Wow…what a powerful, raw, honest post. My heart goes out to you in your struggles with your daughter’s medical issues. Your words touched me & make me thankful for my own situation….

  36. 36

    sometimes situations are so hard to understand. in these circumstances I know I can always praise god and thank him for who he is and his character. it never changes. and that is something to be thankful for… no matter what.
    I would like to ask for prayer for my family. my husband Andy had his second brain surgery yesterday. this time it is cancer… and the surgeon said that the prognosis is not good. we are whole heartedly praying for a miracle. after losing Caden and a first brain surgery and then other bumps in life’s road… I really feel we could use a win. a miracle to shout the goodness of The Lord. I know no matter what I will praise god for all he has done and all he is. by it would be really great to be able to praise him with Andy by my side. oh…mor Jesus can come back. I’d be cool with that too.
    thanks Jennette nouveau been so kind to me already.
    cari
    Cari´s last blog post ..After surgery

  37. 37

    I just happened to come across your blog and this post. You did ot give the scripture that your message at church was based on. It’s important to read the Word of God and stand on it as it is truly a gift.
    1 Thessalonians 5:16-18 reads,
    ” Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.”
    Being thankful to God while in my circumstances is certainly different than being thankful for them. With my focus turned toward Christ I can experience His love and comfort which ultimately get me through. Remember Romans 8:28, ” And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”

  38. 38

    I came here from Kellys Korner. I almost didn’t but I am so glad I did. This is the most beautiful thing I have read lately. As parents, we all struggle with things our children do/don’t or have/haven’t. I know that when my son was born prematurely and we fought for 11 months for doctors to believe that I wasn’t an over-reactive mother. Long story short my son was diagnosed at 11 months with 2 hernias, reflux that was so bad that it would come out of his nose, tear ducts, and ears, and aspiration of ALL thin liquids thinner than honey. Today by God’s grace and some wonderful doctors, he is completely healthy other than one hernia that does not seem to bother him. Thank you for your story. I am sharing this with a couple of friends who are struggling right now. I am sharing with another who lost her 6 year old to brain cancer. She has a child that does not have medical needs but then she now has a child with CP. Again thank you.
    Allison´s last blog post ..Day 1: Christmas is upon us

  39. 39

    I just found your blog in my BlogHer sidebar links and I am so glad I clicked through. So so glad. What an amazing testimony and what beautiful, true words. Thank you!

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