Oh how He loves us.

{For a little background on why we were admitted to the hospital at all, you can read more here and here.}

Warning: this is long.  But I urge you to get to the end.  Because I want you to see the whole picture.  Not just the update.

Our stay at the hospital started off much better than anticipated.

Jilly was content and easily distracted.  Owen napped and was happy.  Crisis averted.  Right?

By the end of the week, everything started going downhill.  Fast.  And I can safely say that it may have been one of the hardest weeks of my life.

Jill had a couple dozen EEG leads glued to her head 24 hours a day…for what amounted in the end to 7 days.  These leads were attached to machinery…which was then plugged into the wall.

Translation: she had a very very small area she could be in.  Pretty much her crib and a small area on the floor.  Back and forth.  Up and down.  For 7 days.

She also had an IV in…and my poor girl has REALLY hard veins to poke.  The first time they tried to get it in, it took five tries (both hands, an arm and both feet were attempted) and a call to a NICU nurse to help.  Keep in mind she is three.  And understands what is going on.  So she is FREAKING out.  As they poke and prod.  Over and over.  (During one of her seizures earlier this year, I actually had to leave the room because they were digging around in her arm so bad.)

Over the course of the week, her IV needed replaced FOUR times.  So that’s something like 20 pokes.  With her flailing and screeching and terrified.

In order to try and get a seizure to happen, we also had to sleep deprive her.  She wasn’t allowed to fall asleep until 11 p.m. and was woken up by 5:30 a.m.  And no naps.  Plus she was off her meds.

Want to break a mama’s heart right in half?

Have your three year old cry and signing “Please” as she points to her bed.

And keep jiggling her.

She would fall asleep sitting straight up.

Part of what made the week so rough was that you have to keep in mind that she wasn’t sick.  She didn’t feel lousy.  She wasn’t lethargic.  So confining her to a small space, hooked up to a bunch of stuff, and not allowing her to sleep meant NO DOWN TIME for the adults.  I foolishly brought a book, a laptop, and my Kindle.  There was not one moment we could relax or take a break.  Every minute of the week was consumed by trying to entertain a restless child…keeping her from ripping out her leads and IV…and nursing the boy.  Did I mention that Jill doesn’t really like TV?

Owen started falling apart mid week.  My mother in law stayed with me and would take him back to a nearby hotel every night (siblings are not allowed to stay the night)…after a couple of nights, he was inconsolable.  He needed his mama.  Napping in the stroller ceased altogether.  He refused anyone but me.  He was hysterical if separated from me for even a moment.  Hysterical.  Like, two hours of crying non-stop and it’s not even getting close to winding down hysterical.

By the end of the week, Jill would throw tantrums due to extreme sleep deprivation (and likely cabin fever/boredom) that made her seem downright psychotic.  She would screech, arch her back, hit, scratch, bite, slam her head onto the floor, and just act like a lunatic…for hours.  I held her with all my might…and even that wasn’t quite enough.  I once had to lay on top of her just to keep her from hurting me or herself.  This would go on for a couple of hours.  Until she literally lost her voice…and fell asleep.

Only to have me jiggle her awake again.

And I would just cry.

Because this was torture.  For both of us.  I cannot convey to you how horrific the fits she threw were.  But I did not recognize my girl.  And it terrified me.  Deeply.

She couldn’t understand why this was happening.  I was exhausted.  Owen was a basket case.  My poor mother in law was teetering on the brink of a meltdown.

And through it all, I was so overwhelmingly thankful.  And guilty.

Through all of this, just outside our room, were dozens of kids that were SICK.

So so so sick.

Cancers so severe that nurses had to wear full body suits and masks just to enter the room.  Because even the sniffles would throw them into near death.

Heart conditions that required multiple surgeries and more questions than answers.

Orders for blood transfusions overheard.

Bald teenagers wandering the halls bored and aimlessly.  With not a single visitor the entire time I was there.

Babies with visible infirmities that I couldn’t begin to guess at.

6 year olds cooing over the baby, and telling me all about her day and how she’s so glad her G-Tube is out because she really hates when they have to put that in because it hurts her.

As I was freaking out with each passing day…each feeling like an eternity…there were kids who had lived in their rooms for MONTHS.  Months.  I was losing it after a handful of days.

A door propped in a neighboring room gave me a glimpse inside.  A young teen.  Maybe 13.  Hysterical.  Screaming and crying.  “Mom don’t make them do that again!  I can’t do that again!  Please don’t let them.  I just can’t.  I can’t do it.”  At the top of his lungs.  His mother, lying on top of him on the bed.  Holding him down.  In a full body hug, her arms and legs wrapped around him, that was two parts physical restraint and ten parts comfort.

A beautiful portrait of motherhood.

I could see the ache in her arms.  Taught.  Every ounce of energy.  Every inch of her.

And cooing in his ear.

That it would be okay.

She was there.

Rocking him.  Even if he was bigger than she.

And he was still screaming.  Begging to make it all stop.

And I wanted to scream and run.  Was this a horror movie?  Because it sure felt like it.

Because it was filthy.  And awful.  And so beyond broken.  And somehow beautiful just the same.

I didn’t know how to feel anymore.  While my struggles in room 3531 were real, and for as bone-numbingly tired as I was, I was the lucky one.  Of that entire floor.  I was the one any of those mamas would kill to trade with.  My girl didn’t even have so much as a runny nose.  And I knew I was going home soon.  And taking her with me.

And poor Owen.  Who after just a couple of days of being mostly cared for by someone else…had me aching for the orphans around the world.  I can’t explain it, but he was just DONE.  He needed ME.  Only me.  And all I could think of was how hysterical he was…not just fussy and grumpy…but OUT OF CONTROL…and how much more hysterical a babe who’s mama would never bounce him on her hip…who wouldn’t be there to kiss his tear stained cheeks…who couldn’t nurse him to sleep.  Ever. How frantic must their cries sound?  I could hardly look at him sometimes for fear of my heart bursting.

Between the sick (and dying) children around me, and the 200 million orphans wailing in my heart, I felt like I was losing. my. mind.

With Disney Channel on loop in the background.

Every day we waited for a seizure.  Every day we prayed for a seizure.

It never happened.

Which was like adding insult to injury.  Waiting and waiting and sleep depriving…for nothing.  I didn’t understand why God would send us here and not give us the information we needed.

By the end of the week, Jill would freak out whenever a gloved hand came near her.  Gloved hands meant more poking.  Gloved hands hurt.  She had wised up.

She was finally unplugged.  I walked her up and down the hallway while we waited on discharge papers.

She screamed and hit me if I got too close to the door to her room.

After one week.

ONE.

Before we left, doctors told me that they didn’t think she was a candidate for brain surgery.  They would review the information they did get, but they weren’t hopeful that she would benefit.  I will know more soon.  But even that news was a heavy blow.

Finally discharged.  I got on the freeway.  At 4:58 p.m.  In Los Angeles.

I tried to figure out what just happened.  Why I was the one who got to go home.  In my big, safe car.  To my big, safe home.  In my quiet, safe neighborhood.  With my silly, yet healthy kids.  To my husband who had prepared a delicious home cooked meal for me.  All of which we could afford.

I sat in what amounted to a parking lot of cars, red tailights taunting me.  All I wanted was to be HOME.  I just wanted to get back to the other half of my family.  I missed them desperately.  I needed my cozy bed.  My strong husband.  The goofy smiles.  Food that had flavor.

And as I grappled with what I had just experienced, and tried to piece together some semblance of understanding of the whole thing, I was on the verge of melting down.  Right there.  In the slow lane of the 405 freeway.

And a song came on the radio.

And I was struck by this:

“When all of a sudden, I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.”

 

As I get older, God’s mysteries are deeper.  More profound.

As years pass, I understand less.  I have more questions.  I am more befuddled.

I do not understand how a mother watches her child suffer, while I live a mostly charmed life.

I do not understand how a child cries with no ears to hear, while my own babes are smothered with kisses.  Hourly.

I do not comprehend how one is given and how others are not.

I. just. don’t. get. it.

I know less.  Not more.

I lean harder on the only rock that can sustain me.

And perhaps that is the point?

Leaning.

Look, I really don’t know what to say at this point in the post.

I have no great epiphanies.  Words seem inadequate.  In fact, they seem downright insulting.

But I CAN tell you this:

My heart aches for the children of this world.  My soul aches for Heaven.

God is good.

Always.

No matter what.

And you know what?

He loves us.

Even if sometimes it doesn’t feel like it.

I know that for certain.

I admit it is likely easier for me to believe that as I drive my kids home, far away from the sterile walls of the hospital.  I realize that praise is more ready at my lips than perhaps if the circumstances were different.

But deep down, I know it.  I believe it.  I feel it.

He is jealous for us.

And He loves us.

And as the years pass, and questions rise, and confusion mounts…I believe that more deeply than ever.

{source}

The Happy Day Project begins Monday.

Perhaps silly and simple, but somehow seems all that much more important.

Love.

 

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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

Latest posts by jeannett (see all)

Comments

  1. 1

    Oh friend…I’m just a mess reading this. In fact I started getting chills just from reading the title of the post. Perhaps my spirit already knew to anticipate good things. A stirring in my heart. Brokenness. Stirring. Tears. All good because they strip me of the shell of false control I love to put on. The bliss of ignorance I love to sit in. Thank you for sharing. :)
    Talysa´s last blog post ..No Make-up, Dishes In the Sink, and Emergency Coffee Dates {InstaFriday}

  2. 2

    Thank you.

    Thank you for sharing your story, your pain, your battle, your hurting, your joy. And your hurting for the other kids in the hospital…I felt all the pain and bawled like a baby. You’ve reminded me that I have so much in my life to be thankful for, so much more than some kids will ever even dream of having.

    How He loves us indeed…my favorite song. EVER.

  3. 3

    What a beautiful, yet sad post. My hurt hearts for you and Jill for what you had to go through. I’m praying you guys get some answers soon.

    And that song? One of my favorites. Everytime I hear it, it just moves me. It makes me realize I will never fully understand the depths of His love for us…at least until I go home.

  4. 4

    Amen and Amen. God is good – all the time – no matter what.

  5. 5

    oh my goodness. what words will really suffice here? I had to stop midway thru reading, get on my face and thank God for every tiny thing I take for granted. through a full-on ugly cry, jeannett, I can’t explain how your words have pierced me. thank you. and I’m sitting here baffled as you are with no answers to all the questions you posed. except that the only answer is Him. ever-increasing, just more of Him. thank you for ministering to us in your brokenness and unanswered questions. that’s the most powerful kind of ministering. blessings and prayers for you and your family.

  6. 6

    heartwrenching and beautiful.
    his love is overwhelmingly enough…
    laurie´s last blog post ..clarification on the ratio change

  7. 7

    Oh my goodness Jeannett. I’m bawling over here (granted, I’m inundated with pregnancy hormones). Having to had done similar things to my Bella (IV’s, confined spaces, ect) my hurts with every description. I hate it. I hate it all! Why must the babies suffer?? Such good questions you pose, and yet, my heart comes to the same conclusions… God is so magnificently good and awesome. I cannot wait for Heaven. Ohhh… I hurt for you and your little girl. Keep on, Mama.

  8. 8

    Yes. I get it. In similar AND different ways. I get the feelings.

    Prayer going out…
    Kerry @ Made For Real´s last blog post ..Game Giveaway!!

  9. 9

    Sometimes the only encouragement I can find in the midst of times like you experienced is “we are not home yet”. Your outlook is beautiful because you are right the bottom line is “he loves us, o how he loves us!”
    Becky´s last blog post ..Uncle Steven

  10. 10

    Beautiful. I love that verse. It is so comforting.
    anne @ anne b. good´s last blog post ..<< my week in review: 10/26-11/1

  11. 11

    This post breaks my heart times a thousand, a few months ago my girl was hospitalized with seizures and had to be sleep deprived and was just horribly misserable for days on end and I felt so much sadness and exhaustion until I began walking the halls and hearing the stories and seeing the sickness and I have never felt more angry at myself for feeling sorry for myself and suddenly the burden of all those children’s sicknesses consumed me and honestly still do, I could not get over the things I saw and the way it broke my heart over and over, but it did open my eyes to the greatfulness I have for the many blessings he has given me, but I don’t know if I can ever get over the sadness I feel for all those children and families. Thankyou for this post friend, love to your family.

  12. 12
    maddalena70 says:

    A very big hug!

    May God be always with you and your family. :-)

  13. 13

    ((hugs))

  14. 14

    “My soul aches for heaven.”
    I don’t think I can begin to even imagine how gloriously absent of all hurt and sadness heaven will be.
    Laura Story’s song Blessings came out on in the middle of a very trying time for our whole family. It’s a long story but that song gave me enormous comfort of knowing that even when, especially when, I didn’t understand what was happening, it made me draw closer to God and long for heaven and that was a true blessing.

    Praying rest for your family this weekend!
    Kelly´s last blog post ..Alice In Wonderland

  15. 15

    What a beautiful, honest, heartfelt testimony of a post. Thank you Jeanette. You are a strong woman, and you know that. Most of all, you are an honest, capable woman, a mother. I’m thinking of you and have been praying for your family since reading post one. You are right, there are so many mysteries and things I find myself stumped over. The bottom line is still the bottom line: He loves us, Jesus died on the cross and we can live away in a place without hospitals, illness, pain, dissapointment, fear, worry…. Thank you for sharing this post with the world.
    creole wisdom´s last blog post ..InstaFriday

  16. 16

    … I’m sorry for spelling your name wrong :(

  17. 17

    beautifully shared, Jeannett. I couldn’t get over the picture of the mother holding her teenage boy down because she loved him. So hard to understand. But treasuring the fact that God understands. That He did that and so much more for His Son. For us. I’m so looking forward to heaven, and thankful for these hard reminders that this earth is not our true home.
    emily hope´s last blog post ..hello monday.

  18. 18

    reading this made me wish I could bring you dinner and cookies. and visit that teeneager who hasnt had a visitor, but since Im in Baton Rouge, I cant do any of that… but wait….. reading this made me realize there are people hurting right near me that I want to keep my eyes open and help. thank you.
    Bobbie´s last blog post ..My November Project: Spread a little sunshine and be nice to others on purpose

  19. 19

    Praise God for all of His goodness! It is so good that He kept you whole during all of this. Thank God for making you such a strong mother and a faithful woman of God!
    Deonte Dawson´s last blog post ..Decent From The Cross

  20. 20

    Yes. Yes. And, yes. You just wrote everything I’ve ever felt. Thank you for putting it so beautifully.

  21. 21

    Hugs and prayers to you and your family. Thank you for sharing this experience. It’s so easy to forget how good we have it sometimes.
    xo
    Amanda @ The Little Giggler´s last blog post ..Dear Hubby….

  22. 22

    Speechless, or rather…commentless? What a beautiful post. I often feel the same way, wondering why some people have to endure hardships that I can’t imagine. We have one day when the kids all have the flu andI think I’m about to lose my mind and then I wonder about the families whose children have chronic or life-threatening illnesses that have them in and out of hospitals. Why does God chose us to favor? I never feel worthy of our blessings and so often, when I meet someone who has been through something painful, they are the most peaceful, kind individuals. Then I wonder, strangely enough, if God chooses to give these challenges to people of the deepest faith. But what does that say about me in that I don’t have these challenges? That God doesn’t believe me capable of handling pain?

    I’m so glad for you that you have returned home and can resume life as normal!

  23. 23

    thank you for sharing your heart! as a mother i can only imagine what that week was like for you. every day i thank god that my kids are healthy. the brokenness that those parents must feel. the pain that those children feel…i cannot comprehend. i also thank you for the song. i was trying to do laundry but wanted to listen to the song so i took my laptop into the laundry room with me. before i knew it my hands were raised and tears were streaming down my face in gratitude of what he has done for me. oh, how he loves us. such a sweet phrase.

  24. 24

    i’m not sure what to say, so i’ll say this…i am SO GLAD He loves us.

  25. 25

    this was so beautiful. and yes, oh how i don’t understand so much these days. and i pray about and yearn to understand, but also know there are so many things that will never, ever make sense to me and i just need to be ok with that. so i smile, thank God daily for the beautiful things He’s given me and know that one day, all these mysteries will be explained to us. & i love that song. love it with a passion that i didn’t even know was possible… glad you’re back home to your family!
    becca @ sewLOVED´s last blog post ..gangnam style

  26. 26

    wow. just wow. that’s all i have to go with my tears.
    rachel´s last blog post ..week 44 in pictures

  27. 27

    “As I get older, God’s mysteries are deeper. More profound. As years pass, I understand less. I have more questions. I am more befuddled.” Yes. It’s the same for me.

  28. 28

    I want to jump through the screen and give hugs. What an ordeal and powerful story and testimony.

  29. 29

    God is good, indeed, in all things! So sorry that you didn’t get the results you were hoping for, but so glad God has ready with other gifts for you.
    ememby´s last blog post ..Tuesday Randoms

  30. 30

    i’m trying so hard to pull together words, but my brain and heart are spinning.
    when we were in the hospital all those weeks with samuel, i saw what you saw and God ripped apart my heart in such a similar way. for me, that was the blessing that He gave me. it wasn’t about why it was us or what the outcome was, it was that He changed me. like…changed my dna kind of change. every cry i heard, every parent i watched, every child i saw- they changed me. it seems completely illogical, but i’ve just resided myself to the fact that God doesn’t work in worldly logic. i think He works in a kind of love logic that we will never ever understand, but that we can feel in our soul if we’re willing to go there with Him. xo
    heather from life made lovely´s last blog post ..Dear October,
    Wowwy wow wow, were you a busy month.  You brought with you Fall Break, my shop…

  31. 31

    Amen.
    Jenny B.´s last blog post ..InstaFriday (on Wednesday)

  32. 32

    I found your blog today, and definitely needed to read this today. Such a beautiful family you have! God has a far better understanding than we do!
    Haley´s last blog post ..Hi Ladies!

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