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