Thursday, August 21, 2014

Evelyn got Shingles…and I got PTSD

My journal of our journey.

'When I discovered your words, I devoured them.
They are my joy and my heart's delight, 
for I bear your name,
O Lord God of Heaven's Armies.'
Jeremiah 15:16

Day 1 (Thur)
Sometimes they wake up in the night. Any one of the girls. Shoot, sometimes I  wake up in the night. So this started out as nothing unusual.
It was a Thursday, she came downstairs around 1:00 or 2:00 in the morning and was crying beside my bed. I pulled her in beside me and snuggled against her before I even knew which one of the girls it was. Turns out it was Evelyn.

She said her head hurt and I murmured 'I'm so sorry Baby…' and I fell back asleep. But after she had said it another few times and really seemed to be bothered, I got up and found some Children's Tylenol. I told her, 'You'll feel better soon. Try not to cry. It will make your head hurt even more.' The Tylenol did nothing to ease her pain. The day before, she had been swimming a ton, had a typical active day with tons of exercise and playing outside in the hot 90-something degree heat. I thought of myself and headaches that I get when I am dehydrated. So, I got her a huge water and encouraged her to drink it every time she cried throughout the night. She drank the water, sweet baby. She cried and kicked and thrashed in the bed all night long. I figured she was having bad dreams, but it was so much more than than.

She raked her fingers through her hair. She said it was itching and burning. She was so uncomfortable. It looked like misery. But all was located only on one side of her head. The pain. The burning. The itching. All in one location.

When we got up the next morning, she had drunk so much water like I'd asked her to that she'd wet the bed. But she still had the headache. I gave her more Tylenol and cluelessly asked if she wanted to go to swim team practice. She said 'No way, I can't'. She's my trooper, so I knew she wasn't better. Brian took Carlisle and Vivian to practice and it was just me, her and Baby. She was rubbing her head and constantly telling me how much it hurt. After an hour, I told her we needed to go pickup the girls from swim team practice. She was so disappointed that we had to leave her cozy spot on the sofa. She got in the car and laid the seat down. When we pulled up at the pool, she asked me to please tell the girls that her head still hurt and for them to be quiet. She put on a pair of my sunglasses.

Sadly, after that, we headed to the gym. I had to sub a class. As the girls and I walked in, she and Baby sat side by side in the stroller, holding hands. She begged me not to take her to the childcare area, saying it would be too loud. During the 45 minute class, she sat in my managers office, in the stroller, with the lights off.

I continued alternating giving her Tylenol and Ibuprofen. She was in horrible pain. Always looking miserable. Not complaining, just explaining that she did NOT feel good. The medicine was a joke. It never even began to touch the problem. I was already traumatized. I called and talked to our pediatrician and explained her symptoms….headache only on one side of her head, pain behind her eye, sensitivity to light and sound, itching and burning on the head and none of it responding to pain meds. He told me that it absolutely concerned him and to come in immediately.

I put the baby down for a nap, turned on a movie and left the girls with a friend who had come over. Evelyn bawled all the way to the doctors office.

He examined her. Nothing looked unusual except a slight ear infection on the same side that her head hurt. So he prescribed her a pain killer and antibiotics for the ear infection. She cried all the way from the doctor to the CVS. I was dying to give her the pain meds. I just knew it would give her head relief and then we could get past this. But the drugs weren't ready when we got to the CVS. The Pharmacist at the window of the drive through commented that Evelyn didn't look well and that she would hurry to get the medicine ready quickly. I took her home and laid her on the sofa. She was miserable. I asked my friend if she could stay a few more minutes and ran back to get the medicine. Somewhere in here and I can't remember when, I talked to Brian. I explained all that was happening with Evelyn. He said he was having a crisis at work, a missing bank bag from the week or two prior. He said he would be working late.

I gave her the pain medicine, she found so little relief. I was amazed. And scared.

That night, I laid her in my bed. I was nervous to leave her alone. I told Brian that I would sleep with her. He had to work, so he slept upstairs in the guest bed.

The night went just like the one before. Only it was getting progressively worse. She was screaming in pain. Terrorized by the pain. All through the night, eyes wide with horror, she would grab my shirt and ball it up in her fists and shout in my face, 'HELP ME MOMMY….IT HURTS SO BAD!!!!!!' She even pulled my hair. 'MOMMY!!!! HELP ME!!!!' I think she was just trying to find something to hold on to. She reminded me of a woman in labor. The pain laughed at the pain medicine. It did NOTHING to help her. Nothing to ease her pain. I was living a nightmare. I would say, 'I am so sorry.' I tried a wet cloth on her head. It was just an irritant. I tried rubbing her back. It was like putting a bandade on an amputee. This pain was WAY out of our league. She was completely inconsolable. I sat up in bed, pulled her into my lap and told her, 'I wish it was me'. I told her, 'I wish I was the one with the headache'. And here is her response...

'No Mommy. I am glad it is me. I would NEVER want you to feel this way. I would never want you to hurt this much. Especially since you are pregnant.'

She cried. I cried. I asked her if she wanted me to pray. She always said 'Yes'. I would wrap my arms around her and I would pray that God would protect her, take away her excruciating pain and itching and HEAL her. Tears would stream down our faces. And then she would continue to scream, cry, and writhe in pain all night long.

Headaches go away. But that was just it. This was NO HEADACHE. This was something WAY worse.

How do we get through THIS?

'Call to me and I will answer you and tell you great and unsearchable things you do not know.'
Jeremiah 33:3 

Day 2 (Fri)
During the day, sometimes the pain would ease just a bit and she could sit up and eat a little. But she and I would have tremendous anxiety as the night got closer. She would sleep a little and the pain would wake her up to cry. Her cry was desperate. Her fear HUGE.

Our family seemed to be under attack.

I left Evelyn's side for 3 minutes once Brian got home from work, to water the flowers. In the few minutes it took me to water the flowers, I got stung repeatedly by a swarm of wasps or yellow jackets. I never saw them coming.

Brian was contacted by the bank because of a missing bank deposit bag. Our family is most assuredly in crisis.

I continued to dose her with the pain killer and Tylenol and Ibuprofen around the clock, down to the minute. And we would pray. I kept calling the doctor. He said if it isn't better to head straight to the ER. It wasn't better.

I kept thinking…this is the definition of INSANITY. Doing the same thing and expecting different results. We are INSANE. THIS IS INSANE. Or maybe I am going insane. Same medicine, same excruciating pain.

Brian had a Jiu Jitsu tournament in Atlanta. The plan was, if she felt better, he'd go. Of course she didn't.

Day 3 (Sat)

Brian called her doctor and he admitted Evelyn to the hospital on Saturday morning. He picked her up in his big strong arms and carried her to his car. I look at each of the girls, at Brian, at Evelyn. We all looked so sad. Her coloring looked weird to me. A grayish color. Her eyes look tired. I am so traumatized.

And then they pulled out of the driveway. Being in the hospital will have to be better than this. They are going to do something to help her. Something…..

She missed the huge end-of-the-year swim meet. I sent Carlisle on with friends to the meet. She begged me to come and watch her. I wanted to, I just couldn't. I had to be with Evelyn. So once she was on her way to the meet, and the two little ones were at home with the babysitter, I left to meet Brian and Evelyn.

Meanwhile, at the hospital, Evelyn was having a CT scan. That is the moment for Brian. Everything changed. There is life before his sweet baby in the CT scan and a new life after. No exaggeration. Sometimes we can pinpoint those events. For him, this is one. He can't talk about it without crying. He said she was just sitting there in the CT machine and he had no idea what they would find. Would she have something terminal? Would this be fatal? Everything fell into place. All the things that truly matter became important and all else slipped away.

By the time I got there, she was already in her room. The nurse was there to give her an IV. She chose to put it in the top of her hand. It hurts so much in your hand. I've had IV's there. When Grace was born I had an IV in the top of my hand. It is seared into my mind. Very hard memory.

She bravely accepted the needle being thrust into her little hand. She cried, of course. She still seems like a baby amidst all the bigness of the bed, the wires, the adults everywhere. She's six. She's in horrible pain. The nurse kept saying, 'Its ok, the needle is out. Only the tube is in. It doesn't hurt anymore.' And then she left. I cried with Evelyn and said, 'I'm so sorry she said that. It DOES hurt. The whole time it is in….it hurts. I remember. And I'd hug her and tell her that I too have had an IV in my hand and its awful.

And then I would sit in silence and stare at her in that big bed. And I'd think, what are we going to find? And I'd watch my precious baby in such tremendous pain. There was talk of this being a migraine. Which was traumatic to even think about a 6 year-old with a three day migraine. Really? It never made since to me.

She would beg us and then we would beg them to hurry with the pain killers. For the first time since it all began, it helped….a little. She would have about two hours or so of some relief. But the pain never LEFT. She still had pain. And she still had itching and burning in her head, but it would be slightly better. Then it would wear off and she was absolutely miserable again.

I was in a horrible time warp.

When will this end?

I just knew that somehow this would end and that we would go home and have our normal happy lives back. I was thinking, take me back to my love bubble where people aren't screaming and in agony 24 hours a day.

But instead, we continued to beg for more medicine. Here we were in the hospital. I wanted them to give her the relief she hadn't had in days. I asked for something to help her rest. She hadn't slept well in 3 nights. They gave her the 'really strong medicine that will knock her out.' IT DIDNT EVEN AFFECT HER.

Instead, she was tired for a few minutes, and then she began entertaining herself raising the bed up….putting the bed down. Raising the feet up. Then the head. Sandwiching her in the middle. It was then that Brian and I would joke and laugh. We were so happy that the 'sleep meds' were giving her relief and that she wasn't laying comotose or screaming in pain. She was funny, funny, funny. She was herself. Busy. Full of energy. She has always been our most active of all of them. She's the one who walked first, climbs like a monkey, stopped napping at 18 months because she had way better things to do. So pushing buttons for hours on the bed was Evelyn being…Evelyn. Thank you Lord for those few hours of normalcy. She looked like a crack addict. Her coloring was terrible. Her eyes were half open swimming around in her head and she moved like an dope head. But she wasn't screaming in pain. So it felt good.

With some of the stronger meds, they monitor pulse rate. So of course, she pulled those monitors off, setting off all sorts of alarms in her room and at the nurses station. And then she would complain bitterly about how loud the beeping noise was. Then she'd tangle herself in all the cords and be jumbled up and complaining about that. She was a full time job. All this, while she was supposed to be sleeping from the 'strong sleep drug.'

I'm 9 months pregnant and am tired. I left Brian that night with her and went home to try and sleep. I crawled into bed looking so forward to a night of rest. I'd been asleep for 2 hours or so and the burglar alarm at Brian's office goes off. The alarm company calls me. They say that they have tried Brian on his phone but no answer. I explain that we have a child in the hospital and he is there with her. They ask if I want the police to be dispatched. I am suddenly wide awake. I think back to the missing bank bag. I say yes. The police department calls a few minutes later and says that he has checked the entire premises and that nothing or no one is found. I thank him and crawl back in bed.

Minutes later…maybe 20 or 30…maybe an hour later, the same thing occurs. The alarm is set off, the alarm company calls, police go. They check, nothing. They encourage me to go there and reset the alarm. I call an employee and she happens to be awake. Thankfully, she heads to the office to reset the code for me. This goes on another time during the night. Life is spinning. Its hard to have rational thought. I'm numb. And always, I am thinking of Evelyn. I couldn't feel more helpless and scared.

There is a story in the bible that I love. A sick man. He was blind. Forever blind. Not days into his blindness, but a lifetime. He hears Jesus is near and BLOWS IT UP! He starts shouting for Jesus. SHOUTING. Everyone told him to hush-up. It fueled his fire. He just got louder. When we are in need of Jesus….CALL TO HIM…..LOUDLY!!!! Jesus walked right over to the man who was shouting for him. I imagine that he continued to shout even as Jesus stood near because he wouldn't have been able to see that Jesus was RIGHT there. And Jesus loved him. He loved that he screamed out for him. Jesus immediately healed him!

Then they came to Jericho. As Jesus and his disciples, together with a large crowd, were leaving the city, a blind man, Bartimaeus (which means "son of Timaeus"), was sitting by the roadside begging. When he heard that it was Jesus of Nazareth, he began to shout, "Jesus, Son of David, have mercy on me!" Many rebuked him and told him to be quiet, but he shouted all the more, "Son of David, have mercy on me!" Jesus stopped and said, "Call him." So they called to the blind man, "Cheer up! On your feet! He's calling you." Throwing his cloak aside, he jumped to his feet and came to Jesus. "What do you want me to do for you?" Jesus asked him. The blind man said, "Rabbi, I want to see." "Go," said Jesus, "your faith has healed you." Immediately he received his sight and followed Jesus along the road.
Mar 10:46-52 

Day 4 (Sun)
Two of my friends and their daughters come by and pick up the other girls. They split up the girls. Two went with one family to church. One went to another church. I'm so grateful for their help. I can tell my girls are strained. I wonder if they know that they are being dumped on others so that Brian and I can focus on Evelyn. I know they need me. I am so divided. I cry. They cry. They leave. And I head to the hospital.

By the time I get there, the nurse is removing her IV. We are so relieved. We celebrate the removal of the IV. She looks HORRIBLE. She hasn't had a bath in who-knows-how-long. Her eyes are rolling around in her head. She's got dreads. But she's not crying. So I am grateful.

The Doctors tell us it's probably what they call Cluster Migraines. We are told to continue the pain killers and they discharge us. Somehow none of this makes since. But she is happy to leave. And I think to myself, 'if this is infact a migraine then it will GO AWAY. We are on day 4. It WILL go away….right?'

We get home. Sisters are still with friends, she is soooo loopy from all the fluids and pain killers and drugs floating through her system. She sits down on her new surf board with a guitar and starts writing music like she's Bob Marley or the Rolling Stones.
She seems to have a good afternoon. Her bestie stops by for love and hugs. I think she scares her acting so strangely different from her normal sober self. Brian takes her out for ice cream. Seems like maybe this will be a thing of the past.

Carlisle gets home from church and lunch with friends and is so relieved to see her sister. Evelyn is wallowing around moaning and agitated. She's unresponsive to normal conversation and a shell of a person. Carlisle tries to talk with her and play and Evelyn is like a druggie.

Carlisle nervously whispers to me, 'Is Evelyn going to be like this forever?' I tell her honestly, 'I hope not Carlisle.' Everything is so grim. Everyone is so affected. And nervous.

But this thing is going to pass. We cling to that hope quietly.

'I cling to you; your right hand upholds me.'
Psalm 63:8 

At the same time, we know that this is not over. And, unfortunately, we were right.


And so we cling. To the LORD.

That night, we give her the maximum amount of medicine we can give her, put her down early and Brian lays with her until she falls asleep. Once the other girls are asleep, Brian and I sit down to talk. We decide if she wakes up screaming in pain, we go straight to the Children's Hospital in Charleston and get her admitted to the ER.

Worst night yet. The pain medicine does nothing. She and I cry all night and pray to the Lord who takes away pain.

'Be strong and take heart, all you who hope in the LORD.'
Psalm 31:24 NIV

Day 5 (Mon)
Brian is still sleeping upstairs in the guest bedroom when I wake him up early and tell him of her night of suffering. The pain, the screaming, the agony. He immediately picks her up, carries her to the garage and puts her in his car. They are gone within moments. I'm pretty sure he just picked up the same bag he'd had at the hospital in Florence. It had never been unpacked…

I am standing there with three other little girls standing by my side. We are motionless. Sad. Quiet. We watch them pull out of the garage. The garage door closes silently. I am dumbfounded. They are confused. Scared for their sister. And even a bit selfish. 'Mom what is going to happen? What about ME?'

We are somehow living someone else's life. Or a nightmare. I occurs to me that this seems like a task impossible to do well. I am so tired. My belly is so big. My head is spinning. And the one I am SO worried for, just left. My heart is swimming. Three other little ones look up at me with big blue eyes.

I assure each sweet girl that God is taking care of us. Because HE is. That I know. HE is our anchor. He is GOOD. He is right. He will help make since of this for me. And for them…

'We who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure.'  
Hebrews 6:18-19

And so I cling. To the anchor of my soul.

Then, little Vivian… who will unintentionally break your heart with her sweetness. She, who never asks for anything, says, 'Do I get to go to Horse Camp this week?' Oh my gosh. Horse Camp. It's Monday morning. She is supposed to be there in 5 minutes. A 20 minutes drive away. Into the country. She's waited all summer for this. How am I going to be in two places at once? My heart is ripped out of my chest.

'Of course you get to go to Horse Camp.' And all of a sudden I can focus for a moment. On that. On her. A new focus. The other daughters…who need me desperately right now.

And I get her ready. She's so gentle and quiet. Excited. But pensive. It's a stretch for her to do anything without big sisters. Especially something new. I'd thought that if she was too apprehensive for camp that I'd let Evelyn do it with her too. Of course that was before all this sickness.

Everyone is ready and in the car quickly. I'm pretty sure Baby went in her wet diaper and jammies to the farm. We got there a half hour late. Vivian is as I knew she'd be. Apprehensive. Nervous. But eventually the horses win out. She's eventually brave and after 15 minutes or so, she's happy and we leave.

We get back home and I don't know what in the world I am supposed to be doing. I busy myself with laundry because my head is swimming. And mindless laundry makes a little since. I talk to Brian on his drive to Charleston. I can hear Evelyn moaning in the seat beside him as they drive. He tells me, 'You're pregnant. Take care of the other girls. Stay in Florence. We don't know what is going to happen.' He sounds the way I feel. Confused. Unsure. Scared. I'm spinning. Carlisle tries her best to help. I speak to a friend on the phone who has endured more sickness and hardship than I. She listens as I cry. She wants to help. She offers to take the two little ones. I just say yes.

Time passes quickly and it is time to pick up Vivian from Horse Camp.

I talk to my friend again. I can tell she's had time to think through our situation. She tells me go to Evelyn. 'Be with her. She needs YOU.' All of a sudden, CLARITY. She's right. I get a text from another friend that says the same. That's where I am needed. So the little two girls go with my friend. Carlisle goes with another friend and I pack. I am gone within the hour. How in the world is this going to work? The needs of this one family all of a sudden are so overwhelming. How can I take care of each girl? Or each girls' heart? And then there is Evelyn.

But I have to go.

'Then Nebuchadnezzar was furious with Shadrach, Meshach and Abednego, and his attitude toward them changed. He ordered the furnace heated seven times hotter than usual and commanded some of the strongest soldiers in his army to tie up Shadrach, Meshach and Abednego and throw them into the blazing furnace. So these men, wearing their robes, trousers, turbans and other clothes, were bound and thrown into the blazing furnace. The king's command was so urgent and the furnace so hot that the flames of the fire killed the soldiers who took up Shadrach, Meshach and Abednego, and these three men, firmly tied, fell into the blazing furnace. Then King Nebuchadnezzar leaped to his feet in amazement and asked his advisers, "Weren't there three men that we tied up and threw into the fire?" They replied, "Certainly, Your Majesty." He said, "Look! I see four men walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods."
Daniel 3:19-25 

It was the three of us in the fiery furnace. Brian, me and Evelyn. But as we looked closer, it was so obvious all along. The Lord was there too.

I arrive in Charleston. I tell the front desk lady in the ER that I am here to see Evelyn. She says, 'And YOU are?' I said, 'Her Mother.' She raises her eyebrows and quickly ushers me to a tiny room. There is Evelyn. Brian. Brian's sister. A Doctor. A nurse. He is the Pediatric Neurologist. Simply put. He's eccentric. Brian is describing what we have been through. And in the middle of the storm is Evelyn. MISERABLE. Eccentric Doc is loud and seems like just insane enough to help us. He says 'You know what I think this is? I think I know….' He scratches his head. He talks so loud. 'I think this is SHINGLES.' And he says he's going to think it over some more. And then, he is gone. I kiss Evelyn. She's thrashing around in this tiny bed. I ask Brian if it hot to him. He offers for me to sit, but my back can't hack it. My back constantly hurts from the pregnancy. So I stand. I rub Evelyn. She's constantly in motion from pain.

Eccentric Doc is back a little while later. He says, 'I'm going with Shingles.' He starts asking her about her favorite Disney movies. He starts singing songs from The Little Mermaid. He tells us, that he's ordered her some anti-viral medicine.

I tell him that's great and that she is still in extreme pain. The drugs she's been taking haven't worked. He orders her a new drug. He explains that it is stronger than morphine. The nurse has it within a few minutes. I am blown away with how quickly things in the ER move. Its thrilling. The medicine is going into her IV. We happen to all be watching. The medicine is 1/3 of the way out of the syringe and she rolls over to her side. By the time the nurse has 1/2 of it in her IV, she shuts her eyes. As the last half goes in, she is GONE. ASLEEP. Brian and I look at each other. The whole administration of the medicine took 6 seconds. Max. I've never seen anything like it. But finally she is still. She is content. She is quiet. She is out of pain.

The room seems cooler all of a sudden. She is completely and totally motionless.

I sink into a chair beside Brian. It's just us and our baby lying comatose-ish in the bed. The nurse comes by and offers us something to drink. I accept. So grateful for water.

Time passes. I get texts from concerned friends offering their experiences with children and headaches. Things for us to consider when talking it over with the doctors. My head swims. I don't answer my phone much. I don't dare go to Facebook. To overwhelmed with this whole situation. Feels very quiet. We sit and listen to her breathe.

The nurse is back. She explains that the medicine going into the IV now is the anti-viral medicine. If it is, in fact, Shingles…then this is the drug that will heal her.

Time passes and we are being transported into a room. Evelyn still hasn't moved. They wheel her through the halls and into an elevator. We must look so shellshocked. People step out of the way shooting sympathetic glances towards us. Others hold the elevator doors as she is pushed onto the elevator and murmur that they will get the next one.

They put us in a room. The nurse welcomes us and gives us the welcome spiel, he is so friendly and helpful that we can't help but smile and talk about him after he leaves. It seems to be the first time Brian and I have smiled all day. I can't think of another time.

There is very little to smile about these days.

There is a flurry of activity around Evelyn, while she is still sleeping, and we settle in for the night. I am on a pull out cot. Brian is on the floor. Life is just nuts.

Nurses and others are in and out all night. Asking important questions. I am not sleeping well. So its fine. I sit up and answer all the questions. Sometime around midnight they make us pack up and change rooms. Brian just about blows a gasket. I forget how hospitals and those who work in them never-ever-ever sleep.

Day 6 (Tue)
The new room is smaller. At sometime before 7:00am, the barrage of student Doctors, resident Doctors and Doctors begins. Evelyn, in the middle of this horrible storm, is always miserable. They try to joke with her and make light. She sometimes weakly smiles. They see her as another patient on their rotation. That is not how we see her, needless to say. They ask about her habits. We explain that she is a competitive swimmer, a dancer, a surfer. That gets their attention. 'A six year old surfer?' She weakly nods.

One thing remains the same. We are always begging for more medicine for her. We are so new to this. They often have to call the doctor to get orders. As we see our Doctors we insist that they write orders that stay in the computer that keeps her pain medicine coming around the clock. They agree. Victory number one for Ev.

I can't think of the last time I've brushed my teeth. My makeup is smeared under my eyes. We are in survival mode. I look ridiculous. And I couldn't care less. The agony of watching a child…your own child, suffer in pain, is simply one of the greatest form of torture I have ever endured.

'Listen, you women, to the words of the Lord;
open your ears to what he has to say.
Teach your daughters to wail;
teach one another how to lament.' 
Jeremiah 9:20

Evelyn's nurse is a sweet girl named Ellen. She and Evelyn become fast friends. Evelyn adores her. The feeling is mutual. On one of her visits into our room, Ellen mentions that she had a dream just 2 days prior…. about a little girl named EVELYN. She doesn't elaborate. And I don't ask for more details. I just know that this is a divine appointment. We were supposed to meet her, to meet Ellen. And God has prepared Ellen for us. Amazing.

The longest day continues. They are giving her the anti-viral medicine every 6 hours. I keep thinking, this will be the dose that changes everything. She will feel better soon. But she hasn't made progress. No progress. Her head is still killing her. She still rakes at it, complaining of itching and burning. And the Doctors parade in. And the doctors parade out. And in the middle of the storm is a precious little girl with a heart of gold, who, when asked how she feels 100% of the time says, 'A little bit better.' No matter what her condition.

I hurt for those who deal with this day in day out. I cannot imagine a child with chronic pain. Chronic sickness. No end in sight. It hard for me to get it out of my mind. I just want her to feel better and our family to be back together.

I was so focused on Evelyn and worried for her that I just let go of the details of the other girls. And I mean, I let it go.

I don't even know where my other girls were some days. Most days. I couldn't keep up. My friends had them split up at different houses or sometimes they were together. Somehow, thankfully, Vivian was shuttled to and from Horse Camp every morning thanks to our dream babysitter, Rachel.

It was such a blessing knowing that they were with friends and safe…and happy.

The Doctors call for bloodwork on Tuesday. Unfortunately, they decide to come to draw the blood in the middle of the night. Like 12:00 or 1:00am. Needless to say, we are all asleep. Brian and I took turns sleeping beside her in the bed. One of us on the pullout chair. One of us snuggled in with her.

So about Midnight, Evelyn wakes up to a nurse standing over her with a needle and a mask like a VAMPIRE. She completely lost it. She had been in so much pain, so traumatized, so poked and prodded, so many needles. She was SCREAMING. Inconsolable. She became completely and totally unglued. The nurse kept explaining that she just needed a little blood. It was the breaking point for Evelyn. I tried to tell her that it wouldn't take long. That the masked lady would take the blood and then be gone. She would have NONE of our talk. The more the nurse persisted, the more wildly she screamed and spun out of control. She was like I have NEVER before and never since, seen her. She was done. I had no skills to deal with this little girl, a little girl I had never known. But Brian…he did. He didn't try to talk Evelyn into allowing the nurse with the scary mask and the big needle to suck out her blood. Instead, he told the nurse this was ridiculous. And rightfully so. To wake a sleeping baby up to withdraw blood from her in the middle of the night. He was so rational. Thankfully. He asked why this couldn't wait until the morning. Evelyn is still HYSTERICAL. He said, 'She's just a child. She's scared. She feels horrible. Can this not wait?' And the Papa Bear won. The nurse was either compassionate or noticed his Papa Bear-ness in full effect, and she left.

He asked me if we could switch spots. He wanted to sleep beside her and she wanted him there beside her too. It was precious to watch. A Daddy protecting his baby. And the baby knowing exactly who her protector was. We all fell asleep…

Yet, I still dare to hope when I remember this….

'The faithful love of the Lord never ends!
His mercies never cease, 
Great is his faithfulness'
his mercies begin afresh each morning.'
Lamentations 3:21-23

Day 7 (Wed)
The morning starts as the others have. A barrage of Doctors, young and old all asking Evelyn how she feels. But something HAS changed today. We were probably 7 or 8 doses into the anti-viral medicine. And all of a sudden there is less of the raking at her head. The itching and burning seems to have dropped noticeably. All along, the doctors have been asking what her pain level is on a scale of 1-10. She ALWAYS gives them an answer that does not, at all, look like what I would have guessed.

So this morning she says she is a 3. THREE!!! Brian and I start to smile and relief spreads across the room like a blanket. After that sinks in, Brian asks her…'so if you were to go to dance class, or surf camp or run and do cartwheels…what would you need to be??? She says, 'Um…a 2.' TWO!!!!! What?!?!?!!? Brian and I laugh and laugh with relief. A ONE must be life in heaven!

I ask her if she wants to take a shower. She nonchalantly says, 'Sure.' Pretty sure it is her first shower in a week. She has dreads from all the laying in hospital beds and the scratching and racking through her hair. For me, I knew she was coming into the clear just listening to her shower. She was humming….then the humming became a song…and then she was singing. I don't know what the song was, but it was worshipful. She's the one born with a song in her heart and it was emerging again. Sunshine started spewing from her again. I see her as she once was, a happy little six year-old. Not a six year-old fighting a weird illness that is robbing her of joy and making her miserable.

Hours later, after multiple discussions with Infectious Disease doctors, Pediatric Neurologist and teams of others, it is decided that the fact that she seems to be improving is probably indicative of the fact that it IS Shingles and that the anti-viral IS working.

She tells the doctors that she wants to go home and be with her sisters. They all agree that we can be discharged. Brian takes off for home and I stay to sign the discharge papers, get prescriptions and finish one more yucky thing….

They want one more vile of blood before we go. Nurse Ellen is on the day shift again.

Evelyn falls apart. Screaming that she has given enough and that she can't give anymore. And she didn't mean blood.

She asks for Ellen to be the nurse who draws her blood. Ellen agrees. But looks really apprehensive.

After much screaming and being wildly out of control, we coerce her to let Ellen draw some blood. It took an hour and much positive talk from both Ellen and me. Evelyn is so spent and I can't blame her. I want to scream and cry too. Once the needle is in, Ellen is able to get a half of a vile of blood. She's supposed to have gotten multiple viles. She pulls the needle. She tells me she can't do this. I can't either. I'm relieved that she has given up. Or given in. I'm DONE. She has stayed well past her quitting time.

'There is no one like the God of Jeshurun, who rides across the heavens to help you and on the clouds in his majesty. The eternal God is your refuge, and underneath are the everlasting arms. 
Deu 33:26-27 

We say goodbye to the nurses. It feels like a door is closing and we have to quickly find the exit. Evelyn is basically bolting for that door. She's pulling my hand, dragging me. I am carrying all our bags. I think to myself that I should have asked Brian to carry some of this for me. Soon she wears out and wants me to carry her too. I cannot say no. It doesn't matter that I am 9 months pregnant. I carry my sweet baby. We make it to the car and I realize that this nightmare is starting to come to a close.

We pull out of the parking garage and onto the street. And there she is. Ellen. The nurse who is an hour and a half past the time that she is supposed to have gotten off work. The nurse who looks visibly shaken.

Evelyn rolls down her window and shouts out the window, 'We love you Ellen.' It's only then that I see that Ellen has been crying. Sickness is hard on everyone. Even those who see it all the time. She waves and we drive home.

'Blessed is the girl who perseveres under trial because when she has stood the test, she will receive the crown of life that the Lord has promised to those who love him.'
James 1:12

Since then, Evelyn has made a full recovery. Praise God. She recently competed in a Jiu Jitsu tournament and won first prize.

Her reward was a sword.

For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.
Hebrews 4:12

God is our great healer and deliverer. He didn't delay. He was right on time. And He rescued my little Evelyn out of the most scary place she's ever had to be. What a deliverance. What a blessing. What a great God we serve.

But as for me, I am poor and needy; come quickly to me, O God. You are my help and my deliverer; LORD, do not delay.
Psalm 70:5

We had a conversation one week later standing in the back of the church. It was with a missionary. Lifetime missionary that has given his LIFE to serving the Lord in the Amazon. He reminded us of the TRUTH. This was an attack. When Satan can't get you, or your marriage, when unsuccessful, he goes after your kids. He has seen it 1000 times. This is a scheme of the devil. And it is effective because of our love for our children. 
Either a wedge is placed in between you and your spouse, fighting for your child, or you get bonded and fight as a team for your child. 

We chose to fight as a team. 

Thank you God for healing Evelyn. 


carmen said...

Wow Jennie! What a testament to the strength of God and the power of unity in your family circle. What an amazing warrior Evelyn was as she battled through this. As always, your reliance on Father and hope through it all amazes me. Thank you for sharing your journey - the good, the bad and the ugly. Blessings to your family as you celebrate healing and birth.

Anonymous said...

Wow. Some of those hospital photos of your beautiful daughter are downright haunting. What a journey. You are an amazing, faithful momma and family.

Love Being A Nonny said...

My word...I felt such pain just READING this. Praise the Lord for her healing!

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