Saturday, April 30, 2011

Soul Surfer

When I teach writing I try to encourage my students not to start their writing with a question. If we practiced that technique then I would be looking at hooks like this: Have you ever had a bad dream? Do you know someone that makes a difference? For the struggling writer I accept them, but for those with a stronger skill set I try to encourage them to do more with their opener.

Today I am a struggling writer. Today I will start with a question.

Did you know a heart can break just after it has been put back together? I know. I am there, rather, I am here. Here in the same hospital room with competent nurses and guardian angels. We are here and I will tell you, honestly, I am glad to be here because a few minutes ago when I reached my limit and slumped into a ball on the couch, a loving nurse sat by her bedside stroking her hair and holding her hand. I am a weakling.

Today we are walking through a different kind of nightmare. But even in this horrific dream I can still praise God that she is breathing! Praise God for improved lungs! I will praise you in the storm. Now our storm consists of an ugly word. A word so ugly that reality shows are made centering around the nasty effects of this word.


Today this is my least favorite word. As a matter of fact I loathe this word.

The last leg of this race is detox which means getting all of the narcotics and sedatives used to calm her out of her little body for good. FYI - she was taking a dose large enough for 4 grown men. This is ugly. No mom is ever prepared to go through the storm we've experienced. But no mom is EVER prepared to see the nasty effects of these drugs seeping through the veins of their little one. Withdrawal is a beast made of twitching limbs, rolling eyes, delirium, restlessness, irritability, spasms, irrational cries, and blurred vision. She has been battling these hateful warriors since 9pm last night. She has slept 15 minutes since midnight. She is still fighting this battle.

Since being weaned from the drugs her speech has lost some meaning. Night before last she thought she was part of the movie Soul Surfer, which I had taken her, as well as 40 girls from Dubach, to see on the Friday before she got so sick. The Friday she started running fever. She kept talking about catching the big wave, how she wanted to go back out there. That is so her. It seems crazy now, thinking back to the movie. I sobbed through the entire thing, holding my cherub in my lap, thinking about the mom and how strong she had to be for her daughter, Bethany. I sobbed at Bethany's strength, determination and faith. During the movie Harper said aloud, "When is it going to be happy again?" Oh sweetie, I wish I knew. I am so ready for happy. Now her delusional mind seems to be stuck in the movie with sharks, waves and a brave girl. She is the brave girl. I am trying to be the brave Mama.

Friday, April 29, 2011

hope and faith

It is late, 10:30pm, and I realize that some of you that have been following Harper's progress may not read this until morning. I apologize if you went to bed with a heavy heart, but I thank you again for the continued prayers for her recovery.

Good news! She is off the vent!! The doctor came back this evening, said she was breathing on her own, and that it was time. I went back to the room to wait with Nick and when we came down the hall the nurses were flagging us down. "Take a look, Mom. You still got your wish."

The sight of my precious girl without all of the tubes in her face will forever hold a special place in my heart. It was pure joy. It IS pure joy! Nick and I stood on opposite sides of her bed just staring down at the miracle before us. Her little chest was rising and falling with a smooth rhythm. A waltz rather than a samba like before. After staring at her for what felt like several minutes we locked eyes with each other, smiled, and met at the foot of the bed in an embrace that said more than words ever could. "Happy Birthday, Mama," he said, grinning behind his scruffy chin. The doors were open and I was a bit embarrassed that the nursing staff was sharing our intimacy, but then I thought to myself, "Let 'em look. This is the real stuff. The good stuff."

Since she was resting peacefully we went down to the room to wait on friends who were bringing us dinner. We laughed and the laughter felt like the melting of glaciers made of fear and uncertainty. Tiny trickles of hope danced around the air in our room dampening our skin with visions of our family all together again. I miss my children and I love my husband.

A few hours later, that same sweet nurse, the sweet blonde from our first night in the hospital nine moons ago, peered around the door of the hospitality room, "She is asking for you, Mom."

Knowing that she asked for me, for Mama, was the icing on the cake. I tried not to sprint down the hallway into her room. There she was, blonde curls piled on top of her head, looking up at me with her piercing baby blue's from underneath that same Tinker Bell blanket. I couldn't kiss her enough. Nick followed shortly behind me, placing his hand on my back as he too leaned over into her sleepy face. We stood there together watching her breathe, grinning like monkeys. I fell for him all over again as he delicately spooned ice chips into her baby bird mouth.

"My cup runneth over." Another one of my favorite movie quotes. This one is from Hope Floats, which I shamelessly watched five times at the movie theater and countless times since then.

In the middle of this dark hospital room I feel hope flowing through my veins. My daughter is lying beside me...breathing! Yes, she still has several tubes and cords, but little by little she is proving that she doesn't need them. Earlier today I felt hopeless because things didn't go my way. Not completely hopeless, mostly frustrated. But what mama wouldn't feel that way? It is my job to love that girl, both girls, so much that it hurts sometimes. And it does, sometimes. But not now. Hurt was replaced by hope the same way fear was replaced with faith. Hope and Faith.


I am not real sure what to say right now. I was angry. Then I was sad. Then I understood. Now I am trying to be patient. Huh, I know, right?

I was optimistic all morning. So optimistic that I drove my happy little butt to Starbucks for a birthday White Chocolate Mocha. It felt weird to be on the streets, in a car, with a destination. We waited all morning to see Dr. Scott, or Cowboy, as I like to call him. All of the nurses could feel my frustration as I sat tapping my slippers on the squares in the floor. They all gave me confidence, "She is ready. She looks good, sounds good. I bet she comes off today...unless Doc sees something I don't see."

I guess he saw it. That invisible little signal that let him know that she is not ready. "Not ready to fly solo," he told us.

I sat there fuming internally, "Who is he, that comes in so late, and doesn't tell us what we want to hear. Why not? I mean, is he even going to give us more explanation?"

He must've heard my thoughts because he popped around the corner and asked us to come look at the x-ray with him. He showed us and he did explain. He calmed, a little.

"She looks better than she did yesterday. Sounds 100 times better. But," and you knew there would be a but, "her oxygen level drops too much when we shut off the machine. She isn't filling up her lungs good enough yet. We have to move on her time, not our time. You can't rush healing."

As much as I know that, and even understand, it is still not what I wanted to hear today. I envisioned a birthday full of joyous celebration! But...I am still grateful. Like so many other times in my life...this isn't what I want, when I want it, but for her I will wait. I am learning patience. I am. This will make me a better mama.

My birthday wish: today and everyday LOVE big. LOVE completely. LOVE patiently.

Thursday, April 28, 2011

Cowboy boots

So the new doc came in, Dr. Scott, wearing cowboy boots so I like him already. After looking over her charts he gave us this plan: Tomorrow morning we will try to get her off the ventilator again. Until then, we will back off of the current sedatives and possibly add another. They are mixing up a delicate cocktail of hard to pronounce ingredients for my girl. They want to give her the right stuff to make her somewhat aware, but not afraid. Huh! Unafraid. Can I have some of that? So that is where we are. Waiting until tomorrow to try again. Tonight when you say your prayers, pray serenity and calmness for my big girl. Give her a sense of peace.

Steel Magnolia

I felt it this morning. That wake up and want to write thing, but I've been waiting to meet with the new doctor so I can share her progress with you. I'm still waiting and I can't hold back the urge my fingers have to meet with these keys any longer, so I'm here.

We are in transition. Dr. Q left sometime in the wee hours of morning and I am delighted that I was snoozing peacefully while he bid Shreveport farewell. Yesterday afternoon he quietly knocked on the door of our sleeping room and waved me to come out into the hall with a calm half smile. Dr. Q is steady and honest, two of my absolute favorite qualities in a doctor. He answered my questions and assured me that Harper will continue to be in good hands, just not his.

Did I say we are still waiting on our new doctor? Does he know that it is 10:08am?? So as we wait for these new hands, hands belonging to a man I've never laid eyes on, hands that are caring for someone else somewhere else, I am encouraged that Harper is always in the hands of our loving, ultimate physician. His hands are also steady and honest, but they are also always on our shift, by our bed, answering our call.

Yesterday we had a soothing steady stream of visitors. Our pastor brought us lunch and the conversation turned to the movie "Country Strong." He brought up the point that in the movie the husband, Tim McGraw, only loves the wife, Gwyneth Paltrow, when she is strong. Throughout the entire movie he only shows his love when she is able to hold her head up and sing, smile. If she falters or shows weakness, boom..he is gone, can't handle it. When Skin was saying all of this all I could think was, "Whew, I'm so glad God isn't that way, so glad that when we are the weakest that is when His strength is revealed the most." I could barely hold my head up the other day. I know for certain that I am able to face the day today because of God's strength and not my own. He has never left me. Unconditional. Unwavering. Steady and Honest.

Last night I was encouraged by words spoken from a friend. She said, through tears, "You hear about stuff like this happening, but when it happens to someone you know it is different. Knowing Harper, and the way she is, I know that of all people she can handle this. She is strong enough to fight this." I thought silently about my feisty girl. I thought about her strong will, her fierce determination, her mighty love. I thought about the way I shift the description of bossy into born leader. I smiled at the pink boxing gloves awaiting her in our room, a gift from a friend, a friend that knows her. Smiling I said, "Yeah, but when my kid beats up your kid in middle school, think back to this." Again, laughter through tears.

One of my favorite quotes from a favorite movie: "Laughter through tears is my favorite emotion."

Steel Magnolias. So many times this week scenes from that movie have come to me. Some have made me laugh and others force me to fight back tears. When my friend said, "You can hit me, I'll be Weezah!" the laughter escaped from somewhere deep inside. Another friend said, "Take a whack a Weezah," and coke went into my nose. Somehow there are moments of laughter hidden within this nightmare. Steel Magnolia. Beautiful strength. Harper Leigh Cauley.

Wednesday, April 27, 2011

weathering the storm...

Good morning! Yes, I can actually say that today and mean it, shout it even, "GOOD MORNING!"

That should let you know that I got some much needed sleep last night and, more importantly, I am being carried by a loving, all powerful God who knows that I couldn't take another step on my own.

There is so much going on in my head this morning so bear with me if this post is a little scrambled. I woke up early this morning, in a bed, beside my husband, and didn't panic. I felt peace. "I know she is OK." I took a deep breath and just looked at the sleeping face of my sweet man. It gave me peace to see him at peace.

Time is back in effect this morning. I know it is morning and I am treating it like morning. I showered, dressed, coffee, quiet time. I walked down the hall to take a peek at my girl and was able to meet the new nurses on shift. One change from last night, the nurses politely informed me that I should try to stay away for a while. They did it ever so sweetly, not pushy, very understanding. You see, she knows if we, Nick or myself, are in there, and she fights harder against the sedatives. She wants us so badly that her other senses have kicked it into high gear to compensate for closed eyes. She can smell us, even feel us without touching us. She knows. I knew someone would have to tell me to stay away from her for me to actually stay away from her, so in a way that is God's provision for me to get some rest. Otherwise I would be right there beside her jumping with every beep and hum from the machines. However, even though time is back in my life, I am working hard to not let it control me so much. I didn't put on my watch. I know this sounds minute, but it is a big deal for a schedule driven, type-A mama. Maybe it is time for me to change.

Another thing, I know that we have a literal God, and that sometimes He has a sense of humor, but really, when I changed the blog song to "Bring on the Rain" I didn't mean bring on the tornadoes! Yesterday afternoon I walked my mom to her car and sat outside for a while on the bench in front of Suttons. I was able to hold my head up and muster up some courage. I held my head up and sang two songs. "How great thou art," and yes, I did sound exactly like Carrie Underwood, and "Bring on the rain," because of this one line..."tomorrow's another day and I am not afraid, so bring on the rain." I even stood up to sing it as if the world could hear me and this is my battle cry. But later in the night, when every tv channel was reeling with tornado warnings, "Seek shelter in a safe place. You are in danger," I wasn't so brave. It is a little embarassing, but I'll be honest. I was terrified.

The crazy scenarios came back: This time the electricity went out and the machines that are keeping my girl alive flicker into silence. The windows burst with pressure and Nick and I fling ourselves over Harper to protect her from glass shards. The nurse stands for hours on end pumping life into our little girl with a green air bag. This is what I deal with in my head. Sick.

Our friends Trey and Jessica spent the evening with us in the hospitality room. They had just dropped their two angels off with the grand's when the outbreak of tornadoes began. The four of us sat with our eyes glued to the damned tv screen. Including the nurses we were the only ones visible in our ward. No other visitors or parents to share the fear with. Nick and I took turns checking on our girl, each one of us jumping when the door to the hospitality room opened, only to lock eyes and say, "She is fine. She is OK." In the midst of our fear our sweet friends were wading through their own. The received a call from inside of the laundry room at grandma's house, "We are playing Barbies. We have pizza. We are OK." My dear friend tried to be strong for me in the midst of fear for her own girls. Then we walked to the chapel and sat together looking at the cross and realized we didn't have to be so strong, that someone bigger and stronger is taking care of everything. Shared tears can be the glue of a friendship.

The climax of our evening was when the lights flickered, lightening flashed, and all of the machines beeped in unison. Jess and I darted to the doorway of the chapel panic sticken. The nurses, sensing our fear, darted down the hallway to yell at us, "IT'S FINE! THE GENERATORS KICKED ON. IT IS OK!"

Standing in the doorway of the chapel I know my heart quit beating. My legs buckled and the doorframe and Jessa held me up. I rested my forehead on the doorframe and said to her, "I am going to have a heart attack, Jess. I really think I am." And then our glassy eyes locked and we laughed an insane little chuckle. It was almost manic. Somehow we weathered that storm together and we are all safe this morning. All breathing and moving forward. We ended the night talking about faith and religion and church. And by the time they left fear was gone because faith took over.

Tuesday, April 26, 2011

a collective sigh...

I'm not saying we're good. I'm not saying quit praying. But I am saying, breathe.

Breathe. Don't we all take this word for granted? The simple process of inhale and exhale. Deep breath in.....exhale out. That is one of my favorite parts of yoga. I even make my students do it before a big test. Breathe. Lately I've been reminding myself to do it even though my body can do it on it's own. Watching a machine breathe for my daughter makes me appreciate each breath.

Dr. Q put a camera down into her lungs this morning and was going to extract any blockage; however, there was none that he could reach. This is a good thing! This means the pneumonia is down on the outer areas of the lungs. A good thing.

He sat down with me and Nick, drew us a picture, showed us a diagram, and then showed us the actual pictures taken from inside of her lungs. It actually looks good, healthy. He told us to breathe. He told us that she is in recovery mode. He told us to leave her room for a while, get some rest, and try to pull ourselves back together. He said now we wait for the lungs to heal, that they have taken the burden off of her. She is under enough sedation now that she won't open her eyes like she was doing earlier this morning. Those precious baby blues that light up my soul. She really is resting now and that lets me feel like I can go rest too. They have also recognized that she has some asthmatic symptoms and they are treating those as well. All we can do now is wait. Rest. Pray....try to relax a bit.

Some of you may be wondering how Nick is doing. I can't write about him because that is his story to tell and I am only telling you mine. In a way I am trying to respect his privacy. He is good. He is strong. And I love him dearly.

I am going to try to rest again. My sweet Brooke is here with me in the hospitality room, watching me go into this typing trance, waiting for me to shower so she can blow dry my hair for me. Such a sweet act of love. For some reason my arms aren't working so well. In fact, my left hand keeps jumping at the wrong keys and I have to backspace and make corrections every other line. But I want you all to know her progress, so I write.

I appreciate each prayer listed. Please keep praying. Again, your words of support and scriptures help me to keep breathing. Breathe.

I slept, I guess...

I did it. I stayed in one position for more than two hours with my eyes closed. I guess that is called sleep. Tylenol pm works way better than NyQuil. Whey I laid down in the bed yesterday my mind was whipping around like the gale force winds outside the window. A storm blew through.

Is that all this is? A storm? People keep telling me that life will get back to normal, but I don't know. That storm came and left leaving a few tousled leaves on the sidewalk. Reminders, but no real damage done. But some storms devastate. They can devastate families and entire communities. THIS CAN'T BE ONE OF THOSE STORMS!

I had a breaking point yesterday. I asked my mom to sit in the room for a few minutes so I could walk outside and feel the air, real God made air with wind and smells and feeling. In here it is cold and I've hurt so much that parts of me are numb. But not my heart. I left this hospital ward for the first time. I walked away from Harper for the first time. I looked at the sky for the first time since last Tuesday, a week ago, when we entered the hospital in Ruston. I look so haggard in my baggy gray sweats, greasy up do, tear stained face that two ladies walking into the hospital kept looking around for the nurses that should be trying to retain the escapee. But as bad as I look, which doesn't really matter at all right now, I am more worried with how I feel. I guess that the fact that I am feeling anything right now is good.

I sat on a bench outside of the hospital and tried to hold my head up to the sky. I looked for the sun to send down some warmth but he was hidden behind rolling clouds. I looked around at the scenery for a brief second, then rested my head on my knees.

I am so scared right now. This is a mother's fear. So much worse than the things I used to worry about for Harper: modesty, manners, materialism. Now I worry about CO2 levels, fluids, secretions, blood gas, x-rays, the long term effects of all these x-rays, germs, tubes, medications, magnesium, to name a few. It is just too much.

But then the voice inside of me, somewhere down deep, says, "Suck it up Mandy!" What I am dealing with is nothing compared to what she is going through. It is game time and I've got to show up ready to play. I remember from my volleyball days that there are times when someone has to make the play to win the game. Sometimes I would twist that in my head to give me fear of being the one that makes the play to loose the game.

I feel a strange variation of that when I am in there with her. Like, "Is this it? Am I going to be in here is she...?" I can't type that word. I can't give that word any power.

But then I remember that death is not stonger that our loving God. Jesus overcame the grave, He is rised! That is my hope. My strength.

Come to me all who are weary and I will give you rest.

Her sedation has her knocked out but she is still vaguely aware of what is going on. For example, they put a diaper on her yesterday, after inserting the breathing tube. She won't pee in it. She knows it is there and she is not a baby. Now she has a catheter to do it for her. This is just one example of how strong willed she is. A reminder to me that she wants to beat this and go home.

Go home. Part of me cringes at those words because I want her to come home with me. I can't bear to think of her heavenly home or anything like that. Just OUR home on Jessamine Street.

When I was out there on that bench I sent my mom a text, "How is she?" I waited a minute and sent it again. "How is she?" Then I called her phone and it went straight to voicemail. This is what went on in my head, "Oh crap something bad has happened and she can't answer the phone and ohmygod I'm going to walk in to craziness they are going to all be in there scurrying around her bed ohmygod I've got to run." I hesitated to peer into her room. When I looked in my mom looked up from the computer, there was only one nurse, it was calm.

Take a breath, Mandy.

"Why didn't you look at your phone! You didn't text me back." She shifted around, found her phone on the side table and said, "Oh, I had it on silent."

I crumpled onto the couch beside her, legs shaky with fear, dropped my head into my hands and cried that hard, deep cry that releases pent up emotions. "I don't know how to handle this."

I felt my mom's hands on my back. "Mandy, you've got to get some rest. You're falling apart, baby, because you aren't giving yourself any rest. I'll stay here with her, you and Nick go rest."

So I did. Leaving her side was hard. But again, I remind myself that I am not in control, at all. There is nothing I can do for her except be there for her when she wakes up, and pray. But this is what is going on in my head: is there room for fear and faith? Because I am so scared, does this mean I don't have faith? I'm her Mama, I am suposed to be afraid. Fear. Faith. Are they two separate entities or is there some overlapping area like on a venn diagram?

OK, I'm sorry. I know that anyone reading this wants to know about Harper, not me, but this is my soul purging quiet time so bear with me.

Harper is OK. I don't know what else to say. The machines are breathing for her so she can rest. Actually, they have increased her sedation because she is still trying to breathe over the ventilator and they want her to relax. Relax? She's like her mama, she can't relax. They are giving her nutrition and antibiotics through her iv, they are sucking the ickies out of her throat for her when she tries to cough, they are helping her urinate so she won't get infections in her bladder. They are doing everything they can.

Alone I can do nothing, in Him all things are possible.

Monday, April 25, 2011

a time out

my arms keep sliding off the desk I am so tired... i am a bobble head doll...

nick woke me up from nyquil sleep..doc needs to talk to us

computer room, x-rays, explanation

"muscles aren't designed to work that hard for that long. we don't want her body to wear itself out and quit, so we are going to give her a break by putting the breathing tube back in."

hold it together, Mandy

"this is not a set back, more like a time out so she doesn't get too tired."

That sums it up. I went back to her bedside where she eagerly hugged me. I tried to distract her from the swarm of nurses entering her room like busy bees hovering over their queen. i told her they were here to check the batteries and fix the tv. I told her the nurse was cleaning her iv port when she was really giving her the sedatives. Then Dr. Q stood from the couch where he was overseeing the busy hum, touched me on the shoulder and said, "OK Mom."

I am still reeling with Nyquil and the walk down the hallway, all alone, felt like a drunken stagger.

We are praying now and ask that you do the same. At this point, they are doing for her what she can not do by herself.

Please leave your prayers in the comment box after you lift them up to the Lord. Reading your words helps me...

Sunday, April 24, 2011

Where she is... update at bottom of this post 2am, 7am

(this is from Sat. night, her first night without the ventilator -this is a BIG improvement.)

Harper has had a better day today taking tiny baby steps toward the miracle that will occur when we take her home with us.

Last night was a regimen of her labored breathing, unplugging the mass of wires so she can use the potty, and therapy every four hours. In between that she would give me directions with a gut wrenching, squeaky voice that sounds like a baby lamb. Her throat is raw from the breathing tube but she insists on giving us orders.

Today she has been breathing mostly on her own. She is only aided by the oxygen from the cannula rather than a full blown machine. The doc said her morning x-ray looked good so that is a baby step in the right direction.

At this point in time Harper just needs to recover and rest. She will receive physical therapy tomorrow to help her use her arms and legs again. I have a feeling she will show the therapist a thing or two.

It is good that her body is working hard to heal, but we don't want her to have to work too hard or it will wear her out. We have decided to keep her room closed from visitors for a while. It reminds her that she is in here and everyone else is still moving on with life. Her little heart starts pounding too hard and she tuckers out. For now it is just Mommy, Daddy and the nurses. We would still love to see anyone that wants to come, but we will have to meet you in the lobby or waiting room.

We still ask for your prayers for our fighter. Trust me, she is fighting this.

Nick and I appreciate the way everyone has covered our family with prayer. You continue to touch our lives with your love and concern.

*** 2am update ***

Dr. Q just came in, yes it really is 2am, and he was able to look at her current blood samples. My big girl watched the nurse draw the blood from the iv port and didn't even flinch. My fightin' girl is getting brave. Dr. Q said her blood looks good. He even used the word, "improved." The concern now is that she is unable to cough up the stuff in her lungs. The vibrating vest is not working like he hoped, so he is trying something different. Now she will receive a medicine through her breathing treatment that will break down the mucus into a liquid form. Right now her respiratory rate is in the high fifties/low sixties (it elevates when she has visitors, that is why we have cut them off). The respiratory rate should be in the twenties. So my girl is working twice as hard right now to take breaths which explains why she is so tired. She has been running a marathon for the past two days. On top of that, she only had a few bites of chocolate chip cookie and chocolate bunny today. I tried to get her to eat some orange but she wanted the bunny, so I gave her the bunny. She will receive her new and improved treatment either every two or four hours. A new regimen for a new day.

***update 7:12am Monday morning***

Harper has been resting most of the night. Today we have to focus on keeping her pulled up in the bed instead of slumped down which compresses her diaphram and inhibits her ability to take a full breath. We are also going to try to play more breathing games like blowing bubbles and another little spinning thingy they have here. Anything to help her take bigger, stronger breaths. In just a bit Nick is going to take over the bedside watch. I am going to our room down the hall to rest. If you visit today and I am asleep, please don't wake me up. Sorry, I'm just wearing down from the last few days of minimal sleep. The adrenaline is running out and I can feel the soreness in my body and eyes. If you want to speak to one of us, ask the receptionist to notify our room and Nick will step out to speak with you until I wake up.

I just want to add a word of thanks to my friends and family. My other baby girl and both dogs are taken care of and I have no worries. All of my attention is on getting Harper well, just as it needs to be. Thanks for stepping in when that bus hit me. Love!

Sunday, is it Easter?

I am so tired I can't even be poetic this morning. It is morning, right? It is hard to distinguish morning from any other time of the day except by the amount of light streaming through the windows. My internal clock is so off. Last night I ate McDonald's sometime around, heck I don't know...and then my girlfriends brought me Whataburger around, heck I don't know. I didn't eat much of either. Right now I'm having breakfast: coffee, a strawberry and a pineapple flower from the edible fruit basket someone sent. Thanks for breakfast.

I am eating, I swear. So many people are asking me that. I don't know why, I am not the one that hasn't eaten since Tuesday but I know they are concerned. Thanks for that, too.

I'll be honest and tell you all that I am coming off a Nyquil buzz and the screen is swaying back and forth a little, but not as bad as that ambulance ride. I'm just sayin'.

Last night was a good night. After the visitors and family left Nick and I were alone with our sweet girl. She was tucked sweetly under the Tinker Bell blanket with a puppy pillow pet to her right and a brown velveteen bunny to her left. She is a seasoned veteran at dealing with the remaining tubes and cords. She pulls the canula out of her nose every now and then, swipes her palm across it a few times to scratch those inside places, and then secures the tube to it's proper position. If I try to help her she says, "I can do it!" She is a fighter.

She receives therapy every four hours in the form of a velcro strap around her chest that inflates with air and vibrates. This helps loosed the ickies in her lungs and then she coughs hard a few times, coughs that come all the way from her Cajun Shrimp toenails to her Burt's beeswaxed lips. Her heavy blue eyes will then look at me with some sort of request which I promptly answer before she leans back into her pillows to fight her fight. She is a fighter.

Two of my bestest home girls stayed up with me last night. They came armed with pillows, magazines, home made cookies and home town gossip. The perfect combination to distract my weary heart and help me keep vigil through the midnight hours. Within 20 minutes of their arrival I had my head on one end of the couch with a loving hand patting my back and stroking my hair, and my bone tired legs and feet were in another lap receiving a gentle massage. I wish I could say that I loved it. I did love it. But sleep didn't come. It was a modified form of rest. The outer layer of me was able to remain horizontal for a while but my insides still perked up with each beep from the machines or labored breath from my girl. Thank you for that. That is the stuff great novels are written about. That is Ya-ya's by definition. At one point my friend said, "I'll be Weezah. You can hit me!" That made my heart, and my face, smile with a much needed bit of happiness with a dash of gratitude.

They left in the wee hours of morning and I actually did fall asleep on that couch. I woke when the x-ray tech came in to do his job. I think I feel back asleep, not sure. I did come to around 6:15am, stumble down the hall to send Nick to releive me, took a shot of Nyquil and slept until 10am. That is the longest, bestest sleep I've has since...I don't know. I can't remember. The idea of sleeping at home in my own bed with crisp clean sheets is comparable to winning the lottery or some fantastic vacation to the Greek islands. It sounds that good. But it won't be good unless she is there with me, so I'll wait here thank you very much.

I awoke to another sweet face belonging to one of my childhood friends. Me and this girl have been through it all: tears, wins, losses, weddings, kids, youth name it. My second baby girl shares her middle name. If you know me you know this girl. She peeped her head around the door, smiled at me, then did exactly what I wanted her to do. She curled up beside me in the bed and we cried together, arms intermingled like a barrel of monkeys that you can't seem to get apart. I shared my fears with her and she listened with thoses ears of hers that take things in and don't pass judgement. Just listen. And love.

I went down the hallway to sit with Harper, but Gene, our amazing nurse who came back on duty at 7, told me that they were both asleep and wouldn't let me come in. I love you, Gene.

So here I am, typing it all down so that I can look back in a few days, weeks, whatever...and remember. I don't know if I'll want to remember but I want her to know that she is loved by so many.

It is Easter so, Happy Easter. Part of me wants to say, "Happy bleepin' Easter," but that might be sacreligious or something. That is the sarcastic, defensive side of me that is just trying to get through this blur of days. Scurrying mama mouse. I hope that anyone who reads this will take a minute today to really and truly be grateful. Be grateful that you are where you are reading this instead of in a hospital waiting room typing this. Be grateful for the people around you, even if you are arguing or are there and they are with you. That is a lot. I am grateful! As tired as I am and as delusion as this post may sound...I am grateful. God is good. Harper is here with us, breathing her tired puppy breaths and fighting her fight. Not many people know that I think of book ideas in my head all the time. At one point I have considered writing a book entitled "Backbone" with stories about the strong women in my life that have made a difference on the woman I am today. Those stories would include my grandmother who managed the farm and three kids after her husband died, another grandmother who looked after her dead son's wife and children with amazing love and care, my mother who picked up the pieces of her own life after my dad died...three little girls and 600 acres, my high school coach who helped me build my faith along with Gloria Gaddis and Jan Gregston who stepped in to minister to a group of high school girls, friends along the way with faith that moves mountains.... now I will have to write about my daughter. My fighter! My firecracker!

She will come home with us and when she does, on that day, we will hunt eggs and eat candy. But today, on Easter, we are grateful. I truly mean this...Happy Easter.

Friday, April 22, 2011

the bus ***updates at the bottom of the post***

One of my favorite bloggers is Kelle Hampton of Enjoying the Small Things. About a year ago her life got hit with a bus. One of those crazy freakin' buses that come from nowhere and smack into your world so hard that you know life isn't going to be the same from that moment on. I wept as I read her blog that touched so many lives, literally millions. I have read her blog at least once a week since that post heard round the world.

I got hit by that bus.

Even worse, my baby got hit by that bus. That damned bus. If you read my last post you know that that tick tick ticking cough turned into pneumonia. When the doctor said that word, "pneumonia," I thought of Mrs. Brisby and the rats of Nimh. How she scrambled frantically to go see Mr. Ages to find the medicine for her son, Timmy, who was sick with pneumonia. I thought of that little mama mouse scurrying to and fro to salvage the pieces of her life and stitch her world back together.

I am that little mama mouse.

It is hard to keep my eyes on the future, looking ahead. My natural tendency is to look back and dwell on decisions I made that got me here, that got her here, like it is my fault that she has this. That is because my faulty human nature tends to think I have some sort of control. I can assure you, and now I can assure myself, that I am completely out of control. Control has been replaced with helplessness. My faith, my ever growing faith, is pulling my heart forward with some sort of magnetic quality so that I must look forward. Think ahead. She will be ok. We will go home with her in the back seat. She will still be the big sister.

Then fear creeps in like a virus. Like pneumonia. I go to the bathroom and on the walk down the hall I envision myself sprinting down the hall with my hair flying wildly, like a Rascal Flats video, screaming a high pitched frantic mama yell. I see myself crumbling to the linoleum in a broken heap. I see myself looking into Nick's eyes and ..... and then I make myself stop. STOP!

"Jesus take the wheel, give me one more chance, save me from this road I'm on, Jesus take the wheel," what comforting lyrics from the hospital room tv at just the right moment as I type about fear. And my favorite singer, Carrie Underwood, is now singing, "How great thou art" on CBS. What a choice to make on a national platform. Thank you, Carrie. I need this right now. My soul needs this reminder that I am loved by a majestic, powerful God who has a plan for my sweet angel hooked up to tubes and pumps that make my heart stop with every beep and purr. "Then sings my soul, my savior God to thee, how great thou art, how great thou art!"

That is how fast my thoughts are transitioning from fear to hope. But I am choosing to cling to hope. Harper is a fighter, she can beat this.

I took her to the doctor on Monday for a fever and cough. After examination, doc sent us home with an antibiotic. After we had been home a few hours the fever didn't go down. I continued to give her Tylenol and Motrin to keep the fever down, but at midnight it spiked to 104 so I gave her a cold shower. Tuesday morning she was just weak so I took her back to the doctor. After a quick listen to her lungs he ordered a chest x-ray which revealed pneumonia. Scurrying mama mouse. He sent us straight to the hospital. We checked in Tuesday evening and waited. On Wednesday we waited. On Thursday we took more x-rays and a cat scan. Then doc gave us orders to transfer to Sutton's in Schumpert.

The ambulance ride was like a delusional nightmare. I sat sideways facing Harper, swallowing back nausea from the heat, stress and shock. "I am not riding in an ambulance with my daughter on a stretcher. I am not." I tried to look forward at the road to keep me from throwing up all over Harper. The paramedic gave me a vomit bag and offered to give me a shot, but I said no because I hate needles. I noticed the driving paramedic's eyes darting from the road to his lap where a spiraled black cord connected to the cigarette lighter. "I don't mean to be a #itch, but what is he looking at?" The paramedic in the back with me looked at me like I was crazy, glanced around to the driver, then told me that he was looking at the GPS. "I think you are just really tired," she said. Well I am not stupid. I saw the GPS and it was not connected to the cord in his lap! UGH! Then she leaned forward and said something to him. I tried not to stare but when I did glance back that way the cord was curled up in the drink tray and his eyes were on the road. The ambulance didn't swerve so badly after that.

When we arrived at Sutton's I felt like I was panting after the paramedics as they strode with intentional steps to get Harper to the right place. I was carrying three bags, I was nauseous, I was out of breath, I was afraid. I wondered if they would even notice me melting into a puddle behind them.

They pushed her into a bright room where five nurses stood ready to assist. Moving her from the gurney to her bed was like taming an alligator. A sweet blonde nurse tried to lead me down the hall while I choked back the silent tears streaming down my cheeks. Each step I took was haunted by her wails, "I want my mama! Maaaammmaaaa!" She opened the door to the hospitality room where Nick was waiting for me. I dropped the bags and fell into his loving, panic-stricken embrace. The door opened again and the sweet blonde asked me to come back to the room until she was secure. I ran-walked down the hall in "hold on, honey, Mama's coming'," kind of way. My girl is a fighter. I held her hand and tried to talk in that soothing mama voice, tried to tell her to calm down that it was going to be OK while my insides were screaming louder than she was. I know I looked a mess and the nurses kept giving me sideways looks of pity. I really didn't care. When they had her calmed down a little, Nick and I were taken into a large room of computer screens and introduced to our new doctor. His name sounds like "keshy" but it starts with a Q. You figure it out. We sat down in front of a large screen where he showed us images from the cat scan. This is the first time we were shown anything to try to help us understand what was happening inside of her body. The white skeleton on the black background was my baby. A gray cloud covered where a lung should have been. He showed us several views of her chest, explained the procedure while I hid my face in Nick's fleece, and then we gave him the go ahead to start "right now."

We waited. Together. This time together was too intimate to share. It is for me to lock away in my stash of memories of things I absolutely love about my husband.

We received our first update after about 45 minutes. The tube was in, fluid poured out, it is going good so far. Another update 30 minutes later said he was finished and the team was giving her a central line. During this terrible waiting time we were flooded with prayers from friends, colleagues, and family. We can't thank you enough. Sometime that night we both closed our eyes in different rooms of the hospital.

At 4am Friday morning I awoke when the x-ray tech came into the room. I peered over my pillow while they moved her ever so gingerly to take the photo. I closed my eyes. An hour later Dr. Q asked me to follow him into the computer room so I grabbed Nick from down the hall and we sat, once again, with sandpaper eyes, in front of the large screen. This time two images were in front of us. One from 7:35 pm and the other from 4:11am. The new picture showed two lungs. One was nice and full of air, the other was still cloudy, but filled with air. Strange wires and tubes draped over the skeletal image like jewelry on a gypsy. Already we could see improvement. Then he showed us how much fluid has been collected from her lung. At this moment three white boxes are lined around the side of her bed on the floor, like cans at a fraternity house, to show how much fluid was consumed. Each box holds 200cc, the first two are completely full and closed off. The third is still slowly filling with the thick yellow fluid flowing from the tube in her side. Over 450cc from her one little lung.

So everyone is asking for updates but we really don't have any just yet. Her fever went up again today to 103 but they are controlling that with Tylenol every 4 hours. She stirred some today and I was able to look into her perfect blue eyes for a brief moment. Her mouth is full of tubes, a wire is going down her nose, there is tape holding the wires and tubes, but through all of that I was able to see her little dry lips form the most precious word in the whole world, "mommy." I just held her hand, stroked her hair, kissed her and told her how much she is loved. They said she can hear me. At one point she squeezed my hand as if to let me know that she knows I am by her side. In that instant my heart spilled over with love and broke at the same time.

Writing this helps. Texting and talking helps because in those moments I am not sitting here listening to the whiz and hum of machines. I don't hear occasional beeps or see tiny blinking lights. Somewhere down the hall Nick's eyes are closed. I think it is time for me to close mine as well. This is part of my soul on the screen and my heart is on the bed beside me.

*** update at 8:51am Saturday morning***
Her nurse just showed us the latest report. The LEFT lung (the healthier lung) is completely free of the affusion (yucky stuff). That is an improvement since we got here on Thursday! The RIGHT lung (unhealthy lung) is almost free of the fluid, another good sign, even though it is still infected. They increased her antibiotic from 300mg to 400mg last night so we will hopefully see some improvement in her blood count, fever, etc.

***update at 10:33am Saturday morning***
God is so good! Dr. Q arrived, met with us and showed us the x-rays. the black screen now showed two lungs full of air! Two normal sized lungs. He just took out the tube in her side that was draining fluid from the lungs and bandaged her up. Now they are taking her off of the sedation so that she can be weaned from the ventilator! Thank you Jesus!

As he stooped over her bedside preparing I prayed for wisdom, discretion, and steady hands for Dr. Q and Gene, our nurse. Dr. Q looked in my eyes, "You are brave." I wanted to tell him he is wrong, that I'm really scared out of my mind. I peered around his backside while he removed the tape, then I walked to the opposite side of her bed and held her hand, stroked her forehead, watched and prayed. I kept taking deep breaths and tried to bend my knees so they wouldn't lock up. I didn't want to fall out like a middle school choir kid at the first concert. Don't lock your knees.

His gloved hands worked steadily to snip the sutures and pull the thin white cord from her side. He showed me the size of the tube that was actually inside of her body - much smaller than the tube connected to the drain tubs. Breathe, Mama. "Jesus loves me" played softly from the CD player beside her bed. Again, God's provision. He stepped away from the bed, smiled up at me, checked the monitors and washed his hands. Then he placed the round end of the stethoscope to her chest. First the left side then the right. He smiled. "Decrease the sedation," he told the nurse, "Let's get her ready to remove the ventilator."

Did I hear him correctly? Remove the ventilator? You mean, she might be able to breathe on her own by tonight? She might be able to lock eyes with me and know how much she is loved? Yes, I heard him correctly.

I stood by her bed crying tears of joy and silently praising my ever present God. Dr. Q received a tight embrace from a happy Mama and then I went down the hall to tell Nick. We crossed the hall into the chapel and praised God for this miracle. We prayed for continued healing for our girl. We thanked Him for placing such amazing prayer warriors in our path. We thanked Him for competent doctors and nurses. We thanked Him for loving us and our family. God IS good. We know we are not completely in the clear but this is an amazing step in the right direction.

As I'm writing this post, Gene walks in and smiles at me. "You know this is a miracle right?" Yes, I know. "It is just amazing that he is taking her off of the ventilator so fast."

"Not too fast, right?" I queried.

"No. He is the best. Any other doctor would keep her on there for a lot longer. He is the best. You are lucky you got him."

"Not lucky. Blessed. That is God's provision for us." At this point those darned tears started again.

"This is a miracle. You know you could've lost her. Infection was that bad."

"I know," sniff, "You just don't want to let your mind go there. But we know and we are so grateful. Everyone in our town is praying for her."

"It works," he said. "It is powerful stuff. This is the good part about my job."

I am blessed and highly favored, as is my girl. My fightin' fiery curly headed cherub. I know we have a long road ahead of us. I know. But this is our miracle and I will never think of Easter the same. Each year I will not only celebrate the resurrection of Jesus, I will remember this fight. This fear. And this miracle.

***update at 12:44 Saturday***
They successfully removed the ventilator and she is breathing on her own. She is still receiving oxygen through the canula (nose tube). She has opened her precious blue eyes, she is trying to speak to us, she is resting.

***update 4:07 Saturday***
About 30 minutes after the previous post Harper took a step backwards. The xray they took after removing the tubes looked worse than the one this morning that gave the doctor the confidence to remove them. It has been a scary afternoon. Such a dramatic high followed by a terrifying low. Hope and fear. PLEASE continue to pray for healing for Harper. She IS a fighter. We need prayer!!

***update 4:19 Saturday***
Our amazing nurse, Gene, just called Dr. Q to ask about Harper. Dr. Q said that he expected some fluid to become evident in her lung and that his plan is for her to expel it by coughing. When she wakes up from her rest and is completely off of the sedation she will wear a vibrating vest to help loosed the schmagma in her lungs. Then he wants her to try to stand up and walk around to help her cough it up. The good news is that the doctor is not surprised, he expected it, and he has a plan for her. It has been a very long, taxing afternoon. I cried on my own mama's shoulder and to be honest, it felt so good. I needed to be loved on for a second. I'm still her baby girl and it is hard to believe that she loves me the way I love Harper Leigh. We appreciate all of the love, support and prayers. Please don't stop.

***update 7:41pm Saturday***

We have had a positive evening. Dr. Q came to our room to reassure us that she is doing fine. According to him she is in recovery mode. We are by no means in the clear, but we are so much better than we were earlier this afternoon. A lot of that has to do with removal of fear due to his thorough explanations, which included a diagram of the lungs and how they work. Now we need the antibiotics to fight off all of the infection and build up her strength. If you need a mental picture of her progress this is the best I can do as tired as I am: she stood with assistance to move to a chair for about an hour. She ate a red popcicle (only after she stuck out her bottom lip when we presented her with an orange one), she drank some water through a straw. She let me know that she wanted the Tinker Bell blanket I was using instead of the white hospital blanket. She told us she wants to go to the beach. She pointed at the TV when she saw the Wizard of Oz. She is fighting her battle.

Nick and I are crumpled together now on the couch by her bed looking across the room at our blessing, our little miracle. We are tired. Again, we want to thank everyone for the prayers. Prayer changes things and we believe this now more than ever. Resting now.

Please continue to pray and I will add updates to the bottom of this post as we get them.

Wednesday, April 20, 2011


It started with a fever last Friday and the fever is still running rampant in my little girl's body. Then the cough started. A shallow tick tick ticking of a cough that sounds like a failed pull on a weedeater before you really get it cranked up an running.

Now we know it is pneumonia. This is hard but I'm comforted knowing God is in control and I am not. Please pray for Harper. Not sure when we will get to come home, but it won't be today.

Sunday, April 17, 2011


Last weekend Jana Beck and her crew organized an amazing fundraiser for Legacy Park, Kids Day at the Park. My girlfriends from Texas, the best state ever, drove over to spend some QT and get some exercise. However, I had both of my kids and Dara brought her daughter, Chloe, so Jaime is the only one that got her heart rate up. Well, that's not entirely true. We did take turns toting the girls around the lake piggy-back style and I know my heart was pounding!

All in all we had a great time! Me and my home girls laughed and talked and posed. After we left the park to chow down at Waffle House, they announced that the park received a grant and will start construction this fall! Woo hoo! I'm thinking Kids Day is our new memory makin' tradition.

Harper Leigh and Me

(our team headbands courtesy of Jaime, the Scentsy Queen - the wick is wack, yo!)

Harper, Dara & Chloe

Mommy and Baylor Kate

Chloe and Harper...actually had the exact same shirt and shorts...twinkies!

you can tell we've really grown up a lot since high school...H97!