Saturday, May 28, 2011

This Time

Home feels really good this time. This time I don't care about weeds or laundry or ants in the cabinet. This time changing her iv meds and flushing the line doesn't even phase me. This time I sucked it up and cooked her favorite enchiladas because that is all she wanted to eat. This time I haven't answered the phone, returned texts or purged my thoughts, until now. This time all I care about is soaking up my family because this whole experience has taught me to appreciate THIS TIME. Now. Today. The present.

On the drive home from Little Rock I caught myself making plans in my head. Big plans, the kind you shouldn't make on a drive home. But this time I caught myself, chuckled, and let it go. Instead I looked around to the backseat and just absorbed the joy of coming home with a girl on the mend. The chubby arms that encased my neck when we pulled into the driveway sent another shock wave of joy into my system. Baylor was my anti-weariness antidote at the end of a journey lasting 42 days.

Today holds so many possibilities! It is Saturday and I am HOME with my family! Well, Nick had to work but he will be here soon. We have an unfinished playhouse to discuss, a garden to examine, a yard to roll in, homegrown vegetables to devour, and a wedding to attend. Harper is going to see one of our favorite babysitters walk down the isle in true Southern princess fashion. She will see Miss Lori stand beside her in the position of honor. She will see two people pledge their love before God and seal it with a kiss. Today is looking good.

Wednesday, May 25, 2011


It has been a very long day. Again.

Nick and my mom were both here last night and I was disillusioned in thinking that their presence would equate sleep for me. I had big plans of a dark, cold hotel room where I would sleep deeply with Nick by my side knowing Harper was being cared for by my mom. She wasn't having it. Fit throwing seems to be her only means of controlling anything right now in an environment that is out of control by all of us. It was like an F4 on the Fit Scale. My insides shattered but I held firm to the voice inside of me that said, "You need some rest. Go. She will be fine." Then she clung to me in a starfish grip, wailing, "Mama don't go. My heart will be broken if you go. I need you here with me."

It was a long night on the blow up mattress. When Nick got up to comfort her each time a nurse came in to check her vitals, I would sink down a few inches only to pop up again when he returned. I cried for over an hour because each time my eyes closed I would see Baylor's sweet eyes looking up at me. I was a pathetic, blubbering, snotty mess until I somehow exhausted myself into sleep.

This morning was our first attempt at oral antibiotics. We bribed, coached, and encouraged for over an hour before we ordered another iv bag. She just couldn't do it and my heart broke yet again after she apologized for throwing up the drug chased with Sprite. Enough.

Blah,blah,blah... it was a rough afternoon too but I just want to try to forget it.

Good news! Her inflammatory markers are down and she has been fever free for 24 hours. The plan was to send her home with oral antibiotics, but we will just deal with the pic line for a couple more weeks. Sniff, sniff...beach trip will have to be rescheduled. Oh well. We are going home tomorrow! Again. Home! HOME! Again I will get to reunite with my little one. Again I will be peppered with her kisses and get all gooey inside when she hugs her big sissy. Anticipation overflows onto the keyboard.

I could write so much more about what I can't wait to get back to, but I've got a sparkly manicure and Justin Beaver waiting on me...."You smile, I smile,"... again.

Monday, May 23, 2011

for good

Throughout this process (that is how the doctor's refer to the infection in her lungs...the process) I have been overwhelmed with the support from strangers.

Yesterday I received two pages worth of support from an unknown voice in Dallas. She shared her soul with me and encouraged me to pray God's word into this situation. I did.

Back in Shreveport I received a large box of crackers, candy, chips and soda from a complete stranger. She identified herself as "a friend of a friend," hugged me tightly, and then left.

My bosses daughter, whom I had never met, allowed me the use of her guest bed and shower while she was away for the day. She left the key under the mat and put the good towels out on the bathroom counter.

And then there are the prayers. Countless offerings to our almighty Father have been lifted in honor of my daughter by faces I've never seen. She has been the reason for numerous prayer chain telephone calls and e-mails, as well as the topic of many Facebook posts. Childhood friends, high school friends, college friends and new friends have all been praying for Harper, as well as my entire family. Spouses of my girlfriends have learned to follow a blog, some have learned what a blog is, and some have even used Kleenex in place of a sleeve.

Countless good has occurred as a result of our nightmare. I'm OK with that. In fact, I find joy in that. Because of Harper's illness, families have joined hands to petition her complete healing. Little ones have heard Mommy and Daddy pray a little more than normal. Prayers are being said other than bedtime. Her classmates are learning the true meaning of empathy and compassion. My own students, who I haven't seen since April 15, are witnessing the sacrifices made by a Mama. My niece and nephews are witnessing their own Mama's do whatever needs to be done when crisis hits the family. My mom and step-dad are connecting through the pain and helplessness of having a sick grand-baby. Nick is working on a play house we've been talking about for over a year.

And me, I am learning to be still. I find delight in her breaths and joy in her laughter. I am reminded that she was not only a miracle from God when she was brought into this world, she is a daily miracle. She is a constant reminder of God's blessings in my life. Through all of my pain I kept thinking, "The Lord giveth and the Lord taketh away." I was so afraid that she was going to be taken away from me. I was so afraid of being angry with God, but pledged to love Him even still. I secretly begged Him not to make me prove it. But she is here. She is still mine, ours, His. I hope this has changed me for the better. I hope this has changed me for good.

To quote one of my favorite musicals:
"Who can say if I've been changed for the better? Because I knew you...because I knew you...I have been changed for good."

Sunday, May 22, 2011

Day 38

I awoke to the feel of an unfamiliar hand on my leg. "Her fever is 101.7, Mom." My ears worked before my eyelids even had a chance to creak open. I gave my textbook response, "OK, order some Motrin." Inside I'm saying something else. Inside explicit four letter words are firing in rapid succession. Inside I'm screaming, "When is this going to be over? When can we go home? Why is she still sick? When can she go to the bathroom without unplugging a pump and rolling a machine along with her? When can I leave her side for more than a few minutes without feeling insanely guilty?"

Can you tell how I feel today? I match the gloomy weather outside the window. Our room is dark with a steady drum of raindrops beating on the windows. I am not depressed. I am not weepy. I am over this. So is Harper. Today is the kind of day where we will argue off and on all day because we are both tired of being in a room looking at each other. We both want to flail our arms and stomp our feet and scream to the top of our lungs until the sound fizzles out and we are left breathless. Today is a punch the pillow and kick the laundry kind of day.

So, what does any good mom do to beat the rainy day blues? We are cuddled together on the blow up mattress with markers to our right and chocolate donuts to our left, watching "The Twilight Saga: Eclipse." I know this movie is "too grown up" for her. I know. But she has done a lot of growing up in a no-fun kind of way, and this is a little more fun than needles and scans. She giggles and hides her face in the flesh of my arm when they kiss. She covers her head with the blanket when they fight. So, all in all she is really only watching about ten minutes of the movie. For a little while we are both able to forget where we are and how long we've been here.

Later we will watch "Never Say Never" for the umpteenth time. Talking about Justin "Beaver" makes her face shift into a Cheshire grin. Her dimples appear and her eyes turn into half moons. I'm desperate. I'll do whatever it takes to make her happy at this point because if she is happy then I am happy, mostly.

I am struggling to compartmentalize my feelings the way men do. I actually wish I was better at this, but my emotions tend to bleed together until I am crying, laughing, complaining all at the same time. Most of me is here, with Harper. But the other part of me cries a little every night for my other baby, Baylor Kate. For 38 days I have been by Harper's side. That means I haven't been there for her. She has been shuffled from Ruston to Longview to Houston to Ruston with friends to a babysitter to Dallas. On the few nights that we were home together I rocked her a little longer, cuddled her a little tighter and cried a few tears watching her drift off to sleep in the big girl bed all alone before I returned to the nurses station in my own bedroom. I have to keep that part of me walled off from my day to day reality. I dwell in that room a little each night around bed-time when I miss her the most. Shut the door.

Saturday, May 21, 2011

day 37

Day 37

No surgery. Not worth the risk. Now we wait and see how her body responds to the new antibiotics. Will update after I eat and my girl eats. You know how I get when I'm hungry.

Ok, we have ALL eaten. She is sleeping and Nick is on the road back to Ruston to start working on a special project for the girls. I just finished "nesting" in our room the only way I can - throwing away trash and folding blankets and clothes. These menial tasks make me feel a little normal and help turn a small room into home. The laundry area is the rocking chair. The kitchen is our goodie basket on the counter. The office is the sleeping chair. My bed, a new blow up mattress, is folded neatly in the laundry area topped with Tinker Bell blankets 1 and 2.

Dr. Wheeler just left our room with the latest news. The plan is to monitor her fever pattern and blood samples for the next two days to see if these antibiotics are fighting the infection. Also, by Monday, anything that is going to grow in the lab from her previous samples will show up. He said that he is as equally frustrated in a few days as we have been over the past well, 37 days. The "what" and "how" are still unclear. Thus, we monitor and wait.

I do feel the need to give a shout out to the nurses at Sutton's. If ANY of you are still following Harper's progress please know that we miss you terribly. I know there is a difference between being on the regular floor and PICU. We are relieved to be on a regular floor here. While we totally appreciate the quality of overall care and the team of doctors here, the nurses just don't have the magic touch like the ones in Shreveport. Since I can't name names, Harper and I want to thank Miss K, Miss M, Miss C, Mr G, Mr C, other Miss M, Miss J, other Miss J and Drs Q, F and S, along with the respiratory staff: Mr J, Miss R, Miss M, Mr B, other Mr B, for the care she received from each of you.

Friday, May 20, 2011

found it

Day 36:

My Dearest Kitty, (That is what Anne Frank called her diary)

Long days of waiting produce answers, right? Early this morning our resident doctor asked us to keep Harper off of food and drinks until after the scan. I rocked my starving baby all morning hoping that the rhythmic motion would lull her to sleep and keep hunger away. Her bony hips and bottom dug into my legs while I cradled her thin shoulders close to my mama bosom. Almost every time that a sigh of relaxation escaped her sweet lips, the door would creak open and a nurse, doctor or consult would come in for something. I finally asked the nurse to place a sign on the door asking people to knock and wait until we stepped out of the room. Of course, about that time Nick went to grab a snack and they had to come into the room anyway. Mama bear tried.

The cat scan and pic line went well. I found her in the recovery area happily sucking down a purple Popsicle. When the baby next to us began to wail Harper looked at me with big eyes, "I think we need to pray for that baby." I kissed her sweet forehead, glowing.

Finally, after a long, gloomy day our new doctor knocked on the door. He is brilliant and co-wrote the chapter in the textbook about pediatric infectious disease. After examining the cat scan images he was able to identify an area about the size of a kitchen sponge, or deck of cards, lingering in the bottom of her lungs. It is like a big scab in her pleural sack, or lung sack, with some icky areas within. The surgery team will re-examine the images with his recommendation to proceed with surgery to remove the infection. They will make the call, but I am sure his advice carries a lot of weight. We don't know for sure right now, but we feel like they will do surgery. There are two ways to do this. 1. use a computer arm with a camera or 2. open her up and go through her ribs. This should remove the lingering infection that isn't responding to antibiotics and alleviate the fever. It may also help them discover just what bacteria is causing this. I don't like either option, but I also don't like having a seriously sick child for over a month. I just want what is best for her in the long run. I want my Harper.

Please please continue to pray for wisdom and discernment for our doctors and nurses. Pray for my sweet girl. Pray for healing and a full recovery.

plan for today

She is sleeping. I'm appreciative of this sleep even more than I am nighttime sleep because right now she is hungry but can't eat. She must wait until today's plan has been put into action. The plan for today is 2pm cat scan and 3pm new pic line with anesthesia throughout both procedures. Hopefully the scan will tell them the exact location of the lung infection as well as any other infection that may have a part in her illness. Right now we are all unsure, stumped. Last night the fever returned so there is something in there that her body doesn't like...just need to figure out what it is.

Thursday, May 19, 2011

Wooaahho, Little Rock

"It won't hurt, I promise." If I hear those words one more time I'm going to scream! How can they promise anything at this point? How do they know what hurts and what doesn't because if they ask me...this hurts! This is hard and I wanna go HOME! That being said, home hasn't exactly worked out for us the way we thought it would so I AM glad to be here. I am grateful that we are here in good hands...not that we were in bad hands. Now we have new good hands, new minds and new equipment.

We decided to come to Arkansas Children's Hospital in Little Rock when her fever spiked to over 103 degrees yesterday and her body was covered in an irritable red rash. We could've had another xray done in Ruston, waited to consult with doctors in Ruston and Shreveport, but we decided to come here instead. Our biggest questions are, "Why isn't this going away," and "Why is she getting such a high fever on two strong antibiotics?" Of course, "What caused this?" is still lingering since we have not been able to grow or discover the source of infection.

Today was a day of waiting. After they removed her pic line last night because they feared it might be a source of infection, we waited for the lab results. We waited for the ct scan all morning before they switched it to an ultrasound instead. Then we waited for the results. Our last hospital overnighted a disc of our previous xrays and scans so the doctors can compare images of her lung. Then we waited for them to collaborate. In the middle of the waiting was the shuffling around a crowded room that we shared with another family of three. Cramped, crowded and noisy. Ideal situation for patience to grow.

The day has brought two blessings. 1. They gave us a private room since we may be here a couple more days. 2. They pretty much ruled out surgery! The remaining pleural fluid is not significant enough to attack with surgery. Instead they will monitor her fever pattern overnight and decide which antibiotics to use tomorrow. The vancomyacin and zosyn combo was not as successful as we would like.

Her spirits are high considering....well, considering this is our fourth hospital visit in a month and that she has had off and on fever since April 15. She is adamant about becoming a nurse when she gets big - a nurse that takes care of babies. She requires step by step explanations for EVERYTHING, watches EVERYTHING and hears EVERYTHING. Last night she applied the oil that dissolves the stickiness from the large, clear sticker covering the pic line. She wiped and peeled with diligence. She watched the doctor pull a tube 20cm long from the crook of her tiny arm. She didn't even flinch. She is becoming ambidextrous and understands the meaning of that big word. She also asks when her medicine will be hooked up and knows that the beeping machine signals that meds are all done. She is slowly losing her fear of needles since she watched the last two sticks and replied, "That didn't hurt," afterward. Today she "stuck" her new doll that is used for medical play and applied three stickers on its chest to search for vitals. I think she is already a pretty damn good nurse.

She is still fighting this.

As for me, I feel like a tired mama bear backed into a corner, snapping at everything around me, trying to protect my little one the only way I know how. I question everything the nurses do. As soon as they tell me something I immediately follow with, "And what is our plan to address that?" When she runs fever and it takes too long for the dang Tylenol or Motrin to be sent up from the pharmacy I stand in the doorway and stare at the nurses station until it arrives. I insist that a Child Life specialist explain everything to her and then I tell her the same thing in a better way because I am a really good teacher and I just do it better. I administer her oral medications to her because she won't cry if I do it. I still help her go potty and I feed her if she needs help. I'm a pretty damn good nurse too.

Sunday, May 15, 2011

growing up

As a mama I naturally wonder about the women my girls will become. I've known since her birth that Harper was going to take the world by storm; she will be a leader, a difference maker, a dynamite stick topped with blond ringlets. Baylor will be the calm after the storm, rightfully so as the second born. Baylor will be the endearing spirit that instills confidence and joy in everyone she meets. Her teardrop eyes are wise and have the ability to burn a hole down deep and make you feel things you didn't know you could. Many times I have burrowed my face into clean little girl hair and whispered, "God's got big plans for you." I know He does.

Funny thing about God's plans, you never know what they look like until you are in the middle of them. Right now, in the middle of this storm, I wonder how He will use this event in the big picture of Harper's life, as well as my own life.

I tell my students all the time to write their own story. I tell them that they each have a story to tell, and in me, they ALL have a story to tell, and the only way for their story to help others is to write it and share it. It is crazy for me to think that Harper is already working on her "survivor" story. From this point on she will immediately be able to connect with anyone going through a medical struggle. She will think compassionately when she sees a child with leg braces or an oxygen tube or an iv port. She will understand their fear of being different.

Being in the hospital for this long has forced my little girl to grow up in ways that I wasn't ready for. Now she asks Daddy to leave the room if she needs to use the potty. She makes certain that the privacy curtain is closed. She knows what it is to stop in the chapel and pray for all of the children in the hospital. She understands shift change and knows that her favorite guy nurse works during the day and remembers that the nurse that helped wash her hair for the first time works at night. She knows that a hospital play room isn't much fun without any other kids to play with. Even sick kids are more fun than no kids. She knows that if mom walks down the hall the nurse will give her the last cupcake that mom was saving until "after you eat real food." She knows that her Justin Bieber doll makes the little girl down the hall quit crying and that nurses seem to huddle near the doorway when you watch "Never Say Never", the Bieber movie. She also knows that she is sick. She knows that she is still in a hospital. She knows that people are praying for her.

I don't know what made Harper get sick. I don't know when she will be her old self again. The new self, once she is healthy, may be even better than before. What I DO know is that God has been in the middle of all of this, holding us all in His palm. This terrible sickness has brought about wonderful change in certain areas of my life and within my community (more on that later). A good friend and colleague has assured me on more than one occasion, "And we know that for those who love God all things work together for good, for those who are called according to his purpose
." Romans 8:28

I don't understand everything, but I do trust. Like Harper, I'm growing up.

Friday, May 13, 2011

nurse badge

My creamer is still in the fridge along with my sample packet of conditioner in the family shower. Evidence of our first visit remains like a welcoming committee along with the familiar faces of doctors and nurses we've grown to trust. Yes, we are back at Sutton's. This time, however, is better. I find that funny to say, or type...a better visit to the PICU. But it's reality. This time isn't as bad as the first time. This time I drove us over, no texting involved. I'm not sayin' I obeyed the speed limit; that is what emergency flashers are for, right? My hands gripped 10 and 2 firmly unless I got behind a reluctant driver, then I looked as if I was swatting flies trying to shoo them into the other lane. Then, as I passed, I would look over my right shoulder and smile sweetly while mouthing words of gratitude through a grim expression.

Last night was rough for her simply because "we are back in the hospital!" She didn't have any new complications. Her fever came down promptly. She ate a yummy dinner. She watched a couple of movies after Idol. What she didn't do was sleep...all night long. Ok realistically, maybe an hour. ..or two. That means I didn't either, of course, because she needs me. She needs me to hold her sweet hand, help her go potty, straighten the covers, take the covers off, fluff her pillow, move her pillow. You get the idea. Mom, that'd be me, IS the best nurse and I am slowly accepting that title and wearing it proudly, like a new badge on my Mom Scout Vest. I'm earning it, working for it and will have to prove my skill. And I can promise you that for a while this will be the badge I'm most proud of. This badge means more than the "Takes Cute Photos" badge or the "I Did Insanity" badge. This badge is making me dig deep. This is a gut level badge, soul level.

And while I'm learning just how much she needs me, even more present is my need for her. My Harper. My firstborn baby. My curly headed, blue eyed, dimple cheeked firecracker. She is mine. She is my first "Best" badge and Baylor is my second "Best" badge. Two equal badges that happened to come at different times.

This time things look better. Literally. Her xray and ultrasound did not reveal anything new. She still has pneumonia and needs iv antibiotics to keep it at bay. Her fever is down, thanks to Motrin, Tylenol, and a room resembling a meat locker. She is currently watching Nemo surrounded by her halo of blonde frizzies. Again, home is on the horizon. Possibly tomorrow. This time we will take the iv antibiotics with us. I wish we could pack us a few nurses from here to go home with us, but we will hopefully find someone near home to visit and teach me how to be an even better nurse. I can do this, for her.

Thursday, May 12, 2011

May Valentine

Sometimes the outpourings of my heart spring forth on days other than the silly holiday in February. I don't need a Saint, red hearts or roses to recognize those I love.

This is my May Valentine...for you, Tricia.

Hey Ester!

I just want to send you a word of encouragement!

For two weeks in the past and two weeks in the future you have put, and will put, normalcy on hold so that you can nurture your sisters. You are living proof of God's provision for each of us. We both were in need of care and you are able to give it. What a blessing you are to both of us.

In addition, God has given you the courage to branch out on your own at just the right time. I know he will not only bless your business, but your efforts in doing what is needed for your family. Just like Ester you are in the right place, or position, at the right time. I am so grateful for His provision for you as well as for me and Codie.

Think of the example you are setting for your children. Even when you think they don't notice, they have witnessed you offering yourself as a servant for those you love because it is the right thing to do. They will, I promise, take mental note of this and sometime in their lives they will remember what it means to make a sacrifice for someone you love and will hopefully follow your example. On top of that, think about the impact you are making on those around you in Houston. Who else do you know that will stop the routine to take in a niece and then nurse a sister?

Yes, you may grumble under your breath. Yes, you may need a drink, or two. Yes, you may wear the signs of stress. But what you are doing is bigger than that. You are faithfully following the greatest command of our Almighty Father, "above all else, love."

Sunday, May 8, 2011

my cup runneth over

A quick smooch from mommy

Baylor and her crew of Barbies, her new dress and her new pose.

I'm lovin' Baylor's half-moon smiley eyes

This is how we go places...hand in hand.

My favorite pic of the day...Big Time Smooch!

Sneakin' in one more from Mommy

I'm loving some of this...Daddy and Harper making plans for the new play house!

Saturday, May 7, 2011

new normal

Today has been a good day. I know that is a lame opener, but it has! Today feels like a "normal" Saturday with my family and right now normal feels pretty darn good.

My friends were right, the meds do get easier. Everything is easier with sleep, something I have acquired guilt free since Thursday night. Friday afternoon we nestled in for a four hour nap, we went to bed around 9:30pm, woke at 7:30am and took another long nap today. Last night my mind was reeling with thoughts zig-zagging all around the spectrum of my conscience. I've slept deeper and more soundly during the daytime naps even though both presented me with awful dreams. That "newborn baby how am I gonna protect her if this catastrophic event happens" kind of dream. Some moms know exactly what I'm talking about. I can't believe I just lived through one of those dreams and now it is part of my reality.

This morning after breakfast and cartoons it was time to tackle the tangle. This wasn't just any tangle. This was 16 days of bedhead with very curly hair knotted mass kind of tangle. It looked like a literal rats nest on the back of her head. I considered taking her to a salon, but thought I should at least give it a try. I'm glad I did because it didn't take too long with my secret ingredient: olive oil. I conditioned it twice in the shower, sprayed it down with detangler, then rubbed in the oil. Fifteen minutes later and voila, tangle free. Go mom!

Then I had to fulfill the bribe I used to get her to be still for those fifteen minutes. Enter LTECH nail salon. Ten blue fingers and ten blue toes later she walked out feeling pretty sassy. She looked so tiny sitting in the leather massage chair, so dainty. Her legs show the evidence of being sick for so long. Tiny stems with large knees. She'll grow back into them, even stronger than before.

As for little sister, she peppers me with kisses at various intervals throughout the day like last night during movie time, this morning after breakfast, this afternoon at the Tech baseball game. I hope to get another dose of her lovin' as soon as she wakes up from her nap. Yes, it is 6 and they are both still asleep. I should probably wake them up but I've heard too many times, "Don't you wake that baby!"Sleep is one of the sweeter parts of recovery.

One last thing. Harper is getting back to her old self. Last night she told me I needed some "pajama jeans" because sometimes my jeans don't fit right. Before she got sick it was Proactive for my spots. One more reason to keep the tv off.

Friday, May 6, 2011


Juxtapose - to place side by side

That is where I am today, in a state of juxtaposition.

The highly anticipated drive home yesterday should have been one of loud singing mingled with boisterous laughing. It should have been a windows down, sunburned arms, sipping on Route 44 Dr. Pepper kind of drive. Should have been.

Instead the fatigue of 16 hospital days set in and the haggard woman peering back at me in the glass reflection hardly reminded me of myself. Harper's head bobbled around on her neck before we hit Haughton. Nick kept looking over at me with a forced smile, "We're going home! Be happy!"

I am happy! I am happy down deep in my soul but my outsides are exhausted and when I stepped into my long awaited home I was knocked over with anxiety. It is stupid, I know, but it is how I feel. Our laundry room was spilling over with balloons, care packages, cards, stuffed animals and snacks along with our bags, blankets and other belongings from the hospital. I walked out to the back yard to hug Baylor and my eyes frantically darted from weeds to pollen to thirsty plants to chewed plastic bubble bottles littering the yard. Sweet neighbors and friends kept our grass mowed and Harper immediately ran out into the lawn to hug her sister with a tight embrace that mirrored their union just a few hours before. My juxtaposition of anxiety and joy.

Within an hour Harper began to run a fever. Nick and I kept locking eyes from opposite ends of the couch but not saying any words. I called the hospital. Motrin. Off to the pharmacy to pick up her 4th prescription. They asked me questions I didn't have the answers to. Needed verification. I called the hospital. Before leaving with her new inhaler I opened the box to make sure I could administer the meds properly. This isn't the kind of inhaler you push, it is the kind you just suck in. I've never seen this kind of inhaler before and the uncertainty of "Is it working right?" made me toss the fine print instructions across the counter and slam my hands down. "Nick, come see if you can figure this stupid thing out!" Within minutes my attention shifted to administering the proper dosages of the drugs she is still weaning from. Narcotics. Tiny amounts needed with accuracy. It was so much easier when the nurse just brought it all to us at the right time, the right amount. Now I am the nurse. I'm not a nurse! My juxtaposition of mom and nurse.

This is where I am. Stuck in the middle of being completely, overwhelmingly happy to be home with my family and completely overwhelmed to be the matriarch that keeps things rolling smoothly. I am not complaining I am just being honest with myself. Normally I pick up the confetti of toys as I pass through the living room. Today I step across and around trying to fight back the instinct to pick up. Today it is more important for me to be right beside Harper. Since she is still recovering I have to be mindful that she is not back to 100%, and apparently neither am I. She is fearful if I leave the room. She is hesitant to go to the bathroom by herself (not in that girls go to the bathroom in a pack kind of way) and she is afraid of the dark. After lunch crocodile tears rolled down her cheeks as she recalled being forced to lay down with a tube in her throat. "I wanted to get up and you wouldn't let me," she cried. They said she wouldn't remember, but she does. In some distorted/high kind of way...she remembers. I wish we could both forget. She may, with time. The details may blur together and just become, "That time I got sick." But I won't. Sure, the details may blur, but the fear and growth that took place within me is etched into my being. Now it is part of the mom I am.

Another juxtaposition, being someone who relishes in the delights of daily life with my girls, because I am that person, and being the list-making, do-er that loves to "get things done." It is a tightrope that I constantly walk. During the school year it is actually easier to walk that line. When I'm at work I work, get things done. Work is my creative outlet. When I come home I am home, mom, wife. Also my creative outlet. I love both. I am good at both. But when summer hits I struggle to fit in that "get things done" in the midst of cartoons, dolls, chalk and play-dough. My balance gets a little off and my breaths get shorter and my shoulders get tenser (tenser? more tense). But that is life isn't it? A balancing act.

Thursday, May 5, 2011


"But every house where Love abides,
And Friendship is a guest,
Is surely home, and home-sweet-home:
For there the heart can rest."
~Henry Van Dyke

Wednesday, May 4, 2011

No words needed


It was still dark outside when our sweet night nurse tip-toed into our room to unhook the fluid and last iv line. My eyes cracked open to see her bent over Harper then they closed again for another hour. At dawn when I got up to help her go potty she was finally cord free!

A few hours later Dr. Q (I apologize Doc, his name is pronounced "Ker-ESH-i", I had it wrong earlier) and our day nurse worked together to remove the central line that has been taped to her leg for 12 days. Again I tried to distract her with stupid mom comments like, "Isn't this your favorite show? Which one are you? Show the doc your new necklace!" Anything to keep her distracted from the discomfort of having a large piece of clear tape peeled away from the skin near her groin area. Ouch! I stood up straight when I watched him carefully snip the black sutures, but my knees got a little woozy when he pulled out the long, thin tube from her vein. One fun band-aid later my girl was tube free! Only the three vital stickers remain on her chest and the magic red toe.

So far today she dressed in regular clothes, ate a yummy bacon breakfast, and walked down the hall and back. Today is a good day. Later today she will open up her shaky arms to embrace Baylor, a moment of much anticipation. I will have my family together again all in the same room. No cords. Just bound together with faith, love and joy! Pure joy, probably even tears of joy!

No word yet about when we will make that I-20 drive. I wanna call it the Highway 20 drive and then bust into the lyrics of my favorite song by Zac Brown Band. He isn't telling my story, but the chorus rings true. "I count the days, and the miles back home to you on that Highway 20 ride." Home sounds so good and it is even better knowing it is on the horizon.

Tuesday, May 3, 2011


I'm ready today, at 5:43am, to be here in front of the glowing white screen in the midst of this dark room where she rests in front of me, mending.

I really think I'm the one who is mending. Piece by piece the Lord is putting me back together. I don't know much about sewing. I mean, I have the sewing machine, a sewing table, thread, needles, and a dusty copy of How-To-Sew, but that doesn't mean I use those tools to create something beautiful. My mom does, every now and then, but I don't. I know there are different ways to stitch, like a cross-stitch or a zig-zag stitch, just like there are different ways to tie a knot. Again, things I know of but don't know how.

Isn't that just like us as believers sometimes...have all the tools but don't know what to do with them, don't know how. I have to believe that there is a way to stitch two pieces together that would actually make the garment stronger. I also have to believe that God is carefully, slowly putting me back together to make me stronger. I know Harper will be stronger. We are mending.

Yesterday I tried to post three different times throughout the day, but each time I sat down either the words escaped me or my girl needed me. Yesterday was a day of rest.

"Be still and know that I am God." This scripture comforted my soul all day long. Be still.

Doctor Cowboy showed up right after breakfast, God love him, and sat down to visit like an old friend. He watched Harper breathe the entire time, which looks great by the way, and asked about her behavior since Sunday morning, the scary morning. Basically he said to let her rest all day. Place a "Do Not Disturb" sign on the door for respiratory and physical therapy and let that girl rest. He is adamant about re-establishing the sleep cycle as part of the healing process. So we did. She slept most of the day and we both slept most of the night. I closed my eyes around 10pm and opened them at 5:20am when my girl whispered, "Mama, can you get in the bed with me?" I responded with the words of the great philosopher Napoleon Dynamite, "Heck yes!" I tossed the stuffed animals onto the sleeping bench, also known as a hospital couch, and climbed, literally, up into the bed to nestle beside my girl. We cuddled underneath that precious Tinker Bell blanket while I studied the slope of her nose, the rise of her sweet lips, and the curve of her eyelashes through the dim light seeping in from behind the privacy curtain. She is so beautiful. She is mending.

While I was laying, lying, (Am I an English teacher? So sorry kids.) next to Harper I kept thinking about us, and how we are both mending. Since I am wading through the waters of raising little girls, I was able to think of this great comparison: In the classic movie, "Tinker Bell and the Lost Treasure," Tink is given the task of creating a scepter to hold the beautiful, round moon stone, which reflects the light from the autumn moon to create pixie dust. (I know, this is deep stuff, brace yourself) Tinker Bell accidentally breaks the moon stone and fears she has ruined it forever, along with their ability to create pixie dust. Now, you just can't have fairies without pixie dust, so you can imagine how she was freaking out. Ok, blah, blah blah, she goes on a long journey to try to find another moon stone only to realize that she didn't need a new one, she could use the pieces of the broken stone to actually reflect more light. Ah-ha, ok, teachable moment. The broken pieces created more surface area which was able to reflect more light which created even more pixie dust for the fairies. Sometimes there is beauty in the breaking and even more beauty in the mending.

I am not talking about finding beauty in Harper getting sick. There is nothing beautiful about having a sick child or the fears that go along with that. This is more about me breaking. The parent of that sick child. The Mama. Throughout the past two weeks, yes, today marks two weeks of being hospitalized, I have felt my heart break countless times. I'm not talking about my heart the organ that pumps blood, the size of a fist...I'm talking about my heart, the dwelling place for my spirit. Mine is shaped like a Valentine, two perfect humps that come together like a V at the bottom. I kept envisioning my heart suspended in air with pieces falling out, like puzzle pieces, and countless tiny hands would catch the pieces before they hit the ground and crumbled. The tiny hands would re-fit that piece, maybe with some glue (shared tears), and the heart would begin to mend. Now the stitching is evident, even ornate in some areas. But I am mending, my patchwork heart, the dwelling place for my spirit, is mending. He is mending me.

"Be still, and know that I am God." Psalm 46:10