"600 Seconds"

On March 25, 2003, I was a giddy newlywed with a pink Hello Kitty Nokia cell phone. At that time, no cell phone signal was available en route to Tazewell from Knoxville until you made it to Johnson's Mill. At some point during the day, my phone rang when Loren's mom got service after Brogan's Holler, and I answered to learn that Thomas was going to have a baby sister in a few months. I am shocked that my squeal didn't crack my teeth, but I was so filled with joy that I just had to holler into the phone until I had no holler left.

Now, we all know that I'm not really good with warm and fuzzy baby stuff, but I was thrilled beyond description that this little girl was coming to the world. I wanted her to be girlie, prissy, and pink from head to toe simply because doing so would make her mother nuts. Little did I know then what an impact Loren Grace would have on not only my life but the lives of others in the years to come.

I had no clue that my life's greatest spiritual teacher would be a precious baby girl. When I am old(er) and gray(er), I will tell anyone who will listen that I learned about God from my mother, Preacher Herb, and Loren Grace.

Loren was born on August 5, 2003. Not since I had made a trek on Valentine's Day many years prior had I been interested in visiting a child on his or her actual birth day, but I loaded up my little Honda and puttered down the road to meet this little ball of happiness. Upon my arrival, I found her mother continuing to be responsible as usual....so annoying. I imagine if I had chosen to embark on childbirth, I would have eaten a wagon load of Quarter Pounders after the kid hatched. Loren's mother...ate fruit...and cottage cheese. Give me a break. Ever the athlete. Ever the responsible one. Ever the amazing mother. There she sat...eating fruit and cottage cheese. I was so distracted by her food choice that I nearly forgot there was a baby in the nursery nearby. I remember the nurse bringing her in. I remember her daddy holding her tight. I remember the nurse checking his number on his bracelett to make sure it matched, and I remember getting a chuckle afterward. I remember that beautiful baby girl and that room filled with grace. I remember what I thought "grace" meant then.

The following March brought a diagnosis that none of us found familiar. At first, I was intimidated by its name. Today, I can say Lissencephaly - Miller/Dieker Syndrome without missing a vowel. I say it, and I expect anyone who is listening to know what it means and why I care. If you are unfamiliar, I suggest you open another window and go to Google. When you come back, you will read the rest of this entry with a more humble heart than you woke up with this morning...

And speaking of this morning...

When you woke up today, did you complain about having to go to work? Did you fuss about the pending wet weather? Did you get frustrated because you overslept, locked your keys in your car, or lost your lunch money? Did you run out of hot water in the shower? Did you get detained by a flat tire? Did you forget your bus duty? Was the vending machine at work torn up thus denying you a beloved Honey Bun? Did you spill coffee on the front of your new sweater? Think about those issues as you read the rest of this.

This morning, Loren woke up just like the rest of us (if she slept any last night), but she had to get ready to make an appearance before strangers and convince them to grant her the assistance of a device that will simply let her breathe. An eight year old asking for air....

I'll give you a minute to process that.

This miraculous, precious, beloved angel on earth - who doesn't communicate with me other than with those endless brown eyes and twinkling smile - had to appear before an insurance appeal board and figure out a way to convince two doctors, three lawyers, two insurance administrators, two state citizens, and one secretary that she needed their panel of strangers to grant her permission to have the ONE DEVICE ON THE PLANET EARTH that will help her simply breathe with less congestion.

I cannot imagine.

When I was eight, I depended on my parents to help me reach a book that was too high on a shelf. I needed adults to help me put air in my bike tires. I had the audacity to take tantrums if I had to get allergy shots. I "needed" adults to buy me Barbies. I needed the wheels on my roller skates to be rotated. I needed help with long division. I needed just five more minutes in the pool.

I never ever needed my parents to find a way to ask another human for help so that I would breathe as a result of their consent.

But today while the rain was falling in Tazewell, Loren, her mom and dad, and her oh-so-awesome Gramma were waiting in some big, cold, room with a drop ceiling and flickering cheap lights. To get to that room, they had to drive almost three hours. And once their turn came up, they were given a maximum of ten minutes to find the right words to say on Loren's behalf to that panel of experts. Ten minutes. 600 seconds. Can you imagine being given 600 seconds to appropriately ask for your child to have air?

Six hundred ticks of the clock, and their time was up.

Homework was done prior to the appearance. Adequate research and statistics were compiled in a document that, I'm sure, held a close resemblence to any advanced medical student's review of relevant literature. But despite all the research, despite all the statistics, and despite the information provided by the company that makes the actual device, her mother's love is what will make the difference as the panel reviews Loren's case. In all the world, that is one of the few things I know for sure.

I'm not writing this to open discussion about the ways and means of medical insurance companies. Let the editors who are real journalists do that. After much prayer, I know that approaching this type of situation from a place of bitterness and resentment about questionable corporate practices will not help Loren or the hundreds of other children whose lives may be changed by having access to this miraculous device should BCBST grant it. I approached today just like my own momma told me to do. Feel free to report that this teacher prayed in school today. You better believe I did. I didn't pray for patience, forgiveness, or snow. I sat at my desk and bowed my head and prayed for God to give that panel of reviewers true grace in their hearts. I prayed for God to give them courage to make a decision that might set the precedent for generations of children yet to be born. I prayed for Loren to be the little girl that changes this aspect of medical practice in Tennessee so that it might be shared by other states in the years to come.

No mother should have to ask for breath for her child, but today, my friend had to do just that.

As I've said before, when I grow up, I want to be like Loren's mom.

A Single Rose in Pasadena on Day 972.

Most of you know that my friend since childhood, Bridgette, made a donation to the Donate Life Tournament of Roses float in memory of my husband, "H." I should have come here to "hellofuzzy" then for proper explanation, but I was so overwhelmed and shocked that compiling complete sentences would have been a challenge.

I'm writing this today in hopes that at least one of you will be convinced to sign the back of your driver's license and become an organ donor after you read this blog. I'm not asking you to do it for me; I'm asking you to do it for the ones you leave behind.

Technically, he has been gone for 972 days. I can't stop the counting. Tomorrow I will wake up and know it is 973. I wish I could stop the counting, but I can't. Waking up is the worst, and that's when I will say 973. I say it to remind myself of how far I've come and as a tiny prayer that God will do something positive with my life during 973 like He has done today with 972 by sending us a warm smile while watching the parade.

Mainly, I hope to maybe write about our family's experience with organ donation to help you get a better understanding of what to expect for yourself and your loved ones. There was a lot I didn't know at the time, but now it all makes sense to me.

Time is of the essence, and gosh, it was difficult for me to keep composure. I was at a point where I wanted the world to stop, but H being a donor meant that the work ahead was crutial and there was no time to stop. Period. City law enforcement arrived first as with any similar situation, and the first question they asked was if he was an organ donor and where was his license. Once they read he was an organ donor, everything sped up to a rate that was so fast everything sounded like Charlie Brown's school teacher and I couldn't translate. Remember spinning on the merry go round at Ford's Woods and looking up at the sky while you did? That's how my head felt, and my heart was in a million tiny pieces. In fact, "fast" is about the only thing I can tell you I really do remember until my phone rang.

Someone from Tennessee Donor Services called and called and called. Holly very patiently handled that for me. Finally, she and others said, "You have to do this now."

After my husband left home, I hid here in my computer room with friends holding my speaker phone while I answered hundreds of questions about his social and medical history. I could not imagine being the person who has that job to call. Regardless of her salary, she earned it ten times over that day. The interview took an hour and forty-five minutes. Now, you need to put yourself in this analogy: a typical movie lasts a little over 90 minutes these days. Who in your family do you want to answer questions about you for that long after you are with God ? Please pick someone to do it. Pick several. Prepare them for the difficulty but encourage them to give the information because they will be helping to save lives within hours of hanging up the phone. The questions are blunt, personal, and scary. The truth must be told, and in the end, the gift of life can be given to a total stranger who may be the very person to cure heart disease, cancer, or birth defects...especially if the recipient is a child.

The donation procedures before the visitation services limit what you can do at the memorial services. Depending on the types of donations your loved one is capable of giving, you and your family might need to make practical decisions about your loved one's viewing. Just take a deep breath and know that doing so is providing life. Knowing I'd see him again some day was my greatest comfort, but knowing someone was gaining life from him at that moment was a healing I never knew before.

After the services were behind me, and the quiet came, those were the days I found most difficult. The people at Donate Life know that. Soon, your loved ones will start getting the most amazing correspondence in the mail. Donate Life will make contact on birthdays, anniversaries, and holidays. In the fall though, your loved ones will get a very touching invitation.

Your family will be invited to a celebration of giving in Knoxville. They will be asked to bring a quilt square to represent your lost love one. The quilt squares are all assembled together and go on tour around the state to encourage organ donation. I made H's square from his blue jeans. One strip for every family member made the base and then a pocket on top. Leigh Anne took it and had his name and a dove embroidered on the pocket. Upon our arrival at the ceremony, I gave it to a volunteer to place on a quilt board for all to see.

You will hear testimonies from organ recipients. You will meet parents who lost their children but found peace in giving life. You will be surrounded by a kind of calm and silence I never knew until that day. Josh accepted a medal to honor his dad as a donor on that day during the ceremony.

The Donate Life organization does everything as right as is possible to bring comfort to those who gave and celebrate those who receive. At the end of the day's event, each person in attendance is given a note card to attach to a balloon. The balloons are released as guests depart from the ceremony. The sky is speckled with faith, hope, and love all directed toward Heaven.

My note read as follows:

I'm not writing this for sympathy. I'm writing it to hopefully enlighten you about the unknown and encourage you to have a very important conversation with your family about being organ donors.

Day 972 has been a wonderful day. The girl I met standing in the hallway while we waited to get on Bus 3 in third grade took the time to acknowledge my husband's gift of organ donation in the Tournament of Roses Parade about 32 years after I met her. My husband's name was attached to a rose on a beautiful float filled with families of children whose lives were lost in horrific tragedies but found a way to fulfill a purpose through the pain. The float and its story were beautiful and very humbling.

Fulfilling a purpose through the pain is what I think we have to do. Scratch that. It's what we're supposed to do.

If you need a pen to sign your organ donor consent on your license, let me know...I'll get one to you.

I wish you all a happy new year filled with peace of mind and spirit.