Before and After

Last week, I sat in the doctor's office with Emily, seeing another Crohn's specialist and answering those "first visit" questions. He asked when she began a certain medication, and at first, neither one of us could remember, thinking it was in early 2016. He looked oddly at us, we had answered all his other questions with specific dates and information, never hesitating but suddenly, both of us drew a blank. I had to explain; the same old explanation we've been giving for 547 days (1 year, 5 months, 29 days): "in July 2016, my husband, her father, passed away and 2016 is really a blur". I wonder how many times in the past year and a half we've had to say that sentence? How many times have we heard the odd "I'm sorry" and felt that weird silence that immediately accompanies the I'm sorry?  More times than I can count, I assure you.

When we finally came up with the date, October 2015, Emily said "I remember, it was before, Dad and Chelsey took me to my first infusion". Suddenly, I felt a pang, the word before stinging like an old love song. Before the world went dark. Before our heart's broke. Before life stopped. Before the end. Time is now measured in before and after. Each day, Ryan, Emily and I inevitably refer to time as just that; before and after. When did we buy that vacuum cleaner, oh, before. When is the last time you talked to them, oh right after. We don't mean to measure time like that but it seems our brains have decided to that's how it will be from this point forward; before and after.
Before, Trouper went to her doctor appointments and sat with her on infusion days. After, I try my best to go with her and no more infusions, they didn't work. Before, she would go to lunch with her Dad and usually, he would buy her something to make her feel better, even when she was 20 years old. After, we both rush off to work, always too busy for lunch and a treat.

I miss Trouper all the time, in really ordinary situations but now, I understand how Emily misses him and one of the specific voids he left in her life. While I was busy worrying about him, and navigating his health issues, he was busy navigating hers. She was diagnosed the summer after her freshman year of college and by then, he was over a year into his own medical crisis. That allowed him time to sit at the hospital, go to her doctor appointments and hold her hand. I'm not saying I wasn't there but Troup and Emily shared something not many people will ever share; chronic illness. Even before they were unbelievably close and shared much more than illness. They have the same happy disposition, same sense of humor and people always seem to gravitate to the them. They love cartoons and for the rest of time, the Minions will remind her of her Dad. Ryan and I often got thrown aside, or outvoted, when the two of them teamed up. More than once I mentioned our household was us vs. them but I was assured that wasn't the case even though deep down I knew it was. I'm not mad, both kids got plenty of his marvelous, and not so marvelous, traits. Ryan knows music and movies like the back of his hand, just like his Dad. They would exchange info on new bands and music on a daily basis. They shared a love of odd and foreign food and more than once would be running out the door, and say "we didn't invite you because we are going to have......" and it was some food I wouldn't dare eat. Ryan also inherited Troup's moodiness, well both kids did, and I can look at Ryan, just like I could look at Troup, and know not to bother him. Emily and Troup shared a love of naps and sleeping late. They would stay up all night, finally going to bed at 6am and sleep till 6pm. Even now, even AFTER, these traits are still prevalent and I've learned that this is who they are and that's the legacy of being Troup's kids.

So today, as I pondered the bad weather, I thought "before, when there was ice on the ground, my biggest concern was making sure Troup had batteries" and again, felt that pang as I whispered before. Before and after, the yin and yang of my life.

Twenty Five on Twenty Five

Twenty five years; in the blink of an eye they were gone yet so many memories remain. Jubilant, amazing, and wistful memories of two lives that became one. Two teenagers with broken pasts who found one another and clung to hope. With nothing more than words to our names, we gave each other all we had and for twenty three years, seven months and eight days, that was enough. Just babies when we repeated the words "in sickness and in health" never realizing how very important those words would become, but always knowing we would give it the old West Texas try and make it work. And it did, and it still does. That day, we didn't promise yesterday, today and tomorrow because we didn't truly know what that meant but looking back I like to think we did, or maybe the Good Lord just made sure we did. I want to remember that day, twenty five years ago and the days leading up to it and the ones that proceeded it. They made me who I am and, in tearful moments, bring a smile to me. So here are my twenty five on twenty five.....

1. When Trouper jumped off the pump jack, after asking me to marry him, he said "when you realize you want to spend the rest of your life with someone, you want the rest of your life to start as soon as possible". Everyone around us just oooo'd and awww'd but I just laughed, we had watched When Harry Met Sally the night before and Troup was quoting a line (even though it was a cute line) from the movie. It wasn't a Troup original but of course he tried to play it off as his own.
2. The afternoon of our wedding, he knocked on my door (I was using a Sunday School room as a bridal suite) and my sister told him he couldn't see me, it was bad luck. We had already seen one another that day so I insisted she let him in. He asked her to step out and he said "I'm not sure how long this will last, but I just want you to know I've loved you since the moment I met you and even when this is all over, I will still love you".
3. It rarely snows in Odessa, Texas especially in early December but on December 5, 1992, when we went outside to head to our honeymoon, it was snowing. We stood outside for a minute and laughed that we had a real winter wedding.
4. We planned our wedding in a month and planned it for December because our church would already be decorated for Christmas so naturally, our colors would be hunter green and burgundy. 20 year olds don't have the money for anything, much less a wedding so we saved where we could save.
5. Speaking of saving money, Trouper needed a haircut so the night before our wedding, his Mom cut his hair and he hated it. She shaved the sides too high, especially on one side but he just laughed and said that was his bad side so he would just turn the other direction during pictures.
6. When you're 20 and decide to get married the only question you are asked is "are you pregnant". Trouper came up with a Trouper-original response. "No, but it's not for lack of trying. You know condoms and pills are expensive!"
7. On our wedding night, we had a few bottles of wine. He drank one by himself and was rather tipsy. I've told his dancing story but few people know that he called his ex-girlfriend, Angela. She hated me no doubt about that and had told anyone and everyone that would listen that I was either a) pregnant or b) marrying him for money and c) she'd be shocked if he actually went through with it. All three were laughable. I already had a 9 month old so another baby wasn't even on the radar and the money theory was hysterical. Trouper worked at KMart when we got married and I don't recall getting rich off KMart money. So while I took a shower, in his drunk stupor, he called her. He told her off, in his nice Trouper way, and told her he would call her again on our 25th anniversary. I don't know where she is these days but I wish I could call her and let her know we made it and both took the "till death do you part" portion very seriously.
8. The Fleaz; a band of brothers formed by three crazy kids. Drugs, sex and rock-n-roll defined their friendship but so did loyalty, love and admiration. I was the outsider. I wasn't one of their girls, I didn't follow blindly or take any crap. I became the Mom of the group but still, one of them getting married was out of the question. It meant the end of an era and they voiced their opinion on the subject more than once. But they still showed up that cold Saturday night in December and in our wedding book, wrote their names and the word "Fleaz" beside it. I will never forget the hot Sunday morning in June, almost 24 years later, when two of those crazy kids traveled 1200 miles to walk into a hospital to say goodbye to the their brother.
9. Trouper loved music and we fought about what music to play at the ceremony. I knew I wanted Carla Rogers, who I had known most of my life, to play the piano but Trouper, in his dire devotion, wanted Stay by Pink Floyd. Pink Floyd at my wedding? Not just no, but HELL NO. I don't know if I actually won that argument and don't remember what I had to promise in order to get my way but I do know that the sounds of a 1970's rock band weren't heard that day.
10. My Dad gave me $500 dollars to buy my wedding dress. I went to a bridal store in Midland and bought my dress, an ivory gown with an open back and lots lace and pearls, for $199, alterations included. Guess I didn't do too bad because two other people have asked to wear it on their wedding day and now, it's in my closet, waiting on Emily. She wants the pearls and some of the lace to add to her flower arrangement when she walks down the aisle one day and while I will be a little sad cutting it up, I am so honored she loves it as much as I do and wants it represented on her special day.
11. My Grandmother bought our wedding and groom's cake. From Albertson's no less. Guess what flavor the groom's cake was??? You're right if you guessed yellow with chocolate frosting. Same as every birthday cake I baked on September 12th for the next 23 years.
12. While I'm on the subject of cake: We had a fight the night before our wedding. I won't go into why (wasn't about cake) because it doesn't really matter but we spent the night apart and didn't see one another until our rehearsal on Saturday morning. He asked me if I was still mad and if I was still marrying him to which I replied yes to both. He said "well, good thing you look beautiful when you're mad and I'm not going to lie, I've been thinking about that cake all day so I'm really happy you're still willing to do this, I need some cake".
13. Trouper was really torn about his best man. He wanted ten groomsman but I said no, one. It was a small, quickly planned wedding and I didn't have time to pick ten bridesmaids. So he asked Jason Wheeler, knowing it would hurt some feelings. Jason and Troup were closer than brothers, and Jason had never said anything bad about me, in fact, only encouraged Trouper to make a move and finally try and win my heart. In my head, I can still see the two of them, standing at the alter, looking handsome with big toothy grins. We always planned on having another wedding, ironically on our 25th anniversary, and I told him he could have as many groomsman as he wanted.
14. We went and saw The Bodyguard on our honeymoon. Trouper always said it was the beginning of him never being allowed to choose a movie again. He was right.
15. My MIL, Teresa, made my veil. It was a headpiece of flowers for a headband and tulle. It's still on a hanger in my closet. When I was packing our closet to move last year, I put it on and wore it for hours. I forgot I had it on when the movers showed up. I'm sure they thought I was crazy.
16. We had one video of our wedding and many mistakes were made regarding that video. About a month after the wedding, we watched it on his parent's VCR. First, the video wasn't marked, second, we didn't make copies and third, his Dad recorded Star Trek over it. Bet you can guess what our first big fight as a married couple was.....
17. Ryan was nine months old when we got married. He went with us on our first date, to La Bodega, when he was a month old in April of 1992. Trouper said he felt like a Dad from the moment he officially met Ryan, on Easter Sunday after Ryan had his kidney removed the week before. He had met him before, through a window the night he was born, but didn't get to hold him until Easter. My Mom bought him a little Christmas suit to wear for the wedding and Christmas and he sat front and center, with her and my Grandma Dorothy, laughing and smiling.
18. My Grandma Dorothy adored Trouper and said he was the smartest kid she ever had in her Sunday School class and he always knew his bible verse each week. He broke it to her, many years later, that he only learned the verse to get the candy or doughnuts she brought as a reward each week. In fact, he was the only 15 year old allowed in her middle school Sunday School class. She was sad I was getting married so young but ecstatic it was to Trouper. She treated him as one of her own from day one.
19. I didn't tell my Mom where I was going on my honeymoon, not that it was some exotic place (Midland). I did, however, call her once a day and check in because she was taking care of Ryan. She didn't approve of Trouper, certainly didn't approve of her oldest getting married and I didn't trust her to leave us alone for three days. Kinda shady on my part yet kinda funny too. She and Trouper ended up having a wonderful relationship and I secretly think she likes him more than me. On the subject of honeymoons, we went on what we called our delayed-moon three years later, to Las Vegas. Guess what we came back with? The gift that has kept giving for 22 years, Miss Emily Jene'.
20. We always said if we had been smart, we wouldn't have gotten married in December. We always put off our anniversary because Christmas was three weeks away but planned on a big trip, and renewal, for our 25th.
21. One of the funniest stories around our anniversary was the year, and I believe it was our 5th or 6th anniversary, when Mom and Janet almost got arrested. Trouper's parents had the kids for the night, we went to dinner and had just gotten home for some "alone time" when Janet called. She said "Dara, you better get down to the Holiday Inn, your Mom and I are about to be arrested". Hilarity ensued, bans from Holiday Inn were made and 3am meals at Denny's were eaten. By the time we got home the sun was coming up and we were too tired for "alone time".
22. For our 20th anniversary, the December before Trouper got sick, he bought me a beautiful new (and large) wedding ring. He and the kids planned an elaborate night, which included a maze of pictures, game of Clue and at the end, Troup on one knee. It was one of the most special moments of my life and I will wear that ring until I take my last breath.
23. My brother, Bumper, didn't go to our wedding. He was young and under the influence of my step-dad. My step-dad refused to go because I said he wouldn't be walking me down the aisle because let's face it, he probably would have tripped me and laughed, been drunk or tried to flirt with one of my friends (probably all three). Anyway, years later, when my brother got married, him, his friends and of course Troup had a very comical night before the wedding which included a nasty story about Denny's Moons over Myhammy. I see a Denny's theme, but anyway, Bumper apologized to Trouper that night for not coming. It meant the world to Troup and they had a really special bond.
24. We celebrated one of our last anniversaries at Piedmont Hospital. The nurses let us go down to Au Bon Pain for lunch and Ryan brought us dinner from Uncle Julio's. Ryan, his friend Mark, Troup and I ate and laughed. I asked him what he would have done differently all those years ago and he said nothing and I knew he meant it. I spent the night with him that night and we held hands in the dark and he cried. I asked him why he was crying, at least we were together and he said this isn't how we should be spending our anniversary. I said well, you've got a few years to plan an amazing 25th so get busy mister. He replied okay, but do I have to get your approval or can I play Pink Floyd? I laughed and said Pink Floyd is just fine.
25. I used to imagine the things I would change about that night, all those years ago, but truth be told now, I don't think I would change one thing. We married at the place we first met; Open Door Assembly of God, surrounded by the people we loved and the ones who loved us. It was a magical night topped off with snow and lots of love. My sister said it best, at Trouper's funeral. "Doesn't matter how big and fancy your wedding is, all that matters is the love you feel". And while we were just kids making adult commitments I think we did just fine. We have two beautiful children and and a lifetime of memories. If I could change anything, I would strike a bargain with God and give us twenty five more years together.

Spoiler Alert, The Hero Dies....

I write about Trouper all the time, just as I think about him all the time. It's always truthful and positive, because that's how he lived his life, much of the time. I read in another widow's blog, whose 3 years into her widow's journey, that someone commented she posts too much on social media about her spouse and another person said it was always positive, and made her spouse look like a saint, which they knew he was not. So I asked myself the same questions a) do I post too much about Trouper on social media and b) is it all positive and the answer to both is yes. 

The reason I post so much is because he is my life. Not was my life, he is. In the story of my life, he is the hero. He's still a daily part of my life; I still talk about him, laugh about him, cry about him and long for him. I always will. He's still a permanent fixture in our home. We sit in his chair, I still wonder aloud to him when I'm cooking something new and I sleep in one of his shirts almost every night (so does Emily but that's because she "borrows" them). His ashes are prominently displayed in our living room and I will add that there is a lovely lipstick mark on his urn. So, if someone in my life feels I post too much about Trouper on my social media pages, they can simply delete me as a friend. Trust me, you won't be the first or the last and it won't break my heart. My heart is pretty strong, as I've come to learn and someone not wanting to "be my friend" on FaceBook won't break me. As I said he is the hero in the book of Dara and I will talk, write, sing, cry and post about him whenever and where ever I feel like it and I don't care if it offends you. Maybe you posting 900 cat videos offends me. 

Do I only post positive things about Trouper, you bet. But, just for the record, I'm still in the beginning chapter of losing my hero. I'm sure you've noticed, or even done it yourself, but when someone dies, especially so young, they become a saint. I noticed it when my brother died and it's true about Trouper as well.  Where either one of them saints, HELL NO and while I speak about the good much more than the bad, it doesn't mean I've forgotten there was any bad in the first place. Trouper was a complicated man. He was the most comical, outgoing, loving and kind man I've ever met. He treated everyone with respect, and thought that everyone in this world was just as kind as him. But he was also stubborn and loved to live in excess. He knew what buttons to push and would push them before you could even spell the word buttons. He was loyal, to a fault, and it caused more than one argument between us and, in the last few weeks of his life, was a major point of contention. But just because I don't detail his bad traits, or the bad moments we had, on social media for the world to see doesn't mean I've forgotten them. He was a complicated and flawed man, who had a difficult early life, just as I'm a complicated and flawed woman who had a difficult early life but in reality, that didn't matter to us. We would get happy just as quickly as we got mad and at the end of the day, we both knew that we could count on one another for anything. We fought a hard battle and I didn't do it for likes or positive messages on FaceBook. I did it because he was my person, my hero and he deserved the chance to walk his daughter down the aisle, hold his son's first son and sit on the back porch with me and Maximus. I'm proud of the last four years; the good, the bad and everything in between because I proved to myself that no matter what, I can be counted on and strong when it matters most. Do I care what other people think, no, not anymore. Because when the hero of my story died, so did my ability to care what people think about me. I know my truth, and his, and I know we fit perfectly together, flaws and all. 

So in the end I will continue to talk about Trouper in any light I chose and I can confidently say he wouldn't mind. If you didn't know him, he was not private in the least and would tell you whatever you wanted (or didn't want) to know about his life. And while the hero has left his spirit and legacy didn't, and it's my job to keep it going and I take my job as the heroes wife very seriously! 

Milestones

A year ago last month, I was initiated into a club no one wants or chooses to join. On a hot July morning, I walked into a room a wife and left a widow. I actually hate the word widow, I'm still Trouper's wife, we are just separated at the moment.

I'm still learning to navigate this life of separation and learn to deal with milestone days without my beloved by my side. I'm learning to trust God again because, after a three year journey where I put all my trust and hope into him finding us a perfect heart in his perfect time, I was left clinging to faith. Trust me, a true test of faith comes when tragedy hits, if you disagree, check out the book of Job.

I'm also learning to be courageous when facing milestones. Everyday milestones, like root canals, doctor appointments, even grocery store visits can be tremendous acts of courage when you do them alone for the first time in twenty five years. Courage is getting out of bed and letting the dogs out when I'd rather pull the covers over my head and cry. I also notice ordinary acts of courage much more than I did before I joined this club. A middle age woman eating alone at a restaurant or an older gentleman buying TV dinners at the grocery store. Some days, I want to pat myself on the back because I made it through the day without crying then, driving home, a song triggers a tsunami or I go to my closet to retrieve a shirt and see a pair of his shoes or his favorite Texas jacket and I fall to the ground, gasping for air. Those times I don't feel very courageous.

A major milestone will be my 45th birthday in a few days. Yes I know it's not as major as turning 21 or 40 but to me, being half way through my 4th decade is MAJOR! Trouper used to joke that when I turned 40 he was going to "trade me in for two 20's" to which I replied "if you can a) find two 20's that will take you and b) keep up with them than c) have at it". Now, I'm able to laugh and take comfort in memories like that, and remember that the Bible tells us "blessed are those who mourn, for they shall be comforted". Not only am I comforted by memories but I've been comforted by friends, loved ones and even strangers who often turn out to be someone whose life Trouper touched. Finally, I'm learning to keep my eyes open so that God can comfort me. Butterflies in the early morning when I drag myself out of bed and let the dogs out or his smell on his favorite Texas jacket that will always hang in my closet bring me comfort through my tears. And maybe, if I play my cards right, one day when I close my eyes in this world and open them in the next, the first thing I will see will be his smiling face and and the first thing I will hear is him saying "hey babe".

A Short Moment in Time....

For a short moment in time we are teenagers surrounded by friends and family at a small church in a small, dusty and beloved West Texas town.

For a short moment in time we are young adults facing monumental decisions but not facing them alone because as you tell me on a daily basis, we will always have one another.

For a short moment in time we are young, tired parents with an active 3-year old whose covered in chicken pox and a baby on the way.

For a short moment in time we broke one another so badly that its hard to imagine there's enough glue in the world to hold the pieces of our life together.

For a short moment in time we are waving goodbye to our home, our safe place but also our demons and headed east to a new home and a new way of life.

For a short moment in time we are young parents who scrimped and saved and took a wide eyed 5 year old and a hyper 8 year old to Walt Disney World for a vacation that would stay in our memories and provide joy and comfort to us for many years to come.

For a short moment in time our lives are crazy with work, two active kids whom we spend hours each week taxing to cheerleading, basketball, cub scouts, parties, dances, PTA, school and everywhere in between.

For a short moment in we are beaming with pride as we drop our once hyper 8 year old, now high school graduate, off at college realizing that leaving our safe place all those years ago was the right decision.

For a short moment in time we are standing in a room, listening to machines and doctors, praying for one more day.

For a short moment in time we forget about medicine, doctors, nurses, and cheer our cheerleader as she leaves high school behind and starts a new adventure at a new school in a new town.

For a short moment in time as we pray for more days as we realize how precious yet short our time on earth really is.

For a short moment in time we are in a room filled with love, heartache and tears while all the moments in time we've shared together fill my mind and make goodbye even harder.

At that moment, on July 13th, 2016 at 11:36 AM, short moments in time stop and are replaced with long moments of grief, heartbreak, tears and a longing that can't be put into words.

1440 Minutes

What’s in a day? For starters, one thousand four hundred and forty minutes, which sounds like a lot but in the end, is never enough. February 16^th, 2013 was no ordinary day and those 1440 minutes dramatically changed the landscape of many lives. What do I remember about those 1440 minutes? I remember the sounds of Trouper telling me he felt like he was drowning and I remember the nurse who told me if I couldn’t hold myself together I had to leave. I remember Trouper mouthing “I’m sorry and I love you” and I remember old Dr. Blincoe whose glasses always seemed to be at the end of his nose, which I despised at first but came to love as the years rolled by. I remember sitting on the floor of a hallway for what seemed like days, the same floor I would sit on the morning I said goodbye. I remember the faces of friends and family who rushed to be by our side; the look on TJ’s face as he said “Dara, I don’t think I can do this” and the sound of my Mom and Sister’s voices as they hugged me and said “don’t worry, we’re here”. What I remember most was bargaining with God. I know you’re not ever supposed to do that but I didn’t ask for much, just another 1440 minutes. God was listening and he gave us not only 1440 minutes, he gave us 1,802,880 minutes (3 years, 5 months and 2 days). I’m beyond grateful for every minute we were granted and while I would change a few things, for the most part I’m satisfied about the way our family, especially our Super Trouper, chose to live those minutes. He filled them with love, gratefulness, forgiveness, faith, reflection and hope. But, as the 1 Corinthians 13:13 tells us, the greatest of these was love. He gave and received love from all over the world, from people he’d never met, from people he hadn’t heard from in 30 years and from people who lived in the same house. So on the anniversary of the 1440 minutes that changed my life forever, I want to ask you for something. As my Mom said earlier today, live like Trouper. Not only live but love like Trouper. Even when he was at his worst, he still managed to let everyone know how he felt about them. Above all else, that was his greatest accomplishment in this life. He once said the love you give is the love you receive and that was a running theme in his life. He gave love and got love, and in the end, that love has carried me through the past 267840 minutes since I said “see ya soon”. Just remember, if you’re thinking about someone, let them know. If someone has hurt you in the past, forgive them and move on and if you love someone, don’t forget to say it, shout it, show it and mean it because this could be the last 1440 minutes you ever have with them. And this my friends, is what love looks like.......

Yesterday, Today and Especially Tomorrow

For almost four months, I've thought about this blog and what I would say or how it would end. My blog has been all about Trouper; our love, our struggles, our joys and our heartbreaks. I thought, did it end on July 13th, when he took his last breath or perhaps June 20th, when his fight took a different turn and he was placed on full life support? Then I remembered something we always said to one another; I love you yesterday, today and especially tomorrow. Just because he isn't physically here doesn't mean I can't continue to write about him, share stories and things about him that perhaps people might not know. I've also been contemplating a book; a book about our life together from the moment he saw me sitting in front of church, reading a note from another boy, to our last kiss on a warm, sunny July morning. A book I will call Yesterday, Today and Especially Tomorrow because that's what life is; it's full of yesterday's adventures, today's surprises and tomorrow's hope. Trouper was all three; he loved adventures and spent lots of his yesterday's seeking them out (and always had a story and often a scar from those adventures). He never ceased to amaze me with his daily surprises and he always had hope that a better tomorrow was on it's way. Once, he told me something that has really resonated with me the past four months; life is short and doesn't come with a pause or rewind button. Enjoy every moment; the good, the bad and the even worse and do it with love in your heart. He often told people (and it was said a few times at his memorial service) the love you give is the love you receive and I can certainly tell you that Trouper Gamble gave and received more love in his short 42 years than some do in 90 years. So, my friends, this isn't the end of the Team Super Trouper blog, it's just going to take a different path. One that he encouraged, and so many other people have encouraged; a book about our yesterdays, today's and our tomorrows. Bare with me while I test chapters out on you and please, feel free to offer suggestions and help because I need all of them I can get.

One last note. People continue to ask how the kids and I are doing. Truth is, it's a minute by minute type thing. You never know when grief will hit you and you become a blubbering mess and while I've been told it gets better, I can't even begin to imagine how. The three of us are surviving together. Trouper always had faith we would, he knew we were a strong family with an unfaltering love for one another. We have always relied on each other when things got tough and that's made us closer than most families. We've seen the bad but we've met that bad together. We've also had such an outpouring of love, support and prayers and for that, we are eternally grateful. Trouper touched so many people, and in the end, he wasn't just our Super Trouper he was the world's Super Trouper and I'm happy to share him.

XO Dara

House on Muskingum

Trouper has been in Texas for 30,240 minutes (or 21 days). I miss him terribly, especially at night. We don't often go to bed at the same time but at some point during the night, he always comes to bed and I feel he's there and sleep a little better. My sleep is now more restless than ever and I am either having very unusual dreams, or not sleeping at all. Last night, I dreamt of a place I don't think of much but holds a very special place in my heart; Muskingum.

My grandparents purchased 2119 N. Muskingum in 1947. It's where my mother grew up, where I spent every weekend growing up, where Ryan and I lived when he was born and where Trouper and I kissed for the first time. It's where our family celebrated good times like Christmases and birthdays, and gathered during difficult times like when my precious Papa went to heaven. Each Sunday, after church, my Grandma took her afternoon nap (in the back bedroom) while my Papa and I (often joined by my sister and brother) watched westerns, ate peanuts and drank Cokes. Before every prom or dance, we stopped by Muskingum to show off our pretty dresses to not only my Grandparents, but all our Muskingum family. Our Godmother, Dorothy Froelich, our adopted Aunt and Uncle, Hazel and Jack (who owned a HUGE peacock) and my friends Christina and Andy were just a few of the neighborhood family. Last night, I vividly dreamt of the time Dorothy paid my cousin Brad and I to clean her backyard. My Grandma had surgery and Brad and his family had come to town to visit. We decided we wanted to earn money to buy Grandma some flowers so we headed across the street and asked Dorothy if she had any chores we could do. She said yes, she needed her backyard cleaned so we headed out back and walked straight into a jungle. The weeds were taller than we were and you couldn't even see the back fence the brush was so dense. Brad and I pulled weeds for hours, until our little 10 and 8 year old bodies couldn't do it anymore. We had made a pretty good dent in the jungle and Dorothy rewarded us with 5 dollars. Not 5 dollars each, but 5 dollars together. We were pretty smart kids and knew we were getting ripped off but nonetheless, Aunt Glenda drove us to TG&Y. We didn't have nearly enough for the pretty flowers and vase, so my Aunt generously pitched in the rest. We never went back to finish the job, God only knows what that place looked like when Dorothy passed away in '99.

When my sister was born, during my parent's divorce, we lived next door and I was in heaven. I could walk next door to my Grandparent's house and eat breakfast (my Grandma made a HUGE breakfast every morning) or go over and sit in the front porch and people watch with all the neighbors. When I was 8 and my sister was 3, we got a baby brother. We were so happy, we ran outside, saw Dorothy sitting on her porch and yelled "we got a boy". We played slip and slide in the yard, walked to Dairy Queen for ice cream sandwiches and sat on the front porch for hours. It was a magical place and often, solace during times of trouble.

Perhaps that's why I visited it last night, my mind knew I needed to go somewhere safe, somewhere special, and comforting. It was my touchstone for so many years, in fact there aren't too many high school kids that spent every weekend with their grandparents but I did and I wouldn't trade a moment. Last night's visit to Muskingum worked it's magic and I feel a little better, and I'm ready to face whatever is headed my way with a smile and a warm heart, knowing that my family from Muskingum is looking down, smiling and cheering me on!

My boy

I feel like I write about Trouper and Emily much more than I do about Ryan. Perhaps that's because they are both sick, and seem to need me more than Ryan does. Maybe it's because he is my oldest child and the oldest children often get lost among the chaos of life, and younger siblings and sick parents. I know, I was the oldest child who had two younger, overachieving, often needy siblings and I was often lost. It happens, I'm not bitter and I've moved on but that's just the way it was on Hemphill Street, Odessa, Texas circa 1985. Today, I am going to write about Ryan who, just so happens, celebrated his 24th birthday yesterday.

Ryan began his journey on this earth at 4:21 on March 24th, 1992. I was 20 years old and scared to death. We knew there was something wrong with his kidney before he was born, but wouldn't know the extent until he made his entrance that warm, spring afternoon. It was spring break in Odessa, my sister was at home, my brother was off on a trip and I had been staying with my Mom and Stepdad awaiting Ryan's arrival. My contractions started pretty early that morning, so my Mom and I headed to the hospital. My OBGYN wasn't the greatest, in fact, he was kinda rude and looked down on single Moms but I made the best of it. I had some big decisions to make and he was strongly encouraging me to go in one direction and when I didn't go that route, he got worse. All that aside I was released a few days later and Ryan, the following Saturday. I remember that Friday, Kyna and I went to the hospital and sat rocking him for hours, I felt so bad leaving this little baby in the hospital alone. Luckily it was only for a day and the next, we started our journey together in the outside world. The following months were hard, Ryan had his kidney taken out on April 16th in Lubbock and two weeks after that I was back at work. I was never a bad Mom but I was so young and made mistakes, I'm just fortunate that Ryan allowed me to make those mistakes. He was a good baby, and when he did get fussy, we would drive him around and play the song "Under the Bridge" by the Red Hot Chili Peppers and it always calmed him down. Trouper and I got married when Ryan was 9 months old and we were ready to be a family. Emily came along three years later and he was immediately a protective big brother. Ryan was the first grandchild, the first nephew and has always been the apple of his families eye. My brother adored Ryan. When Ryan was 3, he got the chicken pox so severe they covered his body, even his throat and mouth. My brother came over and watched The Brave Little Toaster for hours with Ryan. I can still see both of them laying on the sofa, eating red (they had to be red) Popsicles. They were two peas in a pod and when I look at Ryan, I see so much of Bumper.

As the years rolled on Ryan played basketball and rugby, was a cub scout until he went to middle school and being a scout was uncool, and was in chorus all the way through his senior year. Ryan became more reserved over the years and, is the introvert of our family. That's not that hard when you live with Trouper, who is always the life of the party and probably doesn't even know the definition of introvert. We've been through some bad times but some really wonderful times with Ryan. He is a wiz at movie trivia, if you want to know a show to binge watch on Netflix, he's your guy and loves to go kayaking and relax on the water. More than anything, he is still a protector. Last year, after one of Em's hospital stays, he went and stayed with her for a week, driving her to class, making sure she ate, helping her with meds and hanging out and making sure she was taken care of. Even though he is an introvert, he excels at personal conversations. He would talk to anyone, anywhere and loves to talk to older people. When Trouper first had his heart attack Ryan struck up a friendship with a elderly man and would spend hours everyday talking to him. It helped pass the time and gave him an outlet. 

Now, my little boy is a man and facing challenges, decisions and adventures and I want nothing more than to see him succeed. I do wish he would find a nice girl to hang out with, even if she has tattoo's and piercings. He's so lovable even though people tell him all the time that he's handsome, I don't think he believes it. But I know 2016 is the year of Ryan, and as he celebrates his 24th trip around the sun, he won't do it alone, he will always have his personal cheerleader by his side, along with a crazy Dad and a devoted Sister....

Three Years

Three years ago my biggest concern was my son turning 21 and my daughter graduating high school. Three years ago I was planning a spring break beach vacation for a gaggle of high school seniors.
Three years ago I only saw the doctor a few times a year and didn't have a case manager at Aetna.
Three years ago I didn't know what an LVAD was.
Three years ago I didn't know organ transplant statistics.
Three years ago when we left the house, we didn't worry about batteries and supplies.
Three years ago life was much, much different.

Tomorrow, on February 16th, we observe Trouper's "heart-aversary". February 16th changed our entire family, not just Trouper, the kids and I but our extended family as well. We went from an average, middle income family to, well, not an average, middle income family virtually overnight. We got a crash course in cardiology, economics, and hospital policies. We learned who we can lean on and who we can't and to be honest, I fell in love with my husband in a way I never imagined. He is a fighter, but so are the kids and I and we are fierce and protective of one another. Most families feel that way but most families never have to deal with a chronic, often terminal illness.

Today, our battlefield stretches several states as we take the next step to get Trouper a new heart. Our love is different, our family is different and our view of life is different. Not worse, just different.
I'm different, I can feel it. I look around me and want to scream at the people who don't appreciate their life. My patience is gone and often, the tears are too much. But I still have hope and that won't ever change. It's what gets me out of bed in the morning and gets me through the day. I have hope that despite all the darkness, there's light out there and it's within our reach.

Yes, three years ago our universe was different but I thank God we were given these three years because so many people don't get that precious gift. I will keep fighting, keep researching, keep working, keep smiling and keep praying...but above it all, I will keep hoping.....

Unconventional Thankfulness

It's November and Facebook is full of the "Thankful Everyday" posts. I have done my fair share of thankful shout-outs in the past but this year, I wanted to take a different approach and share my thankfulness on the things people often forget or overlook. Sure, I'm beyond thankful for my friends and family, for their unconditional love, wisdom and strength, and for being an anchor in my stormy life. But the smaller things in life, the ones that we often take for granted or go unacknowledged are the shout-outs I want to give this November. So, for what it's worth, this is my list of unconventional thankful shout-outs:

1. The boy who broke my heart, or, as Garth Brooks says, my unanswered prayers. Twenty five years have passed and now, as a 43 year old, I'm so grateful that my first love broke my heart. If he hadn't joined the military (and gone to college in another town) we probably would have gotten married and I would be a housewife in West Texas. Not that there is anything wrong with that and everyone know's that West Texas is where my heart is but that wasn't God's plan for me. He wanted me to be Ryan and Emily's mom. He knew that my hand fit perfectly in Trouper's and that we were meant to live in a city that never stops. Better yet, he knew that I was strong enough to travel the journey I'm on today and that I was needed for bigger and better things.

2. My commute. At the reunion, we laughed because people from Odessa complain about having to drive to Midland to shop, go to the doctor, or even to work. For those of us that live in a major metropolitan area, a 20 mile commute is a daily occurrence and actually means you live close to your doctor, job or shopping center. While I'm jealous of people who don't commute I've also learned to embrace mine. I listen and explore awesome music, listen to smart people (like Joel Osteen) and get to catch up on phone calls to friends and family (usually my Momma or Gina). It also gives me a few minutes to breath before the chaos of my day begins, and exhale when it's over. I relish this down time, it's really me time and I'm so thankful for it.

3. My iPhone. I'm not being materialistic, I'm simply being thankful that one device keeps me so connected. FaceTime is the best app, when Trouper is in the hospital and I'm at work, we can chat for a few minutes or I can see and hear the doctor and ask questions in real time. When I need to check on a test results or get doctor appointment info, it's right there, no need to call and wait for someone at the doctor's office to call me back. When I need to check in with the kids, group text them. When I want to catch up on people's lives, even when they live 1200 miles away, I just click on FaceBook and I'm right there and I never worry about leaving my camera at home!

4. My work family. The most dysfunctional bunch of people I've ever met but the Lord knew what he was doing when he connected me to my job. If I need to rant about how high my medical bills are, they listen. If I need someone to run out and grab me lunch, all they need is my debit card and if I need to catch up on last night's episode of Scandal, Empire or any Housewife show, they've got me covered. Even the ones I clash with make my life complete, they give me a reason to do better, to try harder and to be a better person. Plus they are funny and make me laugh when I want to cry, and, let me cry when I need to.

5. Music. It speaks what can't be spoken, heals hearts, takes you back to a moment in time and is always there no matter the time of day. I am so thankful that I was raised to love and appreciate music. To respect it, cherish it and really connect with it. In school, my Mom always supported my decision to be in choir, my Grandma always urged me to sing at church and my Dad insisted I was raised knowing CCR, Neil Young, Gino Vannelli and the Beatles. Music has been my solace, late at night, when I needed to cry, to rejoice or just be still for a few minutes. When Ryan was a baby and couldn't sleep, we would play "Under the Bridge" by Red Hot Chili Peppers and he instantly calmed down, like he was listening to the lyrics. When Emily was a toddler, she listen to "Return to Pooh Corners" by  Kenny Loggins so much she wore a CD out. When Trouper was in a coma, and I would sit by his bed for hours, I sang our songs. Music is like home, it just feels right.

Home

Trouper and I just returned from a ten-day trip to Texas. We had a wonderful time filled with lots of laughter and love. In a way, I think I had forgotten how good it feels to laugh, and that people think I’m just as funny as Trouper, although my sense of humor is a bit more (okay a lot more) sarcastic than his. It’s comforting to be around people who knew you when you were 8 and know secrets about you that you dare not tell your adult friends. There was a moment when a few of us had converged on Sheila’s hotel room; I was laying on the bed catching up on texts and emails, Kevan was typing something for me and Sheila was working on the remembrance tree that actually brought tears to my eyes. When you live so far away from your friends and family, the ordinary, small moments are huge. To have the opportunity to spend a few days with my lifelong pals was just what the doctor ordered and I will never forget a moment of the trip.

The Wednesday we left we had a late flight. I had been working for weeks on various projects and was exhausted. In a week’s time, we had Trouper’s surprise party, visit from out of town guests, a 2-day VP meeting at my office that I was solely responsible for and final class reunion planning. Not to mention packing and planning to be out of town for ten days. When we boarded the plane, all I wanted to do was sleep but my brain wouldn’t turn off and my excitement was at an all-time high. I looked over at Trouper who, as most of you know, can sleep anywhere anytime, and watched him sleep and I cried. Probably from exhaustion but for a minute, fear and reality snuck into my head and I kept thinking this might be the last time we go home together. Yes, I always try and remain positive and keep telling myself and everyone around us that someday (and hopefully soon) we will get a heart and be headed back to spend our remaining years in Texas. However, in that moment, I let my guard down and cried. He must have sensed that I was crying because he opened his eyes and asked me what was wrong and why was I crying. I just said I was tired and happy to finally have some time off but he knew better. He asked again when we got to my Mom’s and turned in for the night, and I just ignored him and said good night. I was afraid to tell him what I was really feeling, that I had let my optimism shield down and that for a few minutes I was overtaken by reality. But I can’t live in that dark place so I did what I do best and pushed the bad back down and moved forward.

The ten days flew by and even with our middle of the night hospital visit to the Eastland ER, were pretty uneventful. I will say, about our ER visit, that if you have to spell LVAD to the nurse, you probably need to go elsewhere for your healthcare. Trouper got to visit with lots of his old gang and I was sorry I missed out but I had reunion stuff going on and kept busy. I went to an OHS pep rally and I have to say that the drum circle is still my favorite part. The gym seems a lot smaller and they really need to invest in some lawn care but the visit to the school was one of the highlights of the trip. Of course we made several visits to Taco Villa, one to Rosa’s, one to Mercado’s and a few to Whataburger. I gained three pounds (was down 30 pounds when I left) but it was worth it.  We got to visit our friends and spent time with our families, including my almost 91-year old Grandma Dorothy. She suffers from dementia and constantly asked me who I was and where I live and, on a few occasions, asked me how I knew Trouper. We took her to the cemetery when we visited my brother and Jackson and she got mad because I spent too much time at my brother’s grave. Such sadness when your body outlives your mind but I was happy to spend time with her even when she didn’t know who I was or why I was wanting to hold her hand.

Our trip can be summed up in one word; roots. We explored, visited and made peace with our roots. We laughed, we cried and we embraced a special place in time. We remembered where we’ve been so we can move forward into where we are going and, for a small moment, we were carefree and young again.

One last thought about Odessa. Yes, it’s an oilfield town and sometimes there’s a boom but more often there’s a bust. Yes, it’s brown and there’s no water or trees. But it has heart. People smile, shake your hand and hug your neck. Chances are when you’re in WalMart, you will see someone who knows your Mom, your Grandma or was your 2^nd grade teacher. Your elementary school still stands and the line at Southern Maid Donuts still wraps around the corner, long after breakfast has ended. Your heart still skips a beat when you see the Friday night lights from Ratliff and after the game; Taco Villa is still open so you can buy a combo burrito (no sauce, extra cheese). It’s your history, your roots, all rolled into one town. I am an Odessan, and will always been an Odessan, no matter where my life takes me.  

Every Day

Trouper emailed me a copy of his "health summary" today, just in case I ever need it. It lists medications, surgeries, procedures, hospital stays, doctors and pages and pages of information. Nothing too out of the ordinary, except for one small sentence "heart replaced by heart assist device". I bet not too many people have that listed in their medical records but for the past two years, my courageous husband is one of a handful of people living without a heart. He received his LVAD on August 29th so over the weekend, we quietly observed his 2nd LVAD-avversary. I will never forget his doctor coming in the morning before and telling us that Trouper would receive his LVAD the next day. We didn't really have time to process or think about much, just enough time to update our families and friends, for me to make arrangements at my office, and get settled in for a long recovery.

What stands out the most, to me, was our doctor stating that the LVAD would be good for 2-5 years, and, as I mentioned above, we just celebrated 2 years. Are we anxious and scared, you bet! Do we pray for a new heart, multiple times a day. Those things aside, we also celebrate the life that Trouper has been given. The LVAD has allowed him to be a husband, father, son, brother and friend. He's watched his children become adults. It's allowed him to lead a fairly normal life, as normal as you can live with a machine working for your heart. It's caused him pain though, pain I can't even describe and truth be told, don't know a lot about because he tries to shield the kids and I from the pain he suffers. I see it in his face, especially his eyes. When his batteries get low, and start to beep, I can hear his frustrations. When he has another hospital stay, I can feel his anxiety. When he sleeps, though, I can hear the soft hum of the machine that is keeping him next to me and for that, I'm eternally grateful.

Today, I want to thank each and everyone of you. You know I'm a song person, so today's song is EVERY DAY by Rascal Flatts. Every day, I'm beyond thankful for my friends and family, for recognizing when I need a little motivation, for listening to my complaints and gently reminding me I have so much to be grateful for. For visiting, calling, texting and emailing but most of all, every day I'm grateful that you pray for us. Join me in celebrating our happiest of happy LVAD-avversary and knowing that a new heart is on the horizon!

From the man himself....

Everybody asks me to update Dara's blog, but it is hers and her outlet and she does an awesome job. However, I am going to break the rules this one time. I couldn't sleep last night...as usual and I decided to watch a movie that I have been wanting to see. It is based on Stephen Hawking's life and is titled "The Theory of Everything". If you know me, you know I'm a big old nerd and Stephen Hawking is the King of the Nerds. The movie is about time and the trials he and his wife faced with his battle with ALS. The comparisons I saw in my own life were uncanny...not that I'm near as intelligent as Stephen or that my own personal health issues are comparable to his fight and struggle with ALS. He and his wife never gave up and tackled every challenge, all while raising three kids. The sacrifices his wife made are eerily similar to the choices Dara makes for us every day. She gets up and goes to work at the crack of dawn, takes care of all the financial and medical decisions and issues, is raising two kids and getting one of them through college. She still stops at the store on the way home, comes home to make sure dinner is going, if not does it herself, and then goes to the gym. We truly are blessed to have her in our lives and I wanted to take this opportunity to say it...I love her. I always have, ever since I first laid eyes on her at church when we were just kids. The movies underlying theme was time...the subject that Stephen Hawking's life work and books were based upon. There never seems to be enough of it in the day, and when you're waiting on a heart transplant you learn to look at everything differently...especially time. We have faith and know that we will get a heart...in God's time. We just have to be patient. At the end of the movie, Stephen Hawking was invitied by the Queen to receive an award and he brought his wife and kids. His wife thanked him for making it a special day...he smiled and looked at his kids which were running around and playing and said "look at what we created". In the end, you only have so much time, use it wisely because we can't go back and we can't get more. In the end, you only have love....the love you give and the love you receive. I am a very lucky man as you can see, I may not have all the time in the world but I love with all my heart and my cup runneth over with the I love I have received.

~Trouper

Stockholm Syndrome and The Duggar Family

First, I will preface this with the announcement that today's blog has almost nothing to do with Trouper and second, it's not intended to hurt or offend anyone and please try and remember this is my story, my reality and finally, my healing. Writing this blog has been in my thoughts for many, many months and finally, someone mentioned that writing is cathartic for them and allows them to put into words what they are so often unable to verbalize. With that said, here's a small part of my journey.

Yesterday, a friend asked me what I thought about the Duggar Family and the current "scandal" involving the oldest son Josh Duggar molesting young girls. We discussed it and she told me she was shocked that his sisters, even after confirming that they were indeed two of his victims, would continue to stand by and support their molester. I wasn't shocked, in fact, I understand their feelings and I sympathize with these young girls because I too was a victim of sexual and physical abuse at the hands of a relative. In my case, that relative was my stepdad, Frank.

Frank's abuse was far reaching and effected every member of our household. He not only sexually abused me; he also physically abused all of us and was unusually cruel and vindictive. Parts of my childhood are a blur and I've come to realize that forgetting them is my brain, and my spirit's way of healing. No, I never told anyone although I've since learned that many people had suspicions. I lied several times when asked because I was too afraid to leave my little sister, brother and Mom alone with him. I thought if I bore the brunt of his abuse they would be safe and that in my own little way, I was protecting those that I love the most. I was wrong, but that's not my story to tell. Guess protecting the ones I love has always been a pattern for me, and an instinct I learned very early on. The sexual abuse stopped when I was a young teenager however the emotional and physical abuse continued until I couldn't take it any longer and moved out when I was a senior in high school. Yes, I went back and lived there again for about a year, during my freshman year of college, but he literally didn't say two words to me during that year and in my adolescent mind, I thought he had changed as much as I had.

What does my revelation have to do with the Duggar girls? I truly believe that they suffer, just as I did, from a form of Stockholm Syndrome. Stockholm Syndrome is the phenomenon in which hostages express empathy and even sympathy with their captors sometimes to the point of defending them. No ands, ifs or buts about it, that was me. I wanted him to approve of me, probably because his approval meant he was happy and I wouldn't be punished. However you look at it, that's what they have been trained to do, defend their abuser. It's not for us to judge, or even understand, our job is to take their experiences, combine them with our own, and make sure this doesn't happen to the ones we love. Learn from their situation, sympathize with them and above everything else, pray for their entire family. This isn't the end of their journey, and they can help so many with their story, and in some way, I hope I can too.

This small, curved and dark path of my journey ended on August 20, 2013 when Frank passed away after many years of poor lifestyle choices. In all reality, Frank's hold on my life ended on September 11, 2010; the day my baby brother left this earth. I spoke to Frank many times during that week, even sat and talked to him and his wife after the funeral and I remember wishing I could scream at him that he no longer matter to me and that his evil reign had come to an end. However, everyone was hurting and that wouldn't be honoring the spectacular life of my brother so I kept my mouth shut (please take a moment to pick your mouth up off the floor). Many people in my life know my story, I've shared it with close friends and of course my family. I've learned I have no reason to be ashamed of the abuse, and that it was in no way my fault. Did it have an effect on my journey, of course it did. Does it continue to effect me today, absolutely but it doesn't define me. It simply makes me stronger, wiser and even more tolerant. I try to remember that forgiveness doesn't excuse someone's behavior, it just prevents it from destroying your heart.

Complications

There's a song by a very handsome man (not as handsome as my man of course) Tim McGraw titled Live Like You Were Dying. In the song, a sick man in his early forties (similarities abound) explains what he did with what little time he has left. He climbed a mountain, went skydiving, rode a bull and even asked someone for forgiveness. My sick, early forties husband is on borrowed time and for the past two years, every once in a while mentions something that is on his "bucket list". Just like the song, when you get the news that your time is limited, you reassess your life and what's truly important. You think about the things you always wanted to do and revisit all the "one day" items you have stored in your mind. However, in all honesty, if a heart doesn't come (and, I fear, rather soon) that "one day" will slip away. It truly breaks my heart to not be able to give him all the moments he has dreamed and talked about for so long. Money, as with anyone, plays a huge part but so does our transplant listing. Trouper can't be more than 2 hours from the hospital thus our options are truly limited.
I titled this blog Complications because being on the transplant list is wonderful blessing but it's also very restricting and complicated. Chances are, if you are sick enough to be placed on the transplant list than your time on earth is probably very limited. Trouper reiterated this to me the other day when, after a disagreement, he said "Dara, my time on earth is drawing to a close and I don't want to spend my last days angry". Heartbreaking and another reminder that our future hinges on a transplant. So, we try and make the best out of our situation. Over Memorial Day, our family and a few friends will go to the lake for some fun in the sun. I would like to say we've planned a cruise, or a trip to Ireland (okay that's my wish, Troup's is Italy) or at the very least planning a huge family reunion on a beach. Nonetheless, we will be together for four carefree days near the water.
Being married to Trouper for almost 23 years and knowing him for 30 years, I can say that his ultimate wish is to be near his family and friends. Please take the time to visit, call, email, or text. Yes, I realize Atlanta probably isn't number one on your vacation destination wish list but when time runs out, you can't buy more. Another complication. I know life gets in the way and you forget to check in with him but, when he runs through your mind, let him know.

As always, thank you to all our friends and family who've traveled this journey with us, we wouldn't be here today if it wasn't for your prayers. And one last thing, how would you spend your time, if given the chance to live like you were dying?

Want to live forever?

I will admit, before my best friend, husband and father of the two most wonderful kids in the world needed a heart, I didn't think much about organ donation. Now, it seems I'm consumed with thinking about organ donation, researching organ donation, checking the statics for our region or talking to someone about our need for a transplant. I know friends and family who've been asked to donate and have said no, even since our journey began and while I don't agree, I'm not upset because that's their journey and decision, not mine. But I do hope and pray our loved ones are informed, and decide to preform the ultimate act of kindness and donate.
Some facts: About twenty people die everyday waiting on a transplant while one person who donates can save up to eight lives. Most major religions support organ donation and consider it to be a final act of love and generosity. There is no cost to the donor family and an open casket is still an option after donation.
Last, if you decide to be a donor just don't mark the X on your driver's license. Talk to your loved ones about your decision and make them aware that you are passionate about donating. In the end, they will be the ones making the final decision and they need to know and understand your wishes. It's a hard conversation, but something very worthy of a few minutes of your time! Remember, what you do for yourself dies with you but what you do for others lives forever!

Organ Donation Discrimination

Let's face it, most of us have experienced some type of discrimination in our lifetime. Racial, sexual orientation, gender based, and yes, even body type (I've been treated differently because I am overweight) discrimination is just normal life. Is it fair, no, should we bust our butts to change it, yes.
Throughout our transplant journey, I hadn't given a second thought about the sexual orientation of Trouper's eventual donor. I have thought about their family, friends, religion and even if they will be a happy go lucky person, just like my Trouper. Sometimes, late at night when I can't sleep, I wonder if the way they died will somehow "scar" their heart. Will that have an effect on my husband? Will their family want to know who we are, or ever want to share stories with us? But again, I have never thought about their sexual orientation, who they chose to sleep with, who they chose to share a life with, only if they have a loving, kind heart.

Back in August, when I flew home to meet my new nephew Jackson, I noticed a sign in the airport that said something like "the average wait for a heart transplant at Baylor Hospital is 9 days" which STUNNED me as we had already been waiting for several months. I wondered how, or why, they would be able to perform more transplants than our Atlanta hospital. Atlanta and Dallas are both major cities, the hospitals are both major hospitals but I went about my visit and forgot about the sign. Fast forward to two weeks ago, when Trouper's coordinator asked him to come see the doctor on a random Thursday. What he was told was shocking, and honestly, very disturbing. He was told that in the past, several groups have been unable to donate blood, tissue or organs. This group includes gay men, anyone incarcerated for more than two days in the past year and anyone convicted of a felony drug offense, no matter when the conviction occured. Our hospital, Piedmont, had followed those rules until January when they started following new guidelines, allowing candidates to sign a release, thus opening the pool of donors by thousands. Emory, just a few miles down the road, did the same a few years ago and tripled their transplants. Piedmont, by easing the restrictions, has done more transplants in two months of 2015 than they did in all of 2014! Talk about amazing statics! So Trouper signed the release without giving it a second thought. The doctor explained that previously, testing of organs/blood took longer in potential donors from these groups so the CDC had restricted their donations. However, in the past few years, technology has gotten so good, they are able to test and have results in a matter of a few hours. Again, he signed without giving it a second thought.

My blog today isn't so much about the pool opening for us, and our chances of a heart increasing, although that is a wonderful thing, it's about the discrimination that families face when their loved one dies and wants to generously donate. They are already grieving their loss, and going through a horrific experience, but to add the nastiness of discrimination breaks my heart. If you, or your loved ones fall in the group that I mentioned, please go ahead with your donation and know that finally your donation will be accepted, and will save a life. Please visit http://www.gavelife.org/from-gay-men to learn about current efforts to abolish this discrimination. Also, visit http://donatelife.net/organ-donation to learn about signing up to be a donor, and remember to share your wishes with your loved ones. In the end, live life then give life. You can't and shouldn't take your organs with you, let your legacy live on after your gone!

A Genuine God Moment

This month, our family quietly observed the two year anniversary of Trouper’s heart attack. We also observed the National Day of Love (Valentine’s Day) and President’s Day. It’s been a fairly uneventful few months, just anxiously awaiting a new heart. We did experience a genuine “God Moment”, one that I think has set Trouper on a new path, hopefully something he can continue after he recovers from his heart transplant.

Before I start, I’d like to say that yes, over the past few years we've experienced several “God Moments” and I know, without any hesitation, that my husband is here today because of a miracle that only God could perform.

On to our moment:

We never go to Ace Hardware. If we need anything that Ace would sell, we go to Home Depot or Lowe’s. They are both closer to our house and typically have better prices. The first Saturday of February, Trouper and I were out and about doing typical Saturday errands; grocery store, pharmacy, gas station and farmer’s market. The kids needed a new shower head for their bathroom and we planned on stopping at Home Depot but by the time we were done with everything else, we were both too tired. We happen to drive by Ace, and Trouper said he would run in and check out the shower head selection. He wasn't feeling well and frankly didn't look too good but he went into the store anyway. I stayed behind to call the house to make sure that Ryan had done the dishes and cleaned up the kitchen from breakfast (I hate unloading groceries in a dirty kitchen). Trouper had been gone about 10 minutes when an Ace employee came outside, pointing at our car, asking if I was Mrs. Gamble. I immediately started shaking, afraid something had happened inside the store to Troup. I opened the car to get out, and screamed is he okay. He apologized, introduced himself as Joe, and said that his son is 25 years old, currently inpatient at Piedmont and an LVAD candidate. He said the family had been so upset, not really understanding much about the LVAD and had been doing their best to research. He had just gotten off the phone with his son, when Trouper walked into the store. Yes folks, a true God moment. Trouper joined us and we talked for about 30 minutes, giving him the LVAD 101 lesson. We exchanged information, and Trouper said he would go and visit Sean (the son) next time he was at the hospital. So the following week, after his cardiac rehab class, he went and found Sean and talked to him for hours. Sean’s aunt was there as well and took notes, asked questions and told Trouper over and over how much she appreciated the visit. Sean shared some of his past with Trouper, Trouper shared some of his past with Sean and a new LVAD friendship was formed. Since that time, Trouper has visited Sean and his family many times and stays in contact with them via text and email. I think Super Trouper finally realized that his experiences; the good, the bad and the downright ugly, could actually help potential LVAD patients. We even went and visited Sean and his Dad on Valentine’s Day, post LVAD surgery. Sean now joins Trouper, and several other hundred patients from Piedmont, as an LVAD recipient. Trouper’s LVAD coordinator happen to come into the room one day when Trouper was visiting Sean. She was a little surprised he was there, typically Piedmont asks the “transplant brigade” to visit all new LVAD recipients and trust me, no one in the group is under 60 so it makes it a little difficult for younger people to identify with them. Plus they have all had transplants, not necessarily LVAD’s so their experience is different than someone living with, or about to receive, an LVAD. I think Trouper’s coordinator realized what an asset Trouper is and for the past month, she’s asked him to visit other patients, and help her conduct an LVAD class. Let’s face it Trouper is a people person. I know a lot of people say they are outgoing but he is truly the friendliest person I have ever met. Thus, I believe, is the making of his new career. I’m not sure how, when or what, but I think he is perfect to assist healthcare providers with LVAD (and hopefully sometime soon transplant) patients. Maybe he can work for UNOS, maybe the LVAD manufacturer but this is certainly a good start! And by the way, we bought a shower head at Ace and the kids (mainly Ryan since Em is at school) is back to taking a shower with non-leaking shower head!  

My "True Meaning of Christmas"

It's the eve of Christmas Eve and as I look out of my office onto the bustling interstate, I imagine all those cars sitting in that disastrous traffic are either a) headed to Grandma's house for the holiday or b) headed to the mall to finish their shopping. We will do neither this holiday season. Am I sad, a little. I have always gone above and beyond during the holidays, choosing thoughtful gifts for friends and family and always going all out for Trouper and the kids. This year, I did neither. Yes, I bought the kids a gift (one a piece) but Trouper and I won't be exchanging gifts; our gift is ongoing and is the gift of time.

Financially, we struggle but that's pretty typical of families with chronically ill/terminal patients. Tons of medicine, weekly doctor visits, supplies, special equipment and even special food literally drain our bank account. This is on top of the standard bills; mortgage, cars, insurance, utilities and done on only one salary. I am in a consistent state of robbing Peter to pay Paul and have become a master juggler; keeping my job, Trouper, house, kids, animals, family, doctors, hospitals, schedules, bills and every other need my family has in the air all at once. I do all of it because I love the three of them; Trouper, Ryan and Emily, more than the breath I breathe and I would do anything for them. So this Christmas, I won't feel sorry for us and what we don't have but rather rejoice in what we do have; each other. This has been a very difficult and yes, I realize I say that every year but this one has hit us hard. Trouper's quest for a heart transplant is a roller coaster, Emily was diagnosed with Crohn's Disease, and I was hospitalized twice with my pancreas disorder. Poor Ryan is the only semi healthy one of the bunch! But would I trade one day, no because through it all, we were together, a family of misfits that fit perfectly together.

This is my Christmas letter to all my friends and family, our year sucked but there were good moments. Emily continues to amaze us with her wonderful grades (ended 1st semester of her sophomore year with a 3.3) and positive attitude even though she has to take shots once a month and continues to deal with chronic pain. She was elected into a leadership position with her sorority and hopes to intern with a charity over the summer. Ryan is an amazing young man, continues to live at home and be in the "trenches" with me. He's working for a national car dealership and he's assumed a lot of responsibility for a young man but continues to impress me with his caring nature. In the new year, he's headed into an acting program and he gets more handsome by the day! Who knows, I might be the Mom of an Academy Award winner someday! Trouper's health was a roller coaster in 2014, just a few weeks ago they told us there wasn't much hope and we wouldn't be getting a new heart. New medicines, some LVAD "tweaking" and LOTS and LOTS of prayer have turned that around and we look forward to announcing a new heart in 2015! As for me, well, I still get up every morning and go to work, I still listen to talk radio and devour all news, especially entertainment news. I still love trashy reality TV but this year I've also learned to love scripted TV like Sons of Anarchy and Orange is the New Black. Oh ya, and I still have three people to hug, who, every once and a while, are all under the same roof at the same time. The true meaning of Christmas this year, my family!