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?