Baby Silas

In early fall, our family, like many other families around the world, learned of Baby Silas. A sweet, cherub faced infant from Atlanta, desperate for a heart. In October, at six months of age, he received a Berlin Heart, the child version of an LVAD, the lifesaving device Trouper has had since August. They deemed him Super Silas, just like our own Super Trouper, because he is "a superhero, a fighter who is stronger than average". As a mother, I ached for his parents, watching their helpless baby fight for his life. As the wife of a patient awaiting the precious gift of a heart, I sympathize with their agonizing wait and know how the minutes turn into days and the days turn into months. Months of medicine, of doctor and hospital visits. Months of hopefulness and also months of depression. Months of praying for such a precious gift, but also months of praying for a family who will be losing their precious loved one so our Super Trouper can survive. Days before 2013 faded into 2014, Baby Silas received a holiday miracle, he got his new heart! Less than 24 hours after surgery, Baby Silas was smiling and his color had improved. A few weeks after receiving his miracle, he was headed home, after five months as a patient at Children's Healthcare of Atlanta. As we watched the follow up, we cried. We cried for his strength, his resilience, his future but mostly for the hope it provided. Hope that our own journey will lead us to the gift of life.

Baby Silas' mother said she knows God has a plan for him and is excited to see it unfold. I'm excited too, excited to watch Baby Silas thrive and flourish and excited for the future. Our future, just like Baby Silas', relies on the generous gift of life. The future is created by what you do today, so please consider becoming an organ donor. Live life, then give life. Without organ donation, there is no story, no hope and no transplant. But when there is donation, life springs from death, sorrow turns into hope and a terrible loss becomes a tremendous gift. If you are already a donor, please make sure your loved ones know your wishes, and how much donation means to you.

http://www.myfoxatlanta.com/story/24167712/silas-huffman-gets-new-hearts-as-people-prayforsilas#axzz2rG4I9IiK

www.donatelife.net

Reflections

Before I make my New Year's resolutions, resolutions I probably won't keep, I feel I should reflect on the year that was, the year of 2013. I remember my triumphs and my missteps, the promises made and the ones broken.

In January, our baby girl was accepted into two colleges and we were helping her decide her future. A mere month later, our beloved Trouper was fighting for his life, and our family was forever changed. In March, while Trouper was still in the hospital, Emily received not one but two college scholarships. In April, we took a group of teenagers to the beach, their last spring break as high schoolers while our precious son changed his life plans to be a "stay at home" son and care for his dad. May brought both highs and lows, the week we were set to celebrate our baby girls graduation, we were told Trouper wasn't getting better and would need a new heart to survive. In June we floated through, not sure what to expect and in July, we settled into a two month stay in the hospital, waiting for the gift of a new heart. August brought tears of joy and sadness. The same week our baby left for college we were told that time wasn't our friend and Trouper couldn't wait for a heart, and would need life saving LVAD surgery.

Fall faded into winter and here we are again, on New Year's Day, with another chance. A chance to forgive, a chance to do better, do more, to give more and a chance to love more. A chance to stop worrying about the what if and start embracing the what can be. So on this first day of 2014, as I reflect on the most difficult year of my life, I am reminded that greatness is on the horizon and no matter what life throws at me, I will get through it with love, patience, kindness and grace and always have another chance to get it right!

Holidays, LVADS and travel...OH MY!

2013 has certainly been an adventurous year! If someone had told me on January 1st that our family would be facing such difficult challenges this year I would have said no and probably called you crazy! Truth is, our journey in 2013 has been one of sadness and difficulty, but also one of joy and pride. I am so proud of my family and friends for the love, support and guidance they have given us. From the calls, texts and emails, to the monetary and financial help, everyone has lifted us up and kept us moving. I'm so proud of our children and the way they stepped up to provide support and love to their Dad and I. Yes, they are adults but at 18 and 21, they are still trying to find their place in this world and they certainly never expected to be faced with such adult issues so early in life. But they are our children, and come from a family of love, laughter and spirit and have shown us that they can withstand anything this life has to throw at them. My precious Trouper, with his infectious laughter and endearing smile, has gone through endless pain but always put our family before his own wants or needs. When the doctor came into his hospital room in August, and said it was time to give up on a heart for a little while and get an LVAD, he looked at me and said he would hold on a little longer if I wanted him too. He is the most amazing man I have ever known and just like I tell him, I will continue to fight for him, even when he is too tired to fight. 2013, a year we will certainly never forget.

We leave for Texas on Saturday, going to spend time with family and friends in Arlington and Ranger. My Grandma Dorothy is 89 and I want to spend one more Christmas Eve with her, hearing stories about Christmas' of yesteryear and holding her hand while she watches everyone open gifts. She is an amazing women, and I owe her more than I can ever repay. She loves unconditionally, praises the Lord even during the most difficult times and inspires me to be the best woman I can be. Trouper wants to spend time with his family, including all the nieces and nephews. He has been through so much, and knows the value of time. Time is so precious and limited, this year has shown us that we don't need to waste it or wait for the perfect time to visit family.

This year our family is a little larger and Emily's boyfriend, Jake, will accompany us on our trip. I hope he's prepared for the craziness when we are all together. Coming from a family of 14 kids, I'm sure he can handle it but then again, we are a very special group. Traveling with an LVAD is challenging, we have to remember all the batteries and equipment, medicine and supplies. I've left lists for the kids and Trouper, so they can prepare while I'm at work but I am sure I will be trying to get it all pulled together at the last minute. Who knows if we will actually make it to Texas with everything we need, I'm just glad they have Kroger there because I know we can get any medicine we need or might have missed.

As for my last thoughts of 2013, I would like to leave you with a blessing:

May your home be filled with laughter, may your pockets be filled with gold. Any may you always have all the happiness your heart can hold.

Happy holidays friends and family and always remember you are a blessing to me!

Blessed....

"We were given two hands to hold, two legs to walk, two eyes to see, two ears to listen but why only one heart? Because the other one was given to someone else, for us to find."

Next weekend, Trouper and I will join family and friends to celebrate the 50th Wedding Anniversary of my Aunt Glenda and my Uncle Don. Besides being wonderful, God loving people, they are a true inspiration to so many. From their devotion to service by their many years spent as missionaries in Africa and Mexico, to their strength and unconditional love for their friends and family. Thinking about them reminds me of all the strong people I've been blessed with, and how God knows who to put into your life and when to put them there.

My Mom is the most strong willed, opinionated person you will ever meet. It's usually her way or the highway, and I'm pretty sure she has never been wrong in her life. For years, I would argue with her but it's wasted breath, might as well just say yes, okay, and move on. However she loves fiercely and never gives up, two qualities I'm so happy she passed on to her children. Two difficult marriages, being knocked down, sick, unsure of her future and she pulls herself up, and keeps it moving. She went back to school in her 50's and earned her degree, she fell in love (again) with an old high school boyfriend and married him and when faced with the death of her beloved son, turned her sadness into helping others in her community. When Trouper first got sick, I knew I was strong enough to handle the situation because I am my Mother's daughter and I knew that things had to be done, and if I had trouble doing them, she would make sure they got done. She loves me, my faults and all and she is the world's best Grandma to my kids. When I don't think I can, my inner Carla says yes you can! We are blessed with Grandma Carla!

My Dad and Step-Mom, Benita, don't often get the credit they deserve and for that I am sorry. To say that the road to adulthood and an adult relationship has been rocky is an understatement but to their credit, they never gave up. Divorce is difficult and often, the kids are caught in the cross fires and that's exactly what happened to my sister and I. When we were younger, we were busy being kids so they didn't have the chance to see us often, and they didn't want to "intrude" on our lives. I didn't understand this until I was older, I just thought they were happy living their lives and two young kids didn't fit into that plan. Now, I understand and I appreciate the relationship we have. They are the most non judgmental people I know and I can call either one of them with any problem and instead of bad mouthing or complaining with me, they just try and get me to see the situation different, and throw some much needed wisdom my way.

My In-laws, Don and Teresa embody the quote "the greatest gift you can give others is unconditional love and acceptance". I've often said (about them) that they would love their children even if they were serial killers on death row. I can't say I've always agreed with them, but I do respect them. Not many people would give up their lives for months on end to spend each day at the hospital, caring for their adult son but they did just that, for two months. I've tried to give them the time they need to be with him, I know the sadness my Mom suffered when Bumper left us, and I know as a Mom the helplessness you feel when your children are ill. I am grateful for their love and support, when Trouper was in the hospital for so long their presence allowed me to come to work, deal with kids and home, and know that someone that loved Trouper was with him when I couldn't.

Kim, Jay and Amanda. I can't say enough about the three of them, or how much they've helped us over the past 9 months. From those first moments at the hospital, to accompanying Trouper to his weekly doctor appointments, they have been our security blanket. When we needed an organizer to get Emily to college, Uncle Jay was there. When we need snacks and Dr. Pepper Ten, Amanda and her cooler are there and when I need to complain and have someone tell Trouper he's being an ass, even if he doesn't feel good, Aunt Kim is there. God knew what he was doing when he had us live 10 minutes for them!

Kyna. My sister, my friend, my confidant, my security, my heart. She loves life, always has a smile and a words of wisdom and never gives up (she got that from Mom too!). I can't describe the depth of love I have for her, or how I count the days till I live closer to her. When Trouper got sick, I don't remember even asking her to come, her and Mom just showed up. When I see her name on my phone, I know I'm in for a good story and it usually comes just at the very moment I could use a good story. Since the day she was born, it was me and her vs. the world and she is living proof that your childhood doesn't write the story of your life. I'm beyond grateful for her, and wish everyone had a Kyna in their life.

So many others, I promise I will remember each of you in my Thankful status updates during November, just always know I appreciate your love and support beyond words.

Life through the windshield....

Someone once told me to always look at life through the windshield, not the rear view mirror. The past month, our family has done both, looking forward to Trouper's daily progression and milestones but also looking behind us, remembering where we were before and after February 16th and how difficult the past nine months have been for us.

It's hard not to reflect on the past year, but it's exciting to see the accomplishments that not only Trouper's made, but that our family as a whole have made. We are also looking forward to Trouper's eventual transplant, and if the past few months have shown me anything, it's that my husband is a real trooper and has the perfect name! He's braver and stronger than anyone I know and when the time comes, he will smile, make a joke about his new heart and his new career as a male dancer with a nice chest scar, and be the new poster boy for heart transplants.

I wouldn't be looking through the windshield if it weren't for the love and support I've gotten from our family, friends, doctors, nurses and even strangers. When I didn't know if I could endure another minute at the hospital, I heard yes you can, just take a breath and go back. When I complained about the way people were treating me, I heard does it matter in the end if they like you. When I didn't know where I would find the money to pay the car payment, I heard no worries, I've got this. Words of encouragement, words of wisdom and words of healing. Prayers and love for us from all over the world, a constant reminder that we aren't alone, and that our family is loved beyond words. I know I've said thank you, but I hope each of you know how deeply I mean that, and how much I appreciate your love, and sometimes gentle nudges, that keep me looking through the windshield. I promise to live life fully everyday, looking ahead to tomorrow!

Live
It
Fully
Everyday

Unanswered Prayers

I am stubborn and like to call all the shots, including all medical decisions regarding my family. Okay, I will pause while you gasp; in disbelief that timid, little 'ole Dara is stubborn. Laughs aside, it's been extremely difficult for me to relinquish control to those that should have it, but on Wednesday, August 28th we gave full control to Dr. Dean and his staff, finally realizing Trouper wasn't getting any better and after seven weeks in the hospital, a heart wasn't going to find him soon enough. His health was failing at an alarming rate, he looked and felt awful and his quality of life was nothing short of sad. The LVAD will allow him to build his strength, become active and best, allow him to come home, where he belongs. Our home is simply not a home when he isn't there. It's a sad place, even the dogs mope around, depressed that their beloved Trouper isn't around to sneak them treats or let them lay on my pillow and hog the blankets in bed. At 8 am, Trouper had LVAD surgery, thus making him inactive on the transplant list for six to eight months while he heals from surgery. Our family and friends gathered, prayed and waited six long hours for word that the surgery was a success. Dr. Dean met with us, and told us Trouper had done wonderful, and was well on his way to a speedy recovery. Today, two weeks and one day after surgery, Trouper is heading home. I can't find the words to describe how exciting this is, or how grateful I am, that Dr. Dean took control and told us, not asked us, that Trouper was getting an LVAD. An unanswered prayer. We had prayed relentlessly for a heart, but Trouper's perfect heart isn't ready yet. The Lord knows that home is where he needs to be, and that our family was incomplete without him. He knows that Trouper's body isn't healthy enough for the new heart and that he needs strength to be able to fight off infections. I read somewhere that the Lord may delay his promises, but will never deny them so I'm holding firm this is only a delay, and the Lord is just making sure Trouper's new heart arrives when his body is able to receive it.

When Trouper gets home today, he will officially be 40 years old....what an awesome birthday gift! He will be able to sleep in his own bed (dogs and all), have a homemade meal (he's requested turkey meatloaf) and his favorite birthday cake (yellow cake with chocolate icing). He's been blessed with another trip around the sun, another chance to hug the kids, kiss me, go fishing with friends, make everyone around him laugh and be the Super Trouper that everyone loves. So, on Trouper's fabulous 40, my wish for him is enough. May he always have enough happiness to keep him sweet, enough trials to keep him strong, enough success to keep him eager, enough faith to keep him encouraged and enough determination to make each day a great day! Trouper, if someone asked me what a beautiful life means to me, I would lay my head on your shoulder, hold your hand and answer with a smile; this.

Gratitude

"As we express gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them" John F. Kennedy

I recently read an article that stated seven out of every ten patients that have either received an organ transplant, or are waiting for one, are on public assistance. This includes medicaid, food stamps and section 8 housing. I truly understand the plight of these individuals, and I am beyond grateful that my family and I haven't become one of those seven and our friends, families and even strangers have given generously towards Trouper's medical expenses and our families immediate financial needs.

Early in our journey, an old high school friend wrote me a check, no questions asked, making it possible for me to stay at the hospital with Trouper (my vacation time ran out very quickly). We've had friends who have sent us gift cards for groceries and medicine, friends who started and donated to an online fundraising site and friends who sent food over to the house or came over and sat with Trouper so I could go to work or to run errands. Because of our loved ones, we have been able to keep a roof over our heads, a car to drive to and from work and doctors and groceries in our cabinet. We have been able to afford limited home health and pay for medicine and doctor co-pays. We even splurged and bought Trouper some new shorts because he has lost almost 100 pounds and his old clothes fell off of him. That doesn't mean we haven't made sacrifices and gone without. My own health has suffered and affording the doctor and medicine for me is often difficult, our son had to put off school to help us, Emily had to quit her afternoon part time job to stay home with Trouper so we didn't have to pay for full time home health care and yes, we've done without on birthdays and holidays since our journey began. Emotionally I think we are all drained but we know that God has a plan for us, so we will live by the word thanks and continue fighting with our Super Trouper.