Baby Steps

Baby Steps

It has been more than two years and I am still taking baby steps. Small actions that mean so little to others are still life shattering to me. I have yet to begin the daunting task of cleaning out Lindsay’s room. The clothes, the cheer medals, the shoes, the small treasures that sit on her dresser and nightstand. The pictures that hang on every wall, and God only knows what might be under her bed. The contents of her desk, her books, her back pack, her laptop. The Tail and Mane shampoo that still sits on the shelf in her shower. It is so hard to even fathom that thought of donating, giving away, or throwing out even one piece of paper much less a single article of clothing. All that being said Lindsay was an organ donor and she gave the ultimate sacrifice to save and extend the lives of total strangers. She had a plan for her life, she had a direction, a goal and it was to help others. So, after a conversation with Kellie, Lindsay’s mom, we agreed to donate a specific item to a very good cause, “I Support the Girls.” This is a non profit organization that that takes donated bras and distributes them to homeless women and women who are less fortunate. I feel Lindsay would not mind and she would be proud of us for this donation. I feel now that a stranger has a part of what once was Lindsay’s she will watch over them and make sure they are doing okay.

I had another situation over the weekend that threw me back a step or two. One of those situations that takes your breath away, and only you know why.  My wife Kelli and I, along with another couple, were in the lobby of a restaurant waiting to be seated when around the corner came Heather, who was Lindsay’s best friend. With her was Logan, Amanda and Brianna, three more very good friends of Lindsay’s from high school. After seeing the last one come around the corner I took a glance back, because in that split second I thought maybe, just maybe. It is times like this that makes my heart drop. I don’t know why I looked for her, but I did. I know in my mind, she is never going to come around the corner of a restaurant with her friends ever again, but my heart still looks, and probably always will. It was so nice to see those young ladies, but what made it even more special was they were happy to see us. We hugged all of their necks and quickly caught up on what was going on in their busy lives. As they were leaving we told them to have fun, behave themselves and what I always told Lindsay, “Make wise choices.” Heather was walking toward the door and she turned to us to said, “Love Ya’ll.” I don’t know if she knows how much that truly means to me. Just the fact that she thought to turn and say it. I try to keep in touch with some of Lindsay’s friends. I enjoy seeing them prosper and grow. It’s as if I am looking to them for some kind of clarity, some sort of identity, a small glimpse of what Lindsay would be doing, where she would be. Heather is a special young woman and is very special to everyone in our family.

A weekend of donations to help strangers, a night of seeing what could have been and a lifetime of baby steps.

A Thin Line.

A Thin Line.

The complete and utter heartbreak from hearing “I am sorry your loved one has passed,” the complete and utter excitement from hearing “We have a kidney for you.” The sorrow and pain of hearing “We did all we could do, but we could not save your child,” the joy and heart lifting feeling of hearing “Please get to the hospital there is a heart on it’s way.” The ying and yang, the lowest of lows and the highest of highs, someones best day and someones worst. One life ends and one life begins anew. These are just a few of the polar opposites when someone passes away and someone else gets to live on. When your heart is breaking and someone else’s heart is full of hope for the future. There is no greater pain than to say goodbye to a child, a mom, a dad, a brother, sister or spouse. There is no lonely like the lonely when you walk through the door of your home, the same door your loved one walked out of for the last time. William Shakespeare said “The purpose of life is not to find your gift, but to give it away.” There is no truer statement when it comes to organ donation. We are given this life, these bodies are a gift. We are supposed to take care of them, treat them as if they where temples, but the abuse we put them through is sometimes detrimental. Once a kidney stops working, a liver quits functioning, the heart starts deteriorating, the lungs have no capacity, or numerous other organs begin to decline, we look to organ donation. The field of donation has come so far in the last ten years, the ability to transplant almost any organ has become a reality. But for this to happen someone has to die, someones son, daughter, mother or father has to lose their life for another to live. As many of you already know Lindsay was an organ donor. This was her own conscious choice at he age of sixteen. Her decision to save lives through donation fit right in with her dream of becoming a surgeon. So many times I have asked myself “Why her? Why did Lindsay have to pass for someone else to live?” The question will never be answered while I walk this earth. I will only get the answer when I leave this world and stand before God. The emotion felt when your loved one passes and you know someone else will live is virtually unexplainable. The immediate feeling of numbness passing through your body and you feel helpless, you feel as if your heart and soul has died right along with your loved one. At that point, the fact that someone else will live, someone else’s life will be extended does not matter to you, in fact it almost brings you to anger.  I had to come to realization that it was not the recipients fault that Lindsay passed away, they did not wish for her to have an accident that Sunday afternoon in August of 2016. I have only been on this side of organ donation, I only know the hurt and the pain of loss. I do not know the joy and elation of getting that phone call telling the recipient to get to the hospital as soon as they can. I personally know one of the recipients of Lindsay’s donations. She is a wife and a mother of two. I work everyday with her husband and her son. She was in almost complete kidney failure and Lindsay was able to save her life and give her many more years to spend with her family. Even knowing the recipient does not make the loss any easier, it does not make the pain any less. I had taken quite a bit of time off from work after Lindsay passed away and when the time was drawing near for me to return there was one thing I had to do. I had to see her and her husband, I did not want the first time I saw her husband to be at work. I did not know how I would react. Would I break down and cry, would I want to punch him, would I be happy for him, would I hold some sort of resentment for his gain and my loss? We did meet, and the first thing she said was “Lindsay is right here” as she  patted her lower abdomen. When I saw the smile on her face and the tears running down her checks all of my anxiety, all of my fears, where gone. We had an amazing visit and we talked about her surgery and of course we talked about Lindsay. You could see in her eyes the pain she felt for us but in her voice you could hear the appreciation for the sacrifice made. I often wonder if the other recipients that received Lindsay’s donations ever think about our family, if they ever think about the fact that a seventeen year old young lady had to die for them to carry on. Do they ever think about who she was, what she had accomplished, or where she was headed in this life. 

I asked Jeanne Connolly, who works for Carolina Donor Services, and has become a good friend to our family, to send me a statement concerning both sides of this life altering time. This is what she sent to me, “From what I have been a part of with the recipient families that resonates over and over again is that while sometimes writing or receiving a letter to the donor/recipient families can be difficult because they know that their loved one had died which allowed them to live, which is a struggle sometimes. When a donor recipient family meeting happens it brings a sense of knowing that the decision to donate has given both sides a bond that brings a sense of peace and understanding. One donors mother who met her son’s heart recipient said there  was finally a sense of calm and knowing that her son still lived on. As she listened to his heartbeat in the recipients chest it was what she had needed to get that peace. Every year on Mothers day the recipient sends flowers to his donor mom and they have established an ongoing relationship. In his words: The best tribute I can give to my Donor and his family is to live.

It is a fine line we walk as the survivors of a donor, a fine line between hurt and happiness, between loss and living, between grief and gratitude. This fine line often seems to grow even thinner on days that we truly miss our loved ones. On days we know that someone, somewhere is walking, talking and breathing. but they are not.  It is a fine line we will walk for the remainder of our lives, but knowing that the best tribute a recipient can give to their donor and family is to live does make the line a little broader.

 

 

The pain is still the same…

The pain is still the same…

As I sit in the lanai of my home looking out over the water and watching the sunrise I am thinking of the past two days and the people that have crossed my path. It is amazing how some days you can randomly meet people that touch your life and remind you that there is a purpose to the life you are living. On Friday, I had the honor of meeting a woman, that just two weeks earlier, lost her son. We meet through a vendor at our monthly market. The vendor approached myself and Kelli and told us about this women’s loss. Once she pointed her out I was hesitant to approach her because I know what she was feeling, I know the feeling of parental grief and all the pain that comes with it. I know what it is like to be in the middle of a hundreds of people and feel so alone. I know that sometimes you just want to be left alone and you don’t want to talk about your loss. After Kelli went up to her and she began talking, I also walked up to her and just stood there and listened for a moment. I heard that she was out with two of her friends and it was the first time she had left her home. I heard the pain and sorrow in her voice, a sound I so vividly remember. I was introduced to this lady and she began to tell me about her son, thirty three years old, and I told her about Lindsay. They were both donors and through their selflessness, they both saved lives. She had tears in her eyes as her sons death was still very fresh in her heart. I gave her a big hug and told her, “I have been right where you are today Sweetie. No matter the age the pain is still the same. We have just meet but now we are connected for life.” I continued to tell her even though we had just met,  if she ever needed me or just wanted to talk all she had to do was reach out. She asked if I knew of a group that she could attend, a support group of some type that would help her get through this very early days of grief. I highly recommended the group Compassionate Friends. I told her how much this group had help Lindsay’s mom. The support, the fellowship and the comradery they give truly helped, and still helps, Kellie through each day. She asked her friends to please remember and help her follow up on going to a meeting. As we parted ways I gave her one more hug and whispered in her ear, “Ma’am, time will ease the pain, but the hurt will always remain. Remember the good, concentrate on the happy, and always, always say his name.” Now with tears in both of our eyes we said goodbye, for now.

On Saturday, as I was standing in our space at the market when a short, small framed smiling red head came walking up, it was Ms. Jeanne Connolly. Jeanne has been our “go to” person with Carolina Donor Services and has always been a huge supporter of the Lindsay M. Benton Foundation. She always brings a breath of fresh air anywhere she goes. Jeanne has asked me to speak at a various venues telling Lindsay’s story and the donor family side of organ donation. Little did she know what an effect it would have on my grief recovery. Only a few moments later Mrs. Jill Helm came walking through our doors and she did not come alone. You see Jill is the recipient of one of Lindsay’s kidneys, and carries a very special part of our heart with her everyday. What a wonderful day seeing Jeanne and Jill at the same time.

I so often think of my grandparents, Frank and Maylor Gore along with my other grandma, Ethel Benton. My grandparents had a total of ten children, six sons and four daughters. Before my grandparents left this world at the ages of 89, 86 and 100 they lost a total of 4 children and two grandchildren. My grandparents Frank and Maylor lost three sons and two grandchildren, my grandma Ethel Benton lost a son and also her husband. The youngest son lost was 16 and the oldest was 58. The youngest grand child was 10 and the oldest was 39. I try sometimes to put my self in my grandfathers shoes, the loss of multiple children is unfathomable to me. We lost one, and I don’t know if I would make it through another.  I remember as a young child sitting at my grandmother’s house and just watching her sit, rock and cry. I could not understand why she was so upset, why she was so distraught, why she would not go to the funeral. After we lost Lindsay I understood completely. The grief of losing a child is indescribable, and the pain that fills your heart is immeasurable.

Death does not discriminate, it does not check birth certificates or drivers licenses, it does not know age at all. It does not look at color or nationality, it does not care about religion or any other beliefs. Death does not, never has or never will, follow any schedule. By the time you finish reading this blog, in the United States alone, two people per second have died, 105 people per minute have left this world and 6,316 people per hour have left loved ones behind. I can assure, you no matter the cause, no matter the reason, they did not choose death, death chose them. I am asking that when you finish reading this blog don’t procrastinate, use one of the many ways we communicate these days and tell someone you love them, tell someone you miss them, tell someone you care.

 

Be a donor..

Be a donor..

I was asked to speak at Wilmington Christian Academy during National Donate Life Month on organ donation and being part of a donor family. Through all the personal experiences and research I felt I should share this information with you. So I have inserted a portion of my speech below.

I would like to ask all of you a question… How many of you watched the super bowl this year?? Okay, well for those of you who did not it was played at the US Bank stadium in Minneapolis, Minnesota. This stadium holds 66,955 people at capacity. Now imagine a second stadium sitting right next to the US Bank stadium it also filled to capacity, that’s 133,910 people, that is approximately how many people are waiting for a life saving organ transplant in the United States today. Every ten minutes someone in the United States is added to the national donor list. That is six people an hour and 144 people a day. Now, on average there are 92 people saved every day with a lifesaving transplant. On the other hand, an average of 20 people a day pass away while still waiting for a transplant. One donor can save up to eight lives, 8! Last year on average over 6000 people a day passed away in the United States from various causes. If everyone in the United States were an organ donor the 20 that pass away daily, while waiting for a transplant would have a fighting chance. In 2016 there were 33,600 transplants and in 2017 there were 34,000. As you can see every year the number rises. The first transplant performed in the United States took place in 1954. It was a living transplant between twin brothers. One brother gave the other a kidney. Since then, mainly starting in 1988, over 683,000 successful transplants have taken place in the United States. There are a lot of variables that come into play when an organ transplant is performed. The recipient patient and the donor patient must match in a variety of different areas, blood and tissue type being the major factors before moving forward. Another factor, if the patients match, is time. There are only hours between patients if a successful transplant is going to take place. For instance, there is a four-hour window on a heart transplant. That’s four hours to get the heart from point A to point B. Imagine if you lived in Hawaii or Alaska and you needed a heart transplant your percentage for getting a heart would be greatly decreased. Even living on an opposite coast would be pushing the envelope for the time allowed. There is some good news on the time line for transplants. While speaking at a meeting in Durham N.C. for Carolina Donors Services I saw a presentation from Duke Medical Hospital. They have a concept for a new device that will double the time allowed to transport a heart for transplant. This new device will add precious hours to save the lives of many, lives that before would not have a chance.

Let’s bring things a little closer to home. In the state of North Carolina there are 3,140 people waiting for an organ transplant. Out of the 3,140, there are 2,686 waiting on a kidney. Since 1988 there have been 21,140 lives saved or changed due to organ transplants. The largest age group for these recipients is 50-64. On the donor side there have been 5,679 donors since 1988. The largest age group for donors are between the ages 18-34. That is 3.72 lives saved per donor. Lindsay was able to save 3 lives, allowed 2 people to see for the rest of their life and help untold numbers of people by having her heart donated for research.

There are many myths concerning organ donation and they are all just that, MYTH’S.

  1. You can’t be an organ donor if you are too young or too old.

This myth can be disproved by the oldest donor in the world. She was 107 years old, lived in Scotland, and donated her corneas so that someone else could have better sight. The oldest donor in the United States was 92. This donor donated their liver to save a life. Sadly, you are also never to young to be a donor. There have been several new borns that have lost their lives during or shortly after birth that have become donors. No one is too young or too old to be an organ donor; the condition of your organs is more important than age.

  1. Doctors don’t work with the same urgency to save your life if they know you’re an organ donor.

It is the job, and the passion of every doctor, nurse, and first responder to save lives. They have all taken an oath to perform whatever medical procedures are necessary to save a life. I can assure you this myth is untrue. Lindsay received the best care possible from the second she arrived at the hospital until the second she passed away. There was never a question of her care, or treatment. That care continued after Lindsay passed away, a representative from Carolina Donors Service escorted her into the operating room. There he introduced Lindsay to the entire staff and stayed with her throughout the entire surgery.

  1. If you’re not in great health, you shouldn’t sign up to be a donor.

You may be surprised that most health conditions do not disqualify you from donating your organs and tissues. While you may not be able to donate certain organs, other organs and/or tissues may be perfectly fine. Doctors and donor personal will assess your organs at the time of death to determine if they can be donated.

  1. Doctors will take all of your organs, even if you only want to donate one.

Another myth I can put to rest, you or your love ones can specify what organs are to be donated. After the consultation with donor services a legal document is signed stating the specific organs to be donated. And as I stated before, a representative will accompany your love one the entire time.

There is a lot more information concerning myths with organ donation on the DMV website along with Donate Life and Carolina Donor Services. Please feel free to look up and read all the myths about organ donation. If you have any questions or concerns you can contact me or anyone in my immediate family and we will do our best to put your concerns to rest.

 

Becoming An Organ Donor

You can become an organ donor in a variety of ways. You can go to Carolina Donor Services or Donate Life and register, we were suprised to learn you can register on line from the age of thirteen on up. You can register at the DMV when you get your license, you can even register using your HEALTH app on your iPhone. If you have registered and are passed the age of eighteen the hospital and the donor coordinator does not need your parent’s permission to proceed with starting the process, but as in Lindsay’s case being she was seventeen, the donor services needed our permission. Once you register online or at the DMV it is a legal binding contract, but there is no donor service that will go against the wishes of the  family. The time in which a love one has passed away is not the time to force the issue. They are in enough pain and have had their hearts truly broken. This is why what I am about to tell you is the most important part of becoming an organ donor. Have a conversation with your family about what your wishes are. Let them know you are a donor, or want to become a donor. Let them know you want to help save lives, let them know you want to take the pain and devastation and turn it into something positive. As a donor father I will tell you knowing Lindsay was a donor does not help in her loss, it does not help everyday when I miss her so bad it hurts, it does not help when I think about what she could have accomplished, but what it does do, it makes me proud to be her father, it makes me proud that we, as a family, helped fulfill her dream to save lives.

Please, if you are not an organ donor consider becoming one. There are so many lives that are effected by checking that tiny black box.

Rewind…

Rewind…

This is week thirty four of me posting my blogs. I never realized it would reach so many people. Never in a million years would I ever think my words would be read in over thirty countries by thousands of people. I can only hope it has brought some sort of healing to another grieving parent, and some understanding to those looking in from the outside.

Today I am going to reintroduce myself, Lindsay and my family. I want to give you an update on what the Lindsay M. Benton Foundation has accomplished in the past year and let you know where we are heading this year.

For those of you who do not know me my name is Brad Benton, I am Jarrett and Lindsay Benton’s father. I am writing this blog for two reasons, one, it is very therapeutic for me and two, I’d like to share what I have learned as a grieving father.

As many of you know Lindsay was in a car accident on August 21, 2016, it was the Sunday before her first day of class for her senior year. After an emergency surgery, and a week in the STICU at NHRMC Lindsay passed away the following Sunday, August 28, 2016. She was 17 years old.

Lindsay, was a lifetime student at Wilmington Christian Academy and was to be co-captain of WCA cheerleaders, a sport she loved. Lindsay had a dream to be a doctor, a saver of lives and a leader in the medical field. She always knew she had a calling in this field and it changed from one concentration to another until she attended the National Youth Leadership Forum for Medicine at Chapel Hill the summer of 2016. During the nine days she spent at UNC she decided she wanted to be a Trauma Surgeon. My favorite message from her during that week was “Dad, I am having the time of my life.”

She wanted to help people; she wanted to use her passion to be the best surgeon she could possibly be, she wanted to mend broken lives. Well, in her passing, her dreams were fulfilled, as she was an organ donor and through organ donation she mended and saved lives.  Little did we know how many lives Lindsay touched during her time here on this earth. We have heard story after story of her “therapy” sessions, her kindness to strangers and her ability to bring reason to difficult situations. To quote one of her tweets, “Don’t ever argue with me, you will lose.” I am assuming she was not including me in that tweet. She was a tenacious, head strong and independent young woman who had her entire life planned out.

She had an infectious smile, a steely stare, and a contagious room shattering laugh. She could melt your heart or make you pound your fist against the wall. She could debate any topic like a pro, and not give up until her point was across. She would hold the smallest of creations with the gentlest hands but she would beat a punching bag until her knuckles bled, and she used gloves. She was a friend, a leader, a captain, an advocate, a lover of life and her guinea pigs. She was also a daughter, and sister, a granddaughter, a niece, a cousin and a friend to many. As parents we think we know our children, but we have come to find we did not know how many lives our daughter had touched. What a blessing it has been to meet so many wonderful people through this.

She was my little girl, she was a big part of my heart, she was my Lindsay Lou.

Although we all miss Lindsay dearly, her legacy lives on through the Lindsay M. Benton Cheer and Art Fund at Wilmington Christian Academy in adjacent with the Lindsay M. Benton Foundation. The Cheer and Art Fund was established to help the cheerleaders and the parents at WCA. Our goal, through this fund, is to help with some of the cost the parents incur and to allow the cheerleader’s to gain equipment, help with some travel expenses and allow them to be the absolute best they can be. Be the best they can possibly be, this was a goal of Lindsay’s. Through the Lindsay M. Benton Cheer and Art fund the Lindsay M. Benton Foundation also funds the Lindsay M Benton Cheer Scholarship. This scholarship is presented to a cheer leader that is in good standing and has been excepted to a secondary educational institution to peruse a career in medicine.

The Lindsay M. Benton Foundation was established to bring awareness to organ donation and the importance of donor registration. The Foundation will also financially contribute to Carolina Donor Services, Patriots In Pink, The New Hanover County Special Olympics, as well as the Lindsay M Benton Cheer and Art fund at Wilmington Christian Academy.   We will have one major fundraiser, a volleyball tournament, each year and this year it will be on Lindsay’s birthday September 29th at Capt’n Bill’s in Wilmington NC.  We would love for each of you to come and be a part of Lindsay’s legacy.

Th First Year:

lmbf logo

Our first year was hard, it was emotional, it was heartbreaking but it was also rewarding. We are thrilled to announce that we, as a collective group, were able to raise $8,900.00 in ONE DAY at the First Annual Lindsay M. Benton Volleyball Tournament. The total amount raised the first year of Lindsay M. Benton Foundation was over $19,000.00! We were so honored to be able to donate $4,000.00 to Pretty in Pink, New Hanover Special Olympics and Carolina Donor Services! (Our goal was $1,000.00 each!) We were also able to donate $2,250.00 to the Lindsay M. Benton Cheer, Art & Scholarship Fund at Wilmington Christian Academy as well as $500.00 towards the 2017 Patriots in Pink Fundraiser to help Going Beyond the Pink. 

 We as a family, and representing the Lindsay M. Benton Foundation, were asked to attend and speak at conferences, symposiums, state meetings and to hospital staff. This was also emotional, as we relived the day of Lindsay’s accident and the day she passed away, but it was also rewarding to see the smiles, the tears and the hear how Lindsay and our family has touched so many lives. speakl 2 We will continue to speak and tell Lindsay’s story as well as the importance of becoming an organ donor. April is Donate Life month and April 13th is Blue / Green day. Wilmington Christian Academy has asked that we attend their daily chapel on April 10th and share the importance of being an organ donor. I have asked that a special guest join us, the special guest is the recipient of a very special kidney, Lindsay’s. She will be sharing the recipient side of organ donation and how it has changed her life and her families life.

 

Please visit the foundation website at http://www.lindsaymbentonfoundation.com for so much more information on Lindsay, and the foundation. We can also be found on Facebook and Instagram. Please consider being a sponsor, a volunteer, or donating to the Lindsay M. Benton Foundation. Mark your calendars for September 29, 2018 and make your way to Wilmington NC, Capt’n Bill Backyard Grill at 4240 Market St. You can also register your 4 person co-ed team for the tournament the week before the twenty-ninth.

Thank you so much for all the support, love and understanding you have shown me and my family. Please continue to keep us in your prayers and please continue to support the Lindsay M. Benton Foundation.