Today our guest poster is someone who I has changed my life. Like my friend Tammy Smith, Lonnie Somers came into my life at the lowest of low moments. In the days following our diagnosis and loss those in my 'real' life were doing what they could to help us but learning what they could about the disease that had ripped apart life as we knew it. I was directed to a website, to a foundation called 'Fetal Hope'. There I found information on TTTS but I also found a message board. Soon I was posting questions, venting and voicing my struggles in what I called 'the hell that was TTTS'. Within hours of my first post the founder and CEO of Fetal Hope was offering his support, his answers and his medical board to help with the questions. Over the next few months I posted, often daily, in Lonnie's foundations' message boards. When 'weird' things happened (inconsistent test results, unexplained doppler readings that my medical team didn't seem to think was a big deal etc) Lonnie would go to his medical board to try to get answers. I was, and am, forever grateful.
But the amazing support from Lonnie didn't end there. In the months that followed the birth of my boys, rather then being filled with a sense of peace, I was filled with questions, with so many mixed emotions and with a feeling of not understanding nor being understood. Lonnie referred me to some people who were affiliated with Fetal Hope that offered bereavement support, he encouraged me to purchase a book written by another TTTS mom who had lost one of her girls (which eventually lead me to Christ) and he offered to interpret the reports from all the ultrasounds, tests and treatments that I had before, during and after TTTS came into our lives. Through this support I was able to find acceptance in the loss of Cole because I as able to see the 'strikes' against us, the multiple complications that, when combined together, did not make for a favourable outcome at all. He helped me to stop feeling guilty for not knowing more about TTTS, for not getting better care, for choosing surgery. He helped me to do what his foundation set out to do, find hope.
In the years since then I have come to learn more and more about what this amazing foundation does and what Lonnie goes beyond the 'call of duty' to get done. I began to be asked by him and Tammy to reach out to others going through TTTS and, from there, I began to find a greater purpose for my feelings about TTTS then the sadness, anger and frustration that had plagued me. With his encouragement I have created groups to give a place of support that welcomes everyone, no matter what the outcome, no matter where you are in your journey. With his blessing, I have incorporated Fetal Health (as Fetal Hope is now known as) into one of these groups therefore adding credibility and integrity to this great support group. With Lonnie's support and advice, our family has run 3 successful fundraisers for our own 'local' fetal distress disorder treatment facility, Mt. Sinai.
I have come to think of Lonnie as a very dear and respected friend and have developed a wonderful social AND working relationship with him. He has taught me to rise above those who don't agree with my beliefs on how support should happen, how to remove myself from situations that make me question myself and my goals with this area of support that has come to be such an important part of my life. I am so very glad that the Lord lead me to Fetal Health and helped me find such an inspirational friend.
Here is Lonnie's story... a version never shared before and one I am so very honoured to be able to debut here.
I see the many faces of so many dear friends and faces I got to know throughout so many years. I see so many faces of those I don’t know either. I see my beautiful wife who has believed in me all these years and was my source for reaching all my dreams. I see my daughters, who inspired me more than they will ever know. They are so beautiful and have made me so proud. My immortality lives on forever in them. Can this really be happening?
Those words, “can this really be happening”, have resonated with many moments in my life. I am quite sure those words have resonated with you too. Thinking back, they say children change your lives. Nothing could have been truer than the way my daughters changed mine. Before kids, my goals were probably not that much different than yours. I wanted the corner office in corporate America as a definition of success. I worked in venture capital and as a CPA. I loved business. I loved the art of deal making. Then those words snuck up, “can this really be happening”?
We were expecting TWINS! Anyone that knows me knows I very rarely have anything to say, but for a good 48 hours I had no words. We were going to have identical twin daughters. Then the second, “can this really be happening?” moment came. We were diagnosed with a fetal syndrome affecting my daughters’ lives called Twin to Twin Transfusion Syndrome. In less than few hours we went from our excitement of having twins to being told the only option was to terminate the pregnancy. How dare someone take away our hopes and dreams! From that instance, my daughters changed my life forever.
We were fortunate, in searching through all the doom and gloom with no signs of hope, we found one doctors name and within a few days we were in Florida having in-utero surgery to save our girls. Thankfully it worked and from that moment on, all I thought I ever wanted changed.
I left my job and spent many months creating a national awareness event to raise money for the syndrome they survived and that killed more babies per year than SIDS. Not long after, we realized more needed to be done to support all families dealing with a fetal issue or syndrome. That led to the creation of Fetal Health Foundation. My wife, myself, and amazing others all worked on its creation. Through the years we helped so many families. While certainly the sacrifice of time with my family, sometimes the people we helped being less than appreciative, all made it difficult for any of us at times, the difference we made more than made up for it. They say doing charity gives you back more than you put into it. They were right. I never felt so fulfilled in my life when I could help a family and make a difference in their lives. I am so blessed as well for all the amazing doctors, nurses, care givers, etc. that became lifelong friends. It was an honor to be part of their work in helping make a difference.
I have been fortunate that my daughters did change my life. I founded an event company in which we worked with hundreds of charities in organizing run/walk and various other events. We made our living helping all these wonderful organizations raise funds, create awareness, and provide important support services for hundreds of different kids of charities. I was fortunate enough also to be the announcer/voice for many wonderful events. My task was to bring out the amazing stories at these events, to pass along that inspiration, and help everyone achieve something special. Everyone was inspiring to me. I would always say at many of the events that getting to the finish line was never the end, but the beginning of what is possible. I see so many faces of those through the years here today, many so dear friends that have inspired e more than they will ever know. I am humbled.
Can this really be happening? It is quite a surreal experience to be looking in at ones funeral (if you have not figured that out now). It isn’t something you think about very often, if at all, when you are living. As I see the many people here to pay their respects (some I know well, some I don’t know at all), I am humbled and fulfilled that my life made a difference.
I see the face of my wife, the love of my life. She gave me the strength and believed in me to create a life in making a difference. I see the tears in my daughters’ eyes. They are so beautiful and have families of their own now. I am so proud of them because they both are so generous and charitable and always working to make a difference. I see them both place their hands on their hearts. I used to tell them all the time that when they missed Daddy, I was always right there in their hearts, and all they had to do was put their hands on their heart to feel me there. My immortality lives on in them.
This is my funeral many years in the future. My life changed from those, “can this really be happening?” words. Something that came from an almost tragic situation, and changed my life in ways I never dreamed possible. It hasn’t always been easy, and I know doubt know there will be challenges to face in the future, but I wouldn’t change a thing.
No doubt you have had that life challenging words (“Can this really be happening?”) moments too. How has it changed your life? If you were at your funeral today, would you be proud of your legacy? You can make a difference. You can be part of something wonderful. It does take sacrifice, but what you gain in return is something more precious and fulfilling than you can imagine. Go make a difference.
I hope that you will take Lonnie's message to heart and reflect on what your own funeral might be like. Go be part of something wonderful, something to be remembered by. Go make a difference!