Fatherhood has been both the most rewarding and most difficult experience of my life. I expect that many parents who have kids with special needs or who are battling diseases or disorders feel the same way. I have such a sense of pride for what my 12-year-old twins Hailey and Livy have become and the time they have spent giving back to others. Their relationship is a wonderful example of how the love between two sisters can be a source of tremendous inspiration.
Livy's Hope Blog
It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.
After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.
Wouldn't it be nice if, when a woman got pregnant, she had the option to sign up to be a Super Mom? Isn't it only fair? No mother-to-be ever says, “Sign me up to give birth to a child with special needs. Perhaps my marriage will become extremely complicated or even end. I hope to lose many of my friends after the baby is born. I look forward to my body deteriorating much faster than women my age. Put my name down for depression.” Yet these are all common realities the Super Mom faces.
It is a fact that the majority of parental caretakers for special needs children are mothers. In today’s world, most dads go off to work not fully aware of what happens at home. Many times, dads turn their backs on their families all together because they are not able to handle it emotionally. I can’t even imagine walking in the shoes of a single mom raising a disabled child. Again, another choice these amazing moms do not get to make. Allison and I have a hard enough time and we are both engaged.
Yesterday was a very sad and difficult day for a very special family. Gavin, a little 5-1/2 year old boy, was taken so early from them and they said their good-byes. Thousands of people are now following Kate's blog Chasing Rainbows and have become one big, supportive, online family. Many of us drew Gavin's name on our hands to remember him. It was one small gesture to let his family know we were thinking about them and to remind us how fragile and precious life is. As the day went on, Gavin's name and rainbow faded on my hand. By this morning, it had vanished. I placed my other hand over where it had been and took some deep breaths. This little boy's story hits so close to home. A friend of mine said it perfectly, "It brings our greatest fears to the surface".
Shortly after Livy was born we were told she had a limited amount of time to live. It shook Jon and me to the core and we had no idea how to handle the emotions that came afterwards. In that moment, the hope of a beautiful childhood faded away. We went to Boston Children's Hospital seeking a second opinion, holding on desperately to the idea that the first doctor was wrong. Instead, the diagnosis was confirmed. We sat down with the Ethicist at the hospital and had the most surreal conversation about signing a DNR (Do Not Resuscitate) for Livy. We had come face to face with the gruesome fact that we were to decide her fate. It had actually come to that and we were beside ourselves. We were new parents making one of the worst decisions of our lives. Ultimately, we did not sign a DNR but we do understand and respect why parents do put them in place.
Anticipation, nervousness, excitement…they were all over Hailey’s face on February 21st. We arrived at the a la Cart Pavilion in Tampa to attend the 8th annual WEDU Be More Awards which recognizes many of the unsung heroes in the local community including non-profits and other individuals who go above and beyond. Hailey was nominated and was a finalist for the Be More Inspiring: Rising Star Award because of all that she has done to help raise money for Livy’s therapies. It started back in November when we were told by Hailey’s principal who heard from her music teacher that he had heard from a friend about her nomination. To this day, we still do not know who nominated her but we are incredibly grateful. The guideline was that the nominees with the most on-line votes would be selected as finalists and then judges would decide the winner. This set off a flurry of voting from our family and friends. People could vote once per day. I was told that reminders were set and reoccurring appointments on calendars were created so as not to forget to vote each day. Thank you to all who voted!
After the voting was complete, we were ecstatic to learn that Hailey was a finalist! This meant we would be invited to the WEDU celebration where the winners would be named. None of us knew what to expect at this point so we got our tickets and prepared for the day. I had watched the video from the previous year’s award ceremony and I advised Hailey that she may want to write down a little something to say if she was lucky enough to win. She got right down to it and wrote a paragraph on note cards which she then rehearsed a handful of times. I am still amazed that at only 8 years old how comfortable and poised she is when she speaks in front of others. Credit that to her gifted program at school and to the times our family presents to her classmates or at disability conferences.