Rory writes…..
Some opportunities in life are just too good to be true… and some, you can’t help but keep pinching yourself at how very lucky you are to be a small part of them.
No, unfortunately I didn’t actually get to meet Forrest Gump, but I did get to be on his movie set for a few minutes (otherwise known as the National Mall) during this past week. I was blessed with the opportunity to be part of two very special events that were for causes that are near-and-dear to my heart, and Joey’s. The first one took place in Washington, DC.
I had been invited to DC by the National Hospice and Palliative Care Organization to take part in a Congressional briefing on hospice and end-of-life issues. I am not a political person in any way, but I am passionate, like my wife was, about people having the right to choose a better way to spend their final days, weeks and months. So early last week, our manager Aaron and I flew to our nation’s capitol to be part of a roundtable discussion on Capitol Hill in front of some members of the House, the Senate and many other nice folks that were there.
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One of the speakers, a wonderful doctor and author named Atul Gawande, showed his powerful PBS documentary “Being Mortal†and he and others spoke about important legislation for hospice initiatives. Then the moderator showed the trailer for Joey’s documentary and asked me to share some of our story and what a difference hospice made in our lives during that difficult time.
I’ve been amazed to learn how many people are scared of the word ‘hospice’, and end up spending most of their remaining days fighting, struggling to find a cure that never comes…and miss precious time with their family and friends that they could be spending while they’re still here and healthy enough to enjoy it. I am so proud and in awe of Joey and the wonderful gift of time and memories that she gave all of us during the final months of her life. Hospice and their doctors and nurses are part of how that happened for us.
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We were only there for one day, but I had the chance to walk around a bit and see a few a few of the memorials and even a white house with columns in front like ours… only lots bigger.
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I barely got home and was off again the next day to Baltimore, Maryland. This time with Indiana and our oldest daughter Heidi. Indy’s best friend Scout and her family were going to be there for the Loeys-Dietz Syndrome Foundation‘s annual conference and we decided to tag along to learn more about Scout’s illness and meet other kids and adults who have the same diagnosis.
It was Indiana’s first flight as a toddler and I was worried about how she would handle it. She did so well. She watched her “Signing Time†sign-language videos and spent lots of time coloring and reading books with Heidi and me.
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When we got to the conference, there were dozens of families there from all over the world. We loved getting to meet most of them and spending a little time visiting with them and hearing some of their stories. About their struggles and also their victories.
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While Indy played in the child-care rooms with the other kids, I sat in on some of the lectures with the parents and learned as much as I could. The foundation has come along way in the short time since the syndrome was discovered, but it’s clear that they still have a long way to go. The past president of the foundation’s fourteen-year-old daughter passed away a few weeks ago from the disease and so the importance of learning more and finding ways to help and treat LDS was on everyone’s hearts and minds, now more than ever.
Scout and her brother Ash and their parents Gabe and Mandy McCauley are our neighbors and our family spends a lot of time with theirs. Scout is seven now and doing pretty well, but her parents worry a lot about her and that makes us worry for them too. So back in November, Joey and I made the Loeys-Dietz Syndrome Foundation the charity that we selected to benefit from our Hymns album that came out this past Valentines Day. Cracker Barrel offered to donate a dollar for every album sold in their stores, and so I think it’s been a very helpful thing for the organization. At least I hope so. I know Joey was so happy that we were going to be able to help them in some small way. And Joey would’ve been so proud to be there for the conference with me this past weekend if she could’ve been.
Scout’s dad asked me to speak at the event and on Saturday, just before he called me up to the podium, Gabe said some very sweet things about Joey and me. It was so, so special…
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The foundation gave us a special “Loey’s-Dietz Foundation Heart of Gold†trophy that one of the board members had hand-made for us and also a Heart Of Gold teddy-bear gift for Indy.
Joey and I have been blessed to win a number of awards over the last ten years during our music career, but none mean more to us than the ones we received that day.
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Later that evening, Heidi and I took Indy for a walk around the Baltimore harbor. It was so beautiful there and the weather was perfect. Just before sunset, we found a carousel near the water and took Indy for a ‘horsey’ ride. She loved it so much…
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By the time we headed back to the airport to fly home on Sunday morning, our little Indiana was all tuckered out. It had been a wonderful trip and an even more special week.
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Once back home, we only had about twenty-four hours to get over our jet-lag and get back on another plane headed out west to Wyoming and Montana to spend two weeks on vacation with Joey’s three sisters and their families…
But I’ll save that for another story, another day.
Read it all HERE
