On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility.
And together as a family we have done just that, packing more smile and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with 10 women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife which he held onto til the very end. We have lived every day with Henry to its fullest. We have had ice cream for dinner; transitioned from the hospital to running a lemonade stand in a matter of minutes; gone to Cactus Cantina seven nights a week; acquired every single Pokemon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case.
As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disneyworld, Funland, Sullivans or any of the other fun things in life than Henry. He was a great lover of music and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home.
It is such a privilege to be Henry’s mother and am thankful every day that Allen and I found one another and created such a wonderful, love-filled family.
It’s no surprise that Henry has had an ongoing fascination with superheroes. He put on a Batman costume for Halloween when he was two and didn’t take it off until we left for Minnesota 2 ½ years later. Henry didn’t need it anymore since he had received sufficient training and at that point he had achieved superhero status in his own right. As my brother Andrew said, Batman should wear a Henry shirt.
My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; smores at a campfire; a piñata at a birthday party; fireworks on the 4th of July; a ride on a ferris wheel; the glow of candlelight during a thunder storm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow.
One nightfall, the evening before we left for Henry’s transplant, Henry and Jack were taken by the magic of fireflies and started to run around our yard, catching one after another. Each catch was a victory and was met with curiosity and excitement. Some of those bugs sacrificed their lives at the clumsy, but curious hands of these three and four-year-old boys.
I watched and let myself feel what it’s like to be a kid, filled with curiosity and wonder about the world. At some point I noticed that Henry had disappeared, so I went inside to see what had become of him. I went upstairs and slowly opened his bedroom door and heard a whisper telling me to come in quick and to shut the door. I found Henry lying on his back watching the fireflies, which he had brought upstairs one-by-one and set free, light up his room.
I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you and I sure wish that Daddy, Jack, Joe and I didn’t have to. I miss you so, so much already honey. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son.
So today we say farewell to your body and every day from now on we will cherish your soul and spirit for they live within us now. Goodbye Henry.