Last Fall, when he relapsed after his bone marrow transplant, he understood where this journey would eventually lead. At no time was that more evident than during this past Christmas season. His Christmas list read like a checklist for a wonderful adventure (or an awesome day in the field):
Hiking Boots
Camelback Trailblazer backpack
Brush pants or field chaps
Camouflage Shirt
Camouflage netting
As part of our Christmas, Leo had decided that we should write letters to one another as a present. He took the task to heart and began crafting his letters to us. Often, he would awake in the middle of the night and call one of us to his bedroom to retrieve his paper and pen. He stayed up until almost 3:00AM one night writing one of these letters. We believe that as he was preparing himself for some sort of journey, he was also preparing us.
One of his greatest concerns over these past few months was his legacy as a big brother. He wanted to 'be around' for Kay and Henry as they grew and as they needed a mentor, protector, and agitator. Part of his way of showing this was the letters that he wrote to Kay and Henry:
Dear Katherine,
I just wanted to let you know what a special person you are to me. What I mean is that I love you and love how you like to do things with me like hiking, horseback riding, catching cicadas when they hatch and a lot of outdoor things. Well, I just wanted to tell you that I think you are a very enjoyable person. I also just like the way you have energy that helps us all have more energy to spare. All I want to do on Christmas day is give you a big bear hug.
Dear Henry,
Henry I just wanted to let you know how special of a brother you are to me. Me and you can play video games and we like a lot of the same stuff. One of my fondest memories of you is when you were a little baby in your blue jammies. You would scoot on your tummy around the kitchen floor. I just wanted you to know how much I love you. You are the best brother ever, even though I get mad sometimes I still love you more than this world and on Christmas I just want to give you a big hug.
Leo and I had grown so close over the past couple of years. We had done so many meaningful father-son things that we otherwise might have put off for later. He has always been Susan's son, but in addition to maintaining that strong bond with Susan, he had begun to lean more toward me as he began to emerge from being a boy into being a young man.
Dear Dad,
This is a gift I wanted you to have for being with me all the way and being one of the biggest mentors in my life. I thank you so much for all the things you've done for me. That day out in the field with you was one of the best days of my life. Just being out there and enjoying the outdoors and maybe shooting a dove or two. And I am just really thankful that we could get outside and enjoy each other. It was just a very special day for me to go out there with you, Pat, and Mr. Huber. Probably my favorite part of that day was when I shot my first dove and it almost fell on us, and we laughed and had a great time. But the best part of all was we got to spend the day together doing things we love to do. I just want to tell you how much I love you but I am finding it hard to put down on paper I love you so much.
Leo and Susan have a special relationship. They are cut from the same cloth and are bonded fully with one another in mind and spirit. They have of course been inseparable these past two years, and the time together has been a real blessing to Susan. Most moms with 13 year olds are not fortunate enough to spend so much time with their children over such a concentrated period of time, which I'm sure was sometimes challenging for both of them. This is Leo's letter to Susan:
Dear Mom,
Mom I am writing you this letter to let you know how much I love you. You are the greatest person I've ever known. I thank you for your countless hours of tidying up my room and the house and for making delicious meals for the family and I. Thank you for always being there when I am sad or frustrated. I love the afternoons with you cooking or playing a game or just laying around because we have so much fun. You are a very special person to me, if I am sad you hug and rub me and help me to relax. If I am happy I can come to you and we can have a great time. We know each other better than any other two people and when we are near each other we almost don't need to talk. Sometimes it is hard to remember all the stuff we've done but even if I can't remember I'm sure we had loads of fun. One of my favorite times with you is the night time reading together and listening to Garrison Keillor and my my favorite book I read with you was the Little House books. I liked those because I could snuggle up against you and smell your signature 'mom' smell. I love you mom more than there are stars in the sky. I hope you have a Merry Christmas.
As Susan and I had a discussion with Leo last Thursday with Pastor Alice, it was more evident that he was preparing us. One of the things we talked about was how we were going to describe our family after Leo was in heaven. We assured him that Susan and I would always say, whenever someone asked how many children we had, that we have three children; two here on earth and one with Jesus in heaven. As we were assuring him about his place in our family, he was not concerned with himself, but with how we were going to 'be' after he was gone. Would we be okay? His need to care for us and be with Kay and Henry was strong and heartfelt.
It was an honor to be Leo's parents. That God gave him to us for 13 years to love, care for, and learn from was a pure gift. One of the goals that Susan and I talked about early on during this time was that we wanted to bring Leo and our family through this experience 'well'. We didn't know what 'well' meant then and we may not know until after our time is finished, but we did our best to care 'well' for Leo when he was here on earth. We rest now knowing that God is caring for him in heaven.
Susan's reflections from March 18, 2006:
Loving Leo was such an easy thing to do. He was funny, thoughtful, intelligent, articulate, perceptive and creative. He could also be surly, blunt and monosyllabic, but that was generally directed toward the medical staff, and when I was hovering over him too much. But overall, when we think about Leo it was his gentle nature, his quiet determination and trusting attitude that pervades.
What can I share with you about Leo that you do not know? Well, Leo was our scout, the one who went ahead and led us where we needed to go. Through his love of nature we developed a family love of camping, hiking and fishing. It has been through Leo that we have made lasting friendships with wonderful people and it is Leo who led us to know how powerful love can be
Our Leo was so very perceptive and such a great big brother. He would often tell me of things that I really ought to be thinking about in terms of Kay and Henry's upbringing. Things like “You know mom, you really ought to have a plan in place for Kay and Hen in case you are not home when they get home from school. You should practice it too.!” or, “you really shouldn't let Henry play so long on the Game Cube.”. And even though his life was a fraction of our own, Leo's insights were pretty perceptive and rational for one so young. He truly enjoyed the role of Big Brother and took his responsibilities seriously. We would leave them at home for a few hours only to find everyone happily playing up in Leo's room among Leo's things while he babysat.
What Leo did not know was what a great example he was for knowing how to be himself and being comfortable with who he was. Leo was such an interesting person because he followed his passions. He was quite knowledgeable about and skilled in a number of things, but I have never seen him boastful or self absorbed. He had such a quiet and dignified manner about him while all the time knowing how to be silly and fun. I think it is these qualities that made Leo so endearing to us and made him seem so much much older than his years. He was able to shoulder so much and still have enough to keep us all positive and hopeful. I think about how he always came downstairs in the morning carrying his backpack for IV fluids and antibiotics, FULLY DRESSED and ready for the day. “What are we doing today?,” he would ask.
What do you do with memories like those? Well, we have a rough road to walk and we will think about him continually for the rest of our lives. We know a spirit like Leo's cannot just disappear, but continues on teaching and reteaching us lessons as we go. So we will try to be a little like Leo. We will notice the birds, smile a lot, learn more about things, persevere, trust that God will give us what we need, love each other and LIVE A GOOD LIFE.
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Leo Gabriel Johnson, much loved son of Susan and Jeffrey Johnson, brother to Katherine and Henry Johnson passed away Monday, March 13, 2006.
In addition to his parents and siblings, Leo is survived by grandmothers Ruth Quenemoen and Barbara Frazier, grandfathers Michael Strautz and Neubert Johnson; aunts, uncles, and cousins.
Leo was a true nature lover and his knowledge and love of the outdoors was a gift he shared with all who knew him. Leo's large circle of friends and family will continue to love and honor him in the days and years to come.
Friends and family are invited to gather for visitation at Crestview Presbyterian Church, 9463 Cincinnati-Columbus Road, West Chester, OH, 45069 on Saturday, March 18, 2006 from 11:00AM to 2:00PM. A memorial service will take place at 2:30PM with a reception to follow.
Memorials may be made in Leo's honor to the Make-A-Wish Foundation of Southern Ohio, 10260 Alliance Road, Suite 200, Cincinnati, OH, 45242. Donations will also be accepted at the church to create a nature viewing space in Leo's honor at a local park or preserve.
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