The title above may get some people upset. Yet after reading the eulogy of Scott Lysenko a little boy who had NF1 and a brain tumor like Ne-Ne I knew I had to share this. Scott has been in heaven since 2004 and I am sure was there to help show Ne-Ne the ropes. I have copied and pasted the sermon below because of everything anyone has said to me about Ne-Ne’s illness and death this has probably helped me the most.
When I read it it was like a light bulb went on in my head. This is not God’s will. His will is for us all to live a long life. Okay I am going to stop talking and let the Rev. Francis Hubbard of St. Barnabas Episcopal church say it. For those of you that knew Ne-Ne you can just place her name where Scott’s is in many of the words below. Be sure to read the scriptures noted as well for true understanding.
For Scott’s full story visit his families caring page. Several members of them have nf1.
“Lamentations 3:22-26, 31-33
2 Corinthians 4:16 – 5:9
Sermon for the Funeral of Scott Lysenko
February 27, 2004
Scott packed a lot of living into 7 ½ years.
He threw himself enthusiastically into a blizzard of activities with family, friends, schoolmates. He loved Cub Scouts, T-ball, soccer, swimming, Vacation Bible School, playing in the woods, catching lizards, frogs and, yes, geckos. And smuggling them home, even on airplanes, much to the surprise of his parents. He loved to draw, loved to bounce on the trampoline, loved to play Gameboy and Gamecube. He loved to go out at night with his Dad, searching for animals. He loved to pray, too, and got very, very good at it.
He was a terrific boy. And he used every opportunity to be a kid to the max.
And he was born with a condition, neurofibromatosis, that left him susceptible to brain tumors, like the one which cut all that full-speed-ahead boyish living off just a week ago.
It stinks. It really, really stinks. It hurts. It’s not fair. It doesn’t make sense. What kind of a world is it where this can happen to a kid?
It’s a broken world, this world we live in, in which terrible, tragic things can happen to good people, and to innocent little kids. We see the brokenness of the world manifested sometimes in the hurt people may inflict (deliberately or carelessly) on other people, sometimes in the accidents all kinds of people may have, and sometimes in mysteries. Like this one.
I don’t know why Scott had NF, or why he got the brain tumor, or why now. I haven’t heard any medical explanations for all this, and even if I did, they would not answer all of the question “why.” And I don’t have any “cosmic answer” for why this happened either.
But I do know that some of the so-called “cosmic answers” I’ve sometimes heard are wrong.
This tragedy is not a “test” of anyone’s faith. How cruel would that be. Scripture contradicts that theory: as today’s Old Testament reading says, “The Lord does not willingly afflict or grieve anyone.” There is no celestial sadist at work here.
I also do not believe that “this is God’s will.” Jesus never told that to a grieving person. Instead he affirmed that God’s will is life, healing and love.
But we live in a broken world—made by God, pronounced “very good” by God, but now broken. Broken, but one which is beginning to be made new by God.
In the Lord’s Prayer, Christians pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” This prayer reminds us that God’s will is done perfectly and all the time in heaven—and that God’s will is not done perfectly and all the time on earth. Not yet. That is why we pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” When the Kingdom of God comes, God’s will will be done on earth as it is in heaven.
In the meantime, God is with us here on earth, helping us to get through the pain, loving us and helping us to love others, opening our eyes to the wonderfulness of life here and now and promising that no matter when individual lives on earth end, that isn’t the complete end of those lives.
God understands pain. In Jesus Christ, God absorbed all the pain his torturers could inflict on him and never let himself be lowered to their level—he never let himself hate. Even and especially on the cross he radiated love—love that is stronger than pain, stronger than hate, stronger than death itself. God also understands helplessness; God the Father had to let his Son suffer and die without intervening so that he could absorb all of the world’s brokenness in his broken body on the cross, and so begin making the world new.
So if we’re ever in pain or ever feel helpless, God understands. God’s been there.
And as painful as suffering and death are, God promises that they are not the end.
St. Paul writes in today’s Epistle, “even though our outer nature is wasting away, our inner nature is being renewed day by day.” That happened with Scott. His illness was not just the last part of his life on earth; it became, you could say, “spring training” for his new life in heaven. His inner nature was being renewed day by day. And his renewal did not just benefit him; his precocious spiritual strength is an inspiration to us all. Just two days before he died, he reminded his mother they needed to pray for courage. He already had it, and got more.
The Lord is our shepherd. “Though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.”
Jesus promised his disciples—and all the faithful—in today’s Gospel reading that “I will come again and I will take you to myself, that where I am, you may be also.” Christ has been through death to new life—life unfettered by any illness, pain, disability or sorrow. Life without limits. Christ during his earthly ministry took children in his arms and blessed them; he always had time for kids. He still does.
Imagine what Scott is learning now about animals from the One who made all creatures great and small.
So today is a day we really hurt. Though Scott doesn’t hurt anymore. And today is a day it’s o.k. to ask “why?” Though ultimately, perhaps that isn’t really the big question. Perhaps the question is “How should we live?” I propose that we live with as much love of life as Scott had, and that we use the love that Scott inspired to join God in the healing of the world. There is a tidal wave of love that Scott inspired which has been visible all week, is visible today, and can continue to be visible for a long time to come.
Our broken world has too many children who no one takes to ponds to look for animals, who no one teaches to play soccer or to draw, who no one serves as a scoutmaster or a swim coach or T-ball instructor or Sunday School teacher, who no one reads bedtime stories to or teaches to pray, or visits when they’re in the hospital, or comforts when they’re lonely or discouraged. Let’s find some of those kids and share our love with them and make a difference in their lives, and when we see their eyes sparkle, we can say to ourselves, “This is for you, Scott: thanks for reminding us how to live.”
Scott’s O.K. now. Actually, he’s way better than O.K. It’s we who hurt. But we only hurt because we love, and therein lies the cure: not to love less but to love more, and to let the love of God flow into us and through us not only to give us hope for heaven, but to inspire us to make this world a little more heavenly.
(The Rev.) Francis A. Hubbard
St. Barnabas Episcopal Church”