(This is a letter from a volunteer for Edmarc, the pediatric hospice that helped us when Taylor was sick.)
Dear EdMarc Parents,
This was the second year in a row that I was lucky enough to have visited families like yours. I know it may sound crass to say lucky when you're talking about a family with a child who has a life threatening illness. I mean, how can you talk about luck when you are talking about death? It doesn't make any sense.
Let me explain. I feel lucky to have visited your families because being there reminded me of our purpose during the short time we all have here on earth. We are called to love one another. Not stupid silly Christmas tree lights and eggnog love that goes away after the holidays. Not the love that you give to the neighbor down the street who you see when you are in your car. I'm not talking about drive-by love.
I'm talking about real love. In the Bible it's called agape love. Agape is a Greek word that means complete and unconditional love. It's the kind of love that God has for us all, his children. And it's the kind of love that WE can have for OUR children, and for each other, if we have the Holy Spirit in our lives.
Agape love is every EdMarc parent telling his or her child, "No matter how lost you are, no matter how broken your body, or short your life, no matter how little you can tell ME that you love me, I will love you."
"I will love you to the moon and back. I will love you to the Alpha Centauri, and across the universe. I will love you beyond time and in time and out of time. My love for you began before you were born and I thrilled to it while you were alive. And it will survive your time here with me and for an eternity in Heaven where finally you will be completely healed and perfect in every way and our love will be completely realized. In a little while we will be together again."
"No matter how much pain I have because of your pain. No matter how much my heart hurts and breaks every day. No matter how often I just don't think I can go on like this. No matter the agony and guilt and absolute hopelessness I sometimes feel, I love you, my child."
"It doesn't matter to me how imperfect you are, for our love is perfect, and your soul is perfect. I don't care that you will never be on the cheerleading squad, or make the game-winning touchdown, because for me you ARE already the best that God could make you and you are the winner in my life."
Dear EdMarc parents, I feel lucky because, with your families and through your child, I was reminded of the beauty and glory that God has for us all. A long time ago, people thought that a child that was blind or had any kind of deformity was caused by the sins of the parents or the child. And so one day, when they saw a blind man, the disciples asked Jesus who had sinned, the man or his parents. And Jesus said, "Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life."
I know this seems unfair, and I wouldn't blame you if you rejected it. But I think it's true, and I have seen the truth in your families and your beautiful children who, for whatever reason, were destined to be here for just a short while. Now you might ask exactly HOW was, or is, God's work displayed in your child. I would tell you that it's displayed in many ways.
First, in the child itself. When people come and behold your child, knowing that this child is just a short-timer, God's work is displayed in their hearts when they go home and relentlessly love their own children, no longer taking anything for granted. Maybe God works in them after seeing your child by lighting up their hearts enough so that others are warmed by them.
Secondly, God displays his work through you, the parents. Your displays of selfless agape love are there, plain and simple, for all to see. It is a testament to the child that you have, and a living example for all who come into your homes. You are probably thinking that you don't FEEL like an example, but let me assure you that you are. Through you, we are reminded of how completely God wants us to love one another, not just our own children.
Thirdly, and finally, I think God displays his work through your families by the people that are drawn to come and pay homage and respect to the child and the family. By coming, we are saying that we care deeply about you and your child. Look, we have come from afar to bear witness to the life of this child, this child of God. We have come to bring you joy and love, all of it given freely to us by the Big Dude in the sky. Because in the end, we are all from the same Father, all from the same family, all brothers and sisters.
God bless you all and give you hope where it seems hopeless, and light where it seems dark. Thank you very much for allowing us to come and share in the life of your child.
Love,
John Koehler, Robin Hood Member