Art, profundity, transcendence, these things come in many forms. The entries so far in my “Everyday Transcendence” series have all focused on music. Today I want to focus on the beauty of a life well-lived in the midst of suffering.
To bring a child into the world is to take an enormous risk. I’ve written elsewhere that we have children because love overflows. We’re created in the image of a God who is Love, a God whose love overflowed with creativity and compelled him to make creatures in his likeness. So we do the same, and yet we run the same risks: that our children will reject us, that they will destroy themselves, that they will suffer illness or injury or even be taken from us in this life. We run the risk that they will not even enter into life in full health, and that their brief days among us will pass swiftly and leave us with sweet memories but an aching sense of loss too painful for words.
The video that follows tells one such story. You may have seen it before. The Hartman’s learned when their son was still in the womb that he suffered from Trisomy 18. A child receives a copy of 23 chromosomes from each parent. Trisomy 21 — also known as Down’s Syndrome — occurs when a child receives three #21 chromosomes instead of the usual two. In Trisomy 18, also known as Edward’s Syndrome, the child, with three #18 chromosomes, suffers from heart defects and the malformation of various internal organs. Every cell in the body has this chromosomal abnormality. It’s typically fatal before or shortly after birth.
Watch the video — try to get through it — and then see, below, the comments the father wrote shortly after the story was over.
I’ve enjoyed reading the journal the father kept throughout the experience, and after. He speaks honestly about the struggles they endured. This comes from the last entry posted before Eliot’s death:
We have heard repeatedly how strong we are, and we can only grin sheepishly and cut eyes at each other. We know we are not strong. We each know the tears and hurt of the other.
I fully expected at the outset of all of this to be mad at God…to have it out with Him. I’ve read enough of the Bible to know that He frustrates His followers and allows them to air their anger. But I am not mad. I am weary. Too dizzy to fight. I’m the boxer that does not know which corner is his own. I doubt. I struggle. I waiver. And that’s the truth…I am thankful to follow a God who does not discard the traitors.
In his words at his son’s funeral, the father says, “Through Eliot we experienced the paradox of joy and pain ablaze side by side.” Then the couple took a vacation with friends, and he speaks of the joy, but…
With that said, one thing has become abundantly clear. We hurt. Whether in New York or home, busy or bored, together or alone. We miss him. There is a painful emptiness for which there is no cure. Our future hope has not dulled today’s pain.
…For believers, we do not want to push others away by admitting our horrible thoughts and pain. However, anything else is hypocrisy. It is our belief that our God will be glorified through a truthful accounting of our experience. It will be ugly, and revealing as to our weakness. And this is precisely why we need Him.
I have feared this post. Fearful that I have nothing to say. I struggle to have a complete thought, for they are always being cut short with doubt. As I have fought with how I feel, I will tell of what I know. Throughout this time, I can say with full confidence that God has been present. He has not come with thunder & lightning as I had hoped for. He was not the healer that I had prayed for. However, He was ever lingering, always surprising. Making an appearance in the most unlikely manner at an improbable time. Then again, I guess that was the theme with Eliot.
The couple brainstormed ways to tell Eliot’s story, and even started a nonprofit called 99 Balloons. My favorite of the father’s reflections come from November 29th, just over one month after his son passed away:
Recently my thoughts have turned to hope. Hope is that which empowers us to make it through a day. To get out of bed, to look past the behemoth that is the now. The question that has been pressed upon me as of late is this: for what do I hope?
I had hoped that Eliot would still be here. That God would do a miracle. That he would be the kid that filled the pages of medical journals. I hoped that we would be a family for longer. I hoped that he was present at my funeral — just as it should be with a father and son.
I make no apologies for those hopes. Naïve as they are, I know a God who could have fulfilled these hopes with a single touch. But, today, we linger in a world that was absent that touch. So what is the subject of my hope now?
I hope that God is who He says He is. I hope beyond hope that His word is true.
Actually, this was my hope all along. God has not failed. I believe that one day I will be released from this body, and be at His feet. The questions will be answered and I will wonder no longer. Ginny & I believe that while we’re still here on earth, that something is waiting to be done.
My hopes cannot thwart God’s plans. And I am learning that this is a good thing. May His will be done. For therein lies my hope.
The couple keeps a new blog (and the wife blogs here). In the years since Eliot’s passing, they have had two healthy children, they have begun the process of adopting a child from the Ukraine, and the father works for 99 Balloons to serve the interests of children with special needs.
I’ll close by citing the father’s reflection on December 13, 2006, less than two months after Eliot died. He reflects on the peculiar story of Jacob wrestling with God in order to receive a blessing. He receives the blessing, but God touches his hip and disables him in such a way that he’s left with a permanent limp.
Here’s what I do see. Jacob got his blessing. He wanted it, asked for it, fought for it, and received it. But that is not all that he got.
Jacob left this encounter with a limp. Not a sermon often preached. However, Jacob’s story of blessing could not be told without the follow-up that he was never able to walk right again. That’s the funny thing about God, the blessing doesn’t always come as we expected and although we receive the blessing, we’re left to limp along.
Eliot was a blessing. We’ll never be all right without him. But he was well worth the limp.