A Father’s Failures75I also admit I sometimes fantasize about a “good and pro-ductive” life without Pascal. Pascal’s disordered genes, medical re-quirements, and developmental limitations all fly in the face of the American “gospel” of effectiveness and productivity. Pascal’s unusual and sometimes intense needs are hobbling shackles on productiv-ity—his, our family’s, and mine. I occasionally struggle to identify the significance of Pascal’s life. I want him to be healthy. I want him to have all the therapy he can get and develop as much as he can. But what if he lives most of his life depending on others because of his demanding medical needs? Wouldn’t he be a drain on us, on our society? I try to push that thought away because it forces me either to give up on him or to invasively reevaluate my own beliefs about the value of human life before God. I have at times contemplated what our life could be without Pascal. What if he had never been born or had been born “normal”? Think of all the things we could do, all the books I could write, all the ministries we could lead! When Pascal was in the pediatric ICU hooked up to a variety of wires in a post-seizure coma-like state, I daydreamed of the freedom we could have if he had died. He wouldn’t need thousands of dollars of medical care. We would not have our lives dramatically interrupted by repeated hospital stays. I can only shamefully reflect on this as a very sick hope driven by the consuming obsession that our only purpose is to do things for God in the world and to be productive members of society. I fail both God and Pascal when I allow this destructive perspective to define Pascal’s life, to define our life together.God declares all creation is “very good” (Gen 1:31) before Adam and Eve have any chance to be fruitful. God also declares “it is not good for the man to be alone” (Gen 2:18), indicating that rela-tionship is foundational to the goodness of human life in God’s eyes. When I actually express my fantasy of freedom from Pascal, it tells him I do not want him in this world, that he is no good to me or to God. If I see Pascal as a terrible disappointment, then he will sink into despair; but if I tell Pascal that I am glad, delighted that he exists, then he can blossom as a person made in God’s image.5 God has cre-ated us to need these mutual affirmations, and as God has corrected and enabled us, our family has done this for Pascal and each other. I can see Pascal’s joy. He enjoys his life. 5. Hauerwas and Vanier, Living Gently, 69.Bruehler, B. B. (2014). Holding hands with pascal : Following christ with a special needs child. ProQuest Ebook Central <a onclick=window.open(‘http://ebookcentral.proquest.com’,’_blank’) href=’http://ebookcentral.proquest.com’ target=’_blank’ style=’cursor: pointer;’>http://ebookcentral.proquest.com</a>Created from indwes on 2021-02-18 06:18:17.Copyright © 2014. Wipf and Stock Publishers. All rights reserved.
Holding Hands with Pascal76Pascal spent several days in the hospital recovering from his brain surgery. That was a long and difficult haul for his body and spirit, but near the end of his stay we were able to take him out for a brief visit to a nearby playground. The left side of his face was very swollen from the fluid that was still draining after the surgery, and he wore a little red fisherman’s cap to protect his shaved and scarred head from the summer sun. But despite all that he had been through and his continuing weakness, he was delighted with his few minutes of outside play that afternoon. He smiled a quirky, crooked smile as he bumbled after his brother around the jungle gym. Now, a few years later, Pascal looks forward to almost every day of school, an-ticipating his daily “specials” (art class, music class, gym, etc.) and seeing his friends. At home, Pascal loves it when we wrestle or when I tickle him. He just can’t get enough. He runs through the house with his little sister, having a ball. Jean Vanier identifies this kind of joyful celebration as one of the key constituents of community. Again, he captures our life well in simple words: By celebrating, I mean to laugh, to fool around, to have fun, to give thanks together for life. When we are laugh-ing together with belly laughs we are all the same. We’re all just belly laughing. Some of our people are really crazy and really funny. They are funny because they are crazy, and they are crazy because they are funny. It’s super to be with them.6Pascal is definitely crazy and funny and super. When we affirm that being with Pascal is good, we free him both to have joy and to share joy. We celebrate and laugh and play together. It is no accident that Revelation describes God’s grand renewal of the universe as a big party—the “marriage banquet of the Lamb” (19:9 and 21:9). To be with God in this final and fullest way is to celebrate with joy, a joy that seems improbable throughout most of Revelation with its repeated calls to endure in the midst of horrific events (e.g., 13:9–10; 14:12–13). Pascal’s joyful life with us reflects the ultimate celebra-tion of the reunion of God and God’s people even as we endure the failures and difficulties of our distressing present.6. Hauerwas and Vanier, Living Gently, 37.Bruehler, B. B. (2014). Holding hands with pascal : Following christ with a special needs child. ProQuest Ebook Central <a onclick=window.open(‘http://ebookcentral.proquest.com’,’_blank’) href=’http://ebookcentral.proquest.com’ target=’_blank’ style=’cursor: pointer;’>http://ebookcentral.proquest.com</a>Created from indwes on 2021-02-18 06:18:17.Copyright © 2014. Wipf and Stock Publishers. All rights reserved.