There is a certain member of this family, who, for the duration of his almost two year old life, clearly has demonstrated a moral objection to predictability or monotony in any way. He was not expected to survive past birth, and he did. He should not have made it through his first year, and he did. He should not have made it through a recent four month stint home on hospice with liver cancer, and he did. I don’t know what choice one has with such a child except to let him have his own way, and try again to do what we know to do to help his little body become healthy(ish). I am completely grateful for, and deeply admire his tenacity, although I personally feel that he may have used his “youngest of the family rights to be dramatic” a little liberally. Do you suppose it is his name?? Maybe “Jedediah” was a bit much, maybe we should have picked something calmer. Like Tom. Or Henry.
Getting a full body renovation to the extent that he needs is a life threatening venture on a big person, and so much the more on a 30 inch long chunk of miniature boy. Everything looks so very neat and tidy on paper, get a couple surgeries, get some chemo, get a new liver, get a new kidney, have some more chemo, get some cochlear implants at some point, maybe a nose job (kidding!!)…none of it includes the ifs’s, the maybes’s, or the unexpected crises. It is terrifying. It is exhilarating, The possibility of success hangs in clear view, in plain sight, but we must, with agonizing patience, watch a baby crawl blindly through a perilous mine field of explosive situations to get to it.
I think this is what Paul must have meant when he said that tribulation works patience, and patience brings experience, and experience brings hope, and there is no shame in hope. Tribulation? Check, check and check. Patience? I plead the fifth. Experience? More than I deserve to have been privileged to see. Hope? I would be shattered without it. I have hope, because I have seen the goodness of God in unlikely places. I have hope, because I have seen life spring from situations shrouded in absolute darkness, life which only could have come from a life-breathing God. I have hope, because I have put a fearful hand into a faithful one, and that hand has never once loosened it’s grip on me despite how mine might slip.
Long distance mothering is a funny business. I have to check in with my sources before I actually know the answer to the simple question, “How is Jed today?”. It doesn’t work to drive over four hours to see him every day, because there are three other kids that need a mommy too. I become a diverting visitor into his world, a polite guest that asks too many questions, plays peek-a-boo for a few hours, and then leaves with a bag of dirty little shirts and a blanky to take home to wash. Instead of a baby cry in the middle of the night there might be a phone call, and it won’t be the sort of call that promotes pleasant dreams. There will be good days, and there will be bad days, but I may miss the bad day because I visited on the good day. There will be guilt for that. The hours I spend watching a little boy sleep, leaving the home front to fend for themselves without me, there will be guilt for that too.
There is always guilt, all kinds, all the time. “Going a day without thinking too much about him” guilt. “Too much thinking about him” guilt. “Watching him suffer” guilt. “Balancing his importance with his very healthy, very normal, sisters’ importance” guilt. “Slipping on attention to the other extra needy child in the family” guilt. Endless guilt exists because I have limits; limits to what I can do, and limits to what I can understand. It is in my limits and in my constraints that I have the most perfect seat in the stadium to clearly see the amazing display of dependability by a limitless God. The contrast between His abilities and mine are stark. He can flawlessly be to each of His children exactly what they need Him to be, in the time, in the place, in the deep soul satisfying way that only a Creator who knows His creation in precise detail can do. Guilt lays it’s table with a buffet of shame. Guilt’s object is defeat. Hope is the opposite. Hope combines every bitter ingredient into a single confection fit for a child of the King. It offers just a taste of the possibilities. It begs me to continue, it’s object is my freedom in Christ. There will be no sour taste of shame in a single crumb hope offers me.
I don’t know why Jed’s little body formed with that tiny blockage that wrecked his health. I don’t know why, after all that, cancer formed in his liver. I don’t know that this new attempt at treatment will be at all successful. I don’t know if he’ll see his second birthday, or if we’ll go eat Chinese and snap selfies together on his fortieth birthday. (Because what forty year old man wouldn’t want a selfie with his mother??) I don’t know what I don’t know, sometimes I even get a little embarrassed that I don’t have a good explanation for why we had two extremely physically challenged children in a row. I am more than happy to exchange my microscopic look at all the heavy and baffling questions of a broken world for the telescope of hope. It is through hope’s generous view the wide expanses and dark skies become a corridor to unimaginable depths. It is only through hope’s lens I can catch glimpses of countless unclaimed promises sparkling in their galaxies. I can no more expect to see all of these things in my own simple understanding than I can expect to see the grandness of space with my naked eye. I need a perspective to ground me that is neither relative truth nor circumstantially accurate, and hope is that perspective. My hope is built on the foundation of the facts of what God has been in the past. My hope is validated today by what I know of God personally here in the present. And all my future is built on the victory that hope teaches me to expect with complete certainty. Shame in hope? No. No, I don’t think so.
Romans 5:1-5 Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.