“I was usually filled with a sense of something like shame until I’d remember that wonderful line of Blake’s-that we are here to endure the beams of love-and I would take a long deep breath and force these words out of my strangulated throat: ‘Thank you.'”-Anne Lamott
Over the past thirteen years of unrelenting hard I have experienced a roller coaster of emotions, but the two I feel the majority of the time are polar opposites.
In-between acute shame and astonished gratefulness lies Grace.
The word ‘numb’ is described as being “deprived of feeling or responsiveness.” After experiencing three brain and spine surgeries for Danica, dozens upon dozens of surgeries and medical procedures for my wife, and now a brain surgery for Delaney, numbness is a necessary survival tactic I must employ to get through all I’m asked to do. My life is work that will never provide enough for my wife and daughters. My life is loving through service that will never overcome their suffering. My effort will never be enough. I’m ashamed. I stuff it deep down inside to carry on with the next thing.
K.J. Ramsey writes in her book ‘This Too Shall Last. Finding Grace When Suffering Lingers’:
Deep down, our greatest fear is that if we express how broken and scared we really feel, we will sink into complete darkness. We fear that expressing the depth of our discouragement will separate us from God. This is the knife edge of shame in suffering, the Enemy’s favorite weapon in defeating us, depressing us, and holding us back from the love we were created to receive.
Gratitude for provision of this home is something I breathe. Access to the best surgeon and healing after Delaney’s Chiari decompression, her scholarship to ASU, Danica’s scholarship to Pusch Ridge Christian Academy, a job that’s held through the pandemic and continues to provide insurance for the girls, my wife’s working shunt and my own health are gifts. I consider them more than I worry about what is next, because God has been so faithful. There is no good thing I take for granted.
My wife mostly handles all the bills. Along with being sick she considers this responsibility of access to care her full time job. I see the way she opens the mail and adds statements to three stacks of papers on her desk neatly organized with binder clips. She has a sticky note on each stack with a total due: Monica’s medical bills, Delaney’s medical bills, Danica’s medical bills and bills in collections. She’s a master at paying what she can to keep access to their doctors and surgeons, making payment arrangements with others and letting some go to collections. The sheer number of specialists, hospitals, imaging centers and surgical costs broken down make me sick to my stomach. Somehow she has managed this weight since the months of hospitalization and Danica’s birth and NICU stay in 2007. I’ve been told we should never feel guilty about this, we did nothing wrong to end up here and no family, however wealthy, would be able to crawl out from under this never ending debt. Still I’m ashamed. I stuff it deep down inside to carry on with the next thing. Monica needs another major spine surgery. She needs to see several other doctors about serious mast cell reactions and her bladder. She’s been suffering with a mouth wound for ten months. She’s needed to spend days in bed lately from debilitating headaches. She’s stopped seeking help for now because of a laser focus on the girl’s needs and her unwillingness to create more debt or cry out for help. This breaks my heart.
About a month ago my trusty old Honda Accord needed two new tires, brakes and some other work. The total was $989.03. Our delicately balanced survival budget always necessitates these kinds of unexpected expenses go on a credit card. That same week a letter arrived addressed to me from a man I’ve never met. It was a check for $1,000 and a note that read: “Dan, Here is something to help you take care of your precious girls. You are a good man Dan Snyder!” This love, man to man, somehow took away the crippling shame of receiving. Our life is full of stories like this one. Monica has needed to stay quiet about mounting financial stress since Delaney’s surgery. I’ve always seen God providing when she humbly asked for help on Facebook or GoFundMe. This particular and personal provision was God’s reassurance we are not alone. He will continue to meet every need even when we are too tired or embarrassed to ask. During that same time we were waiting to get important genetic testing done for Danica based on new symptoms and her recent imaging. The box and collection kit from the company was sitting on Monica’s desk for weeks because we needed to pay before we sent the sample. Once again a check arrived in the mail. Just enough.
This consistent display of God’s faithfulness awakens my dull senses and gives me hope.
My life is a ‘Thank you’ greater than shame.
His Grace is always greater.
“And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen.” Philippians 4:19-20