Last week, Benji and I made our way downtown to see his kidney doc. It had been a blissful couple of months since we’d seen him last, with only the monthly blood draws to remind us of the seriousness of our dear boy’s condition.

Snaggle Tooth waiting for his doctor’s appointment

He “looks” so healthy on the outside; it’s natural for us to excuse away the little things that begin to creep in and evolve to become his new normal. He fatigues more easily nowadays, the schooldays becoming more taxing. Still, he bounds down the sidewalk at the end of each weekday, a tremendous grin spread across his face-his joy visible for all to see. There’s a rather stern carpool line helper that frequently admonishes him for running. It takes everything in me not to chide HER. If she only knew what a gift it is that he can still make it through all six hours of a regular day, and have the ability to RUN and SMILE at the end of it! But because I hope she is only trying to keep him from hurting himself, I hold my tongue, all the while treasuring these unusual and unexpected blessings up in my heart.

Benji’s nephrologist confirmed what we already knew to be true. His kidney disease is progressing. His kidney function has declined to 24%. It is difficult to fathom that we are almost at the place to list for transplant, though we’ve known of that inevitability from the moment we said ‘yes’ to the precious boy in the Facebook post. His doc feels we’ll be listing in the next couple of months, if Benji’s labs continue to trend downward at the same moderate pace. Oh, how I long to rewrite the trajectory of this narrative! It just simply cannot be that we have arrived at this destination…not with how much we’ve fought and begged on our knees for a different end-result. Oh Jehovah-Rapha, if only…

But surely, Your ways are higher than our ways and Your thoughts than our thoughts.

“O Father, use my ransomed life in any way you choose. And let my song forever be, my only boast is You.”

Our prayers stem from a heart that acknowledges three different levels of outcome: praying with realistic expectations, praying with buoyant hope, and praying for the absolute miraculous. We’ve tried to keep our expectations realistic, with acknowledgment of the presence of fervent hope (that surely every parent possesses). Yet daring to earnestly appeal for a miracle that God would simply heal our boy of his kidney disease-that his life might shine as a brilliant testimony to the saving power of our great God. I am striving daily to align my attitude with this quote…”Don’t cry because it’s ending, smile because it happened.” I never want to lose sight of the sheer miracle that Benji simply being a part of our family is. Expectations are important. So is hope.

There is one final thing we are praying for: Benji’s potential donor. Benji will be a candidate for donation from a deceased donor, but we are told his outcome can be significantly better if received from a living donor. Please be praying whether the Lord is leading you to consider organ donation. Most of us are born with two kidneys, yet only one is needed to live a full and healthy life. How amazing is our God, our Elohim, to create within our bodies the ability to ‘love our neighbor’ by saving their very life!

Several in our family have expressed their desire to be considered, and how we hope and pray ONE OF US can be his donor. But because we are not biologically related to Benji, it’s quite possible we will need to look farther outside of ourselves to find a match. It’s surely a #bigaskbiggive.

Big Ask Big Give

But we know God is in control of all things…causing the hearts of those whom He may be preparing for this arduous but incredible journey to beat in harmoniously holy tandem with ours.

A few pictures since the last blog.

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