by Juli Boit
I long for the day when God will wipe every tear from our eyes. When death and its sting will be no more. When the anguish that accompanies sorrow and mourning, along with the pain, fear and disappointment of disease, will be replaced with a kind of wholeness my mind and heart can only begin to comprehend.
It isn’t today, but I find hope in the promise of its coming. When I say hope, I mean a sort of aching and waiting, a trust that the wrongs will ultimately be made right, that death will not always win.
I recently came across a quote that has been attributed to John Lennon and Fernando Sabino, but it may be most accurate to say the original author is unknown. The quote, however, beautifully reads: “In the end, everything will be okay. If it’s not okay, it’s not yet the end.”
For my eleven-year-old daughter with sickle cell disease, everything is not okay.
As we sat around the kitchen table, my husband, Titus, and I had the impossible conversation (again) of why her two little brothers had traveled across the world for treatment that ultimately cured them of their sickle cell disease, and why she didn’t get to go. Of how she didn’t have a donor match to undergo bone marrow transplant while they did. Of why her body still pains each day while they’ve begun to forget how much it once hurt.
We discussed details of her disease to remind her of the reasons she takes medication each day and needs to avoid triggers like heat and cold, dehydration, stress and basically everything else under the sun.
In Kenya, where we live, up to 90% of children with sickle cell disease die before they reach the age of five. She has long outlived her life expectancy; and while we are grateful for that, it doesn’t feel like enough. We want more life. More hope. More healing.
We pray for opportunities for her to receive treatment. We long for her to have freedom from the cruelty of a disease she’s known her entire life. We are not promised this outcome, but we continue to ask for it.
And all along the way, God’s lovingkindness accompanies us, whether we feel it or not. His goodness and mercy, even in the hardest of hard, makes it safe to pray unfiltered prayers. To cry tears in the middle of the night as we plead for the suffering to end. To sit in silence when words, as Gustavo Gutierrez rightly describes, “can no longer communicate the depth of what is experienced. Simple and silent presence is a touchstone of love.”
And, friends, love never fails.
God, in present tense, sees, hears and intercedes on our behalf. We are not alone, even in the lands where only shadows pervade. As much as I look forward to the day “when everything will be okay” (and I do thank God that day is coming), I don’t want to skip over the goodness of God that is for us today. Psalm 34:8 (NIV) says, “Taste and see that the Lord is good; blessed is the one who takes refuge in him.”
When my little boys were cured of their sickle cell disease after months of grueling treatment, people would often comment in response: God is good. While I agreed, it also struck me that God’s goodness wasn’t dependent on a specific outcome. His goodness was never in question.
As our family continues to navigate the pain and uncertainty that accompanies our daughter’s disease, I want to learn to lean in and taste and see that God is tender with our broken hearts.
We can feel our feelings, admitting our questions without answers and vehemently refuse pat responses and clichés. All the while, our confidence, though wobbly at times, can remain and contend: “I will see the goodness of the Lord in the land of the living,” (Psalm 27:13, NIV).
Even here, maybe especially here, the mystery and blessing of God’s goodness, in present tense, is available to us as we take refuge in him.
Juli Boit is an author, Family Nurse Practitioner, founder and International Director of Living Room International, a community-led nonprofit providing hospice and palliative care to adults and children in Kenya. Juli’s new book, From Beyond the Skies, chronicles her journey of moving to Kenya, founding LRI and becoming the adoptive parent of three children with Sickle Cell Disease. www.LivingRoomInternational.org IG@julimcgowanboit.