This week, I met a remarkable person. She and her husband have two beautiful children. Their oldest, a daughter, has Rett Syndrome. It’s a rare non-inherited genetic disorder that slowly impacts a child’s abilities to walk, speak, eat and even breathe. Their little girl, Maggie (short for Magnolia—c’mon, how precious is that?), is a delightful, spunky, bright and shining little star in the universe. You can check out her videos on her parents’ blog at www.magnoliashope.com. You can also donate to help find a cure. Researchers are very close. It may be the first genetic disorder not only cured, but reversed.
I was honored to visit with Maggie’s mom and see pure love for her daughter ooze from every word and expression. Her heart is also very tender as she aches for her daughter’s struggles and soberly weighs what the future might bring.
An illness like Rett Syndrome slams the brakes on life’s status quo existence and forces questions and scenarios a person never wants to ask or consider.
I remember such scenarios as I sat in a hospital emergency room fearing that our second daughter would be lost before she was born. The pregnancy did not end, but my wife’s symptoms became life-threatening. Hospitalized with a deep vein thrombosis, both she and our unborn child were at risk. Then my wife was accidentally given an overdose of medication. Once again, death loomed.
Miraculously, she recovered, but her fragile condition brought an eight-month odyssey of physical disability, medical tests, injections three times every day, and no promises from the doctors.
During the fog of looming loss and present suffering, you sometimes wonder why life has to be the way it is. You wonder what in the world God is doing—if He’s doing anything at all or even paying attention. You wish you could have a few moments of normalcy, just thirty minutes of having the weight lifted off your shoulders. But as that yearning breezes through your thoughts, guilt hangs onto it like a tail on a kite. And back to reality you go, serving, caring, helping, and wondering how it will all turn out.
It’s a strange state of limbo with undulating highs and lows, bursts of hopeful energy, and deflated moments of tears. You wonder how long it will go on, but you dread thinking about its completion because the result may bring devastation beyond words.
We called our daughter our “miracle baby.” To this day, she is a thriving and delightful gift. My wife came through it all, too. She is still caring for and loving the precious people in her life. For this, I will always be grateful.
Maggie’s mom and dad are still in the middle of the journey. My heart goes out to them, knowing that only love and grace carry us as we forge our way into the brutal headwinds of uncertainty and pain. But that’s what I saw in Maggie’s mom: unquenchable love and transcendent grace. It all added up to the gift of hope—in this case, Magnolia’s hope.
Please give a gift to encourage Maggie and her family and to move closer to a cure.
If you need a lifeline of hope during hardship, check out my new book.
If you missed Part 3 of Stories Behind “Hope When Your Heart Breaks,” take a look at it here.