Yesterday's post was about a hero of mine, an author who has impacted my life and the lives of many, many others over the years. Today's post is about another of my heroes, this one a little closer to home.
I posted this on Facebook on Sunday:
Had a new experience in church this morning. I have gotten teary singing hymns often over the years, but today was the first time I've gotten teary while playing them on the piano. All the hymns this morning were good, but "Because He Lives" just gets me every time!
That song, Because He Lives, is special for so many reasons. The last verse takes me back to those moments when my daddy took his last breaths...watching and knowing that he had fought his final of many awful wars with pain, and then when his labored chest finally completely stilled and we realized that at that moment, he was seeing those lights of glory, and His Savior's face. Still brings tears and chills, 10 years later.
I sang the second verse many times while holding a tiny baby on my shoulder, and with each one, what a comfort it was to realize that our hope in Jesus was much greater than even that precious baby sweetness.
The memory that I associate most with this song, though, is sitting at a Guy Penrod concert in St. Paul, Minnesota, with my three girls and my friend Jodie. We were in the process of getting Bayley's epilepsy diagnosis, and she was having somewhat frequent seizures still. She was also struggling greatly with this latest crisis in her young life, and I was struggling with her struggles. At 12, she'd already been through some super-hard stuff, and this was just another huge blow.
I remember sitting at that concert singing, "This child can face uncertain days because He lives!" with tears streaming down my face, praying for God to use this for Bayley's good, and the good of our whole family, and for His glory. The whole thing just seemed hopeless on so many levels at that time, especially Bayley's heart. It was one of the most broken times in my life, and yet that song (and others, along with lots of Scripture God brought across my path at the time) gave hope in the midst of the hopelessness.
God's work in the 3 years since completely overwhelms me (in a good way). God has given Bayley an acceptance of her condition and a desire to glorify Him through it that is beyond that of many adults. As the link below explains, it's painful, and frankly, it stinks, but the story doesn't end there.
To add a little more perspective to her post...imagine knowing that you could never take a nap again. I live with it, and I can't even really wrap my mind around it. But Bay can't take a cat nap. She has to sleep the equivalent of a full night, and then give herself at least an hour to get fully awake in the morning, in order to avoid a seizure.
Imagine having to not just close your eyes, but cover them completely, any time you are in the vicinity of a camera flash. Weddings, birthday parties, prom, pretty much any event. And forget having portraits made in a studio.
Take a week and do an experiment. Stop and notice, everywhere you go, every flashing light you see. Flickering flourescent bulbs at the grocery store or the gym, neon signs, movie theaters, emergency lights (especially at night), and the random flashing lights we've discovered are in all kinds of unexpected places. Then think about every single one of those flashing lights being a possible seizure trigger.
Not only does Bay live with those realities every day, but her siblings do, too. Peter, Emlyn, and Ammah Grace are my heroes, too (and not only for this reason! :) They stay up with her when she has trouble sleeping at night. They let her bury her head in their shoulders when she can't avoid flashing cameras. They go into hyper-alert mode at the slightest sign of a flickering light, and are ready to whisk her off to a safe place.
I know we often skip over links in blog posts like this one, but I encourage you (really, really strongly) not to skip over this one. You'll miss a huge blessing if you do. (And if you've never been to Bay's blog before, you might want to look around while you are there. I promise you'll be glad you did.)
Bay is one of my greatest heroes not because she is perfect, because despite her strong perfectionistic tendencies, she isn't. :) She is one of my greatest heroes because even at her young age, she has learned to cling to God, and to His Word, with all her heart. She has gone through extreme pain, and instead of giving in to bitterness, she gives it, over and over again, to God, and she trusts Him, day in and day out, to use the pain for her good, and for His glory.
And as she shares in her blog post today, she is learning to be open about that pain so that God can continue her healing, and so that He can use her to help others.
Here's the link: Silent Pain