Another almost two years have past since writing. Oops.
Apologies, but life with three kiddos leaves little time to gather thoughts in the same way that I use to. My brain is down to about 25% capacity. Did you know that? With each child, your brain's function drops by 25%... so... those of you with four or more kids? Well... do the math ;)
I wish I had the mindset to post a fun update on family, and how big Obadiah is getting (holy moly he's almost TWO) and the pure joy he is to our family. But the honesty of my weighted heart tells me that's for another time.
I've struggled to find words for almost a year now, to the heaviness I've felt as waves of vicarious grief wash over me again and again. It's a grief not many can understand because it's not a tangible grief, or even an imminent grief. It's a grief of the "what-ifs", a grief of the unknown future. A grief of what could be. Don't hear what I'm not saying. It is not a rooted fear, per-say. Yes, my confidence rests in God's perfect will and sovereignty. He numbers our days. He knows our plans.
But oh, how my heart grows burdened with the unknowns for my daughter.
Let me share a glimpse into the little-known world of medically fragile/rare genetic disorder parenting.
But, wait. First, let me share a glimpse of the wonder and beauty that is Brielle Julianne Tack.
She is a fiery tornado.
She can snatch a snack from out of your hand faster and further-reaching than you would think humanely possible.
She can out-eat a full grown man and still be asking for dessert. She has more energy than my toddler. She has as much sass and attitude as I did as a kid. In many ways, she's my mini-me.
She finds ways to sneak into rooms and cause mischief when you're sure you've "Brielle-proofed" every inch of the house. That one cracked door is a gateway to the forbidden Eden full of small objects, breakable treasures, and the unattainable delights. She knows no danger.
She speaks a thousand words with a single glance in those wide sea-green eyes. Her eyes are truly her window and her voice. A soft touch, a quick face-grab, a look, a sigh, a burrowing of her head into my chest. She says it all.
This is Brielle. My now-eight-year-old walking miracle. She defies odds. She is grace in the form of a bouncy curly-headed blonde beauty that I call my daughter.
But she also suffers.
I watch how seizures ravage her body every month, sometimes 20+ a day... trying to set her back from reaching milestones. Trying to take away her fire. Trying to dampen her spirit. Trying to ruin any sense of routine or normalcy in our family. Trying to take her away from us altogether.
Epilepsy is a monster that we constantly fight against. Genetic epilepsy is a beast far worse, with its shifting and changing and resisting all matter of medication and medical intervention. It's a battle we often have to lay in the hands of Jesus. Oh, the prayers I have prayed with tears over my daughter. In the middle of the night after yet another attack from the enemy. The unanswered questions and unanswered prayers. Why has no healing or wholeness come? What purpose does this serve? What level of unfairness is this for her to endure? To not only battle seizures, but to have no voice to tell me how she feels, what she fears, to leave me fumbling and searching for my best guesses to help her, comfort her, and to be her safe place. I hate it.
And then the grief hits like a brick wall at the unimaginable that I too often imagine and role play in my head. Nights I lay awake wondering if tomorrow might be the day. The day I'd find her gone, slipped into eternity. Nights I wake up and go to her room, just to gently lay a hand on her chest to ensure the rise and fall of her quiet breathing. I brace myself for the worst, when she sleeps in and I don't hear her "Eeees" in the morning. Every day I breathe a sigh of relief. One more day we dodged a bullet.
Why do I fear this? She's healthy, yes. In spite of seizures and delays of all sorts, she's healthy and happy. And for that I am grateful. But, for those who aren't familiar, there is this looming word every parent of a child with epilepsy dreads to hear. SUDEP. Sudden Unexplained Death in Epilepsy.
I'm sure most of you have heard of SIDS, Sudden Infant Death Syndrome, in babies. It's rare, but it unfortunately happens, and it's heartbreaking. Well, imagine that terribly rare situation, being even more likely to happen with your already-super-rare daughter, because she has seizures that could--for no apparent reason or cause--kill her. She basically won the crappiest lottery on earth.
In the past year, our little tribe of STXBP1 families (there are only 500-ish children worldwide with the same diagnosis as Brielle), has experienced this heartbreak more times than I care to mention. Not always SUDEP-related (some other medical complications as well), but we've lost a handful of these sweet kids in 2020, and each time it feels like your own. We grieve and weep and cry out to God. We often allow our imaginations to take that scary rabbit trail for our own children. Will we be next?
But we can't live there, can we? And what of suffering and grief? What purpose DOES it serve? To the lowliest and destitute, for the frail and powerless. For those who cannot "contribute" to society. For those who cannot speak for themselves. The are utterly reliant on the care of those around them. They need advocates, voices, mediators.
And then, the truth drops in my lap like the warm, comforting words of a faithful friend.
"You were once powerless. You were once destitute. You had no voice that could advocate for your sinful state. You were utterly and fully deprived and separated from me."
Then He sent the mediator: Jesus. And He became my voice, held me up and called me righteous and pure. Not because of any goodness in me, but because of his perfect sacrifice for me. He clothed me in his goodness and stood me before a holy God as one acceptable and redeemed and whole. My mediator, my voice, my only hope for this wretched broken soul. And my only hope for the future wholeness He promises us all. Yes, even my daughter. He promises to make all things new. New earth, new life, free of sickness and pain and suffering. He's undoing all that's been done in the fallenness of man. He's undoing the seizures. He's healing the mind. He's making the mute speak and shout His praises. He's bringing perfection and beauty out of all those ashes and fears and graves of lost dreams.
Will it happen today? Next week? In Brielle's lifetime? I can't answer that, and oh I wish I could hold on to all those dreams I have for her that never will be. To hear her say "Mama" and to do all the things we assume a mother and daughter will do together. But those dreams never were meant for her, at least not yet. Her first spoken words very well may be songs of praise as she runs--whole and healed--to Jesus on the other side of Eternity.
What a sweet gift that would be.
This present suffering isn't how it was meant to be. But through His goodness, our suffering has a purpose. To magnify the good that is to come, to thank Him for being my mediator and my voice, for carrying us through to a better end. For giving us hope.
