Last week we were back in a building at our local university hospital that also houses their genetics department. It turns out the nephrology rooms are identical to the rooms on the genetics floor and it was a similarity I wasn’t prepared for. Over the last ten years we’ve utilized several specialities at this hospital, and three others, but none of them have had quite the same effect on me as this one did. From the moment Baby Girl and I parked in the ramp, to the moment we took the familiar seats in the exam room, my heart rate accelerated along with my memories.

It was ten years ago when they brought a box of Kleenex and a genetics counselor in to explain to us that Baby Girl’s genetic testing had revealed something called Spinocerebellar Ataxia Type 8 (SCA8). The blood roared in my ears while the black started to cloud out my vision and, seemingly, the oxygen in the room while they told us these are the conditions they hate to find. That there was no treatment and no cure. This progressive, degenerative, condition would slowly rob her of her mobility over the course of the next ten years. It would start in her hands and feet and work its way inward until it stole her ability to even breathe and swallow. And as time stood still in that room the next ten years raced behind my eyes and all of a sudden I was the one that couldn’t breathe or swallow.

Over the next couple of months we listened to so many tell us what to expect for Baby Girl in the future that it became almost impossible to live in the day. And when the lights went out at night, and I was alone in the quiet of her room, watching her from her trundle bed, it wasn’t just the specialists that spoke of her future.

The enemy would creep in, prowling like a roaring lion, seeking to devour any peace or hope for the future I’d desperately been trying to cling to.

“Ten years from now…she’ll be graduating…to a wheelchair.”

“Ten years from now…she won’t even be able to say the words, ‘I do’, never mind think about marriage.”

“Ten years from now…you’ll long for the days you could hear her breathe by herself at night, all night.”

And my sleep deprived, under nourished, emotionally spent and spiritually tormented self…wrestled. I wrestled with what “they” said. The specialists, the family members, the friends and the enemy.

Until I finally started to hear what HE said.

Slowly, the words of my Father started to drown out, or at least dull the edges of, the many voices around me.

Romans 5:3-5

³ And not only that, but we also boast in our afflictions, because we know that affliction produces endurance, ⁴ endurance produces proven character, and proven character produces hope. ⁵ This hope will not disappoint us, because God’s love has been poured out in our hearts through the Holy Spirit who was given to us.

And slowly, there was a hard fought and heart felt hope in the love of a Father that knew what it was to watch their child suffer and still poured out His love in our hearts.

Romans 8:28

²⁸ And we know that for those who love God all things work together for good,^[a] for those who are called according to his purpose.

Slowly, there was certainty that a God who used the ultimate evil act, the murder of His Son, for the Salvation of all who would believe, could somehow use our hard thing for good too.

Jeremiah 29:11

¹¹ For I know the plans I have for you, declares the Lord, plans for peace and not for evil, to give you a future and a hope.

Slowly, I started to believe again that my Lord’s plans for me, and Baby Girl, were good, even if I couldn’t see how.

Today, Baby Girl turns 18. It’s been ten years. And, by the grace of God, nothing “they” said, none of the things “they” whispered to my tortured mind, have come to fruition. But everything HE said….did!

Baby Girl’s life isn’t what I had imagined for her. It isn’t always what I would choose. She struggles with the ordinary in a way that often breaks my heart. But she walks. She speaks. And she breathes on her own. More importantly, by the extravagant grace of her Heavenly Father, she does all of those to His glory.

But here’s the thing, I still find that when I’m struggling the most, the root problem is often the same. I am still listening to what “they” say, rather than what He says. The world has a way of lying so convincingly, so subtly, that I’m still often tempted to believe it. But I’m so incredibly grateful that I have a Savior that is absolutely committed to helping me hear HIM above the noise of my own fear and doubt.

John 10:27

²⁷ My sheep hear my voice, and I know them, and they follow me.

And He says, that Baby Girl is fearfully and wonderfully made and His plans for her are GOOD.