If she's still alive?!?!
My breath caught in my throat, and a knot formed in my stomach.
I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.
Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.
The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"
The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.
And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.
Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.
We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.
Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.
The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.
Do you know what that is, friends?
Freedom.
Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.
I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.
But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.
I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.
And that to me is FREEDOM.
The Spirit of the Sovereign Lord is on me,
because the Lord has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners,
to proclaim the year of the Lord’s favor
and the day of vengeance of our God,
to comfort all who mourn,
and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of his splendor.
--Isaiah 61:1-3
