Gracie Ann (Part 3 of 3)

As the story continues, Gracie Ann and Kerry are brought back to life after nine minutes of oxygen deprivation. Once the emergency is past, they settle in for a lengthy hospital stay.

Jeremy remains at Kerry’s bedside for 76 days. And over her lifetime, Gracie Ann is diagnosed with Lennox Gastaut Syndrome, basal ganglial bleed, intractable epilepsy, quadriplegic cerebral palsy, and ideopathic thrombocytopenic purpura.

But for her adoring family, Gracie Ann’s real diagnosis is incurable cuteness.

As Kerry describes in her blog:
She is our little baby bunny….she is sweet and holds all of our hearts in her tiny little hands. She is an angel from Heaven and is truly Grace Personified. She reflects our Lord’s Perfect Love to everyone who looks upon her and brings powerful healing to the hearts of those who hold her. She is our little miracle baby and we love her so much….also, she has the cutest baby sneeze ever.”

Even in her NICU bassinet, Gracie Ann must be the best dressed person in the hospital.
Mom and Baby bonding during feeding. I love how into each other these ladies are. Kerry spends 76 days in the hospital, and Gracie Ann, even longer, before the family is reunited. Image courtesy of Kerry Ann Lustig.

The story of little Gracie Ann is long, wide, and deep. No Cliff notes can bring home this family’s depth of feeling, strength of faith, and their hope, brought forth by, “love as strong as death.” (Song of Solomon 8:6) Between Kelley’s retelling, and Kerry’s blog, I marvel at the family’s commitment to do everything for the greater glory of God. When they have every earthly right to complain about the injustice of their lot, instead, they praise and thank God, and they talk to Jesus day and night. Greater trust, and thankfulness, arise from their hearts, showing up in actions small and large. This scripture seems to me to be written about the Lustig family:

“Do all things without grumbling or disputing; so that you will prove yourselves to be blameless and innocent, children of God above reproach in the midst of a crooked and perverse generation, among whom you appear as lights in the world, holding fast the word of life.” (Phillipians 2: 14-16a)

If you peruse Kerry’s blog, you’ll see many examples of simple yet extraordinary faith. It’s humbling to write this, because the comparison game can have us all feel like we’re failing, when Jesus is our success. Trials come to all of us, and we choose how to respond. Do our trials make us more self-focused, or do they make us malleable, and willing to be formed and carried by Jesus?

The rest of Gracie Ann’s earthly life is overflowing with loving and open arms, cuddles, routine care, occasional emergency care, outings, Mass, extended family and friends who pray, and a community touched by her sweetness far beyond the four walls of home.

Kerry’s sister, Kelley, in sharing about Gracie Ann’s final days, recounted the little one’s surprisingly bright alertness. Following the Anointing of the Sick — requested because of prolonged congestion and breathing difficulties from the winter cold and flu season — Gracie, who is normally sleepy from medication, is bright-eyed with wonder, seemingly taking in every visual detail of her life, and also of her loved ones. Seriously, could these precious eyes be any bigger?

What a cutie. I could get lost in her eyes, and her little chin dimple has my heart aflutter

Friday that week, on February 9, 2018, Gracie Ann awakens in a seizure state with a very high temperature, which is a common experience for her short lifetime. Mom gives her a cool bath, yet Gracie’s shallow breathing and listless condition is concerning enough to make the 9-1-1 call. Kerry fervently prays while the EMT attempts to start an IV, although hampered by tiny veins.

Jeremy accompanies Gracie in the ambulance to the hospital. Three hours later, despite every effort to fill her lungs with breath, the littlest angel is welcomed into Jesus’ embrace.

Unable to tell the whole story in a smattering of blog posts, in the gap, may the Holy Spirit to fill your hearts with knowledge of the nuances, the unexpressed emotions, the works of faith underway in Kerry and Jeremy, and their sweet family. I pray that this abbreviated telling aids us in living with hope in uncertainty, and encourages our faith in God’s generosity, which often comes disguised as trial and difficulty. A letter to Gracie Ann from her parents:

This is an image of a letter written to Gracie Ann from her parents.

I will finish this installment on Kerry’s birthday, one day before Gracie Ann would be turning three years old. Initially, I wanted to tell the story of the fresh flower rosary, and how pretty it turned out, and how much it meant to Gracie Ann’s family. But the more beautiful story is the one of heavenly perfection gained through frailty. In her own fragile health, Kerry witnessed the spiritual growth of her family as each one came to a richer understanding of the generous love of God poured out to all of them.

Still, here are images of Gracie Ann’s rosary, so you can see how it came together. Here’s the rosary before shipping:

And here it is upon arrival, a little squished — So I learned to staple the corrugated ring, and stuff the corners of the box with bubble wrap, and add “This Side Up” stickers, and problem solved!

The rosary arrived on Thursday, was placed in the box in the refrigerator, then displayed at the church on Friday, February 16, for Gracie’s Mass of Christian Burial, which was attended by over 1,200 people.

Here it is on Kerry and Jeremy’s table, Saturday, the 17th.

Kelly said the roses kept getting more beautiful as they opened. They reminded her of St. Juan Diego’s tilma, and the Castilan roses given by Our Blessed Mother.

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