The Night When Christmas Came Early (16)

“It is easy to…wring our hands and bemoan all of the bad things that happen in this world. It is much harder to…pick up the shovel and go to work. It is my experience that miracles are real and living things. They are built with sweat and toil and hard work from the foundation up under the eye of a watchful and loving God. Miracles, great and small, take fashion from unselfish action [and] love[.] [E]ven tears [are] mix[ed] into the permanent mortar of miracles.”  -Henri Landwirth, Gift of Life

I don’t know about you, but I love classic, simple-to-follow recipes, and this is one I can wrap my OSHA-issued, netted, kitchen hair cap around:

Unselfish Action + Love + Tears = Miracle Mortar.

Eight hours into The Wish Day That Epilepsy Stole, God had provided a miracle that we couldn’t orchestrate on our own (barring a propofol injection), and we were now on the other side of the miracle nap Mercy had so desperately needed. But Mercy was still enduring clustering seizure activity, and we were working through her sadness.

Enter the Unselfish Actions + Love of others for suffering children to mix into her tears.

Dan and I talked quietly and came up with a distraction plan as an attempt to get Mercy some emotional rest. He made some phone calls and nailed down a schedule. I went to work on Mercy. “Ok, get up, M Honey. What do you say you and I go find that spa and have your nails done, while Daddy waits for your brother to wake?” I softly suggested, in between her continuing petite mals, while gently washing her face. After repeating the suggestion several times until she “got” it, Mercy agreed with a slow smile. As I settled Mercy into a rocking chair on the patio of our Villa to wait for a trolley (she was too unsteady on her feet to walk into the center of the Village), Dan stuffed her rescue meds into my cross-body bag and handing me my charged phone whispered, “Call me if…”. I mentally relaxed again into the comfort that he was here with us for this NCSE day, enabling us to try this plan.

The trolley approached and a kind-hearted man stepped out of the driver’s seat to come around and open the door for us. As they’re trained to do, this Village Angel began friendly conversation with our Wish Child, while I led her toward a seat. Mercy did not respond because she couldn’t mentally process the driver’s questions between her petite mal seizures. I answered for her and explained that she was seizing. The Angel paused for a second to consider this, because unless you are trained to carefully observe Mercy’s eyebrows twitching and the “consciousness” in her eyes flicker “off and on”, it’s hard to tell that an otherwise healthy-looking child is fighting a war against electrically misfiring neurons. To unknowing people, it just looked like Mercy was being rude and ignoring them. Absorbing and rolling with the medical info I’d shared, the driver hopped into his seat and adjusted his tact: beginning a steady stream of happy stories which required no response from Mercy. Then, dropping us off as close as he could to the (then) La-Di-Da Pony Spa, offering to order us a golf cart, and helping us out of the trolley, the driver left to pick up more Wish children and their families. A dash of unselfish volunteer action had been mixed with our tears…the beginning of a recipe for a sweet, sugar-cookie-style miracle ending to the day epilepsy had stolen.

One of the Trolleys at GKTW Village

When we entered, Mercy was the only customer at the spa. Perfect. Sensory processing becomes a hundred times more difficult when one’s brain is misfiring. A loud spa would have meant another loss for Mercy. We would have had to leave had it been filled with chatty, giggling girls. It was another perfectly-timed miracle: a teaspoon of vanilla-bean love from God.

“Just sign in there, Sweetheart, and we can get started on your nails!” enthused happy, acting + loving volunteer Angel number two.

Mercy, smiling and understanding, lifted the pen and tried to write her name. She sloppily scrawled out two humps…something looking kind of like a kindergartner’s first shot at a free-handed “M”.

“That’s not right”, Mercy huffed, frustrated, as she scratched it out with black ink. Trying again, her scribbled “M” looked more like a sad wavy line than the two connected bumps she’d made before. My heart dropped. She wasn’t pulling out the way we’d hoped. The confused volunteer Angel looked on.

“She’s seizing”, I explained.

Hearing me this time, Mercy began a familiar argument, indignant, “No, I’m not, Mommy!” Experience had taught me it was pointless to try to convince her.

“Ok, M. Why don’t you just let me sign you in this time, and you can sit in the big swivel chair?” Mercy accepted this and the volunteer Angel set about the hard work of communicating with a child who’d like her nails done, but can’t process a fluid conversation. Through stops and starts, Mercy ordered up a polish color she liked, and the Angel continued to ask and repeat questions about what Mercy had enjoyed best about her vacation. Feeling there was no pressure to perform with this patient Angel, Mercy answered only when she was able, settling back into the chair, relaxing. And just like that, eggs and milk had been lovingly creamed by this volunteer into our tear-filled batter. Half an hour later, the Angel convinced Mercy to try eye shadow and glitter on her face too, and finally…finally…finally the rescue meds started to have visible effects. Mercy was smiling, laughing and consistently lucid for 5-7 minutes at a time!

Village Makeover
Mercy has her nails done at the GKTW Village spa, as she’s pulling out of a day spent seizing.

I texted Dan about her progress. He texted back that PJ was awake and ready to move. Pre-dinner ice cream and a check of the gift shop were in order! Acting + loving volunteer Angels 3 through 10 manned the locations we’d visit next in the Village…beating in, with their service, creamy smooth butter over the cracked ripples of our day. Mercy’s health only improved after the snack and, in the jubilant presence of her hysterical toddler-brother (who now well-rested, had already forgotten how scary his sister had seemed earlier). Together, the kids entertained with hysterical selfies. Then, we all laughed until we cried while putt-putt golfing on the Village’s interactive dinosaur course. One train ride and magical flying machine ride later, we chuckled our way into the Gingerbread House. Confronted there with adorned pine trees, we realized what we’d forgotten with the morning’s trauma: Today. Was. GKTW Village’s. Christmas!

 

Whoo hoo!!!! We piled our plates high with the first full meal any of us had really felt up to stomaching all day: Turkey and gravy, stuffing and corn, biscuits and butter, carrots and green beans, pie and cranberry sauce! A holiday feast! No cooking and no clean-up for us because a kitchen army of selfless volunteers shouldered that load…cups of floury, powdery unselfish actions folded into our growing miracle batter. Our only job was to celebrate that our child, lost to us that morning, returned with every minute as our delectable miracle evening dough continued to take shape!

Heading out of the cafeteria stuffed to the gills, we saw a choir from the local high school had gathered on the Avenue of Angels, decked out in red and green. Chorale members were beckoning to children to sing Christmas carols with them. Hello, miracle icing-mortar mixers! Singing was Mercy’s favorite! I sat down on a bench and closed my eyes as happy tears leaked out, while festive music washed over the square. Opening my eyes again, there was my beautiful girl who’d navigated a vaporish hell that morning, standing under Christmas lights, singing her heart out next to another Wish Child in a Cinderella dress, who was busting out the lyrics with equal enthusiasm despite -or more likely because of- her obvious Down Syndrome status. Later, the Wish children and all of their siblings lined up to meet Santa and receive Christmas gifts. Sweet powdered sugar sifted into miracle icing, creamily smoothing with each volunteer who poured care into our family.

When those holiday adventures had sung their final refrains, we went to make an important video. Every Wish Family is given an opportunity, toward the end of their stay at GKTW Village, to make a family video describing their week. The video is archived for the family to relive precious memories with children who may not ever return. In all honesty, while the Memory Video is probably one of the most inspired ideas in the Village, it also made my stomach lurch because of the NCSE morning Mercy had endured. The realness of what we stood to lose to epilepsy was too near. Nonetheless, we did it: one amped-up son in crazy-mode from fatigue, one daughter amped up on rescue medications, and two parents who were in desperate need of rolling gurneys equipped with IV’s full of espresso shots. It’s some video. And, it’s our memory memento of a Wish Trip completed. Thank you acting + loving videographer staff members for adding the brilliant holiday coloring of that crazy experience to our miracle icing.

But, there was one more finishing touch to add to The Night When Christmas Came ‘Early’ (and yet, right on time). Pushing open the exit door from the Memory Market, we intended to move our weary tribe toward bedtime routine for our last night in Villa 118. Suddenly, Mercy stopped short, lifting her arms toward the sky. Her face lit up and she began screaming and jumping: It. Was. Snowing! Sky-born sprinkles to adorn our baked, risen and iced miracle-Christmas-cookie style night. Sugar plum fairies danced with gingerbread men in the center of the square, and we joined in. Everything aglow in sparkles, Floridian “snow”, and love.

I really enjoy the song “Ordinary Miracle” by Sarah McLachlin. The ironic wording chokes me up every time because, of course, there is nothing ordinary about a miracle. Our hackneyed definition of a miracle is something that is EXTRA-ordinary. And yet, McLachlin is right: some of life’s most extraordinary events are actually the ones that happen every day, but that we never take the time to acknowledge as miracles.

“It’s not that unusual
When everything is beautiful
It’s just another ordinary miracle today

The sky knows when it’s time to snow
Don’t need to teach a seed to grow
It’s just another ordinary miracle today

Birds in winter have their fling
They always make it home in spring
It’s just another ordinary miracle today

It seems so exceptional
That things just work out after all
It’s just another ordinary miracle today”

McLachlan’s lyrics highlight the things which make God, well, GOD. Humans don’t orchestrate weather patterns, though we attempt to predict them. There’s no work we invest in teaching birds to migrate. There’s often not a whole lot we can do to make bad things “work out after all”. The ability to take evil occurrences and weave them into something which works ultimate, eternal good is an attribute which only the sovereign God can claim on His curriculum vitae.

However, Landwirth’s recipe is also correct: Unselfish Action + Love + Tears = Miracle Mortar. Certainly, God doesn’t need us to work miracles. He controls “just another ordinary” one, all by Himself, every moment of every day. But, there are some miracles God has graciously invited His people to roll up their sleeves and participate in. Take salvation of a soul, for instance. Every soul converted: His miracle. Yet, although salvation is ultimately 100% His free gift, God uses the means of people actively sharing the gospel to accomplish it. Or, consider the parting of the Red Sea. Could God have done it without Moses lifting his staff over the water? Of course. Yet the fact remains that God told Moses to do some (seemingly small) work.

Our final night at Give Kids the World Village was blessed with miracles like that. God did some miracles that day which no human in the Village helped orchestrate. None of the volunteer Angels that night knew what Mercy had endured, for instance. They hadn’t timed their service schedules to coincide with her traumatic experience, nor did they single her out for blessing because of it. But, God knew the timing. The volunteers had simply answered His call to serve, rolled up their sleeves, and did some work to bake little miracle moments from God into the lives of suffering children and their families that night. We simply benefited from their selfless service and love.

Because of their actions, God rolled and cut out the most delicious, crispy, melt-in-our-mouths ending to a day begun with NCSE that Mercy had ever experienced, and maybe ever will experience. It was no ordinary miracle. It was one God had chosen to implement Himself and cement together using His Miracle Mortar recipe.

We’re forever grateful.

“I sometimes wonder,” wrote Heni Landwirth, founder of GKTW Village, “why God has chosen us to do these things and not someone else. But then I look around and I see a whole world needing a helping hand out there. Caring is one emotion there can never be too much of, and as God will tell all who are willing to open their hearts and listen, there is enough work for each and every one of us.”

Last Day Selfie
Family Selfie on our Last Night at GKTW Village

 

 

 

 

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