We've been here before. Not the Pediatric ICU, because last time it was the Neonatal ICU, but indeed, we have been here before.
We've been in this limbo of watching and waiting. Of praying and trusting in the dual powers of God and modern day medicine to see our girl through.
We've been in the land of wires and tube and lines; going from somewhere to somewhere else; monitoring vital systems, removing waste, delivering medication and precious oxygen. A puzzling maze tethering the patient--in this case, our daughter--to the bed, beeping and sounding alarms, mapping a multitude of peaks and valleys on the monitor with a tendency to hypnotize any unsuspecting observer. Making it near impossible to provide any sense of physical comfort through human touch.
Almost exactly four years ago
We've been here before. Watching our sleeping girl. And while a sleeping child is truly the most beloved sight, a sedated-sleeping child is quite the opposite. The oddly-colored skin, swollen from surgical positioning and medications. The wincing and twitching. The moaning and whimpering. A sedated-sleeping child is not in dreamland; they are in a land of limbo. Just like the anxious observers (i.e. parents).
A little bigger this time
Except this time we know we get to keep her. We know that we will be taking her home. We know that they'll be time for us to sleep later, because right now she needs us next to her, humming and shushing and praying and singing her favorite lullabies: "You are my Sunshine," "Don't Worry About a Thing," "Jesus Loves Me." Her most frequent request is "Skeeters"-- the one most near and dear to my heart that my dad sang to me and his mom to him...
Skeeters are a hummin' on the honeysuckle vine
Sleep Kentucky Babe
Sandman is a comin' for this little babe of mine
Sleep Kentucky Babe
Silvery moon is shinin' in the heavens up above
Bob-o-link is pinyin' for his little lady love
You is mighty lucky, Babe of ole Kentucky
Close your eyes and sleep
Go to sleep, la la la la
Lay your little golden head, on your mama's breast
Oo Oo Oo oooooo
Oo Oo Oo oooooo
Close your eyes and sleep
Willa has heard that lullaby since her very first fighting day. My Grammy, who passed it down our family, died a week after Willa got her halo. Clearly she has been watching over Willa ever since.
As our "normal" gets ready to shift yet again, it has been a reflective, anxiety-ridden, emotional day. But as much as I might want to crawl into a hole and cry (or under my desk as a more viable option), I am completely unable to ignore the love going on all around us.
Today was Willa's "You Made it Through Halo Traction" (exact words on the trophy) party. And for lack of a better, more carefully scripted phrase, damn right. She owned halo traction. Actually I think she'll miss parts of being in halo traction! We are all going to miss Shriners. The people here are gifts. Beyond the nurses that blow bubbles, play hide-and-seek, plan parties, paint nails, make snow cones (and on and on and on), every single employee at Shriners has gone out of their way to support our family. I've talked to three administrative-level employees on the phone this week, and they all say how much they are going to miss Willa. And not only emotionally, but financially... Shriners is going to do something they have never done before to help our family. And it is still hard for us to believe.
Tomorrow my co-workers are all wearing their purple "Holcomb's Hero" shirts for Wonder Willa. There are people praying for her in Oregon, Illinois, Georgia, North Carolina, Virginia, Washington, California, Colorado, Minnesota, Ohio, and Michigan -- the Chief of the US Attorney's Office in Detroit has his prayer team on the ready (he has kept tabs on Willa ever since I met him last year). And almost 175 people are wearing scoliosis bracelets in honor of Willa.
We love the love. We are inspired and moved by all the love. People tell us they admire what we're doing, that we're the ones inspiring them with our courage and strength and love for our family. I don't know about that, but I do know that the love makes it easier for us. Easier to love each other and treasure the days and learn to lean on others. We have been so incredibly touched by how people have responded to our little family. It is indescribable to realize how our girl has affected such a spectrum of people. She is destined for great things. And those great things are already happening.
I know Willa and her surgeons will be surrounded by love tomorrow. That operating room will be bursting at the seams with love. Love makes all things possible. It makes the world go 'round. As Matt and Willa's favorite artist says: "Love the life you live. Live the life you love."
Last week I watched a movie that ended with the husband referring to his wife as a "professional juggler." And I thought, how apropos. All those balls up in the air while the juggler's smile never falters.
These days, weekdays in particular are a regular juggling act, especially those following the nights Matt and I tag out at the hospital. Alarm goes off, I get ready and quietly leave while Willa is still alseep; meet Matt and Josie in the parking garage by 6:40, rush to drop Jo at Miss Tina's in hopes to be at work by 7:30; put on a smile at work and hope to squeeze in a run before picking up Josie; rush back to the hospital, eat dinner together, bathe the girls, take Josie home in time for bed; wash and fold laundry to pack Willa more clothes, re-pack work/lunch/running bags, pack Josie's pajamas and bottles, possibly pack overnight bag (depending on the night); attend to Finley, take a shower, fall into bed, and attempt to get some sleep before it starts all over again.
All those pieces, all those balls in the air. One drops and the others seem to follow. Or I trip and stumble, dropping a few, before quickly picking them up in a panic before the others have a chance to falter. They all affect the others. And it is such a delicate balance.
Some days are worse than others. Like when I don't even have time to take my coat off at work and don't realize it until I'm ready to leave. When Jo and I finally get to the hospital and Willa is not happy to see us. When I forget to bring Josie's bedtime bottle and end up re-washing the one she drank in the car that morning, getting milk from the cafeteria. When I get to stay with Willa and she is tired and fed up and throwing one fit after another. When I spend the first night home after being at the hospital all weekend and Jo inevitably wants to hang out at 3am. When I realize that I talk to my husband more in text and email than face-to-face.
But the moment of control before throwing each ball back in the air is fleeting. You give it your best shot and hope for the best. And unlike real juggling (which I've never been very successful at), this kind of juggling is far from a solo act. My husband is truly amazing. We have always referred to ourselves and our family as a team, and we're seeing the reality of what that means. When people ask how we're dividing and conquering, I tell them that it's like we have shared custody but never of both at the same time. It is... strange. But instead of tearing us apart, it is teaching us how to trust in and rely on each other as never before (and hopefully never again).
And it really is amazing what everyone in our lives have done and are doing to help us. Seemingly insignificant offerings that make all the difference: stopping at our house to throw the rope for Finley, coming over after Jo is in bed so I can go to a meeting, tag-teaming the girls to allow Matt and I to spend more than 10 minutes together. It's not the things, it's the people. All the wonderful people in our lives helping to keep the balls in the air.
In the past 20 days, I have learned more about gratitude than I have in my 30+ years of life. Because it turns out that eventually your walls are either broken down or just plain crumble, and you have no other choice but to depend on other people to hold you up.
Today I prematurely left a Crisis Response Team training that I was required to attend for work. I sat through the presentation thinking that maybe I could benefit from some crisis intervention. Maybe some crises aren't always something that happened, but rather something that is happening. Something that permeates every minute of your every day. Something that you dream about at night and wake up wondering, wishing that it was just a bad dream. I had to leave that training when I realized that I've spent the last 20 days in crisis mode. My family, has been in crisis mode. Because what is "crisis" except a total, involuntary sacrifice of control.
And yet, while every single day may seem like an entire year, we are lifted up again and again, by each other first and foremost, and then by people in our lives that touch us in often the most unpredictable, yet completely appropriate and necessary ways...
- Nurses that give Willa "jobs" and let her paint their nails.
- Doctors that tell us we are doing a good job.
- Friends that force sustenance and relaxation and laughs.
- Parents who are available for anything and everything.
- Bosses that flex our time and support our family.
- Daily snacks left on my desk at work.
- Siblings that send funny cards and texts and share the burden of pain.
- Work colleagues that don't accept no to a hug, and then let me cry into their hair.
- A fourth grade class that made the most touching cards for me AND "Wonder Willa."
- Blasts from our pasts that wear Willa bracelets with pride and pray for her everyday.
- The maintenance man at my work that lectures me daily about telling him what we need.
- MealTrain participants that bring not only meals, but treats for Finley (our afterthought).
- Church family and far-away friends that check in... and in and in until we check back.
- A purple princess halo sister that makes Willa just feel normal.
I could go on. And it truly is the little things. The things that tell you people love you and are thinking of you every day, not just 20 days ago when this family crisis began or 24 days from now when it begins again. The things that cost the least. The things that you can say "thank you" for, but there really are no words to tell someone how they lifted you up at the most opportune time.
There will never be the right words. Because when Matt is with Willa and I'm with Jo, or Matt and Jo are home while I'm at the hospital with Willa, or when our parents split care for the girls so Matt and I can have more than 10 minutes a day to catch up... Our family is not whole. And we have gotten pretty damn good at making it seem like it's all good. And as far as our girls know, it IS all good. But we can't wait to be whole again. And in the meantime we're learning to accept help and support and love from all sorts of people we are blessed to know.
