This whole situation is alarmingly familiar. Most of the similarities I expected, those that come with the territory of hospital life. One, however, I may have conveniently forgotten. That's the silent pain.
Sure, we're seeing some real, not-so-silent pain and push-back from Willa. Behaviors that both break my heart and surprise me coming from my mellow little lady. And all to be expected considering what she is being forced to manage (at 3-years-old).
It's the silent pain I didn't expect. The same silent pain that came from those dark liquid eyes of semi-sedated-Willa in the NICU. The silent cries stifled by the intubation tube. The grimaces and clenched fists. The silent sound of pain that rang in my ears because it hurt my heart. Especially when you've never heard your baby cry yet.
I'm reminded of those unpleasant memories by current events. New silent pain. Silent pain I never imagined to see from my bubbly chatterbox. The silent pain where the spark leaves her eyes and her face becomes like stone. Lack of eye moment, spittle collecting at the corner of her mouth, no response to direct questions. Even summoning the image to describe it chokes me up. The expression is not quite blank as it is angry.
We're seeing less and less of this silent pain, possibly as she's becoming more outright resistant. I guess if I have to (or can) choose, I pick the latter. Be angry! With me, with the doctors, with the situation. You have every right to be angry, my brave girl. This was chosen for you, without your consent. Let me have your silent pain with knowing this was chosen for you. Because in a few years, I can only hope and pray it is a forgotten memory. For all of us.
When I was pregnant with Josie, what I wanted most was a healthy baby. Granted, every mother wants a healthy baby, but I can contest that I wanted it more. Not only did I want a healthy baby, but I wanted to experience everything that comes along with a healthy baby -- bringing it home, waking up at night, feeding and diapering... all those "normal" concepts of a new baby.
While we were fortunate to have everything (and more) for our impending addition, I couldn't help but feel unprepared. Instead of a conventional baby shower, a dear friend hosted a Blessingway for me and the baby. A Blessingway is a Native American ceremony meant to bless and honor an expecting mother and her unborn child. The ceremonial components and items vary, but at my Blessingway, the most important women in my life (friends and family) read blessings, created a necklace of meaningful beads, and shared food potluck-style. The final piece of the gathering was to link everyone's wrists with white yarn, which was sheared off and tied. The yarn was a reminder of our connections and blessings to the mother and baby, and the instructions were to wear it until hearing news of a successful delivery and healthy baby.
The Blessingway yarn was a powerful reminder of all the incredibly loving and important women helping me bring a healthy baby into the world through prayer and blessing. In a seemingly similar way, Matt and I stumbled upon our own Blessingway bracelets to face our current strife.
This explanation requires some backstory... Matt and I honeymooned for 10 blissful days on the southwest corner of Costa Rica, on the Osa Peninsula. Puerto Jimenez is a small, poor town home to a similarly small and intimate getaway called "Iguana Lodge." Over the course of the ten-day stay, we truly came to understand the meaning of what locals called "Pura Vida" -- or, "The Pure Life." Sufficed to say, I cried when the small prop plane took off from the dirt runway when it was time to return home.
A few months ago, very shortly after learning about Willa's impending stay and surgery at Shriners, I came across a company called Pura Vida, created to give full-time jobs to local Costa Rican artisans who make the woven bracelets. The company had grown (and continues to grow) to incorporate a variety of non-profits who receive $1 from every bracelet bought. While browsing the colorful bracelets, I happened to find one that supports the National Scoliosis Foundation. I immediately ordered a few, and Matt and I (and Willa's favorite honorary uncle) have had them on our wrists ever since.
According to the company's website, Pura Vida embodies the values of enjoying life, celebrating good fortune, and not taking anything for granted. It's about being free and living life to its fullest with no regrets. Wearing this bracelet reminds me of the fullness of life. It reminds me to enjoy every moment and be thankful for each day. It reminds me of my brave girl who loves life.
I sent a quick email to the company, thanking them and briefly describing Willa's story. In response, they offered to sell us more scoliosis bracelets for half the regular cost, while still donating $1 per bracelet to the foundation. Amazing stuff...
While it is impossible to literally connect ourselves with all the people supporting our family and our brave girl, not to mention all the second and third and fourth degrees of separation between Willa and her many prayers, the spiritual connection has been an invaluable source of emotional support for all of us. So we want to throw it out there to anyone that is interested in a bracelet. Ask and you shall receive.*
Apparently, Patience is a Virtue. "Patience" simply being the ability to wait without complaint. It seems to me that "Patience" is a lot like "Wisdom" -- it is something gained over time; through experience; with understanding.
I have come to understand just how much is truly out of our control. A person can plan and prepare and take action, but what do they really have control over? Themselves? Arguably not even that in its entirety. I think Patience and Wisdom come with letting go of the control, or perhaps the perception of control. Just being in a state of flow -- enjoying the moment, the day, the swift passage of time.
So the real question is: "Are you good at waiting?" And the real answer is: "Embrace it; you have no choice."
Our inept ability to control more than our next footfall has led us into a state of limbo. Earlier this week we prepared our family, our jobs, our household, and ourselves for Willa's halo surgery. That girl is a trooper -- getting up before pre-dawn to wash again with the antibacterial soap, accepting the answer "no" to food or drink, and heading anxiously to the unknown of the surgical floor at Shriners. But that cough, that lingering cough that comes every Halloween and sticks around until Time springs forward once more, that cough that caused her lungs to sound "too creaky" for the anesthesiologist to approve sedation for surgery.
"Is there ever a period of 2-3 weeks when she doesn't cough in the winter?" asks Dr. Josie (the anesthesiologist). Umm... no. D'Amato was there and pushed back a little on the definitive veto, but in the end he reminded us that we're not following a strict timeline (well he might not be). So home we go, by way of breakfast at Fat City and spoiling the Brave One with hot cocoa and chocolate chip pancakes (both with whip, of course).
The new plan is for Matt to stay home with the girls on lockdown. No one in, no one out (except me -- unfortunately also most likely the transporter of germs from all my lovely hugging students). Halo surgery is rescheduled for January 16th, next Thursday. In the meantime, the girls get some special time together and with their amazing dad. I cringe now, more than ever, every time I hear her cough and tell her "it's ok, it's ok." Because it is. Ok.
I love commercial advertisements for prescription medications. The people exude happiness, the scenery is picturesque, and the often-celebrity narrator has a soothing voice that makes your eyes glaze over. My favorite part is the monotone voiceover quickly listing possible side effects: digestive and intestinal problems, migraine headaches, skin rashes, shortness of breath, stroke, or death -
Wait, whaaaa? Stroke or DEATH?! You're telling me, Monotone Speaker, that this prescription medication for anxiety/asthma/blood pressure/arthritis (fill in the blank with any common reason for drug intervention) can cause me to die? The effect might be that my joints no longer ache and I can be like the people in the commercial--happily enjoying the beautiful scenery--but a side effect is death, so... I really won't be enjoying anything at that point.
These commercials always make me laugh, but in all seriousness the moral of the story is that the benefit of anything has to outweigh its cost. Conversely, the cost of remaining static has to outweigh the forward movement option. And the cost, or side effect, comes in all forms.
Our side effects have been picking up speed over the last few weeks. The more noticeable side effects have been Willa's new habit of chewing her nails and tendency to wake up upset at night, both increasing in intensity and frequency. There's the side effect of cringing at any in-coming call or waiting voicemail on my phone from 503-241... or 503-944... knowing quite well that it is someone at Shriners. The side effects of both avoiding social plans in lieu of staying home with our family and hesitating to make any plans farther out than a week out have become more manageable and given. Some side effects are so predictable, like tearing up every night after putting Willa to bed and every Sunday after communion, praying on our knees to God that He be with our little girl.
The holiday season has been a welcome distraction from reality. And yet, it has also magnified a more previously benign side effect in that nearly all communication either starts with, ends with, or completely revolves around our new normal. When your family's every being is going to be stripped to its core, so focused on making light of an extremely difficult situation faced by a child--who you love more than you ever thought possible--this side effect has proved to be the most difficult in the final daily countdown.
This will be the last post prior to Willa's halo surgery Monday morning. We will be spending this weekend as a family, enjoying each other together as normally and unregretably as humanely possible.
In hopes of keeping all our wonderfully supportive friends and family as up-to-date as possible, we will post at least daily updates via CaringBridge at http://www.caringbridge.org/visit/willasallee. I'll also continue to blog, as much as I can.
Thank you in advance (and retrospectively) for your support, prayers, kind words, silent hugs, and understanding. Here we go...
