A Juggling Act

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 Gratitude

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.

Thank you. Truly.

<3 4A

Silent Pain

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.

Blessingway, Another Way

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.*

Pura Vida :)

Practicing "Patience"

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.

Side Effects

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...

It Takes a Village

People say: "It takes a village to raise a child." I agree; it does. But I believe there's a trump card that reads something like: "It takes a village to raise a family." Because when you are raising a child, aren't you also raising a family?

Often good things happen at the best times. An anonymous special delivery on your doorstep, a friend that stays after hours to help with a special project, near strangers going out of their way to fulfill a need. The materialism of these gifts are appreciated, yes, but the faith others share is that village raising a family. Sometimes raising a family simply means sharing their burdens and meeting them where they are, while bringing joy and hope when they are lacking.
.............................................

Yesterday was Willa's pre-op appointment at Shriners. We met everyone and saw everything that will be "home" for half our family during the next few months. D'Amato answered questions and enlightened us to details of the plan that were apparently on a need-to-know basis (because we need to know them NOW), like being in a supported halo for a few months after her cervical surgery at the end of February (?!!!). We conferenced with an anesthesiologist that left any semblance of humor at the door. Willa was assessed by an occupational therapist and two physical therapists for present levels of mobility and strength. A few others were there to answer any further questions we had, but don't try and fool me, Lady-trying-to-hide-your-nametag, I know what MSW means. And yet, who am I to judge and go on the defense when a social worker is trying to help MY family?

On the upside, Shriners packs a mean coffee/juice/snack cart in the hallways. Santa came bearing gifts and stayed for a long visit in between specialists. We had lunch in the "hospital restaurant" (per Willa... i.e. cafeteria) with dizzying views of Portland. Finally we saw the in-patient floor where Willa played, met the resident teacher, climbed over furniture in the "movie theater," and talked with a preteen in halo traction whose smile was a mile wide.

So this is happening. This is really happening. It's for real now. It's so real that we know Josie and Finley will stay at Matt's parents Sunday night (and the next day), because we have to wash Willa with antimicrobial soap and have her checked in at 6:00am Monday, January 6. We have our list of what to bring, our schedule of who is where during the month of January, and plans to chop Willa's long goldi-locks before her angel halo becomes a semi-permanent accessory. The sitter and preschool both know that tomorrow will be the last day they see Willa for a long time...

This family needs raising up. Raising up doesn't mean pity, sympathy, or overly optimistic sentiments. It means sharing our burden, making us laugh, and loving us. The power of prayer has been in our corner for the past few years, and we're depending on it again. So send some of that good stuff up for us too.