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.

Crossing our "T's" and Dotting our "I's"

This week, reality set in. Undeniably it sets in every time we see a doctor or when we make plans for anything farther out than a few weeks, but this week, it set in often and it set in hard.

This week we finally reached the long-awaited appointment for a second opinion at the Seattle Children's Hospital in Bellevue by a leading pediatric orthopedic surgeon, Dr. Krengel. We've had this appointment scheduled since the beginning of Fall and realistically viewed the day-trip as more of a validation than a second opinion. And yet, the day arrived and we simply treated it as an opportunity to spend the day with our girl while Matt's sister and her family took over our youngest. Because right now we're making memories and treasuring every one.

We drove north enjoying the sounds of Christmas, and one of my favorites struck a new chord...

Have yourself a merry little Christmas
Let your heart be light
Next year all our troubles will be
Out of sight
Have yourself a merry little Christmas
Make the yule-tide gay
Next year all our troubles will be
Miles away
Once again as in olden days
Happy golden days of yore
Faithful friends who were dear to us
Will be near to us once more
Someday soon, we all will be together
If the Fates allow
Until then, we'll have to muddle through somehow
So have yourself a merry little Christmas now.

There has been a damper on this Christmas season, and I thought: That's exactly right, next year this whole ordeal will just be a memory. We just need to do this. And move on.

We found Dr. Krengel to be practical. He completely agreed with D'Amato's plan for surgery, often noting its necessity for Willa. And yet our "validation" became more of a "second opinion" as he discussed risks of the surgery--due to its affect on the spinal cord, as well as the proximity of a major artery at the top of the spine--and the residual effects that we may or may not have known previously and simply softened for our benefit, primarily in regards to her cervical mobility (or rather lack thereof).

The inside story of her head tilt.

I wonder if there will come a time when appointments like this will be less of a shell-shocked reality check and more like a step in the right direction. Because it's always hard to swallow, when a "best of the best" identifies the obvious severity of the situation... of your 3-year-old's LIFE.

So we head for home and randomly see a few rainbow splices in the sky, like we used to when Willa spent her days in the NICU. I finally finish the third installment of the "Divergent" series and am left with two final words: "Be Brave," consequently the phrase inscribed in the FreeJakes NIKE shoes Matt is wearing, designed by one of our recent inspirations and heroes. We return home, put the girls in bed, and Willa's admissions paperwork from Shriners is in the mailbox. Ugh.

And in related news this week, we got questions answered by some insiders: (1) a Child Life specialist (where Willa will spend her time at Shriners), (2) a mom referred by Shriners whose young son recently finished a 3-month halo stay at Shriners, and  (3) a mom I met upon happenstance whose daughter recently had spinal fusion surgery by D'Amato. We know more questions will be answered at Willa's pre-op appointment at Shriners on December 17th.

We also had Willa's last chiropractor appointment. Ever. Willa has been seeing her chiropractor bi-weekly for over three years. He is a family friend due to the fact that I was his son's nanny during my grad school years. He has repeatedly gone above and beyond to care for Willa, consult with her physicians, and seek further information about treatment options. Clearly he is personally involved. Which makes it difficult to say "goodbye" to his medical care.

In the meantime, we're trying to enjoy every minute. We're trying to be practical and preparing her in a way that is productive and positive. We're trying to understand how we're making the absolute right decision for her and yet affecting her life forever. And we're trying to make plans -- who will stay with her when, who will have Josie and go to work, who we will lean on and ask to fill in those holes.

The "Why?" question ebbs and flows. Such a lot for such a little girl. A few months ago I heard the biblical story of the blind man. The disciples ask what the blind man or his family did to deserve his handicap, and Jesus answers: "This happens so that the power of God could be seen in him." God chooses people to serve different purposes. Again, everything happens for a reason.

Thank you, Tomi. This is perfect.

I find myself getting caught up in my experience, in our experience in all this. But this isn't happening to me. This is happening in front of me. "Your children...come through you but not from you, and although they are with you they belong not to you" (Kahlil Gibran). Willa constantly amazes me, more so than kids regularly amaze their parents. She is SO accepting, without question. She is tolerant and cooperative. She lives in the moment, but plans for the future without concern. Yes, in many ways she is a typical kid. But a typical kid does not do these things with the knowledge that her neck is "getting fixed" and she'll have to stay in the hospital for a long time when that happens, among other things she has already experienced. How do you explain to your child that nothing is WRONG with her, but the doctor is going to make things better? I worry about answering that question. But for now, she hasn't asked, and she's in charge.

So this is about her, not us. And as far as she's concerned, we're completely fine with it.

The Good, The Bad, and... The Purple?

The last seven days have been... eventful.

A week ago today, Team Purple Shiners for Shriners had some serious representation at Cause + Event Portland. We were truly overwhelmed by the people supporting us in presence at the run/walk and in spirit by virtually running and/or donating through C+E -- 

Only about half our team at C+E

My parents happened to be in town and walked with Matt's parents as the "Grandmas and Grandpas." A cousin in Rolla, MO ran her first 5K and made a sign to virtually cheer for Willa. My sister and brother-in-law ran their first 5Ks, and Matt's sister and brother-in-law came out of a running sabbatical to join the event. Willa and Josie's sitter and her family joined, also as first-timers. There were people I worked with at an optometry office six years ago, people I worked with in Sherwood four years ago, and people I currently work with in Oregon City. Our forever-neighbors from the orange house (who have also moved on), including one who was on the team that cared for Willa in the NICU, ran with their two curly-heads in tow. The girls' Uncle Joe-Joe was there, and friends I played soccer with back in Illinois (now living in Portland) were there. Willa's BFF was there and ended up riding the 10K in the double jogger together (humph, heavy!)

Ready to roll!

And there is something about the running community that I'll never understand, but will always be happy to be part of. Van-mates from our HTC team "Race to Beer" were there. A friend of a friend I met and ran with a few times this summer was there. Another family of runners we know through Matt's sister was there, and their daughter ran her first 5K at C+E! A mother runner I met at Baby Boot Camp two years ago was there with a handful of her mother runner friends. I finally got to meet the race coordinator, that randomly went to middle school with my brother-in-law, and at each 10K switchback, I saw the mother runner I connected with a few weeks ago, the race director of the LadyBug Run for the CDH Foundation.

I have a hard time describing how much it meant to feel that support, knowing that they were there for us; for Willa. It was the first time Willa completed a kids run, and she ran her little heart out, despite being one of the slowest kiddos in the Tot Trot (previously her race-ending frustration). She held hands and ran with one of her little friends half the way, then sprinted her way in to the finish line, arms pumping. What a cool experience for her, to accomplish something she had been unsuccessful at a few times, but this time cheered on by a sea of people in purple all the way. It was the first time that Matt ran a 5K (which turned into an 8K), and it was the first time I've been at a running event where I've been cheered into the finish line by family and friends I love. To say that we left the event on a physical high is an understatement.

Friends stick together!

Go my purple girl!

 So that's The Purple (and good, but I'll get to The Good).

When we got back to the car afterwards, Matt and I both had voicemails from Seattle Children's Hospital. We're scheduled to see Dr. Krengel, chief of the spinal team there, on December 5th. The purpose for the appointment is a "second opinion," but I think what we're really looking for is validation. At any rate, the hospital called to say that they had a cancellation for Friday (Nov.22) and could get us in two weeks ahead of time. Reality check (that we chose to ignore)...

On Monday, I started a weeklong game of phone-tag with the Child Life center at Shriners, wanting to start crafting a plan to prepare Willa, and us, for her stay. So many questions and no answers (yet).

On Tuesday, Shriners scheduling called me at work. Willa is in the books for January 6th. That is the day she will get her halo and start her stay. The cervical surgery is tentatively scheduled for the end of February, depending on progress with the halo. This is really happening.

The rest of the week we spent updating our family, talking to our bosses, and mapping out a rough schedule for January and February. Who will be where, when? How will we comfort and support Willa, maintain a sense of normalcy for Josie, foster their close relationship, and still see one another? Fortunately there are so many people wanting to help, including our very understanding and compassionate bosses.

In treatment planning terms, everything is going as it should. She's had the tests and seen the experts, logistics are being worked out, and four months from now, our family should be home together. And yet it continues to be difficult to accept what our reality will be between now and then.

When Willa was born, she didn't come home until she was 5 weeks old. We didn't even know her then, but we spent everyday with her. We didn't have another daughter who follows around her big sister, mirroring her every move. This time is completely different. I can't help but think about all the mundane, everyday things that we will miss, but only because they just won't happen. Hearing Willa open her door and run into our room in the morning, listening to her narrate the imaginative play with Josie, watching her run into preschool alone with her big purple backpack (because she doesn't want me to walk her in anymore), altering the rearview mirror because she wants to see me in the car, giving in every time she wants to listen to "that guy singing" (from her purple birthday) or "Bob" [Marley] AGAIN if only to hear her sing (especially "Every little thing is gonna be already... Right, Mama?"), reading together after Josie goes to bed... It just. Won't. Happen. So that's The Bad.

Mid-way through this week I started to feel like C+E was a waste. A waste to feel such emotion only to get kicked down by reality. But then I realized that it was the best timing. It built us up so we could handle this week. It reminded us how many people love Willa and want to support our family. It materialized as a way to do something even when it feels like you can do nothing.

The Good. You can always find SOME good. There's a song that I think of often. I can't hardly listen to it anymore because it has been too overwhelmingly poignant since I heard it live back in May.

And you are the mother
The mother of your baby child
The one to whom you gave life

And you have your choices
And these are what make man great
His ladder to the stars

But you are not alone in this
And you are not alone in this
As brothers we will stand
And we'll hold your hand
Hold your hand

And I will tell the night
And whisper, "Lose your sight"
But I can't move the mountains for you

But we're not alone in this. Even if no one can move the mountains ahead of us, "every little thing gonna be alright." Thank you, Cause + Event (and everyone), for making that all too true.

Surprises & Assumptions

In exactly two weeks time, we have created a team of 50 Purple Shiners for Shriners. That team includes 13 family members, 27 friends, 5 co-workers, and 5 people we've never even met. That does not include all the kidlets associated with said runners that will be riding with runners or running themselves (or both). The majority of our team is going to be participating in the flesh, in Portland on Saturday, November 16th. The others will be representing in Rolla, MO (holla!); Minneapolis, MN; Medford, OR; Cinncinati, OH; and Houston, TX.

In addition to the $500+ raised for Shriners through the registration fees, family and friends have generously donated over $1100 directly to Shriners through Cause + Event. $1700 in two weeks. Got that? Because I am overwhelmed with gratitude.

As if it couldn't get any better than that, I've met some amazing mother runners with strange connections -- one, the creator and director of Cause + Event, grew up in Spokane with my brother-in-law, and turns out to be one awesome lady. Another, the creator of the Ladybug Run for CDH Awareness (see previous post) that saw my blog post on a another friend's page... Interestingly enough, her daughter is just five months younger than Willa, and her presenting problems at birth (due to CDH) were incredibly similar to Willa.

It really continues to amaze me, that thing called human compassion. Just when I start to think that the world is lacking, I'm so pointedly reminded.

Wonderful surprises and blatant assumptions sometimes go hand-in-hand. I forget that most people know only what we've shared, and that is vague at best. And yet, so much support and so much love.

A very wise friend quite recently and sincerely called me out on my vague-ness. Clearly Willa is needing treatment, but what does that exactly mean? Apparently I forget that people praying for Willa ARE on a "need-to-know basis." I forget that my daily life for the past 3 1/2 years has not been their daily life. I forget that even those closest to us want and need information that sometimes hurts our heart to relive long enough to share.

And that is the partial beauty of this blog, right? Because I can write and read and re-write what I want to say, then share it with whoever is interested, without personally sharing with every person that wants to know. Which sounds completely removed and impersonal (because it is), but right now, it is the best way.

Some things I assume are on a "need-to-know..." I assume people know that Willa has cervical scoliosis. I assume people know how rare that truly is. I assume people know that apparently the heart and the spine and the kidneys are simultaneously developed soon after cell division in a fetus, and often if there is an abnormality in one, there are abnormalities in the others. I assume people understand how ecstatic we were when Willa's pulmonary hypertension (caused by a heart abnormality) ceased and how devastated we were when we found out that the tightness in Willa's neck was actually caused by structural anomalies in her cervical spine.

I assume people know why we're raising money for Shriners because of what they have offered to us; to Willa. That even when her OHSU orthopedist told us that he would "monitor her" because he didn't know how to treat her, they gave us an option. Not only an option, but an option to improve her long-term qualify of life. However the decision has not been easy, considering that the surgical treatment will also create permanent physical restrictions for her. 

At this point, the plan is for Willa to be admitted to Shriners soon after the New Year, starting with a surgery that will implant eight screws into her skull, externally connecting a halo to her head. She will spend the next 6-8 weeks at Shriners as an in-patient, while weight is slowly added to the halo in order to bring her head and neck as straight as possible. At that point, the infamous D'Amato will take bone from her hip to replace the first five (of seven) vertebrae in her cervical spine. This will stabilize her head and neck at center, decreasing the chance of developing thorasic scoliosis and premature bone degeneration. Conversely, this will also restrict her head movement and flexibility to absorb shock. 

...

So we're hoping that this is one of the many procedures that is harder on us than it is on her. We're hoping that this happens early enough in her life that it will have the biggest impact, but early enough that she barely remembers. We're hoping that our attitude over the next few months directly impacts her attitude. Even though it's happening to her. Even though it will affect her entire life. Even though it will be her new normal. 

This same wise friend, upon gaining a better understanding of the treatment plan, encouraged me to seek support, but also to give myself permission to grieve. Because don't we all grieve when things don't go as we expected? and planned? and dreamed? Shame on me, as a mental health professional... I never thought of that. Or maybe I needed someone to give me permission. Maybe I've been grieving for her, but need to grieve for her mother too. 

You can't plan life. If anyone knows that, I feel like I do. But when you're open to experiencing what others are offering to give and live for those everyday moments of pure joy, it's pretty freaking awesome.