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.