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.