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.

Cause + Event with us!

We have had many many people ask us how they can help. Being only so familiar with the desire to do something when there is nothing to be done, we take these offers to heart. We hope that our gratefulness of prayers for Willa and our family are never minimized, because that is truly what we appreciate the most, but something more concrete is wanted by all of us. As we know more about what Willa's stay at Shriners will look like, we'll know more of what we'll need, but until then we hope you're available to help us with an event on Saturday, November 16th...

 



Cause + Event Portland is a fairly new running event that allows participants to CHOOSE the non-profit receiving at least half of the already-affordable $20 race fee (the remaining $10 is dependent on sponsorship). A few months ago I learned about this awesome event through another awesome event that was raising money for the CDH (congenital diaphramatic hernia) Foundation. I've become a big fan of only participating in running events that actually raise money for something. Bonus if I have a connection and/or know the organizing family. I'm sorry, but $40 for a bib chip and lame shirt? No thanks.

Back when I ran the LadyBug Run for CDH Awareness this summer, we thought Willa would be in the midst of her stay at Shriners when Cause + Event was scheduled to happen. I knew that myself in particular would need something constructive during that time. Something that would make me feel like I was doing something to help. Something I could do to honor my brave girl.

Enter the idea of hosting a team to benefit Shriners. And why not? I know plenty of people that like to run, plenty of people that like to walk, and plenty of people I could guilt into doing this for Willa. :) Now even better, Willa will get to participate too! She can ride in the jogger with Jo and run in the Kids Fun Run or Tot Trot.

So calling everyone that runs, walks, or cheers! PLEASE join our team of "Purple Shiners for Shriners" and be a sea of purple that envelopes our family with support. If you can't be there in person, Cause + Event offers a virtual option... they even send you a race bib and request that you take your picture running a "race" of any distance sometime between November 16 and December 1. Not a runner and still want to show your support? You can also donate directly to the cause via the race OR volunteer on race day.

As I see it, you now have three options:
1. Register to run or walk (5K or 10K) with us by clicking HERE.
2. Register to virtually participate by clicking HERE.
3. Donate to Shriners via Cause + Event by clicking HERE, or donate directly to the Shriners Hospital for Children by clicking HERE.

Thank you, thank you, thank you in advance.

Paying it Back... and Foward

In the literal sense, we've been "paying" ever since Willa was born (thank God for insurance!). Someday we'll be done paying bills to OHSU in Willa's name, but we'll never be done paying them back, in the figurative sense, and paying it forward in any way possible.

Yesterday the girls and I visited the NICU (DNCC), and it had been long overdue. We have created a norm to bring goodies at Christmas and needed items on Willa's birthdays every year since her discharge. Time keeps speeding up, and the swing we purchased after Willa's 3rd birthday in March (with the help of some friends' contributions) has been collecting dust in the corner of our bedroom. Not anymore...

Special delivery!

Every time we visit is similar. This time we run into one of Willa's secondary nurses getting into the elevator as we are getting out, the intake receptionist that remembers our last name, and another secondary that knows Willa with a glance.

On Willa's 1st birthday, we were so thankful to collect a variety of things needed by the nurses and PTs working with the fragile babies there...

Willa with two of the best docs in the world

March of Dimes was a big presence for us while Willa was in the NICU. They are most known for their work with preemies, but they really do amazing work for ALL babies! We've been incredibly fortunate to raise a few thousand dollars over the past few years in celebration of March for Babies (THANK YOU everyone that has donated in honor of Willa!). We've run into NICU nurses and our amazing L&D delivery nurse over the past few years, and that just feels right.

Willa's first year was exhausting...

2nd year w/ baby sis in tow

A family affair

This year we're planning a way to give back to Shriners. We have another set of simply wonderful people to pay back and pay forward. Stayed tuned for a blog post on how to help. We're soliciting all sorts of support.

Paying back and paying forward feels only more right as Willa gets older and understands more and more about where she came from and how she got here. That's important for any kid, but more so when the story is unique and, for lack of a better term, a God-given miracle. I always want Willa to know that she has been touched by so many people in so many ways. I want her to know that she is LOVED.

Our "Save the Date"

This wait was shorter than most. Thanks, in part, to D'Amato's care coordinator at Shriners. And perhaps the daily voicemails I left her.

Coincidentally, Beth knew of Willa before we knew of her. She happened to see photos of Willa's purple birthday party on the Facebook page of a friend she went to school with and lived with at one time. This friend happens to be the mom of one of Willa's little friends. They happen to be our ex-neighbors from the orange house. We happened to have met this neighbor after her little lady was born, a few months before Willa was due. Upon learning that she was a nurse practitioner in the NICU at OHSU, we didn't expect to literally lean on her and love her as we did (and do) during Willa's first 5 weeks of life. Coincidence after coincidence...

Besides becoming "pro-waiters" over the past few years, we've also learned how to push. We've learned how to be the parents that doctors want for their patients, but we've also learned how to form relationships with the doctors caring for our kid. Turns out that people will go out of their way to help someone they feel a connection with. I'm no stranger to that phenomenon.

The Child Life at Shriners (where Willa will spend 6-8 weeks preparing for surgery) can take Willa as soon as early December. Meaning that she would be there for Christmas. Which would be FAR less then ideal.

Ask, and you shall receive; seek, and you will find; knock, and the door will be opened to you. (Matthew 7:7)

So I do... Can we wait until after the holidays? Can we plan for her to be home before her birthday? Can we wait long enough to seek the second (or third? fourth?) opinion from the pediatric orthopedist at Seattle Children's in December (next available?!)??

"Yes, of course," she says, "that would completely reasonable," she says. Ask, and you shall receive. You'll receive a yes or no, but we receive both a "yes" and a date. Our date is early January -- early January to start the 6-8 week stay at Shriners preparing for surgery, then hopefully home before Willa's 4th birthday on March 11th.

She's planning a pink party this year. ;) Whatever you want, Brave Girl.

The Waiting Game

We're getting really good at waiting. We've had a lot of practice in the last five years... waiting to get pregnant, waiting to have the baby, waiting to bring her home, waiting to hold her / change her / feed her / bathe her, waiting for her to grow, waiting for her heart to change... waiting to see specialists, waiting for the receptionist to call her name, waiting for the doctor to come in. And now waiting for a timeline, a plan, the date.

Today we saw D'Amato at Shriners for the third time since June 18th. Every time we see him, I like him more. Today he walks in with a smile and recounts the neurosurgeon's take on the cleft in Willa's spine. He tells us we're ready to move forward. We're ready to plan for the lengthy stay at Shriners preparing for surgery, as well as the surgery itself.

And yet, we're waiting again. We're waiting to know WHEN that will be. When can we start planning and preparing and -- for lack of looking down instead of up -- dreading? We wait to find out when the schedules for our two newest VIP's can coordinate: D'Amato and Dr. Baird, the neurosurgeon we saw at OHSU. Baird will be supporting D'Amato and monitoring Willa's brain activity during surgery. I feel really good about these two people. They're known for being the best, but almost more importantly, I just feel really good about them. I trust them. With all the waiting we've done over the past five years, knowing that there is SO much out of our control (those things that we want to control the most, that we're grasping to control), we've learned the strength of trust. Because what else is there when you're literally trusting another person with the life of your little life?

I've always believed that everything happens for a reason. Something happens, causing something else to happen, causing something else to happen, and so on, until you realize how thankful you are that the first thing happened. Maybe this is a coping mechanism to make light of not-so-great happenings, but regardless, it's a retrospective way of making sense of your world. It also explains the phenomenon of coincidence. Coincidentally, coincidences seem to be commonplace if you open your eyes and your heart. Someone is listening. And responding.

Yesterday morning, the day I spent in nauseating anxiety about today's appointment, this was the daily devotion offered on my app:

This is my command - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. (Joshua 1:9)

May we be strong and courageous. Not for ourselves, but for our girls. Both of them. Because that's what being a parent is, right? Making the world a better place for your kids. Even if you're pretending to make light of a dark experience. Pretend away. Because their joy in life is contagious.