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.