This is the Day.

It's 3:15am. I've been laying awake in bed since my littlest lady woke up to use the bathroom over an hour ago. She's asleep. I'm not. The story of being a parent.

I'm laying in bed and sleep evades me... Consumed by thoughts of a sleepless night one year ago when we again entrusted only the best medical professionals with our 3-year-old warrior. For almost eight hours that next day, February 27th, we waited in patient hope and constant prayer that her small, intricate, highly abnormal cervical anatomy would allow the amazing Dr. D to fuse her skull to C-5, while the peds neuro monitored the safety of her delicate spinal cord. God willing, the surgery went off without a hitch.

But my baby. My first and most special baby. The sight of her in the post-op room could only bring flash blacks of nearly five years ago now when I saw her for the first time in the NICU. Wires and tubes everywhere, obscuring her face and covering her limbs. Except this time the halo. And rods. And vest. I fight rivers of tears every time I conjure this first look at her. I don't let myself think of it often.

And then not only did she go home less than a week later and walked unassisted the next day, after the PT told us she would never walk in halo alone, but she turned four in that halo. And went back to school in that halo. And impaled her hand with that halo. And slept in that halo. And had multiple x-rays and scans after falls in that halo. And had her hair washed in the sink with that halo. And then even after that she wasn't free to just be. That awful SOMI brace. We got so tired of telling her to "slow down" and "no running," that only she could've been more tired of hearing it.

Then that day came. That unexpected day Dr. D said she was ready to be brace-free... Everything was new again. Bathtime. Bedtime. Playtime. I'll never forget the first time we went to the park and none of the kids looked her weird. None of them backed away silently when she asked them to play. She was just another kid again, a mere 8 months later.

Lying in bed during the wee hours of this morning, a song jumped into my head. One I haven't thought about or heard since I was a child:

This is the day, this is the day
That the Lord has made, that the Lord has made.
Let us rejoice, let us rejoice
And be glad in it, and be glad in it.

This is the day that the Lord hath made.
Let us rejoice and be glad in it.

This is the day, this is the day
That the Lord, hath, made.

If I've learned anything, it's not to worry about planning ahead. Too far at least. By all means feel free to have good intentions and a direction you want to go, but everyday and every journey will work itself out in due time. Not in YOUR time, but in His time. And it'll all be ok. And you'll all be better for it. In strange, unexpected, most important ways, you'll all be better for it.

"Me and Josie. We're wearing blue ninja costumes." (Willa, 2/26/15)

Disappointment

The problem with disappointment is that it is always unexpected. You thought something would happen, and then it doesn't or it has a different (i.e. less desirable) outcome. So not only are you surprised when your vision for that something has been changed, but you are forced to go down a road you might never have expected. And make the most of it. That's the clincher. 

Disappointment is also something that is often experienced and dealt with behind closed doors. Everyone is fighting a battle, and those fighting battle after battle after battle as part of a full-blown war either give up or get brave. I've seen my share of both. And there are fairly no words to describe the latter. The kids, the parents, the families who fight and fight and fight just seem to get braver and braver and braver. What is that saying, God only gives you what you can handle? There have been plenty of times over the past few years that I've been angry with that statement. I used to drive past a billboard everyday that read "If you could ask God one question, what you would you ask?" and everyday my answer was "WHY?!!!" 

There are times I still let myself step into the dark room of anger and grief. If anything, it provides some strength, a recharge of the courage battery. But anger and grief ebb and flow with strength and courage. The must mundane things and experiences open up the door to this room. It does for me; it does for Matt; it does for Willa. 

Adult-sized disappoint looks like leaving your new baby at the hospital in critical condition, waiting for and celebrating your infant's delayed milestones, withstanding stares and ignorant comments about your child's canula/helmet/tilt/halo, keeping a smile on your face when your heart is breaking because your family is split in half, thinking ahead to when your child won't be able to do dance/soccer/somersaults/trampolines/etc. 

4-year-old-sized disappointment looks like Mom and Dad always telling you to slow down and be careful, not being able to go to friends' birthdays with bounce houses (if Mom and Dad don't throw away the invitation first), not being able to take a real bath or play in the rain, not being able to run/jump/climb/play or dealing with stitches/X-rays/CT scans when you fall, learning how to protect a loved one's head from halo pins when giving them a hug, not being able to participate in the preschool Jog-a-thon without Mom's hand. 

If I could take her disappointments and add them to my own, I would, but I can't. Which is sometimes a disappointment in itself. When your kid just can't be a kid. 

But disappointments are often just change. When He closes a door, He opens a window. Another way. A fine way. Ways that have touched us with the most amazing people we've ever met. A hero all his own that has made a halo seem Superhuman. Sisters that seem to just know when I need picked up. The gruff-looking man in orange waders at the Oregon State baseball game that gives Willa his poncho during a rainstorm. A friend that doesn't say no. A cashier that shows Willa his cervical scar that matches hers. A running partner that doesn't expect me to talk about it. A tribe of Curvy Girls that makes it feel normal. Co-workers that know exactly how many more days. A sea of purple shirts and scoliosis bracelets. People coming out of the woodwork to support our whole family. 

If disappoint teaches you anything, it's to expect nothing, take what is given, and find joy in everything. Be brave everyday. 

5 more days... Brave Girl, Wonder Willa

The Power of Touch

I've been planning this post in my head for days now, probably longer if I really think about how long...well, I've been thinking about it. And while I had planned to write it today regardless, today's events really reminded me what I was writing about.

The Power of Touch -- It's real. Like when you hear stories about neglected babies in orphanages thriving with the simplicity of human touch. Like when you don't know how to help someone suffering and you instinctively touch their shoulder, hold their hand, or offer a hug. Like when the sick receives blessing by the touch of a holy one.

I never thought a lot about the privilege of touch until Willa was born, and we were not allowed to touch her. For days on end we were reminded to look but not touch, breathe but not speak, pray but not disturb. Every sense of hers was heightened and stimulated by anything over a soft murmur. I understood the privilege of touch on her 16th day of life, when I held her in my arms for the first time.

But the privilege of touching her has often been disrupted. First by tubes and wires and leads. Then by a canula that provided precious oxygen. Next by a helmet that shaped her irregular skull. And now by a halo, and more restrictive still--a vest, that makes it near impossible to hold her and love her like she needs when she's wearing, well, a halo and vest.

I notice it most when she is either hurt or at bedtime. And today, it was the former. When blood was running off her hand onto my clothes, after she tripped and a halo pin near sliced straight through her hand. It is incredibly hard to physically comfort a child when four rods attaching a surgically implanted halo to a hard plastic vest is in the way.

I've learned a lot about The Power of Speech when The Power of Touch is insufficient, or simply unavailable. The Power of Speech is often verbal, but sometimes the words don't quite reach far enough for one reason or another. And The Power of Speech is also nonverbal. It's the calm that you so convincingly exude when your heart wants to jump out of your chest and your eyes want to melt into tears. It's what you say when you on the brink of losing control, when you later hear your words out of their mouth.

I cannot wait to feel her head against mine again. Her sweet smelling neck. Her tight bear hug. I want unrestricted butterfly kisses and forehead-to-forehead soul-searching stares.

I want her to feel like she can do anything. Because based on what she's already conquered, she's a forced with reckoning with.

Sleep, my Babe

We've been here before. Not the Pediatric ICU, because last time it was the Neonatal ICU, but indeed, we have been here before.

We've been in this limbo of watching and waiting. Of praying and trusting in the dual powers of God and modern day medicine to see our girl through. 

We've been in the land of wires and tube and lines; going from somewhere to somewhere else; monitoring vital systems, removing waste, delivering medication and precious oxygen. A puzzling maze tethering the patient--in this case, our daughter--to the bed, beeping and sounding alarms, mapping a multitude of peaks and valleys on the monitor with a tendency to hypnotize any unsuspecting observer. Making it near impossible to provide any sense of physical comfort through human touch.

Almost exactly four years ago

We've been here before. Watching our sleeping girl. And while a sleeping child is truly the most beloved sight, a sedated-sleeping child is quite the opposite. The oddly-colored skin, swollen from surgical positioning and medications. The wincing and twitching. The moaning and whimpering. A sedated-sleeping child is not in dreamland; they are in a land of limbo. Just like the anxious observers (i.e. parents). 

A little bigger this time

Except this time we know we get to keep her. We know that we will be taking her home. We know that they'll be time for us to sleep later, because right now she needs us next to her, humming and shushing and praying and singing her favorite lullabies: "You are my Sunshine," "Don't Worry About a Thing," "Jesus Loves Me." Her most frequent request is "Skeeters"-- the one most near and dear to my heart that my dad sang to me and his mom to him...

Skeeters are a hummin' on the honeysuckle vine

Sleep Kentucky Babe

Sandman is a comin' for this little babe of mine

Sleep Kentucky Babe

Silvery moon is shinin' in the heavens up above

Bob-o-link is pinyin' for his little lady love

You is mighty lucky, Babe of ole Kentucky

Close your eyes and sleep

Go to sleep, la la la la

Lay your little golden head, on your mama's breast

Oo Oo Oo oooooo

Oo Oo Oo oooooo

Close your eyes and sleep

Willa has heard that lullaby since her very first fighting day. My Grammy, who passed it down our family, died a week after Willa got her halo. Clearly she has been watching over Willa ever since. 

Love the Love

As our "normal" gets ready to shift yet again, it has been a reflective, anxiety-ridden, emotional day. But as much as I might want to crawl into a hole and cry (or under my desk as a more viable option), I am completely unable to ignore the love going on all around us.

Today was Willa's "You Made it Through Halo Traction" (exact words on the trophy) party. And for lack of a better, more carefully scripted phrase, damn right. She owned halo traction. Actually I think she'll miss parts of being in halo traction! We are all going to miss Shriners. The people here are gifts. Beyond the nurses that blow bubbles, play hide-and-seek, plan parties, paint nails, make snow cones (and on and on and on), every single employee at Shriners has gone out of their way to support our family. I've talked to three administrative-level employees on the phone this week, and they all say how much they are going to miss Willa. And not only emotionally, but financially... Shriners is going to do something they have never done before to help our family. And it is still hard for us to believe.

Tomorrow my co-workers are all wearing their purple "Holcomb's Hero" shirts for Wonder Willa. There are people praying for her in Oregon, Illinois, Georgia, North Carolina, Virginia, Washington, California, Colorado, Minnesota, Ohio, and Michigan -- the Chief of the US Attorney's Office in Detroit has his prayer team on the ready (he has kept tabs on Willa ever since I met him last year). And almost 175 people are wearing scoliosis bracelets in honor of Willa.

We love the love. We are inspired and moved by all the love. People tell us they admire what we're doing, that we're the ones inspiring them with our courage and strength and love for our family. I don't know about that, but I do know that the love makes it easier for us. Easier to love each other and treasure the days and learn to lean on others. We have been so incredibly touched by how people have responded to our little family. It is indescribable to realize how our girl has affected such a spectrum of people. She is destined for great things. And those great things are already happening.

I know Willa and her surgeons will be surrounded by love tomorrow. That operating room will be bursting at the seams with love. Love makes all things possible. It makes the world go 'round. As Matt and Willa's favorite artist says: "Love the life you live. Live the life you love."

Pura Vida.

A Juggling Act

Last week I watched a movie that ended with the husband referring to his wife as a "professional juggler." And I thought, how apropos. All those balls up in the air while the juggler's smile never falters.

These days, weekdays in particular are a regular juggling act, especially those following the nights Matt and I tag out at the hospital. Alarm goes off, I get ready and quietly leave while Willa is still alseep; meet Matt and Josie in the parking garage by 6:40, rush to drop Jo at Miss Tina's in hopes to be at work by 7:30; put on a smile at work and hope to squeeze in a run before picking up Josie; rush back to the hospital, eat dinner together, bathe the girls, take Josie home in time for bed; wash and fold laundry to pack Willa more clothes, re-pack work/lunch/running bags, pack Josie's pajamas and bottles, possibly pack overnight bag (depending on the night); attend to Finley, take a shower, fall into bed, and attempt to get some sleep before it starts all over again.

All those pieces, all those balls in the air. One drops and the others seem to follow. Or I trip and stumble, dropping a few, before quickly picking them up in a panic before the others have a chance to falter. They all affect the others. And it is such a delicate balance.

Some days are worse than others. Like when I don't even have time to take my coat off at work and don't realize it until I'm ready to leave. When Jo and I finally get to the hospital and Willa is not happy to see us. When I forget to bring Josie's bedtime bottle and end up re-washing the one she drank in the car that morning, getting milk from the cafeteria. When I get to stay with Willa and she is tired and fed up and throwing one fit after another. When I spend the first night home after being at the hospital all weekend and Jo inevitably wants to hang out at 3am. When I realize that I talk to my husband more in text and email than face-to-face.

But the moment of control before throwing each ball back in the air is fleeting. You give it your best shot and hope for the best. And unlike real juggling (which I've never been very successful at), this kind of juggling is far from a solo act. My husband is truly amazing. We have always referred to ourselves and our family as a team, and we're seeing the reality of what that means. When people ask how we're dividing and conquering, I tell them that it's like we have shared custody but never of both at the same time. It is... strange. But instead of tearing us apart, it is teaching us how to trust in and rely on each other as never before (and hopefully never again).

And it really is amazing what everyone in our lives have done and are doing to help us. Seemingly insignificant offerings that make all the difference: stopping at our house to throw the rope for Finley, coming over after Jo is in bed so I can go to a meeting, tag-teaming the girls to allow Matt and I to spend more than 10 minutes together. It's not the things, it's the people. All the wonderful people in our lives helping to keep the balls in the air.

In Gratitude

In the past 20 days, I have learned more about gratitude than I have in my 30+ years of life. Because it turns out that eventually your walls are either broken down or just plain crumble, and you have no other choice but to depend on other people to hold you up.

Today I prematurely left a Crisis Response Team training that I was required to attend for work. I sat through the presentation thinking that maybe I could benefit from some crisis intervention. Maybe some crises aren't always something that happened, but rather something that is happening. Something that permeates every minute of your every day. Something that you dream about at night and wake up wondering, wishing that it was just a bad dream. I had to leave that training when I realized that I've spent the last 20 days in crisis mode. My family, has been in crisis mode. Because what is "crisis" except a total, involuntary sacrifice of control.

And yet, while every single day may seem like an entire year, we are lifted up again and again, by each other first and foremost, and then by people in our lives that touch us in often the most unpredictable, yet completely appropriate and necessary ways...

- Nurses that give Willa "jobs" and let her paint their nails.
- Doctors that tell us we are doing a good job.
- Friends that force sustenance and relaxation and laughs.
- Parents who are available for anything and everything.
- Bosses that flex our time and support our family.
- Daily snacks left on my desk at work.
- Siblings that send funny cards and texts and share the burden of pain.
- Work colleagues that don't accept no to a hug, and then let me cry into their hair.
- A fourth grade class that made the most touching cards for me AND "Wonder Willa."
- Blasts from our pasts that wear Willa bracelets with pride and pray for her everyday.
- The maintenance man at my work that lectures me daily about telling him what we need.
- MealTrain participants that bring not only meals, but treats for Finley (our afterthought).
- Church family and far-away friends that check in... and in and in until we check back.
- A purple princess halo sister that makes Willa just feel normal. 

I could go on. And it truly is the little things. The things that tell you people love you and are thinking of you every day, not just 20 days ago when this family crisis began or 24 days from now when it begins again. The things that cost the least. The things that you can say "thank you" for, but there really are no words to tell someone how they lifted you up at the most opportune time.

There will never be the right words. Because when Matt is with Willa and I'm with Jo, or Matt and Jo are home while I'm at the hospital with Willa, or when our parents split care for the girls so Matt and I can have more than 10 minutes a day to catch up... Our family is not whole. And we have gotten pretty damn good at making it seem like it's all good. And as far as our girls know, it IS all good. But we can't wait to be whole again. And in the meantime we're learning to accept help and support and love from all sorts of people we are blessed to know.

Thank you. Truly.

<3 4A

Silent Pain

This whole situation is alarmingly familiar. Most of the similarities I expected, those that come with the territory of hospital life. One, however, I may have conveniently forgotten. That's the silent pain. 

Sure, we're seeing some real, not-so-silent pain and push-back from Willa. Behaviors that both break my heart and surprise me coming from my mellow little lady. And all to be expected considering what she is being forced to manage (at 3-years-old).

It's the silent pain I didn't expect. The same silent pain that came from those dark liquid eyes of semi-sedated-Willa in the NICU. The silent cries stifled by the intubation tube. The grimaces and clenched fists. The silent sound of pain that rang in my ears because it hurt my heart. Especially when you've never heard your baby cry yet.

I'm reminded of those unpleasant memories by current events. New silent pain. Silent pain I never imagined to see from my bubbly chatterbox. The silent pain where the spark leaves her eyes and her face becomes like stone. Lack of eye moment, spittle collecting at the corner of her mouth, no response to direct questions. Even summoning the image to describe it chokes me up. The expression is not quite blank as it is angry. 

We're seeing less and less of this silent pain, possibly as she's becoming more outright resistant. I guess if I have to (or can) choose, I pick the latter. Be angry! With me, with the doctors, with the situation. You have every right to be angry, my brave girl. This was chosen for you, without your consent. Let me have your silent pain with knowing this was chosen for you. Because in a few years, I can only hope and pray it is a forgotten memory. For all of us.

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.

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.

Our New Normal

Our lives changed forever on March 11, 2010, at 8:52pm after [exactly] 40 pregnancy-perfect weeks of anxiously waiting to meet our little girl (or boy?). Except that moment of perfection and bliss quickly became one of panic and crisis when Willa was born so ashen gray and unable to breathe, and our delivery nurse hit that blue button. That blue button that summoned the NICU team of pure miracle workers that whisked our girl to the resuscitation room where she was bagged and further assessed.

Was that only 3 1/2 years ago? Because it feels like a lifetime.

Instead of leaving the hospital with our little pink bundle and anxieties about how to be new parents, we left the hospital empty handed. We left the hospital knowing that she wasn't expected to live. We left after hearing the cardiologist tell us to be prepared to turn off the machines.

Ours was the biggest (8lbs.6oz. and growing with swollen tissues) in the NICU, in her own room. I can still pick out the window when heading west over the Ross Island Bridge. Ours was the one with the slew of family visitors that kept vigil in the room next to the elevators. Ours was the one with parents there everyday after the family was sent home... until she came home.

I'll never forget the doctor that told us how sometimes they don't know the cause, sometimes they don't even know the condition. But they just treat the symptoms, and the baby gets better. Which is what happened for Willa. Those amazing doctors and nurses treated her every symptom. They consulted with physicians in Boston and Seattle and Cincinnati. They became not just her lifeline, but our lifeline to her. They will forever be the most important people we have ever had the pleasure to know.

Willa came home with a feeding tube and canular oxygen exactly 35 days after she was born. Her final diagnosis was pulmonary hypertension -- her right ventricle valve had swollen, which made it impossible for her lungs to get the blood it needed to oxygenate her body. As her heart relaxed, her lungs (and body) got the blood it needed.

There were other diagnoses and other treatments -- PT for brachial plexus (nerve) injury causing weakness on her right side, PT and chiro for [what presented as] severe torticollis (muscle tension) causing her head turn and tilt, helmet to correct plagiocephaly (mis-shaped head) due to the torticollis... But we knew we got to keep her. We knew -- when she weaned off her heart medication just before her 2nd birthday, and then again when her 6-month echo check at 3-years-old was "clean" -- that her body was strong. And we knew that we would do all we could to keep it that way.

In early 2013, Willa's PT at Doernbecher referred us to the pediatric orthopedist, because he was concerned about the lack of progress regarding Willa's torticollis. The orthopedist's plan was to get a CT scan to "rule out" any structural deformities. I remember being so proud of Willa, laying so still and quiet during the scan. The technician couldn't believe we were able to complete the scan unsedated. I wasn't. Willa was so used to doctors and procedures at that point. Bittersweet.

I was on Spring Break when the orthopedist's NP called to tell me that Willa in fact has congenital cervical scoliosis, rare in its own right, but more rare in the sense that Willa has four anomalies in her cervical spine. All research available in PubMed (physician database) only discusses how to treat one anomaly in the cervical spine. The orthopedist at Doernbecher wanted to "monitor" her. That was a plan we weren't willing to accept and support.

We were encouraged by a handful of dear friends to pursue a second opinion at Shriners Children's Hospital, conveniently located next to the OHSU facilities up on the hill. The intake worker ensured me that cervical scoliosis was a condition treated by Shriners. My relief lasted until our initial appointment with Dr. D'Amato -- a rarity orthopedist specializing in cervical scoliosis.

Every time we see a new specialist, it's the same. We give him/her Willa's brief medical history, and they respond in a way that makes it feels like we're over-exaggerating. Then they go look at her films and notes, and they come back realizing that we know what we're talking about. D'Amato was no exception.

I don't know what I thought we would learn at Shriners, but I was unprepared to hear D'Amato's plan for treatment. I think that appointment was the only time we've been visibly upset in front of Willa, and the only time that she has been concerned and asked why we were crying.

Summer 2013 was spent both avoiding and facing the reality that Willa was going to be spending time at Shriners, preparing for and recovering from major surgery to correct her cervical scoliosis. She had a renal ultrasound to rule out (I'm learning to hate that term) any kidney abnormalities, because apparently the heart, spine, and kidneys develop simultaneously very early in in a fetus. Thankfully, it was normal. She also had a sedated MRI to get a bigger picture of her spine and surrounding features, as was necessary to plan for surgery. Lo and behold, there is a cleft at the top of her spine -- something D'Amato "has never seen before" (another phrase I already hate) -- requiring a consultation with a pediatric neurosurgeon before moving forward with the surgery.

Our desperate prayers were answered with a neurosurgeon that was... well, for real. The cleft doesn't require an extra surgery and won't hinder the Shriners plan for treatment. She not only reassured us that the surgery on Willa's cervical spine was both appropriate and necessary, but she also offered to be at the surgery on consult. We got our second opinion, and we got our last checkmark before planning the real deal.

So the next step is back to D'Amato in a week to gather all this data and create a timeline. 7 days until we know whether our lives change in a week or more. 7 days until we know when our family becomes two segments, trying to sustain any normalcy. 7 days until we make the biggest decision about what is best for our girl.

Of course there are other pieces to the puzzle -- half-day NICU follow-ups at CDRC, barium swallow studies to assess oral aversion, a chromosomal array to determine possible genetic mutations (none). I wonder who we haven't seen at Doernbecher. I wonder why Willa isn't a part of some "study" about the randomness of fetal development. I wonder if this is the last piece of the puzzle. If we can finally say with certainness "THIS is it." Because we've said that so many times before.

I know for sure that Willa has been our ticket back to our faith. I know for a fact that three days after she was born, a NIKE-wearing priest offered to baptize our girl (and drank the holy water afterward), and her stats finally stabilized. I know that Father Jim will always be a VIP to the Sallee family. And while I've often asked "WHY?!" I've been given different answers at different times. I hear that if He brings you to it, He'll bring you through it. And yet the comfort behind that statement weakens.

So we live and we pray, and we find comfort in knowing that there are many people loving Willa and praying for her everyday. We have seen her touch people in a unique way, and I have no doubt that her life has Purpose. All we can do is wait and see.