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...