Embracing the Promise of a New Year

I'm baaaaack!

Yes, it's been a long time since I've posted and yes, I'm wondering if anyone will read this blog. I don't know about you but I'm ready for an amazing year. Of course "amazing" can take many forms and I'm hopeful this year will be the year I meet all my SMART goals.

As I get older, and each year seems to pass faster and faster, I'm beginning to appreciate each and every day I wake up, full of life. I'm focused on making deliberate changes this year with a focus on things that truly matter. For accountability's sake (and because maybe you share some of these same goals).

Goals. That word doesn't send me screaming out into the street like resolutions does. Truth be told, I never thought much about resolutions being good or bad. It doesn't matter what you call them; it only matters if you set achievable goals that you are focused on meeting throughout the year. So, without further ado here are my primary topical areas to improve on in 2019, in no particular order:



THE BIG ONES

1. My Spiritual Health

2. My Physical Health

3. My Marriage

4. Parenting my ever-growing children

5. Writing...or, To Write or Not to Write, that is the question!


And for fun...


THE NOT-SO-BIG ONES (but still valuable enough I want to pursue them)

1. Fulfilling Bucket List Items - Funny, perhaps, but I'm not getting any younger!

2. Getting my boogie on (whatever that means!)

3. Continued learning (this may or may not include pursuing a master's degree)


With goals of any kind, it's important to give yourself some grace. We all fail, and you should never throw in the towel just because you fell short at some point during the year. As with much of life, dust yourself off, get back to it and TRY AGAIN. Don't give up and say, "I'll try again next year." Even if you still end up falling short, you'll gain a level of perseverance that maybe you didn't possess in the past.

I'll be sharing more details about my personal goals and what I hope to achieve this year and welcome you to join the conversation...if there's anyone out there.

Until next time...

Immersed in Grief

Pain. We all experience it. Whether it’s physical or emotional, pain is a shared part of life for every human being.

And so is grief. Many in our liver kid community have experienced the unimaginable grief of losing a child. My heart aches for each and every parent who’s been forced to live that nightmare. Saying goodbye to a child. It should never happen.

Yet even in the midst of that grief so many people reach out with hope. They extend hope to others by how they respond to such tragic circumstances. It’s here we see the vital importance of human relationships, of sharing our pain, our grief and our hope.

Two weeks ago this morning, we lost a precious member of our family, our dear friend, Cari. She wasn’t a relative by blood but she may as well have been. Cari and my wife shared a deep friendship that goes back 20+ years. Cari’s presence at our children’s birthday parties or at special events earned her the coveted spot of favorite Auntie. She was there throughout Sarah’s trials, her liver transplant and beyond.

Cari died at the much-too-young age of 38, a little over a month before her 39^th birthday. That alone seems unfair. But as everyone realizes, this world isn’t fair, nor can any of us foresee the time God will call us home from this world.

I had the great honor of being a pallbearer for Cari’s burial last Friday. Holding that casket was one of the most difficult things I’ve ever done. I knew well that Cari’s spirit had long left that shell that was once her body; the body wracked with cancer & pneumonia and filled with weariness from the battle.

Still, to set that casket down seemed to have finality to it. Perhaps that was the moment I truly realized Cari was gone and would no longer call Patty to go see a movie or sit, playing games with our children.

My grief, already great, tugged further at my heart, my mind. Why? The question everyone searches to answer in times like these but for which there is rarely a satisfactory one.

And it wasn’t only my grief for Cari’s loss but the grief I held, too tightly perhaps, for my children who’ll never have the chance to hear Cari’s voice, or feel her love while she watches them during a date night for my wife and I. For them, there certainly IS grief but not to the extent I expected. Maybe kids really are just more resilient than adults. Or maybe they don’t yet realize the depth of that loss.

In the next post, I’ll tackle my emotions moving forward and the hope found in Cari’s faith in God and her Celebration of Life.

NOTE: I haven’t yet found the right words to adequately write a tribute to Cari but I hope to do so very soon. 

Recalling the Beginning of our New Life - April 23, 2009

Six years. Hard to fathom it’s been that long. Time apparently flies even when you’re not having fun.

Six years ago, my kids were all little tikes. Arianna was not quite 7 and in first grade.  Caleb was in preschool and Katarina just celebrated her 3^rd birthday.

Six years ago, this very day, April 23, we began a new journey as a family, our new “normal.” Maybe we knew it from the time Sarah was first diagnosed with biliary atresia. We certainly knew it after her bleed that March. Reality can be difficult to accept, especially when your child is involved.

Still, we walked the road that lay before us. We've battled through the times of separation, the times of pain, the times of emotional instability and the times of endless questions.

We stand here now, in one piece, because of God’s grace and mercy. We stand here now because of a collection of people too numerous to name each one. But we wouldn’t be standing here without all of them.

I’ve said this through Facebook and other venues. The words don’t seem adequate but they’re all I have: THANK YOU. We have six years of thankfulness to dispense.

THANK YOU to the wonderful nurses on the transplant floor who’ve cared for Sarah, many of who became friends.

THANK YOU to the surgical staff for their remarkable abilities and care.

THANK YOU to all the doctors we’ve come in contact with due to Sarah’s frequent visits.

THANK YOU to the Transplant team, a spectacular assembly of transplant coordinators, nurses, doctors and surgeons.

THANK YOU to all the friends and strangers (who became friends) for spending quality time with Patty and Sarah, lifting their spirits, making them laugh, bringing gifts and supporting our family over the years.

THANK YOU to all the prayer warriors around the world who never wavered from the time of the original diagnosis through the realization a transplant would be necessary even to now, when even “normal” can fall outside the realm of ordinary. We wouldn’t have survived without you lifting Sarah and our family up in prayer.

To all of you, we are eternally grateful.  

Six years with our family still intact. God is gracious to us, beyond expression.

Navigating a Life of Uncertainty

Living with a pediatric organ transplant recipient can be challenging enough without bumps in the road. Watching for signs of illness, ensuring they get enough rest and that they eat well can seem like a full time job. When the bumps do come (and they always do), it opens a set of potentially troublesome experiences.

In my last post, I detailed my struggles with Sarah’s biopsies and their outcomes. While she returned home last Monday, new issues remain unresolved.  The liver docs added a new immunosuppression med to her daily regimen and she continues to slowly wean off prednisone.

Thus far she seems to be handling the new medications fine. To watch her, you’d never think anything was wrong with her. She’s the same funny, joyful, excitable little girl she’s always been.

But that’s the problem with transplants.

You never see the inside.

After further review of Sarah’s biopsy results, it’s been determined donor-specific antibodies (DSA) are affecting her liver’s “happiness” within her body. Additionally, our liver docs confirmed fibrosis, or scarring, is more evident and seems to be ongoing as they review past biopsies.

The good news is that the scarring is at such a slow rate a second liver transplant will not be necessary in the near future. The not-so-good news: it’s highly likely Sarah will require a new transplant sometime between two to ten years. That’s sobering reality for our family.

We always knew this new life – our new “normal” – living with an organ transplant recipient would not resemble what other family’s consider a normal existence. We have to worry about things like pneumonia, EBV, CMV and lymphoma either because of a suppressed immune system or as a side effect of the immunosuppressive meds.

Navigating this life of uncertainty in which we find ourselves, somewhat intensified even from the past, is proving to be daunting and heartbreaking.

Maybe I’ve always suspected Sarah would need another liver sometime in her adult life. I didn’t consider the possibility she’d need one before she reached adulthood.

The sunny side of this is the hope that the new med will prevent future scarring. There are still many unanswered questions regarding the DSA and what else might be happening in Sarah’s body. It’s once-a-week labs for the time being so they can monitor her liver numbers. Those numbers – ALT, AST, GGT and others – will start to paint a picture of where her story may be headed.

So, how do we navigate this life we’re living? Aside from breaking down every so often and crying out to God, we find ourselves falling back into His arms and relying on the prayers and support of those around us, hoping the need for a new liver won’t arise too soon.

In the end, hope is all we really have. 

Here Comes That Feeling of Utter Helplessness

Every day I’m grateful to be alive and share my life with such a wonderful bunch of rascals. 

Our lives would be very different today without any one of them. It’s something I find difficult to fathom but end up thinking about more than I should. It’s all because of biliary atresia and the resulting liver transplant Sarah received nearly six years ago. 

Yet, we’ve been one of the fortunate families. Our baby received a new gift of life. She fought hard to reach that point, but she did. And she’s still with us.

So many families are still grieving the loss of their child weeks, months and years later. What would they have grown up to be? What would they have accomplished? The only answer to those questions is blank pages.

So I understand how truly blessed we are to have our family of six still intact. Our marriage survived the tough times of many nights separated by hospital stays. We survived trying to reconnect as a family after long absences. But its things like today that throw it all up in the air again.

No, Sarah isn’t seriously ill and we’re not looking at an extended hospital stay like that blasted infection from last spring. It’s only a biopsy and yet whenever I hear that word now I consider all the possibilities and not necessarily just the positive outcomes.

I consider the very real possibility of a 4-day hospital stay. I consider, ever momentarily, something happening like last year when the infection wreaked havoc with Sarah’s body for more than 40 days and left our doctors scratching their heads much of the time.

And this is where the feeling of utter helplessness sets in. It sinks it’s claws deep into my tissue, even my bones and lets me know, I’m really not in control of Sarah’s health, her future.

She could live to be 100 years old and never need another liver transplant.

She could require another transplant at 14, or 20, or 40. Would those be as successful as her first one?

As the parent of a liver kid, I honestly grapple with all of these thoughts. In the end, God is the only one that knows Sarah’s future. I’m still learning to live in the here and now because tomorrow is never guaranteed. For any of us. Still, I wish that feeling of utter helplessness would find another place to live. Permanently.

Hitting the Wall

I’m certain most of you have heard that phrase sometime in your lives.  Often you can’t quite put your finger on what the wall actually is but other times it’s pretty easy to define. You’re burned out at your job. You’re not getting enough sleep. You’ve battled hard for a relationship only to see it crumble and begin to affect every aspect of your life. It could be struggling to move on in the aftermath of the loss of a loved one.

About a week and a half ago, I hit my own wall. I wish I could say it was only one thing but in reality there was a collection of things that created a “perfect storm” scenario. They’d all been building in their own way over time, some of them over the past few years. One of them in particular blew me completely out of the water.

Post-traumatic Stress Disorder. PTSD.

Originally associated with returning military combatants, PTSD can affect anyone who’s lived through a traumatic event or circumstance – such as a child’s liver transplant.

This bout of PTSD blindsided me, although I probably shouldn’t have been surprised by the timing. I’ve continually sought to bury my own pain and deal with life as best I can. But it’s fruitless to believe you can have a “normal” existence when you haven’t dealt with the issues burning your soul. So this is where I live today. It’s not fun, it’s not enjoyable but working through the pain is necessary to regaining a hold on my life. Until I can rid myself of the residual crud, PTSD will rear its ugly head at the most inopportune times.

The good news: I’m alive and I will survive this. My little Sarah battled and fought through biliary atresia, a major bleed and a liver transplant. And everything that goes with it. I can overcome because of her example. So can you, if you’re living through the pain of a child’s illness or anything else but you have to WANT to work for it. There is no overnight fix.

My advice to other liver families and anyone else struggling with PTSD: don’t go it alone. We weren’t made to live alone and we kid ourselves when we think this is “our” problem and we need to fix it. People exist for each other. Let others walk alongside you and aid in your recovery.

Someday the sun will rise and this difficult road will lay behind you. Maybe we’ll meet each other in that place. Hang on. 

Remembering Our Heroes…and Their Pain

Today is one of the most revered days in our country’s year, Veterans Day. We honor those who have served and defended our nation from enemy forces; who’ve fought in far off lands, on the beaches of Normandy, the dense brush of Vietnam and in the deserts of Iraq and Afghanistan. 

I stand with many others today who salute those warriors, those still with us from as far back as WWII, hoping they realize how much their sacrifice means to those of us who’ve been fortunate never to experience war of any kind firsthand. Yes, I’m a Navy veteran but I never served in harm’s way and to me that makes a great difference compared to those who’ve seen friends die before their eyes, lost their sight, arms, legs or use of their body at all.

The trauma of such loss finally found a diagnosis in the form of PTSD. Who knows how many veterans from WWI and WWII lived through their remaining days never realizing what caused their anger, withdrawal or suicidal thoughts. It’s imperative, in light of their service and of PTSD, that we take time as often as possible to let them know we value them, not only as veterans but as people.

Today is one opportunity for us to thank those men and women. But, please, make it more than an annual event. If you see someone with a ball cap signifying them as a veteran or you attend an American Legion or other military function, take time to shake their hand and express your gratitude. You’ll never know the impact of your brief message to them.  

Sheriff for a Day

These past few months have been filled with excitement for our little Sarah. We found out some time ago she was going to be this year's Snohomish County "Sheriff for a Day". The state legislature approves the "Chief for a Day" program that allows police jurisdictions to nominate children with chronie or life-threatening medical conditions to participate throughout the state.

We had the great pleasure of making a new friend with one of the deputies and his family, as well as with so many more people in the department.

First, Sarah was one of the stars of the show in the Everett 4th of July parade.

But things didn't end there. Last week was the culmination of her months of waiting. First, she was sworn in as Sheriff (and received a pile of goodies, I might add).

The pinnacle of it all was the opportunity to mingle with other families, law enforcement and even some mascots at the Showare Center and then in Burien. And did I mention she got to ride in a motorcade?

Truly another unforgettable experience for not only Sarah but our entire family. We look back at what brought us to this point - her diagnosis with biliary atresia and subsequent liver transplant - and we have seen God's hand in it all. Her second chance at life. The opportunity to do things we might never have done. The blessing of meeting other families walking similar journeys and the honor of encouraging others. 

This is a beautiful life. 

Sarah's Latest Adventure

I know not everyone is a friend of mine on Facebook where I've been posting regularly the past month about Sarah's current hospital stay at Seattle Children's Hospital, so I'm posting an update here for you.

Sarah's been in the hospital for 29 of the past 33 days. Things began simple enough: her liver numbers were elevated far beyond what they've been since her transplant 5 years ago. This led to our semi-regular visit to Children's for a liver biopsy. No problem, right? And it started that way. Acute rejection and a regimen of prednisone in-house for 4 days and then weaned off it for the next month.

Alas, some things just can't be that easy.

It turned out there was much more than just a minor acute rejection. There was an abscess and an infection. This created a lot of issues including a tremendous amount of fluid. Sarah needed a drain inserted in her abdomen and then a second one a few days later. As usual, she was a trooper. I wonder if God grants sick children a special dose of fortitude and perseverance because if it were me, I'd be a sobbing mess with all the poking and prodding the doctors and nurses do to Sarah.

Surgery became an option late last week when it seemed like the fluid would just not drain enough to clear the infection. The antibiotics were working as much as they could but not 100% due to all the fluid. No one wanted to talk about surgery because of the danger of further infection but it seemed like a very real possibility. Thankfully, the fluid has steadily been clearing out the past few days and Sarah had one drain removed Friday. There's the possibility the second drain may be removed Monday but have to wait and see.

Our warrior battles on! We're so grateful to God for carrying us through this time as there's been an (obvious) strain on our family with Patty mostly the one at the hospital, the other kids finishing up school and staying with some friends & family, and me home with our dog.

More lessons learned and to be reflected on following this latest adventure. We're humbled by the love and support we've received and by God's mercy on Sarah's life.

Flashback to...Scoliosis

Passing my 46th birthday this year, I've begun to reflect more and more on the past. For some reason, that contemplation took me back to late May 1980 when I was in 7th grade. I was a short kid and off-and-on shy, although really, in a class of only 60, I knew everyone.

Back in those days, public schools conducted back screenings in an attempt to catch scoliosis as early as possible. While only 2-3% of kids 10 to 15 will be diagnosed with scoliosis, it was a big deal back then. I remember the day of the screening and wondering what the big deal was about one shoulder blade being lower than the other.

The final days of school came and went and I found myself in the orthopedic surgery department at UC Davis Medical Center in Sacramento. It's there I first met Dr. Dan Benson and his wife, Karen (I will return to them in another post). Dr. Benson was one of the kindest men I ever met and a great physician. But I wasn't crazy about his diagnosis.

Scoliosis is a curvature of the spine that generally hits girls and boys who have started to grow at a faster clip. Girls are affected 5 to 8 times more frequently than boys, depending on who you listen to, but I was one of the "lucky" guys.

When my parents and I met Dr. Benson and received the news, I was stunned. That feeling intensified when I learned the prescription was the Milwaukee Back Brace - a hideous monstrosity that would prevent my spine from curving further and hopefully decrease that curve as I grew. (All the online photos I found were of girls in the brace. I will see if I can find an old one of moi which I'll include in a future post.)

Great news, I was certain, except for the fact I would have to wear it 23 hours per day...and 8th grade, then high school loomed in front of me.

Four Years Later...and "Thank You" Will Still Never Be Enough

Four years. It seems insignificant when thinking of a life but this one is special. Four years ago tonight Sarah received her gift of life. That same night another family lost someone they loved dearly, just as much as we love Sarah. Our joy at the sight of Sarah growing each day is mingled with the painful realization another child died. We’ve never met the donor family personally and we still hope to have that opportunity sometime in the future.  I can’t begin to imagine what their healing process must have been like or how they are still coping, still remembering the loss of a young life with so much potential – a life tragically cut short.

For us this family will always have a special place in our hearts. They decided at some point to share the organs of their beloved child with others, and Sarah was the beneficiary of that child’s liver. The portal vein Dr. Healey was able to harvest from that liver replaced Sarah’s useless one. And the liver itself, what a beauty! To date, Sarah has had no major issues or serious rejections resulting in liver damage. While she’s had her shares of biopsies, that liver has remained strong and up to the task of dealing with an active four-year-old.

Tonight --- and each day --- we will celebrate the 2^nd chance Sarah received April 22, 2009. If things had been different and a liver had not come, our lives would be so very different. I can’t begin to imagine my life without her silly laugh; or the times watching her dress up as a little princess and giving us that mischievous smile, as if to say “yes, I really AM this cute!; or seeing how much she loves her brother and sisters and how much they love her in return. The thought of a family of five instead of six is almost too painful to consider.

So, yes, we are grateful that we’ve had these 1400+ additional days with Sarah, all because someone else shared a precious gift amidst the pain of their loss.

“Thank you” will never be enough.  

This Fragile Life

I was reminded this past week about the fragility of life. We see this daily in the liver community - babies, children and even teenagers, battling for their lives when their liver fails or as they await a transplant. But this reminder hit even closer to home than liver disease.

A coach from our kids’ school passed away. He was my age or younger (early 40s). One week there was nothing wrong with him. Three weeks later after an infection, kidney dialysis and surgery, he was gone….leaving behind his wife of 17+ years…and his two high school-aged kids.

And the question you know is coming began popping up all over the place: why?

Why is someone so loved, so admired and so important to those around him taken so young and so suddenly. It’s impossible to provide a satisfactory answer to that question, especially for those most impacted by his loss.

Our lives will go on because it wasn’t our husband, father or brother that died. But for his family there will be an emptiness that will be difficult to even explain to others. No graduation celebration with his children. No more anniversaries with his wife. No more laughs with his friends.

This is an inconceivable pain to me. I have four children and an incredible wife. I can't begin to imagine leaving them - to never see my children grow up or get married or have their own children; to not be able to share countless priceless moments with my wife as we grow old together. 

For those of us who believe in Jesus, there is great comfort in the fact this man is now home with the Lord, pain free…forever. We thank God for that and we praise Him for a life well lived. It's not goodbye, just farewell for now. 

But the emptiness remains. And the bitter reminder that no matter how much we try to convince ourselves otherwise, this life is temporal. Truly, no man knows his time.

Live your life well. Every day counts. Every moment matters.

Pediatric Liver Disease Profile #1: Biliary Atresia

Throughout the coming months I'll be writing profiles of different pediatric liver diseases. This world used to be invisible to me before Sarah's diagnosis. I'm grateful to be part of a wonderful community of people who care for each other, advocate for their children and try to bring awareness to their own little parts of the world.

Up first, the disease that affected my family: biliary atresia.

Biliary atresia is a rare pediatric liver disease that affects infants in about every 10,000-20,000 births. Race can factor into this number, and females are generally affected more than males. 

The essence of biliary atresia is the liver's inability to excrete bile (the "garbage"). This is due to bile ducts being too small to be efficient or completely non-existent. Without the ability to rid itself of bile, the liver is poisoned, leading to a hardening of the organ. If not diagnosed within 8-12 weeks of age, serious complications can occur. The disease is already life-threatening to begin with but if diagnosis lags, the danger increases. 

Hardening of the liver (as in cirrhosis) can lead to impeded blood flow which causes varices, as the blood must find "alternate" routes through the body to the heart. These varices (essentially, internal varicose veins) first cause the spleen to increase to an abnormal size before before making a new path through the spleen to the esophagus and beyond. In the absence of immediate care, these varices can burst with serious ramifications. 

The first step in restoring the liver's ideal function is the Kasai surgery. The Kasai takes a piece of the small intestine and attaches it directly to the liver in order to allow bile drainage. Sometimes this is enough to restore the liver's health and no transplant is necessary. 

If the liver has been too badly damaged to continue for the long term, transplant is the only viable option. 

Standard symptoms include jaundice (body and eyes), distended belly, lack of appetite, white stool and lethargy. These may or may not ALL be present but if you have a question, you should request your pediatrician request blood tests. 


Links for Reference and Education:

National Digestive Diseases Information Clearinghouse

Cincinnati Children's Hospital

American Liver Foundation

American Pediatric Surgical Association

The Children's Hospital of Philadelphia

Back to school...Finally!

As many of you know who've been reading this blog for any length of time, I started college at 40 and stopped just prior to Sarah's birth. Since then, I've considered the thought of returning and finishing my Associates degree but various reasons and excuses prevented me.

I'm happy (and excited!) to announce that finally --- after 4 1/2 years! --- I've registered for classes again. I only need 5 classes to finish and figure I can be done by the end of fall quarter. I'm pumped to get going again.

For me, it's really about FINISHING. I'm great at starting a bunch of different things (like the six books I'm reading right now) but I don't finish very well. So, I'm going to put that to rest. I've finished writing a novel and by gum, I can finish college, too.

Just wanted to share the news. Regularly scheduled programming will return to the blog when I have time...in between writing...and school...and, oh, YOU know the drill!

Looking Back, Looking to the Future

Did I go to sleep and wake up with another year gone? It sure seems like it. The older I get, the faster each year seems to pass. Not sure if it's because I have four small kids or another reason. I've been thinking about 2012 and wondering if time passes faster for those of us who don't stop to smell the roses from time to time. You know the person: they are so busy or have the facade of busyness that they never bother to stop and look at life passing by them. 

I think this could be my problem. It's not that I have a packed schedule 365 days-a-year. But I don find myself failing to stop and enjoy life. It's more than reading a book to relax, or watching a movie with my kids. I just don't enjoy each and every day as I should, especially not as a follower of Christ should. And definitely not as someone whose experienced the frightening reality of pediatric liver disease firsthand.

I'm not one to make resolutions. I choose to list goals; things I'd like to improve on personally or professionally. I like to make them measurable and actually attainable. To me, setting a goal of losing 30 pounds means nothing without a set plan I KNOW I will work through. But saying I will strive to become a better friend by deliberately pursuing relationships I want to nurture - now that is something concrete.

2012 was not a terrible year by any means and I'm an extremely blessed man and fully know it.  But I look forward to 2013 with anticipation and joy, awaiting all the possibilities before me and reveling in God's grace and vision for my life.

What is your best memory of 2012? What are you looking for most in 2013?

When You Aren’t Really Over It

You think you’ve gotten over it. Something from the past that you believed you’d dealt with and put to rest rears its ugly head again. You really thought if it came up again, you’d be ready. But you never are. This is how I felt this morning when Patty called with Sarah’s latest labs, the first in over three months. Results are below:

AST 117          (was 34)

ALT 347          (was 29)

GGT 154         (was 16)

ALK Phos 417 (was 264)

  

To those of you liver parents, these numbers may or may not appear startling. I’m so used to seeing them my eyes begin to glaze over when I read them. It’s not the numbers that get to me; it’s the fact Sarah will need another biopsy and that there is a likelihood of a hospital stay.

Perhaps I’ve become too complacent (or joyful!) that Sarah’s enjoyed such a “quiet” time in her liver journey. She’s experienced the longest and healthiest stretch of time in her life, post-transplant. Maybe that’s what gets me.

I’ve watched other kids struggle during this same time; some have even flown home to heaven. It’s hard to ever become fully comfortable in the land of post-transplant life. There’s always the thought rejection could occur and the body no longer recognizes the liver as a friendly organism. We just need to put those thoughts aside, though, and drink in the richness of each day with our children and other loved ones.

And that’s what I’ve been doing. It’s hard to even comprehend I still feel so unsettled when it comes to Sarah’s life. There’s still so much uncertainty and while it’s likely this will be nothing more than a bump in the road, with life resuming a normal routine, it’s difficult to maintain such positive thoughts all the time.

I’m okay now and fully realize that God may be opening up a door for us; that there may be someone, a family, a member of the staff, at Children’s that needs encouragement that we can provide. And I’m good with that. No matter how much jumbled our lives may get, or how often the possibility of rejection lifts its ugly head, I choose to focus on what is possible through God.

Unsung Heroes: The Siblings

When we think of pediatric liver disease and other life-threatening illnesses, we focus (and naturally so) on the child battling the disease. We pour all our time, energy and care into that one child. But what if we have other children?

Many of you who follow the blog who've experienced the journey of liver disease have more than one child. You know better than anyone else what those children feel in the midst of separation. As parents we want what is best for all our children but we're not always able to provide it. Husbands have to work; mothers are likely the ones spending the bulk of the time at the hospital. So what about the other kids, the siblings?

I treat each of my kids as a special gift from God. They are equally valuable and precious in my eyes. The fact their brother or sister happens to have special needs or require long hospital stays doesn't change that. In fact, the other kids are heroes themselves.

I've found that no matter their age, the level of compassion these kids have on their (mostly) younger siblings is amazing. Just because the sick child seems to be getting more attention doesn't dampen the love their siblings feel. If anything, it increases how much they care. 

When Sarah was battling a terrible bout of varices prior to transplant, each interaction between her and our other three kids was beauty to behold. They may experience the pain of distance from their mother and other strains, but they rarely show it up front. They are really so much more adaptable than adults when it comes to this. 

This willingness to adapt and to keep loving is what makes them heroes in my book.

Moving Ahead with Telling Our Story

This is a big week in my life as a writer. As I’ve posted here and elsewhere, I’m working on a book for parents of chronically ill children or those with life-threatening diseases. The book proposal process, necessary for nonfiction, has been shall we say, an “educational” experience. It’s made me not only better define my vision for the book but also challenged me to consider the real need in the market.

On Monday, I emailed off my first query to an agent. I’ll continue querying for the foreseeable future. On the one hand, I’m happy to have reached this point in my writing career; on the other, it’s still difficult to send your ideas & stories out, knowing full well you can face rejection on a massive scale. Writing is not for the faint-hearted. You have to roll with the punches and that’s what I’ll do.

Even if no agent or publisher shows interest in the story, it will find its way into those people’s hands that need it the most. To do otherwise would be unfaithful to the call God has clearly given me.

When Words Aren't Enough

Words. We use them everyday at work, at home and in town. Spoken, written or typed, any method you choose. Words make us laugh and cry. Words bring us to anger and help us grieve. What happens when words aren't enough?

This past weekend I learned about the death of a young girl. Death is a part of life and it happens every day in many ways. This was a young girl whose life was full of promise and she was the daughter of a high school friend. Every premature death is a tragedy and this one is no different. When we face situations like these, words seem painfully inadequate.

The past six years I've seen two friends die from breast cancer; a beloved uncle die prematurely (also cancer); my last living grandparent fade as dementia set in; too many kids with liver disease fly to heaven; two people close to my wife's family commit suicide. The list could go on. It's nothing unique. We all experience death in our lives at some point.

But how do we adequately express grief or comfort in these circumstances? These are the times with physically presence and touch have their greatest impact. Words aren't necessary. A hug from a friend. A shoulder to cry on. Listening to the late night lamentations of a friend for things left unsaid to a deceased spouse. All of these capture the essence of what true relationship can be.

Words are a fundamental part of our lives but they are, after all, just words.

Four Years...

Today Sarah turns four. I’m continually amazed by the speed with which time passes. How in the world has she gone from the beautiful little angel battling a terrible disease to a cute & feisty little girl ready to enter preschool?

Sarah’s been enjoying the longest trouble free time of her post-transplant journey. At times, it’s hard to believe she even had a transplant. Or that she battled biliary atresia. And that she could have died. I’m not trying to be melodramatic. The journey seemed so surreal itself and now this “quiet” time is beginning to resemble it.

It’s not that I’ve forgotten what happened. I never will. Writing a book about the experience doesn’t allow me the luxury of setting those memories aside, either. If anything they can seem fresher than they were almost four years ago.

We celebrate all our kids birthdays with equal vigor but there’s still something different about Sarah’s special day. And there always will be. We’re only blessed with our children for a short duration. It will end up being a short part, in terms of years, in our lives and hopefully theirs.

It’s important to me that each celebration be just that: a celebration of life, joy, love and gratefulness.

Happy Birthday, Sarah!