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!

Forgiving Yourself

Forgiving yourself. These words conjure up a variety of thoughts within different people's minds. Today, I want to tackle forgiveness from the point of view of a liver parent. We've watched with sorrow recently as several of our precious liver children have left this world. The grief of a parent is  an experience unique to each one. I can't begin to understand everyone's pain because we are all so different.

What I do know is that guilt is one of the emotions that frequently torments us amidst pain and loss. Did I do enough to save my baby? What did I miss that might have helped in an earlier diagnosis? Why couldn't I buy them more time? How in the world can I live without them?

These questions and others can really become rhetorical because in truth, there's no way we can honestly answer them. Our anguish and loss causes us to ask them but answers alone are sometimes not enough. Only time, faith and the love we showed our children in their brief time with us can heal our wounds.

Guilt can be a debilitating thing. For those of us with kids suffering from various pediatric liver diseases, are awaiting transplants, or have received their gift of life but are struggling, the best thing we can do is let go of any guilt.

Forgiving ourselves for what we see as failing our children is often the first step to healing. We'll never know why our children were taken from us now, this side of heaven. But we can take the necessary step of acquitting ourselves of some tragic failure to save them. Not only will this free us from a self-made prison but it allows us to fully celebrate the beautiful life we were blessed to share for such a short time.

The Hardest Part of Letting Go

As the parent of a child whose liver is not the one she was born with, I spend a lot of time thinking. Thinking about the family that lost their child. Thinking about how different my life would be if no donor liver came. Thinking about the future --- will Sarah need another liver transplant at some point? Will she live a long life? Will I have to face the possibility of losing her, all over again?

The liver parents in the audience know what I'm talking about. This is our world and it's an inescapable maze of questions, uncertainty, possibilities, ups, downs, rejoicing and mourning. Many days we have only our faith to carry us and while that is a great comfort, we still can find ourselves stumbling like blind men, asking why her? Why now? Why, why, why?

I learned last night that a dear family friend is losing a lengthy battle with breast cancer. You can read about Jane here. The strength, determination and perseverance she has shown is nothing short of miraculous. And if you knew Jane, I'm certain you would see Jesus. Throughout her difficult, exhausting fight she's been an incredible blessing to so many people. The impact of her witness may never be known. I know she's inspired me to re-evaluate what IS and ISN'T important in my life.

As I watch her husband my good friend, Ray, wrestle with the possibility of losing Jane to heaven, I find myself remembering...

...when I pledged my life to my wife, no matter what might assail us.

...what it was like when my first child was born and the dreams I had (and still have) for her life.

...the sadness of people close to me losing loved ones to suicide.

...not knowing what would happen when my third child experienced a rare health issue where her inner organs actually exited her body for a short time.

...facing the possibility Sarah might die before she could receive a new liver.

It's not my intention to bring you down. Far from it. Each of us face different seasons of life and each of those holds something we must be prepared to let go. There is a lot we should be willing to let go of with little fight. But when it comes to loved ones, oh, that's so hard. People are never easy to let go, no matter if we know they're headed to a place with no disease, no sickness, no pain.

The fact they will be departing this life and leaving our presence is enough to warrant tears and mourning. We strive so hard to cling to the ones we love, knowing our lives will be the ones that are emptier because they are no longer with us. But in letting go, we may find that the blessing we receive from their memory, from knowing them intimately, from loving them - even for a short time - is a priceless gift that will never die.

Heart Trouble

It was an interesting week which some of you may have followed on Facebook. I was admitted to the local hospital last Thursday following an ER visit for chest discomfort. There's nothing quite like a hospital stay to throttle your world a bit.

I wasn't concerned about having suffered an actual heart attack but did want to err on the side of caution to avoid such an episode. This was my first ER visit, for myself, in quite a few years and I must admit I was taken aback by how quickly they ushered me to a room following check-in. I guess my dad was right: mention you're having chest pain and you go to the front of the line!

Thankfully, following a full battery of labs, EKG's, a stress test and CT scans, the docs confirmed there were NO heart issues. In fact, I was pretty impressed I did so well on the stress test and learned even my cholesterol had dropped.

I share all of this to say that sometimes we need an abrupt STOP in our lives. This gives us time to ponder where we are and if that's really where we should be, and want to be. I'm not done re-evaluating my life yet - not my a long shot - because frankly that's a lifelong process. I don't think I'm fully recovered from the shock of a hospital stay and the realization there COULD have been heart issues noted. Then, how would I have acted, what would I have thought? It's a little numbing to consider the possibilities but I don't dwell on them.

To me, God is bigger than anything life can throw at me. Still, to think a serious diagnosis could have been reached is sobering. I think of my four kids and I can't imagine missing one moment of watching them grow. That's enough to give me pause - and to be grateful for the time I do have.

How Do We Close the Organ Donation Gap?

I just read an interesting article by Dr. Andrew S. Klein, a former chairman with UNOS. He reveals the problems our country faces with organ donation. In 2011, there were more than 110,000 people awaiting transplants but only 28,465 transplants completed. How can this be and how do we narrow this enormous gap? (You can read his entire article here.)

A huge part of the problem is apathy towards transplants remains. The number of people affected by transplants of any kind has certainly increased over time but that fact hasn't penetrated the culture-at-large. While Facebook's initiative to increase organ donor registration is a great start, we need so much more work done on a local level.

This can include any or all of the following:

- Letters to the editor of your local papers, print and online

- Reaching out to local educational institutions, from high schools to universities

- Contacting local businesses to help with information outreach

- Booking speaking engagements with local community service organizations


Many of you know I'm writing a book about our personal experience with transplant. Part of my hope for this book is that it will touch people who've never thought much about organ donation/transplant. Awareness is certainly key, but action is required to make a dent the statistics noted above.

You could probably come up with your own list or add many items to mine. Feel free to do so and post a comment with your suggestions, or what you're already doing to advocate organ donation.

Real Heroes, Part 2: The Parents

This week's segment of Real Heroes focuses on the people who love those liver kids: their parents. These aren't just your average, everyday parents. These are people who must withstand regular bouts with disappointment; deal daily with many forms of stress; face extended time away from their spouse and/or other children; and who must be their child's advocate at every turn.

This post in no one seeks to take away from parents who are raising kids without life-threatening diseases. We all know how difficult it is to parent. Period. But I want to celebrate those heroes who  don't step out of the fire even when their bodies might be completely consumed by a poor prognosis, countless nights in the hospital and feel the strain on their marriage.

We've met many liver parents online and in-person. I'm continually struck by their tenacity, their vulnerability and their strength. They're willing to do ANYTHING in the best interest of their child. They're willing to RISK anything to insure their cared for the best way possible. 

Even these heroes need places to vent and meltdown on occasion. A real hero still needs someone to lean on. The strain of liver disease, transplant and the waiting, waiting, waiting would be insufferable if we all sought to do everything on our own. It takes a special person to acknowledge they need help and to seek it. 

The other parents who offer suggestions, share their own journey and walk alongside another families - they are part of this lineage of heroes. It's imperative we embrace each other no matter what road we're walking at the moment - initial diagnosis, awaiting a transplant, or post-transplant. 

Heroes are willing to sacrifice EVERYTHING for the people they love. That describes liver parents to a T. 

Could I Have Done Better?

I was contemplating life as I walked during a work break. I find  myself doing this often, for good or bad. Since I've started writing Sarah's story I find myself looking back at that time in our lives for good reason.

I also catch myself lamenting things undone. Or not done well.

I strive daily to not hold on to the past, to have no regrets. But sometimes a creative mind can be a double-edged sword. One of those times was today.

Looking back on the segment of Sarah's journey where she and Patty were at Children's Hospital for the bulk of two and a half months, I recalled what I'd done to keep my family intact and as healthy as possible.

It was painful to consider what happened. Sure, I'd started a new job two weeks before Sarah's initial diagnosis in November 2008 and was working hard not to give my employer a reason to let me go. They were very gracious and supportive throughout our entire journey and I remember them fondly.

There are things I don't remember so fondly. I wasn't present for my three older kids like I should have been, both emotionally and physically. It never hit me to work on getting Patty breaks from the hospital until well along in the journey. I tried to keep things afloat but in the end it's only by God's grace we didn't completely sink.

As it should be. When we think we have everything down, or that we should survive & excel through every trial in life, that's when we get hit the hardest. I know from a lot of prayer and personal reflection that Sarah's journey was a struggle but also a beautiful episode in our lives. We've seen the blessing that's come as a result but I still wonder: could I have done better?

The Things That Matter

I've been seeing the photos and news stories this week about the many fires burning in the western United States. I'm particularly stunned by the huge fire the Colorado Springs area. We have friends in the area and were able to visit there a few years ago. It's a gorgeous part of the country and to see the destruction wrought by these fires is heartbreaking. Thousands have been evacuated and many will lose their homes.

This is a sobering reminder about what is really important in our lives. Some of us grumble day to day about not being satisfied with this, or about someone who is always doing that. We can become frustrated at the most trifling things. And we begin to take life for granted. I doubt any person leaving behind their home is taking anything for granted right now. They might return to a pile of charred ruins. Their memories will forever hold reminders of their loss.

So, let us pray for the firefighters bravely waging battle against the flames and for those who have to evacuate, that no life is lost. Because in the end what really matters is what we carry in our hearts and the people around us.

Real Heroes, Part 1: Our Liver Kids

For those of us who live in the world of liver disease, we speak often about those who’ve impacted our lives for the better.  These people are our heroes.  I’m starting a series this week about these heroes. The first three segments will cover my own personal journey and a bit of Sarah’s story. The follow-up segments will include other liver families who’ve graciously offered to share their own stories. I hope to see you here often and feel free to chime in with your thoughts and comments.

REAL HEROES: OUR LIVER KIDS

It may seem odd to include the very ones most affected by the myriad of pediatric liver diseases. After all, they are often infants and toddlers. How they could be heroes? Ask any parent of one of these kids and you’ll discover why.

One of the most eye-opening things I witnessed during our journey from biliary atresia through transplant was Sarah’s strength and joy. You could never tell she was a sick by her behavior or sunny disposition. She always had a charming smile ready to brighten someone’s day. She wanted to play and see other people. And she loved her siblings so much.

Our kids exhibit qualities many adults struggle with or lack: perseverance and the ability to adapt to any given situation. Adults like to fool themselves into believing we can adapt to any situation but our liver kids resemble chameleons. Need to be poked several times per day for labs? No problem. Sarah reached the point she’d hold out an arm and say “pokie”. Have to sit there in the bed and be poked & prodded by doctors checking out their tummy? No problem. She’d just flash her trademark smile and generally let them do what they needed without complaint. These kids don't see uncertainty in their future, only the possibilities.

These little warriors seemingly ignore what lies before them, insisting that each day IS precious and to be lived to its fullest. We can learn so much from their determination and their unwillingness to give up. These kids are small but they fight well beyond their stature. I have yet to meet a liver child who doesn't have a beautiful and charming personality. It's almost like they're more concerned about the people caring for them then they are about themselves. That's love. That's strength. And those are only a few things that make them heroes in my mind. 

Saying Goodbye

It was a sobering weekend in BA land as we lost another precious angel, Riley. This little girl was a fighter. Those of us who live in the world of liver disease know what determination our kids carry as they battle various diseases. I like to tell Patty that these babies are so more resilient than adults. But these kids, they battle and claw and fight. Riley was at the top of that class.

She battled through not one but two liver transplants and may have received another if her little body hadn’t finally absorbed so much damage she was unable to go on. Riley was a little soldier, unwilling to just give up. She owes a lot of that attitude to her parents, who fought alongside her; who sang songs, prayed and refused to give up.

Each time we lose one of our precious angels it’s so painful. It’s more than a punch in the gut. It’s like a piece of us has been torn away and the wound will never heal. It couldn’t possibly do so.

But then you think of the little angels. I believe in God and in heaven where all things will be made whole again through Jesus Christ. The precious ones we lose are now free of pain, free of medication, free of IV’s and PIC lines, and all the other foreign things that invade their bodies on a daily basis when battling for their lives.

The wounds may be slow to heal but they will heal. Because we carry the special memories of these little ones with us for the rest of our lives. No matter how brief their stay with us, we have all been blessed to know them. Our lives would have been so different without them. We wouldn’t trade knowing Riley and our other angels for anything in the world. They are our priceless treasures, and like our other children, the very gifts of God.

Financial Incentives for Organ Donors?

There was an interesting discussion the other day in one of the online groups I follow. Due to the dire situation in our country of not finding enough organ donors, the issue was raised about whether we should begin offering compensation to encourage organ donation. I see this question as being primarily posed to potential living donors. Personally, this becomes a very gray area to me. And it opens a huge can of worms.

If we remove the altruistic reason for donation, do we really want to walk the road to where money talks? That's the case in so much of our society already, including donating blood. How much will this harm the entire case for organ donation? I can see it now: "Need some extra money? Consider donating a kidney for $XXX today!"

What are your thoughts about offering people money so they will donate a kidney or part of their liver? Do you see anything wrong with it?

A Life Well-Spent

It’s been one of those weeks. On top of it being Memorial Day weekend, I’ve heard just enough heartbreaking news to get me thinking about life.  Our culture is so fearful of death, we tend to ignore it completely until it strikes close to us. But do we really ignore it or do we just avoid it? Life is brief, a vapor, a blade of grass, in comparison to eternity. We have no control over when it ends.  I expect that’s why so many people choose to deny it’s presence.

We like to believe we’re in control of our lives but we’re not. We can’t control a disease for which there is no cure, or a drunk driver from snuffing out young, innocent lives. I remember reading the story of a man who recalled spending some precious time with one of his daughters when he could have said, “wait until later, I’m busy right now.” In a matter of days the family’s van was caught in a flash flood. The father was sucked out an open window and swept away. He survived but his wife and children died. Do you think he treasured that memory of time spent with his daughter? What if he had decided he was too busy to take time out?

People in the United States are some of the most narcissistic in the entire world. We’re so consumed with “me, me, me” that no matter how much we talk about loving our families and friends, the fruit is in our actions and what we deem important.  Our lives are far too short to waste on trivial things. They’re too brief to turn down the opportunity to connect on a deeper level with a loved one or friend instead of pursuing some vain interest.

We all have opportunities to impact lives for the future, whether it be our children, our spouses, friends, and even strangers. We leave no legacy in how many video games we played, sporting events we attended or movies we watched. Our legacy will be found in how we impacted those closest to us.  We’ll be remembered for how we spent our lives and the example it leaves for those who follow us. 

All Those Years

Time waits for no man, is the old saying. It's certainly the case for me. Today I turn 45 and honestly, I'm not sure where the last half of my life has gone. When people say your life is a set of seasons, I tend to agree with the sentiment.

Since I left the US Navy in the early 1990s, I've experienced several distinct "seasons": a wandering time; a settling down; and a questioning time. The first two seem obvious enough and most people have experienced those in their own lives. For me the wandering time was a tough one. I'd gone from the security of the military into a recession and job uncertainty (sound familiar?). It was years until I found steady employment and that followed a move to another state.

The settling time followed when I met and dated my wife, Patty. We got married and now have four beautiful children. During this time I set my writing aside for family. I'd always believed writing would be a major part of my life since it had been foundational for me, carrying me through difficult stretches in the past. As it turned out, I never gave up writing, it just lay dormant for a time. After I started college, I realized writing did have a place in my life and I haven't looked back since. So it was a win-win: marriage & kids, and the revival of my writing.

Finally comes the questioning time. Maybe for you it's wondering what you're going to do with your life, or have you been a success in the eyes of your parents and friends. Perhaps it's whether you lived up to your expectations or promise. I still grappled with what I wanted to be when I grew up but that paled in comparison to the world of liver disease. That's when the questions became fast and furious: why did this happen now, with our fourth child? How can we keep our family together when we're physically separated? Will the older children be okay? Will our marriage survive the strain? I know those of you who've experienced liver disease have asked some or all of these same questions. There are no "right" answers. It's a matter of survival and faith.

So on this occasion of my 45th birthday, I urge you to recall the seasons of your life. Review what you've done well, maybe not so well and what you wish you'd done differently. But then do me a favor - close the book, don't look back again. Keep your eyes on the road ahead and make those current seasons count.

"Stones" of Remembrance

I've been neglecting this blog far too often and I apologize to my faithful readers - all two of you. :-)

Seriously, this is a post I've been wanting to write for some time. Not long after Sarah received her liver transplant in April 2009, I started considering all the positive influences we'd witnessed as a family during our stressful days leading up to it. Despite our circumstances and struggles, God made Himself evident to us throughout our journey. To commemorate His faithfulness, I'd like to look at our "stones" of remembrance - those people, things and events that made our lives bearable during Sarah's original diagnosis all the way through transplant.

- Friends: We would have been nowhere without our dearest friends. People who sacrificed their time and own comfort to meet with Patty at Children's and who even stayed with her over many nights; our kids' "aunties and uncles" who made themselves present when Patty couldn't be with the kids. The friends who checked in on us, faithfully prayed for us and lifted us up when we stood on the edge of a breakdown.

- The Body of Christ: Never before in my life have I witnessed the impact of the Body quite like I did in the midst of our ordeal. Facebook became a soothing balm and vessel for people from all over the world to share our adventure, and their prayers. Many people we've still never met in person but their faithfulness and love to people they didn't know is forever etched on my heart. Gifts, food, a showering of love - all of these were evident from so many people, it's still difficult for me to conceive. The love of Christ was clear and present.

- Family: Our children may never understand just how instrumental their grandparents were in relieving some of the pain and uncertainty that could have shadowed their lives had the older generation not been present. Why my parents bought a house much bigger than they needed was a mystery - until Sarah's diagnosis. How  the Walkers and Krafts always made room for our kids, concerned only with providing memories and stability, will forever be a blessing to us.

- Hope: At the end of each day, realizing we weren't on this journey alone and that it wouldn't last forever, hope stood reaching out to us. The hope and promise of a different future, but a future nonetheless.

- Peace: Even in the turmoil of 52 out of 61 straight days at Children's did not completely remove God's peace from our hearts and minds. Some times I'm certain we didn't even really know where that peace came from, or how we could keep standing.

Was every day perfect? No. Did we struggle a lot? Yes. In hindsight, are we grateful for the experience? I'd have to answer, yes. The people who impacted our lives and whom we've met or had the chance to positively influence has been worth the pain. You never believe that when you're riding the tidal wave of pain and uncertainty. It's only much later that you can look back and view things with clear vision, understanding that every thing does happen for a purpose.

April 24, 2009: The Day After

April 23, 2009: Three Years Later

Sometimes it amazes me how quickly time passes. It seems like only yesterday Sarah was given her gift of life. Yet it’s been three years this morning since that turning point in our lives. Around 6:20pm three years ago Dr. Healey and the surgical staff started the lengthy procedure of removing Sarah’s dying liver and replacing with a healthy one. While our joy was unspeakable, someone experienced pain and loss with the death of their child. It’s still difficult for me to understand why one life must end for another to continue.

We’ve been blessed beyond our wildest dreams by four wonderful children. And we fully understand that three years post-transplant, we’re more blessed than ever. As I re-read my blog posts from three years ago, I have to laugh at how matter-of-fact I was recording those events. As I begin writing a book about our journey, I’m finding the emotions and mind-numbing uncertainty are still easily recalled and experienced. I don’t think this will change no matter how many years we walk this path.

Three years. That’s most of Sarah’s young life. How long we’ll have together, no one can say. Not one of us has a guaranteed number of years on this planet. Sarah’s battle scar is a daily reminder to treasure each moment. And no matter how corny or trite that sounds, we really do. Treasure. Each. Day.

Surviving Days of Diagnosis

You've heard the story before. You head in for a physical and your doctor enters the room, somber look on his or her face. "Maybe my cholesterol is a bit too high?" you think. "He's probably going to say I need to lose a few pounds."

"Mr. Jones, you have cancer." Buzzzzzz. No, that's not the answer you anticipated. You look at him like he just spoke in Swedish. He sits down by you and begins to discuss the situation with you. Many of us have felt the jab in hear chest when learning of a diagnosis. You know what I'm talking about.

Your child has biliary atresia.

It looks like leukemia.

Her heart's just not working like it should.

Heartbroken. Shattered. Disbelieving. This is just a minute portion of emotions and thoughts you might be feeling. Why her? Why US? There's nothing more difficult to apprehend or digest than a loved one being diagnosed with a disease, of any kind. It doesn't matter if they're newborn or 60 years old. The pain is palpable. 

For those of us who have kids born with liver disease, it's an especially difficult road. The joy of your newest addition to the family coming home, making your home complete. This isn't the time for such jarring news. I've been on the wrong side of a couple of diagnosis in my life. It's never easy.

When I was 13, the school nurse discovered I had scoliosis. For those unfamiliar with the term, it's a curvature of the spine. It occurs more frequently in girls and can be caused from growing too quickly though there are possibly some genetics involved. 

Perfect timing for a kid who was already a little shy. The curve was substantial - 30 degrees - and the best recommendation at the time was wearing the Milwaukee back brace --- 23 hours per day. That's right, I got to exercise without the brace and otherwise, day or night, sleep or awake, I had to wear it. For four years.

But I survived and the full story is for another time. Most of you know about the 2nd diagnosis in my life: Sarah's biliary atresia. I can't put in words how I felt when it was confirmed. Numbing is the first word that comes to mind. I still don't know if I've recovered and we're just about to celebrate Sarah's 3-year transplantaversary in one week. 

There's no easy path to walk through such things. All we can do is get up each day and treat it as special as the previous one, hoping and praying, there are more days ahead with those we love. Days we can share laughter and love. Days we can share our pain with others, since we can't possibly stand alone. Days we even shed our own pain to be there for someone far worse off than our family. 

Too often we think we're the only ones going through such debilitating circumstances and no one can possibly imagine what we're feeling. It's true that many people who haven't experienced caring for seriously ill children themselves find it hard to comprehend. Then there are the rest of us. We are a community of fighters, advocates and survivors. We DO know what the other person is feeling because we've lived it ourselves. 

We get up each day because we must. We will not give up. We won't give up on child (or loved one). We won't give up on our family. We won't give up on each other. I believe God allows things to happen for a reason, that by persevering through painful times we grow in strength, character and hope. And through that we can share with others.

My father-in-law was diagnosed with prostate cancer last week. He'll be 75 this year. We're grateful the doctors caught it early but the fact remains he will need a full 5 days per week for 8 weeks chemo treatment. No fun. We've been down this road before and we're stronger because of it. Now, we get to walk it again and hopefully, we'll be able to see another diagnosis beaten down.

Walking on Sunshine

I couldn't resist naming today's post that familiar title from the Katrina & the Waves song from the 80's. It's nearly 60 degrees in western Washington - a temperature we have not seen since October. The sun is warm on my face with a refreshing breeze to boot. My kids are all running around me, riding their bikes, kicking their soccer balls and relishing the bright day. We even took a little batting practice with our foam bats.

I'm ready for spring to arrive but more than that this time of year helps me reflect on what brings joy to my heart. Flowers and trees are in bloom. Beautiful for those of us who don't have allergies but not so much for those of us who do. People are out walking, running, riding their bikes, walking their dogs - you know the drill. But I'm talking about sunshine in our lives.

We're three weeks away from celebrating Sarah's 3-year transplantaversary. It's amazing to consider where we stood in April 2009 following her nearly fatal bleed and severe varices. We could have lost her forever in March 2009 if (and I'm fairly certain of this) my wife, Patty, had not been onboard the helicopter that rushed Sarah to Children's Hospital.

Instead, we've been blessed with God's grace and mercy in so many ways. Sarah's a rambunctious, giggly, sometimes-troublemaker (you know, the normal 3 year old!) who chases her siblings around, wants to play all the games they do and go everywhere with us. I'm so grateful for where we are and the future in front of us.

What's your sunshine moment that you carry today?

Contentment

Contentment. The word inspires a world of images. Lying on your couch with your kids watching a movie. Curled up by the fireplace with a good book. Shopping for a sharp new wardrobe. Watching the sunset on a clear summer day with your sweetheart. Admirable things, all. But can we discover a deeper meaning to the word?

I’m currently walking my own journey in search of contentment. I’m very content in some aspects of my life but not all of them. As any parent of a special needs child understands, every day is precious but that doesn't necessarily bring us contentment. The Apostle Paul wrote that he wanted to be content at all times, no matter the circumstances or what may be swirling around him. It’s this kind of contentment I’m seeking. Is it even realistic to  pursue such a thing?

How can we reach a level of contentment where no matter what lies behind or in front of us, it won’t affect us? Being content is more than simply enjoying the moment or relishing a memory in the making. Webster’s 1828 Dictionary defines contentment as “a resting or satisfaction of mind without disquiet.”  A deeper meaning can be found when defining the root word, content: “satisfaction which holds the mind in peace, restraining complaint, opposition, or further desire.” I wonder how many people actually experience contentment in that context. Do you? How do you know? How does being content enhance your everyday life?

Discovering true contentment may take a lot of work and focus, but in the end, wouldn’t you rather live there then in the craziness that so many people do?

Pondering Our Past

I'm working on a series of essays & articles about my dad growing up on a duck club in the Bay Area cities of Irvington and Fremont. It's fascinating to listen to his stories or reading the emails he began writing over 10 years ago. This exercise got me thinking about the past. How often do we hit pause on our lives, take a few minutes, or maybe hours, and consider our past? Speaking for myself, I don't do it nearly enough.

There are several reasons we should ponder the past which could positively impact our lives. Recalling that past:

1) Strengthens family bonds. Whether this is retelling family stories to your kids or reconnecting with your parents or siblings as you grow older, your perspective can be altered.

2) Brings a greater understanding of who we are. You may never have known why you acted a certain way or why you clashed with certain people, were blessed with certain talents and not others. Revisiting the past can fill in those holes.

3) Consider lessons learned. Did we repeat a mistake our grandfather made? Did we alter our family's future by removing alcoholism from the equation? Did our parents give us a positive tradition that will be passed on for ages beyond us?

4) Nurtures gratefulness. When we're young men and women,  we seldom consider what sacrifices our parents or those who raised us made. Or maybe gratefulness for removing yourself from a dangerous situation strengthened you as you matured. It's imperative we look for the good things in our lives that changed us. Gratefulness can prevent seeds of bitterness or disillusionment from blossoming.

I'm certain you could add many items to this list and it goes without saying you don't need to just apply this to your familial ties but your past careers, relationships, education, spiritual experiences, etc. Try to set aside just a little time today and ponder your past. Thank those you need to and teach those who need to know.

Spring Forward

Last time I talked about taking steps forward in your life. It's never easy, no matter steps you're talking about. The effort is worthwhile and necessary to grow. It can be painful, excruciatingly so. I've begun experiencing this firsthand. I've mentioned briefly here that I'm starting to write about Sarah's journey through her liver transplant. I wasn't sure what I expected when I began. I wasn't naive enough to believe that it would be an emotional-less, pain-free trip.

My own experience has a lot of "holes" in it since Patty was the one living each day with Sarah. I kind of appeared and disappeared like a genie in the lamp because of my new job and doing what I could to bring a little normalcy to the other kids' lives. Of course, even that didn't progress as I would have liked. Maybe that's why I feel a sting while writing about it. I struck out in a lot of ways and fell woefully short in many instances.

Even typing those words is difficult. I couldn't be there for Patty when Sarah's life hung in the balance following her bleed. I couldn't be there for my kids' each night because it caused more hurt for them to spend a short time with me and then watch me leave again.Many nights I sat alone at home crying out to God to bring me strength, to take the pain away from Sarah, from Patty, from the other kids; to help me stand strong even though I felt like a failure.

Writing has always been therapeutic for me. No matter how awkward, shy or disconnected I might be in social arenas, with my writing I could say things I never could physically utter. And much better than I could possibly formulate in person. So, why am I writing all of this? I suppose to some degree its another step in my own healing. You would think after 3+ years I'd have moved beyond a lot of the pain. But it's become apparent these things take much longer than that, even though I'm fully aware how far God has brought me and what a blessing the experience has been. A blessing, you say? Yes, but I'll save that discussion for another time,

Brevity is not my strong suit but I'll cut to the chase. No matter the circumstances you face or what is keeping you from moving forward, the only way to begin to heal (if that's what you need) - even in small stages as I have - is to actually MOVE. Only then can you begin to actually digest what you've lived through and start to see the sunrise on the next chapter in your life.

Taking the Next Step

I've been pondering life a lot lately. If you know me at all, you'll understand I do this pretty regularly. I know where my ultimate destination lies, that's not my concern. It's more about "what happens next?" We face choices every day we live on this earth. Those choices added together create the fabric of our life - what we do, where we go, who we know. You may be at a stage where you're hitting on all cylinders. Perhaps you have a great spouse, a great job, or feel security throughout your life. Those are all great places to be.

But what is next for you? What steps do you need to take to reach the next level in your life? Maybe you need to reach out to an old friend, or someone who could use a friend. Or maybe you've been unemployed for many months or even a couple of years & you just don't know what to do. You might be expecting your first child and aren't sure what kind of parent you'll be. Rest assured you are not alone in any of these instances.

The difficult thing for all of us is to make a conscious decision to move forward - to chase that elusive "dream" job; to grow deeper in your faith; to break out of your timid shell. Whatever it is the hardest thing to do is take that first step. I'm living there right now as I consider a number of areas in my life that are requiring me to step out and take a chance. One of these is my writing, another is my involvement with organ donation awareness, and there are others. Not only that, but each of these require me to be willing to fail. Are you willing to step out today and fail? Failure is not the end of the world, simply another lesson in how to succeed and reach the next stage of your life.

Go ahead and jump. You won't be alone. What areas do you find yourself challenged to move forward this year?

Living in the Land of Acronyms

ALT. GGT. AST. EBV. PTLD. Residing in the world of liver transplants can leave one's head spinning from the number of acronyms in daily use. I thought they used a lot of acronyms in the aerospace industry!

These letters all mean something. The first three combinations - ALT, GGT, AST - tell the liver story. If they're in the lower range, everything is running smoothly. If they jump upward, then there is the possibility of acute rejection.

EBV - the Epstein-Barr Virus (also known to us as mono), is common in most human bodies but can be lethal to a transplant recipient. When this number shoots through the roof (30,000+), complications can arise, including PTLD.

PTLD - post transplant lymphoma disease - is one of the potential adverse affects of immunosuppression. This cancer if detected early can be treated proactively and is not life threatening. Still, the fact it IS cancer is enough to scare every liver parent out there.

My reason for the very brief (and hardly complete) explanation of these is that this week Sarah's liver numbers elevated; her EBV rose to above 2,000; and PTLD returned to our vocabulary.

Thankfully, as of today, Sarah's labs improved removing the need for a scheduled biopsy Thursday afternoon. The EBV came back negative, so no immediate concern there. All that remains is PTLD. The docs orders a CT scan when the ultrasound discovered swollen lymph nodes in both Sarah's neck and stomach. We have to wait for the oncologists to review the scan Friday before PTLD can be completely eliminated but one of our transplant doctors seemed fairly certain the swollen nodes were not the result of PTLD. We return to "wait and see" mode until Friday around 10am. I'll be posting results on Facebook and here, time allowing.

Quote of the Week: Blaise Pascal

I love a good quote so to help me post more regularly and (hopefully) to make you stop and ponder life at least once a week. This time, from one of the greatest minds to ever live. Pascal was brilliant and lived far too short of a life. Renowned as a mathematician, he was also a philosopher.

"As men are not able to fight against death, misery, ignorance, they have taken it into their heads, in order to be happy, not to think of them at all."

Living a Dream When Your Life is Anything But...

A dear fellow liver mom and true warrior, Erika White, whose 5-year-old daughter, Emerson, is terminally ill maintains a blog detailing the ups and downs of her family's life as Emerson battles to live another day.

As I've contemplated my own New Year's goals and dreams, I read Erika's January 11 entry. It's pure magic. But don't let me spoil it. Read it for yourselves and disseminate it as widely as possible. THIS is what life is about, people. Life is precious and the days we have are numbered. Treasure them - really, treasure each single minute you have.

New Year, New Challenges, New Decisions

Happy New Year to all my blog followers! I trust your Christmas was exceptional and full of joy, love & laughter. We enjoyed the closeness of family & watching our kids' eyes light up with each new gift they received. Despite the goldmine of gifts, I'm grateful my children know the true Reason for the season.

 Inexplicably, yet another year has passed. I'm beginning to believe my prayers back in my childhood (and especially during school!) for the days to pass quickly has been realized the older I get. Didn't we just have Christmas? Didn't we just celebrate all the kids' birthdays? Didn't I just turn (gulp) 44 years old? Coming to grips with the fact I can't stop the continual march of time is one of those issues I need to surrender to God in 2012. Seriously, it's sometimes very difficult to watch things change so much in a seemingly short stretch of time.

With a new year brings new challenges and not just letting go of my pointless battle with time. I'm nearly two months into a new job and that brings its own challenges & adjustments.

There's the challenge to keep Sarah healthy, as best we can. She's made it nearly six months in between clinic visits and we are grateful. She's battled colds and coughs throughout but nothing that's warranted additional labs or hospital visits.

How about the challenge of keeping up with three kids' homework and involvement at school? I was able to spend the first two months of the school year volunteering and sharing time with all three at school. A joyous time, to be sure. Now, the trick is to keep up with spelling tests, handwriting, science projects, book reports and everything else!

Or, the challenge of setting aside time for my marriage? We all know muscles atrophy over time if they are not utilized every day. Marriages can do the same. The challenge this year is to make the time (not find the time) to nurture my marriage every week, whatever form that takes.

And decisions? There will be plenty to make this year. Finally complete my degree or not? Take substantial writing courses to hone my craft and create publishable work? Visit Disneyland or put it off another year? Perhaps the last decision is one my children find very important but you catch my drift.

All of us have things awaiting us this year. What are the challenges or big decisions that face you this year?