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?