Sheriff Sarah

Sheriff Sarah

Monday, April 23, 2012

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.

Monday, April 16, 2012

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.

Monday, April 2, 2012

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?