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!