Sheriff Sarah

Sheriff Sarah

Tuesday, September 25, 2012

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.

Wednesday, September 19, 2012

Moving Ahead with Telling Our Story

Wednesday, September 12, 2012

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.

Monday, September 10, 2012

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!

Sunday, September 2, 2012

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.