Cross-pollination

There's been a bit of cross-pollination between this and another of my blogs...I'm going to post this little sermon I wrote on parenting and family, since it relates to the heart-journey:

Wednesday, July 1, 2009

And the Sins of the Fathers...
The intangible inheritance parents pass on to their children is the earliest impression of God’s character. Unfair as it may be, as big of a responsibility it is, children learn about God from the way their parents treat them—it’s no coincidence that we often perceive God as a father or mother figure. In the early years, parents are their children’s creators, providers, nurturers, caretakers, and teachers. Parents can give or take away. Their word is (usually) law and their pronouncements are judgments and decrees. Parents can be unfair and mysterious to a child, with ways that are unknown (“because I said so, and I am [God]. Who are you to question?”).

As a young child, your parent pretty much IS God—your primary example of love and relationship. The loving aspects of parenthood are a tiny slice of God’s perfect parenthood. The selfish, fallen aspects are the mark of our human, earthly status.

It took me a very long time to realize how my upbringing was reflected in my relationship with God. Having very critical, unpredictable parents made me perceive a God that was judgmental and unpredictably loving. A God who thought I wasn’t good enough—a capricious and whimsical God. This image of God was dysfunctional, and for years caused me to doubt and distrust God’s nature.

If we take a good look at how we view God, we often find that the picture was influenced by some of our earliest childhood experiences. Maybe for some of us, it felt like God was never around or emotionally unavailable. Maybe we couldn’t live up to his larger-than-life personality or expectations; maybe we never felt good enough. Maybe God was cold and distant, uncaring or selfish—maybe a user…maybe unreliable, egotistical, arrogant, hypocritical.

Only after I became a parent myself did I realize how God might really see me and How He might really Be. First of all, my son is not “perfect,” just as we are not perfect in the eyes of God. He was born with a single ventricle heart. But this does not mean I love my son any less. Indeed, children with special needs are called “special” for a reason. I won’t go so far as to say that “heart parents” love their children more than “normal parents” (after all, I wouldn’t know for sure)—but almost. I’ll stop just short of saying that. My son was born with a defect, as we are all born with the defect of original sin. I think God wants to see us succeed in our spiritual journeys all the more because of our human disadvantage.

Secondly, the life our son is living is not the life we had planned for him, much like God’s original plan for humankind is not what we are all living now. Our original plan for our son was an idyllic babyhood filled with swim classes at the YMCA, baby yoga, and travel—not open-heart surgeries, long hospital stays, and countless medical procedures. Am I disappointed in the situation? Yes. Am I disappointed in my son? No. My son's life is filled with a lot more pain and suffering than I would have ever wanted. Now I understand some of the pain God must feel at our human suffering.Parents see their children as their most perfect creations.

Parents take pride in their scrawny, puny newborns and in their eyes, these newborns are the cutest to ever grace the universe. As our children grow older, we set rules for them that they don’t always understand. Sometimes we become frustrated, angry, or hurt when they are ungrateful or when they disobey us. But we always forgive them when they truly repent, no matter how grave the offense.

So where does this “punish the children for the sins of their fathers” idea come from? Deuteronomy 5:9-10: “I do not leave unpunished the sins of those who hate me, but I punish the children for the sins of their parents to the third and fourth generations. But I lavish my love on those who love me and obey my commands, even for a thousand generations.” I’m not a reverend, but my layperson interpretation of these 2 verses is that love is the greater force here—a force that sets us free from the examples of previous generations.

Maybe what God meant was not that He would exact punishment for its own sake on a sinner’s children, but that repeating the mistakes of one’s parents is punishment enough, and is the intangible inheritance of a human primary example. It is a warning to parents that history repeats itself, and can put subsequent generations at considerable disadvantage. Indeed, to overcome the sins of one’s father or mother, it takes conscious realization, supplication, and a little divine intervention. One of my good friends mentioned years ago that only God could break the patterns families can fall into and pass down through generations, and that we need to consciously ask God to shatter the chains that tie us to our forefathers. It can be something as serious as alcoholism, abuse, depression, and abandonment to more oblique family attributes like disapproval, pride, or sanctimoniousness. Take a good look at what you’ve inherited from your family—then ask God to set you free.

Going back in Time: CHD Awareness Week

I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!

February 11, 2009

In honor of Congenital Heart Disease Awareness Week, which is this week (CHD Awareness Day being 2/14), I've been thinking about what awareness means. We all have causes that we care about, but oftentimes we feel like we can't do much to help--maybe we don't have enough $ to give to all the causes we'd like to, or enough time to volunteer for them, or maybe it's just not in our personality to get out there and shout from the rooftops.

But CHD is a cause that every one of us can do something about, simply by being "aware." And I don't mean just by knowing the facts--the facts that by now I've heard so many times that I have them memorized (CHD is the most common and most fatal birth defect...1 in 10 children is born with CHD...). I've uncovered another, different sort of fact in the past week:

There is a different type of powerful awareness; 1 that goes beyond medical facts, and is something within all of our powers...and it is this: the power of a "heart" child's picture or story can save lives. Someone mentioned recently that when his wife's ultrasound showed HLHS, they were given the 3 typical options: abort, elect the 3 surgeries or heart transplant, or carry the baby to term and opt for "compassionate care" until the baby died. Of course, every child's prognosis is different, and there are times when any of these options might be appropriate. But in cases where prognosis looks hopeful, the choice can boil down to how the case is presented by medical professionals. Even at Children's of WI, which is one of the leading facilities for treating HLHS, we were told on 2 occaisions that we didn't "have" to go through with "this." I can only imagine what it must feel like at hospitals where the staff doesn't have the same expertise.

What really turned it around for the couple I mentioned above, was going online and seeing pictures and reading stories of other children with HLHS who were happy, loved by their families, and frankly radiating with the special glow of a child who has been fighting the good fight. I can say the exact same thing: although we were determined to have Kieran, what gave me hope (and still does) is knowing there are other kids and people out there with HLHS, and seeing their pictures whenever I want (online) to inspire me and know that we're not alone.

To be aware of Kieran is to be aware of CHD, and if you share his story and pictures with anyone and everyone, it could someday give great hope to someone in need. If 1 in 10 babies is born with CHD, it won't be too long before someone you know is saying to a coworker, or friend, or family member: "I know someone who went through that, and he's doing great."

Once I saw pictures of the surgeries, I thought to myself, "I can handle that. It's not as bad as I had imagined." Seeing Kieran's pictures from the surgeries, you might not know him. They might startle you at first. But to an expectant parent who's imagining only the worst, confronted with a diagnosis they never knew existed, and being terrified by all the medicspeak and "full disclosure," they can be a source of relief.

So, I just want everyone to know, I encourage you to share Kieran's story. By all means, wear red if you want, or a bracelet of some color, but use it as a segue to discussing it on a more personal level. We all know someone whose life was touched by CHD (other than Kieran!). I know I'm not the only person reading this who remembers Danny. Danny was filled with life and love and like so many children with disabilities or healh problems, he gave way more to the world than he got back. He was treasured and favored...and he was happy. He died when we were teens, but he was special and will not be forgotten. His life was not without value because he died young. One of the wisest things I have ever heard is, "it's not how much time you have, it's what you do with that time." I wish everyone could live with as much light and love as Danny did...people who live 80 years often do not have what he had. So, even if something tragic happens and Kieran's life ends up shortened due to his HLHS, his life will never be in vain. He's happy and loved, and will hopefully save others' lives too. It's already started, with sharing his story. Today we got a letter from the Children's Miracle Network asking if we'd like to be an ambassador family for stuff like radio and TV stories, benefit marathons, etc to share our story with others. It couldn't have come at a better time....

I'm Finally Doing This...

Starting a blog about my life as a mom of a son with HLHS, that is. I have to strive to make this my own space, and not a page about my child's journey per se. Some of the best travel advice I've ever received came from an HLHS dad who said of his daughter, "HLHS is her journey, not ours. Our journey is to be her parents."

Every day, I have to remind myself that HLHS is not my journey. I cannot live Kieran's life, and I cannot take on what he has to. But I can embrace my role as his parent.

Part of my journey is the desire to give hope to others along the way. My experiences traveling and living abroad have equipped me for my journey into the unknown and the less-visited areas on the parenthood map. My geographical travels have taught me that life is all about experiences and relationships; that it's not what you take (baggage), but what you take with you (experience, widsom, understanding). And of course, what you give.

A true traveler knows the journey never ends. That if you let it, the journey will continue to take you to places of surprise, coincidence, reflection, and meaning.

If I can make a difference in someone's life, I consider life worth living. I am thankful that I was able to help make a difference recently. I did not do it single-handedly, but that doesn't matter at all; in fact, I was glad to be in solidarity with other HLHS parents.

That's not to say that this blog is necessarily going to be all about hope and optimism. Watching Michael J. Fox's new show recently, Adventures of an Incurable Optimist, I wondered yet again why many of my friends think of me as an optimist. I am way too critical to be a true optimist. And way too honest. But I believe, in the HLHS community optimistic honesty is a virtue that is truly valued and appreciated.

No, this blog does not have pretenses at being a source of seasoned wisdom or a panacea for the many difficult issues parents of kids with HLHS face. Rather, it is the story of my own journey, which is a learning process, an online space I've finally created for myself on this pilgrimage.