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....
No comments:
Post a Comment