June 4, 2013
What is it going to take?
Last night I had the pleasure of participating in my first ever 'twitter party'. This makes me giggle because I was actually nervous, more nervous than going to an actual party with new people. Why? Mostly because I am clueless when it comes to 'tweeting'. However, the subject was one that I couldn't ignore and the purpose was to raise awareness for CHD (Congenital Heart Defects). It was a great chance to 'meet' other CHD families and survivors and talk about some of the issues facing our kids or loved ones. I learned a lot and I had a lot of helpful advice given to me but more than that I saw for myself that CHD is not something we fight alone, there are so many families facing this issue, and they are only now beginning, through social media to unite. I have heard all the complaints of social media, the downsides of Facebook and the disparaging remarks about Twitter but I have to say; if not for the world of the internet I am not sure how I would hold up under the strain of CHD. There is so much to learn, to know, to find out and so many questions that beg answers. The doctors are great, but lets be honest, it's the parents who have to deal with living with CHD, it's the parents who have to make decisions, it's the parents who have to answer the questions that the kids ask and it's the parents who have to carry the weight of this illness on their shoulders. Sometimes, it's the loneliest place on earth, being the parent of a sick or special needs kid. To meet others who have traveled the road before you, or walk with someone who is just starting the journey is a blessing and last night as I watched my feed scrolling quickly with names and faces of other CHD families I felt for one of the first times, that we are not alone. There are people out there who understand, they get it in a way that no one else can, and that for me is a relief.
What I did notice, and I am not sure why but the families represented were almost entirely American. I was the sole Canadian representative and that strikes me as sad because I know the stats in Canada, and if 1 in 100 babies are born with CHD, that means there are 1 in 100 CHD families. Where are they?
For a long time, CHD's were separated by their diagnosis.. for example. Josh's original diagnosis was pulmonary atresia. So when raising awareness people have heard of some of the different CHD's... ASD, Tetrology of Fallot, or Hypoplastic Left Heart syndrome. There are over 40 types of CHDs and they all have thier own names. What would happen if we knew that all of these reasons for lost lives came under one umbrella name (CHD) and that by raising awareness and throwing funding at it could actually (not hypothetically) save lives? What amazes me is that we DO know this. I have read hundreds of articles, thousands of blogs, and yet the only people who seem to know anything about CHD's are those of us who have been personally affected by it. The parents, siblings, Grandparents, friends etc.
There are walks, corporate sponsors, rides, runs, dinners and countless other fundraisers for many of the big name illnesses, (and I don't begrudge them this at all) but CHD is still maddeningly underfunded. As parents it's fallen to us to care enough to make enough noise that change is forced to happen. I am okay with that, but how? What are we doing wrong that no one notices the leading cause of infant death in our country and many others?
Obviously as a Canadian I am deeply concerned with our lack of awareness in this country, much less than the that of our neighbours to the South, and if I am honest I have to say I am deeply saddened and at the same times seriously annoyed with the media's lack of concern in this issue. My best guess is that it will take one of the media's own to suffer life with CHD before anyone will hear about it and I wouldn't wish this on my worst enemy.
I am throwing this blog post out into the nether regions of cyberspace, not because I have answers to any of these questions but because I have a deep desire to get some answers, or at least to start the conversation that may lead to some answers. Throw your comments up, weigh in on the conversation. I want to know, what can we do to get the media and the public to stand up and take notice, for the funds to start coming, for the corporations to begin to take notice? What do we, as parents, friends, loved ones do to get the ball rolling?
Okay... GO! :)