Accepting change is one of the most difficult tasks we face as adults. As children we can't wait for change! To be a year older or a head taller in order to do things like ride on a roller coaster or play certain games are goals of the young child. The funny thing is that once we age or become taller there is no stopping the changes that occur. As adults mature they may not grow taller, but they may become rounder or at least physically different than before. As adults we realize it's not the changes that occur on the outside that are most important. Instead, the changes that help us to grow on the inside to become better people are what's most important.
Over the years I've watched many changes occur in the congenital heart defect (CHD) community. When I first got dial-up Internet in the 1990s there were few pages by CHD parents. Most of them were tributes to CHD angels -- children taken from this earth way too soon. Back then there was no MySpace, no Facebook no YahooGroups. The way we CHD parents connected was by chance a lot of times until we found a way to get better organized. Back then, AOL ruled the Internet as a form of communication. I remember actually being excited when I heard the familiar voice come from my computer saying, "You've Got Mail!"
AOL had chatrooms and we CHD members, mostly parents and grandparents, would frequently set up chats with each other. We even got organized enough to have a Friday Night Chat where we talked about the challenges we faced, the questions we had but had forgotten or didn't have the courage to ask our children's doctors and where we celebrated small triumphs that other family members and even friends couldn't possibly understand. We talked about the "forbidden topics" like spanking, whether we should let our babies sleep in bed with us and breastfeeding the baby with a CHD (how do you measure how much milk they got?). As our children aged, the needs of our core group changed and we had other duties on Friday nights so our chat just faded away.
Many of us changed from being the parents of toddlers or young children to the parents of elementary-aged children or the parents of angels. The angel parents went off and formed their own group. Those of us with older children sometimes found ourselves so busy that we actually didn't need the intense support we had needed when our children were between surgeries or just recovering from an open-heart surgery. Some parents believed that their children had finally been "fixed" and they no longer needed our group. Others had other children to attend to and so our group dynamic changed over time just as our needs changed over time.
In the 1990s and early 2000s there was a great need for books. There was so little written on CHDs for the non-medical person that I received many letters from people thanking me for what I had written and published. Finally they read stories like their own. They had heart brothers and sisters -- other people who understood the challenges they faced. They were not alone!
One surprising change was to see the printed book give way to electronic books. The Kindle and the Nook changed the publishing world and it will never be the same. Some changes are good changes! I remember in 1998 receiving a phone call from a gentleman in California. His best friend was in the hospital and his baby daughter had hypoplastic left heart syndrome. The man desperately wanted my book Hypoplastic Left Heart Syndrome: A Handbook for Parents so I told him I would put one in the mail first thing in the morning. That wasn't good enough for that gentleman. This was before PDFs were invented. This was in the day before Internet service like what we have today. This was when, if you wanted printed material in a hurry, you used a fax machine. This gentleman insisted I fax him the pages from my book that showed the first open-heart procedure and Alexander's Story (the first chapter in the book). I remember feeding page after page into the fax machine and feeling lucky that we had that tool as a resource! How antiquated that process seems today!
Our CHD groups have changed, too. We've become more sophisticated, more knowledgeable. There was a time when I was actually scolded by more than one doctor for wanting to understand my son's heart defect better. The doctors told me that they were the experts and that I should trust them and not question what they wanted to do to my baby. My heart friends today would be furious with those doctors! Doctors today expect parents to come to meetings with questions and pages printed from the Internet with information they want to understand regarding their children's conditions. That is definitely a change for the better!
Instead of meeting in chatrooms like we did in the olden days, now parents set up CarePages, Caring Bridge pages or Facebook Pages devoted to their children. We often use our abbreviations for our children's heart defects to help us find each other -- so it's not uncommon to see HLHS or TOF somewhere in a person's name or on their page. In fact, there are YahooGroups and Facebook Groups devoted to certain heart defects where parents can feel free to talk about issues of common concern and where they can use jargon or abbreviations that everyone understands.
Before MySpace and Facebook we used to have listservs. Yes, there was no "e" at the end of the word -- which was something that drove me crazy as an editor! But our listservs were our lifeline. They were the places we could talk about our fears, our experiences and our frustrations with a group of other people who really got it and who didn't respond with the platitudes or silence that our family members and non-heart friends did. They supported us, cried with us and offered helpful advice. They consoled us. They helped us to know that we weren't alone.
In the future we'll have yet one more change to look forward to. Now in addition to Facebook, CarePages, Caring Bridge and other places where members of the CHD community can come together, we'll have a weekly radio show to bring us together! The radio show will also address issues of significance to the heart community. It will be a safe place where we can celebrate triumphs, overcome obstacles and rejoice in knowing that we aren't alone. I can't wait to see how the radio show will grow and change, just as I've observed these so many other changes in communication over the years.
I started with a quote and now I will end with another quote: