Recently the question was raised how to raise a special needs child without limiting their dreams and possibilities, and whether the daily struggles of that parent and child should be discussed in social media. The opinions varied slightly but the common theme was that one is to stay positive and offer the child every opportunity and that any mention of the struggles or medical setbacks should be posted with caution, preferably only in closed groups but not on private accounts, in order to guard against possible negative future consequences of such posts to the parent or child since all posts are searchable by anyone at any time.
While generally speaking I would agree with that consensus, I also feel like it’s not as black and white of an issue. There is a lot grey area here worth mentioning. Again, I can only speak from my own experience and everyone reading this has to come to their own conclusions.
What to post on social media, or in this blog for that matter, has always been a question of urgency. In the early days when Wyatt was first born, when every day was an emergency and I had no idea what I was up against, life was very isolating and my private and support group Facebook accounts, as well as this blog were my place to vent and to keep family and friends in the loop without having to call everyone individually with medical updates. To be perfectly honest, this blog was the only thing that kept me sane. As time went on, our life went from daily despair to the new normal we know now and therefore the monthly blog posts transformed from pure talk therapy into the occasional update. And now as I am writing this I just realized I haven't even posted a blog update in over a year. So I think what it comes down to is that everyone copes with such a dramatic life changing event differently and at a different rate, and how they cope also depends on whether they have a support system close by. I would never fault someone for getting wrapped up in the medical world so much that they may not even realize their posts and comments only evolve around that world. I did that myself for a long time. When I was stuck in that mode, for me it was never about commenting on Wyatt’s life limitations or what he might be able to do in the future. We always treated him just like our other boys and still expected no less of him. My updates had more to do with my own anxiety with this diagnosis and whether I was doing everything possible and being everything he needed me to be. It took me almost 3 years to go through the process of diving into research and following up with every doctor for me to accept things for what they are, most importantly to have the confidence to trust my own gut instead of just doctors, and to move on with life independent of the labeled diagnosis. I also had to learn that I can only function on an "either/or" approach. Either I am involved in the research of CCHS and I dive in full force driving myself crazy and isolating myself from the world, or I keep my distance and am then able to enjoy life. (Hence my lack of involvement in anything CCHS related and even with the online support group. No offense to anyone.) There is no middle ground for me to be able to function on a day to day basis. Some people can juggle this situation better, even dive into the mode of supporting research and fundraising yet still continue normal life. I personally can't do that. So I guess what I’m saying is that maybe when someone is going through a similar situation as mine and appears to be only sharing seemingly negative updates or only posts related to that situation, I would like for the readers to consider that it may not have anything to do with that person’s true beliefs for their child’s future. It is equally as plausible that they are simply overwhelmed and might not know how to get out of the medical status mode.
As far as my blog posts and comments in the early - every day is an emergency - days, I don’t regret any of them. There is no shame in trying to cope with the situation at hand and showing raw emotion. I am also not afraid of Wyatt one day reading about my personal struggles alongside his own. We all depend on each other to get through life’s bumps in the road and we all cope differently at different times. And that’s ok. If anything, I am proud of myself for being honest and outspoken about issues that a lot of people are afraid to bring up publically. It is my sincere hope that my honest, and admittedly sometimes blunt, account of our life will help someone else get over their bumps in the road.