We drove home from that appointment in complete silence other than the sound of Michael eating his curly fries and roast beef sandwich, which was unusual for us. Michael didn’t like being silent. He loved to talk, ask questions and simply make noise. Typically there was conversation going on about if he could watch TV when we got home, questions about when he should do his homework or the sound of his CD player being too loud. At one point he did ask what the doctors wanted to talk to us about. I remember giving him a quick reply of no worries Michael, no worries and then muttering something like, just more information that will help us take care of you. That response of no worries, no worries became a mantra that I spoke hundreds of times to Michael in the years that followed that appointment. No child should have to worry about all the affects of a rare syndrome; of any disease actually.
Desperately, I was trying to absorb everything we were just told and yet at the same time feeling so frustrated in the way all these life altering facts were blurted out, one after another. Couldn’t there have been a kinder, gentler way to share this type of news with us? Did we need to know all these horrible facts all at once? It was overwhelming. The doctors must have seen the look of complete horror on our faces that day. As if those cruel facts about the disease our son had weren’t enough, the doctors ended the appointment that day with one more fact as a word of caution. Eighty five percent of marriages involved in this type of catastrophic illness result in divorce. Seriously, are you kidding me? Anything else you think you need to reveal to us today?
Looking back I have found value in hearing that final fact on that day. It gave me and my husband the opportunity to commit to each other on a whole new level. Actually, we spoke the following words out loud to each other many, many times. “That will not be us. That will not be our marriage”. I have yet to this day found the value in hearing that harsh statistic about marriages on that particular day though. But, I will admit that I learned the value of speaking the truth out loud.