I've been on the Down syndrome journey for about 5 years now. I have a HUGE extended family of fellow parents of kids with designer genes. And I think I can safely say this: the early days of the diagnosis, whether they be prenatal or postnatal, are very hard for *most* people. I do know of a few parents who quickly accepted their child's diagnosis and never looked back. But for the vast majority of us, the days/weeks/months following the diagnosis were fairly dark.
I believe that the reason behind the struggle is not necessarily the same for each person, though. For some, the struggle is because of a stereotype developed by past experience. Or the media. Or negative information provided by a doctor/nurse/geneticist. Or for some of us, we had idols in our lives that were exposed.
I confess... my idol was/is intellect. I've always placed a high value on education. Maybe that was imparted on me by others (family, teachers, peers, etc.). But ultimately, I *chose* to place high value on that. I worked hard to earn a full ride to a top business school in my 20's. While there, I worked in the admissions office and there were few prospective students more sought-after than individuals who were pilots in the military. Let's face it... to "make it" as a fighter pilot, you had to possess a lot of skills that the majority of us don't: leadership, quick thinking, high intelligence. So, though I feel the gentleman in the video below might be just a little on the arrogant side by stating that he has "superior genes," he's probably right.
Please take 14 minutes and watch this video. You'll get a glimpse into the heart of a dad who struggled big time and came through it as a shining example of a parent with a DEEP love for his child. Double click on the screen and you can see it full-size.
(If you're reading this post in an email, click on the link to the blog and you can watch the video there)
The most emotional part of this video for me is when he answered the question about his biggest fear. "My fear is one day somebody calling her 'retarded.'" Yep. That is mine for Micah too. It breaks my heart, but people WILL make fun of him someday. I try to remind myself that typically-developing kids get mocked/bullied too. It pains me to think about it for all of the boys. But with Micah, oh my heart.
1 month ago