By Nadine Briggs and Donna Shea
When my daughter, Megan, was born I quickly became used to terms that would be used to describe my baby, like “global developmental delays” and “endocardial cushion defect” (heart defect in laymen terms). I accepted the long list of challenges that come with her having an extra 21st chromosome. I did everything in my power to raise her to have the best shot possible in life. I wanted her to be happy, of course, but also be able to live as independently as possible when she reached adulthood.
Recently, my daughter has developed an additional, shall we say, bonus feature. To respect her privacy, I will not share what the recent challenge is. Suffice it to say that it is a challenge big enough to potentially alter her future path in life. I am sure she will be fine, but it might make the future she was headed for and we intended for her to have, no longer possible.
So why am I sharing but not really sharing this part of my life with you? For a few reasons. Reason One is to let you know that when Donna and I tell people we understand the challenges parents face, we get it in a way that no one without a child with challenges can. We live those soul crushing moments when you feel helpless to fix the issue. Those sit-alone-in-the-dark with only a box of tissues for company moments. In those moments, we are not wallowing in self pity (well, maybe a little). We are knocked back a bit for sure, but we are thinking and considering, and calculating what to do next. Since giving up is never an option, we are problem solving. We come up with Plans A, B and C because we know that many of the challenges we face will need multiple plans. Living this life has honed our problem solving skills. It’s that problem solving that we write about in our How to Make and Keep Friends books. We believe that we experience these moments because we are meant to share them with you. Not the problems, of course, but the solutions.
Reason Two is that we have people out there who are frequently try to copy or hijack our work. People who are either trying to be like us (not in a flattering way, but in the not-cool way) or who use images of our books to create the illusion to make people think they are us and gain business for their own centers. (Yes, we see you). I say, go ahead. Give it your best shot. You will never be able to duplicate us. The experiences that have shaped us come from 5 collective decades of dealing with a very long list of issues. There is no copying that.
Reason Three is that there might be someone out there who has had or is currently having to deal with a big bonus feature and might need to know that they aren’t alone. You aren’t. We are here and we’re with you. There is whole community of us who understand.
When born, Megan might have been described with the terms that I indicated at the start of this blog, but now that she’s 20, I will add some additional terms for the end. Smart, goal-driven, motivated, determined, and feisty.
Stay tuned for the update. My girl is a fighter and this “bonus feature” has met its match.
