This exclusive club: proud member since 2008
It is a club that you don't ever dream of joining. There is nothing appealing about it. You don't really think you deserve membership because you don't think you could handle it. So you pray every night that you will never feel what it feels like to be a part of this said club.
But then, at some point - when you learn of your unborn baby's condition, or you give birth to a child you expect to be healthy, and instead is not - you are given a membership card and signed up for the club as if someone has stolen your name and personal information to join a costly subscription without your consent.
It is the strangest form of identity theft.
All of a sudden, you are forced into a society that only an exclusive group will ever understand. You pinch yourself to make sure it is real - more out of shock and disappointment than out of joy and excitement. Your head tells you this is real. You are now a member whether you like it or not. But your heart obviously has a lot of catching up to do.
At first, it is normal to reject this newfound membership. It isn't what you asked for. Or what you expected.
Four and a half years ago Ricky and I got married with stars in our eyes. People told us we looked like Ken and Barbie on our wedding day. We come from good families, we have good morals and values, we love each other. As we came to find out, those things don't keep you from becoming members of this exclusive club.
It is hard to understand how we could be chosen for this path. Sometimes being a good person will make life easy for you. Other times, apparently, it does not work that way.
We have been members of this club for almost two years now. And although you could say that we were definitely disgruntled members at first, given this opportunity against our will, now we have found the bright side. The perks if you will. We wouldn't give up our membership for the world.
Shortly after Aiden was born, we were put in contact with a woman who was a few years ahead of me at the same high school who has lived her life with a craniofacial syndrome similar to Aiden's. We spoke briefly on the phone and she shared some of her life experiences related to her "membership" in this exclusive club. She dealt with her fair share of teasing. She felt like an outsider at times. But in the end, after she gave us a glimpse into how hard her life was at times, I will always remember that she said "I wouldn't change my life if given the chance". As bad as this sounds, I am going to admit that my first reaction was "That's a load of BS." I honestly didn't understand how she could say that. How could she say that if she had the chance to press the rewind button to be born without a craniofacial anomaly, she wouldn't. It did not make any sense to me.
Just 22 months later, I finally understand. It has got to feel something like the way I feel about Aiden. For weeks, months, after he was born I would close my eyes and PRAY that this was all a bad dream. I hurt because I didn't want to be "that family". I hurt because my heart had been so broken - my dreams shattered. Or so I thought.
Becoming a mother has always been my biggest dream. I've always said it is something I was put on this earth to do. When you have a child with special needs, initially you grieve the loss of the "perfect" life you imagined in your head of being a mom. But somewhere along the line, it hit me that it is for that very reason that I was blessed with my Aiden. Nobody could do it better than me. This really is the life that I was meant to have. I just didn't know it at the time.
I can only pray that Aiden will grow up to feel the same way that the woman who shared her story with us felt. To have a child with special needs is a challenge. And the ultimate reward will be to have that child grow up to feel happy with the life they are leading despite the obvious challenges they will face. One with no regrets. Not wanting to change a thing. That will be the true measure of my time here on earth.
So although being a member of this exclusive club is something I would never wish upon anyone, it is, at the same time, ironically, something I am most proud of. We don't have logo emblazoned hats and t-shirts, but you can bet that our members know when we are around each other while out and about. It is an exchange of glances. A knowing smile. The "I know what you are going through" looks that show more empathy than pity when out with our children. It doesn't matter the severity of problems our kids face - you can always tell those that are also part of the club. And without having to say a word, our journeys seep out of our pores unashamedly. Silently, we give each other a mental high-five. Our secret little handshake that only the members of this exclusive club are privileged enough to know.