I can’t express how happy it makes me to see all the love Leo receives when I share posts or stories about him…even if he doesn’t realize it yet. He is a special kid and I’m glad many people can see it. That being said, I want to set the record straight. Why did I pick “Our Extra Lucky World” for Leo’s advocate account? When we first found out about Leo, a lot of people, me included, kept saying how he was going to be extra special. I think it was a way to try and comfort myself. It was made to seem as if we had won the lotto and Leo was our winning ticket since his extra chromosome is extra rare and special. We weren’t completely off, but we definitely were not 100% right. Phrases like “the lucky few” or “extra special” can be a bit misleading. Leo is extra special, in his own way, just like my other two kids are extra special in their own ways. He shouldn’t be held up on a pedestal or treated differently because of his extra chromosome. This is one of the reasons I advocate for him and share what our life with him is like. It's so that others can see he is #morealikethandifferent .
Now, when I hear these phrases, I think of a different explanation for what they mean and what it meant when people would tell us we won the lotto. Leo’s diagnosis presented us with a unique situation. It’s a situation not many people in this world find themselves in unless they go out and look for it. Having a child with an extra chromosome presents the parents and families with a beautiful opportunity to see the world in a new way, to see people in a new way. That's why it’s an extra lucky world we live in. It’s a lucky chance to gain an unexpected, yet wonderful, perspective. As parents, we are fortunate to have this experience and the tricky part is realizing how lucky we are to go through this journey and embrace it.
On that note, parents of kids with special needs weren’t chosen specifically for this because of some secret superpower that they have. This was also something that was thrown around a bit in the beginning of our journey, mostly to console us. I can’t say for sure why we were “chosen”, but I’d like to think of it as a match made way before the thought of Leo even existed. The reality is we are just like every other parent, special with our own strengths, weaknesses, and personalities.
I could have easily joined the pity party boat and sailed way off into the darkness. Thanks to my husband and our amazing support system, I didn’t. I could have done certain things that many doctors normally suggest as an option. Leo would not have existed, and I would have chosen to not be a “chosen” parent. I prayed the two weeks we waited for my blood results to come in and I told God that I was not the right person for this to be happening to. What I said to him sounds silly to me now because I know better, but back then I didn’t. I did, however, realize that we were being called to be a part of the lucky few who could go through this journey of really understanding what beauty means. Understanding the power of acceptance and ultimately, celebrating our kids and all of their differences, even if it’s not what we had originally pictured in our minds, because these differences are what make our world extra lucky.
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