Remember that 1990’s movie about love and relationships? The trials and tribulations of older adolescence. It seems life was so simple then. Not to mention with an awesome soundtrack! Now, not to say adolescence is simple, by any means, but I guess compared to the realities of adulthood and PARENTHOOD, life does seem a bit more. . . complicated now. Where is this all coming from, you might be wondering. Well, in short, life with Chloe. That sounds negative and I don’t mean it that way, so let me explain.
A few weeks ago, Chloe was outfitted with a new radio transmitter registered with the local police department as part of the Project Lifesaver program. It’s been in the works for weeks now, probably more like months, but finally, she is donning her newest accessory – a waterproof bracelet/anklet worn around her ankle that contains a radio transmitter in the event she gets lost. That’s where the reality part comes in. I posted a picture of Chloe’s new jewelry on Facebook and was showered with “wow’s” and “that’s great” and “what a relief”. But that wasn’t the REALITY of it. The reality of it is that this is just a small tiny Band-Aid on the bigger problem. Chloe is an escape artist. AND a runner. And Chloe has little to no sense of road safety or water safety. And being outfitted with this new transmitter not only made me realize the reality of her escaping, but also the realization of the limitations of what this small device can provide. And that, my friends, is quite daunting. The REALITY is if she gets out she could die. Period. Before we even have a chance to call the police to search for her she could be hit by a car on our very busy street or drown in water she eagerly wants to jump into. This is our reality and quite frankly, it bites.
I don’t mean to be such a downer. I like my posts to be upbeat and motivating, because that’s generally how I feel when I’m thinking of Chloe. But there is another side to that optimistic side of things. The other day at work I was telling someone about my three children and as usual I said “and then I have a 5 year old girl who has Down syndrome”. For the first time in a LONG time I got a “gasped” response, followed by “oh no’s” and “I’m so sorry!” “That’s so awful” and on and on. “No! No!” I assured her. “We love her! She is true delight! We feel blessed to have her and couldn’t imagine her any other way” clearly reassuring her it would be okay, as if I were reassuring a new mother who had just received the news herself. And I did mean EVERY SINGLE WORD OF IT! We can’t imagine our lives without Chloe or who Chloe would be without Down syndrome. We embrace her for who she is. We celebrate her.
But that doesn’t change the reality that EVERY SINGLE DAY we live with the added fear that we could lose her. All parents know this feeling. When you experience the love such as that of a parent for a child you can’t help but fear even the unrealistic. The unreasonable. But for us, that fear is a little more real. The chances that something horribly tragic could happen are higher with our special kiddos who run, misunderstand danger, or who have special medical needs. And some days it gets me. It holds onto me and squeezes me until my breath is taken. And I gasp, almost as if there is no air left in the world, only to realize there is. Today is NOT the day we will lose Chloe for good, and hopefully that day will not come for a very long long long time.
If you’re wondering how we get up each day and live in this shroud of fear and doubt. Well, the answer is because we have to. In order to give all our kids the lives they deserve we must let some of the realities of what can be and live in the moment. The “I want to dance barefoot in the rain” moment that reminds us that we must LIVE while we can for someday, as with all of us, we will lose that luxury and when we do we want to be able to say, it was a good life that we lived afterall.