Tuesday, August 23, 2011

Why Be Sorry?

My husband came to me and asked for advice on how to deal with people who offer their condolences upon learning that Levi has Down syndrome. When the first thing out of someone's mouth is, "I'm sorry...", it makes you wonder, "What exactly are you sorry about?"  Are you sorry we've been condemned to a life of misery? that our child will never have a chance to become president? that we'll be burdened with caring for him the rest of our lives? Logically, I know it's a well-meant phrase, but I can say with certainty that one thing which will NOT help Levi (or our family) is pity.

So what do I say? I say, "Thank you, but we're not sorry." What I've learned in the last 8 weeks since his birth is that preconceived notions of what it means to have Down syndrome need to be thrown out the window. All kinds of possibilities exist, which no one may have predicted in the past. There is hope for the future and that is what matters.

What do most parents want for their children?

Independence & Romantic Love? Monica and David have it...





Independence, Higher Education and World Experience? Luigi's getting it...

Because these people have been raised with love and treated as humans from whom we expect great things, they are accomplishing all kinds of goals not previously thought possible. The medical community is finally expressing an interest in and understanding the need for treatment to assist individuals in reaching their full potential with an extra chromosome. Research is ongoing in places like these:

http://researchds.org/

http://dsresearch.stanford.edu/

http://www.dsrtf.org/

Great strides are being made to improve the lives of those with Down syndrome and we have no idea what kinds of advance might be made in the near future which could profoundly affect Levi's development and provide even greater chances that he'll be able to live a happy, healthy, "normal" (whatever that is) life.

Regardless of what lies ahead, I know that right now we have a healthy, happy baby who knows that his mommy and daddy love him and that he has three goofy siblings (and two cats) who are superbly entertaining! For this, I am not sorry and I do not want pity or compassion. Instead, I want understanding that my child is more alike than different and is not a creature to be pitied. I would also like for people to accept that differences (physical and cognitive) are to be valued and not wholly dismissed. There is value in everyone, not despite the differences, but because of the differences. So if someone is going to tell me that they're sorry when they hear that Levi has Down syndrome, then I would have to ask, "How could you feel sorry for somebody this sweet?!?..."




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