If you are around our family very much then you probably know that Mikayla has Williams Syndrome. You also probably know that it’s not something we talk about a whole lot. It’s not that we don’t want to talk about it or are in denial in any way, its just something that we accept as part of our lives and there’s really no need for discussion. (Of course, we love to answer questions or anything like that, so please feel free to bring it up!) It’s like if you have a child that’s left-handed or a child with big feet – you don’t feel the need to point it out to everyone you talk to, it’s just who your child is. So it is with Mikayla having Williams.
When she was first diagnosed, I scoured the internet for information and testimonials and videos and medical advice but eventually I reached a point where I had to stop doing that to myself…and to Mikayla. Let me explain – as parents we tend to squish our kids into a mold of what we think they should be. Everyone does it on some scale, we all have hopes, dreams and expectations for our children. When Mikayla was diagnosed with a “disability” we were given the opportunity to throw away that mold. Not that we don’t have hopes and expectations for her, but we were given a hefty dose of reality at an early age that she may not be what WE want her to be (ie. astronaut, doctor, lawyer, etc.). Instead, we now have the opportunity to teach her as much as we can and prepare her as much as we can for a life that GOD has planned for her without the hindrance of OUR plan.
In contrast, we don’t want to squish her into the “Williams Syndrome mold”. Yes, there are things about her that are a result of her having Williams (feeding difficulties, heart problems, small size). And, it would be foolish of us to ignore the research and medical information that is out there regarding children/people with Williams. At the same time, she is a unique individual. She will have strengths, weaknesses, challenges, loves, fears, characteristics that are all her own and have nothing to do with Williams. Just as it is foolish for us to ignore Williams information, it is foolish to apply EVERYTHING to Mikayla. Just because one child with Williams has a certain difficulty or a certain strength does not mean Mikayla will be the same.
I guess this is the long way of saying that I don’t really search the web for Williams information any more. We stay in touch with several doctors and therapists and other professional supports who keep us in the “know” if there are any new developments. But, for the most part we look at Mikayla as Mikayla. She is our sweet and happy 20 month old who loves peas and hates sleep. She still wears 12 month old clothes and will probably be in a car seat until she’s 14. She smiles a lot. People, even strangers, are drawn to her in an unexplainable way. She sees more doctors than most kids, but not nearly as many as she used to see. She likes Elmo and music and the puppies and Christmas decorations. She talks like she’s from the south and dances like her mama (poor thing). We take things a day at a time and leave the future to One who handles it better than we do.
Even though I don’t usually do this, I do want to share a video with you. We recently met another family that lives near us who also has a child with Williams. She posted this video on facebook today so I decided to give it a watch. Of all the videos and testimonials I’ve seen, this is by far the best. It is long, 45 minutes. But it very clearly explains Williams from a parent perspective and a professional perspective. There are even several Williams people on the video who talk about things they like, things they fear, difficulties they’ve faced. It’s a great video for anyone who wants to understand more about children/people with Williams. I hope you’ll take a few (or a lot) minutes to watch…
Williams Syndrome | MySpace Video