I took the boys for a walk yesterday morning even though it was alittle (ok, a lot) chilly. It was one of those days that we just needed to get outof the house. While we were walking, I was thinking about all we have been through in the past year and a half. I started thinking about all ofthe responses I've had from friends, family, perfect strangers -anyone really - about Bean's circumstances. I get a variety ofresponses from people and I am surprised at times by my (mostlyunspoken) reactions because for the most part, I would probably besaying the same things if the shoe were on the other foot. I trulyappreciate everyone's care and concern and thought it might beinteresting, to read what I am feeling aboutthese things.I don't know how you do it./I could never do that. This statement isusually in response to the diet I've been keeping for the past 19months or to Bean's atrocious sleep problems and my resulting lack ofadequate/quality sleep. But I've also heard it in relation toparenting a child with delays and/or disabilities. My reaction? Yes,you absolutely could and would do it (whatever "it" is). As a parent,you do anything and everything possible - no matter how extreme – toget or keep your child happy and healthy. I am not a martyr. I am notsuper-mom. I am simply a mother with a child that has some prettyintense needs and I do everything in my power to meet those needs. Ido it because I have to. He is my child. Sound familiar? It should.That's what parents do.But you are doing so well. I'd be a mess. This is usually about Bean's delays, food issues, and/or his Williams Syndrome(WS) diagnosis. I was a bundle of nerves beforegetting the diagnosis. I was always stressed about whether or not Bean would grow out of his issuesor if they were here to stay. Getting the diagnosis was actually arelief. We finally had answers. Don’t get me wrong. The news was devastating and I was anemotional wreck for a couple of days. I still have occasional moments when I want cry,scream and yell about how unfair life is for me and more importantly, him. But you knowwhat? This isn't the end of the world. This is not the worst thingthat could ever happen. It is a blessing to have this sweet boy in mylife and to have the opportunity to parent him. It won't help anyoneif I can't keep it together. I need to be ok for myself and my kids. I have accepted Bean's diagnosis andeverything that goes along with it and I am moving forward with everytreatment, therapy, and tool available to make his life as happy, independentand fulfilling as possible.I'm so sorry. I feel so bad for him. This was fine when Iwas talking about his digestive problems or lack of sleep (I feel sorry for myself over the lack or sleep and yummy foods!) or some otherrelatively minor symptom. But when it comes to Bean having WilliamsSyndrome, I really struggle with this comment. Ok, yes. I did go through amourning period - and it will probably continue for some time insome shape or form. But that's about me and my wants. I mourned the life that I had wanted for him. Youknow, the life everyone wants for his/her child - straight A's, mosttalented athlete/artist/musician/whatever, prom king/queen, rich,famous, married or partnered with two kids - a boy and a girl, a largehome and a white picket fence. Seriously though? That's not real. Thatdoesn't happen for anyone. At least not anyone I know. He may achieve some of those things. He may not. It doesn't matter. I have acceptedthat fact that Bean's life is going to be different than what I hadhoped for him. No one wants their child to have a disability. Still,just like any other child, he will (continue to) be happy, loved,appreciated, embraced and supported to be everything he wants to beand do everything he wants to do. His life might not be what I hadwanted but it will be absolutely perfect for him. No one's life courseis guaranteed and I just learned this lesson a little early in myparenting experience. I don't ever want him to feel that there's areason for him to pitied or considered less than anyone else. Becausethere's not. He’s still here. He’s relatively healthy. He's an amazing little boy that charms and surprises meevery day. Please don't be sorry for him. I'm certainly not.
