Thursday, March 31, 2011

I'm not sorry

I took the boys for a walk yesterday morning even though it was a little (ok, a lot) chilly. It was one of those days that we just needed to get out of 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 of the responses I've had from friends, family, perfect strangers - anyone really - about Bean's circumstances. I get a variety of responses from people and I am surprised at times by my (mostly unspoken) reactions because for the most part, I would probably be saying the same things if the shoe were on the other foot. I truly appreciate everyone's care and concern and thought it might be interesting, to read what I am feeling about these things.

I don't know how you do it./I could never do that. This statement is usually in response to the diet I've been keeping for the past 19 months or to Bean's atrocious sleep problems and my resulting lack of adequate/quality sleep. But I've also heard it in relation to parenting 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 – to get or keep your child happy and healthy. I am not a martyr. I am not super-mom. I am simply a mother with a child that has some pretty intense needs and I do everything in my power to meet those needs. I do 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 before getting the diagnosis. I was always stressed about whether or not Bean would grow out of his issues or if they were here to stay. Getting the diagnosis was actually a relief. We finally had answers. Don’t get me wrong. The news was devastating and I was an emotional 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 know what? This isn't the end of the world. This is not the worst thing that could ever happen. It is a blessing to have this sweet boy in my life and to have the opportunity to parent him. It won't help anyone if I can't keep it together. I need to be ok for myself and my kids. I have accepted Bean's diagnosis and everything that goes along with it and I am moving forward with every treatment, therapy, and tool available to make his life as happy, independent and fulfilling as possible.

I'm so sorry. I feel so bad for him. This was fine when I was talking about his digestive problems or lack of sleep (I feel sorry for myself over the lack or sleep and yummy foods!) or some other relatively minor symptom. But when it comes to Bean having Williams Syndrome, I really struggle with this comment. Ok, yes. I did go through a mourning period - and it will probably continue for some time in some shape or form. But that's about me and my wants. I mourned the life that I had wanted for him. You know, the life everyone wants for his/her child - straight A's, most talented athlete/artist/musician/whatever, prom king/queen, rich, famous, married or partnered with two kids - a boy and a girl, a large home and a white picket fence. Seriously though? That's not real. That doesn'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 accepted that fact that Bean's life is going to be different than what I had hoped 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 be and do everything he wants to do. His life might not be what I had wanted but it will be absolutely perfect for him. No one's life course is guaranteed and I just learned this lesson a little early in my parenting experience.  I don't ever want him to feel that there's a reason for him to pitied or considered less than anyone else. Because there's not. He’s still here. He’s relatively healthy. He's an amazing little boy that charms and surprises me every day. Please don't be sorry for him. I'm certainly not.


  1. Amen sister. I get a lot of "I don't know how you are doing it, you are so strong".
    Um, no I'm not!! I have spells where I'm depressed and angry and cry for no reason other then "why my baby?". I get mad at God on some instances..but those feelings don't last long because what ever God takes you to, he will take you through. It is hard, but I am dealing the best way I know how.
    I haven't gotten through the mourning kudos to you, but I am still mourning the loss of a "normal child", as awful as that sounds I know you understand.
    So keep it up mama, I'm right behind you.

  2. I totally get where you are coming from and really can appreciate all of your feelings and emotions. I knew all along - for 17 months - before getting the diagnosis that something was up and I had all that time to digest. I do still have my moments. Believe me when I tell you that the mourning thing will subside and each day will get easier. And before you know it, you (and I) will have a new normal - whatever that is. I think about you and Corbin lots :)

  3. You've got it exactly right!! :-)

  4. I was always surprised by Nick's daughter and her husband who were raising 2 boys with with a severe case of it who has seizures so badly that they operated on his brain to try to stop them. It didn't work. He wore a helmet for years and they saw many doctors and had many hospital visits too.

    What was so amazing is that they treated Jonathan just like any normal child. He had severe disabilities but he was their son....they loved him.....and they did all they could to make his life as normal as possible. If he fell down they picked him up, dusted him off and went about their business. He wasn't pitied....he wasn't coddled....he wasn't treated like a china doll. He was treated like a little boy.

    To top it all off, Mary, Jonathan's mother, has epilepsy as well....she was not able drive a car. Jonathan is now in a group home and I don't know if his seizures are under control but he has a life. His brother, Danny, didn't have as severe a case as Jonathan did and he has a job as a reporter for a newspaper.

    Of course, Mary and her husband had days of tears.....asked the question "why us"....and experienced times of extreme sadness thinking of what their children could have accomplished has it not been for the disability they were born with.

    Sadly, last winter Mary's husband died of a heart attack after shoveling snow....he was 65....she is many years younger. We see her every once in a while and she seems happy and content with her life.

    It is normal to question why you were dealt such a hand.....nothing will change it but you wouldn't be normal if you didn't feel sad about Bean's diagnosis. I don't think I could have handled the life you and Scott have had for the last 18 months without losing my mind. You are a strong will survive and so will Bean. He is loved and he has a diagnosis...nothing will change either.

  5. You are an amazing mother to both of your children, Heather! I know exactly what you have been through all of these months and I could not be more proud of how you are handling everything. Love, Mom

  6. You are INCREDIBLE. And so is that little Bean of yours. Someone shared you link on Facebook and I've been reading, reading, reading. And okay -- crying a little because I'm so touched by your love for your boys.

    Thank you for teaching me (and others) about WS. You should write a book. You're a fabulous writer and have a lot of emotional depth. I'd read it!

  7. Hi, Lindsay-- Thank you for your wonderful words of encouragement. I'm so glad you enjoyed learning about WS and my sweet boys :)