Wednesday, March 16, 2011

This Doesn't Change Anything

I always knew there something was different about Bean. The second night after his birth, I sent him to the nursery in the hospital so I could get some rest. The nurse brought him back to me an hour later because she couldn't soothe him. Two or three weeks later, the reflux, food intolerances and other digestive issues started. Not long after that, we learned he had (and continues to have) pulmonic artery stenosis (narrowing in the arteries leading away from the heart). By four months of age, it was evident that he was behind his peers because he was just starting to smile. At seven months, he still wasn't laughing, picking up toys or sitting independently. He started early intervention services at 8-months of age. We started to notice words in his medical records - some that the doctors never mentioned to us - like dysmorphic features, possible aortic stenosis, global developmental delay and hypotonia. He has more specialists than I ever knew existed and he has made tons of progress since starting therapy 10 months ago but still faces many challenges each day. We went to genetics to see if they could put the puzzle pieces together. Five weeks ago, on February 10, 2011, we got the call - and diagnosis - that would change our lives forever. Or would it?

Bean has Williams Syndrome. I have spent a lot of time processing what it will mean for our family to have a child with disabilities. I started processing it long before we ever had the diagnosis. What it will mean for Bean. What it will mean for Baby J. What it will mean for husband and me. How this diagnosis will change our lives. I have come to the conclusion that this doesn't change anything.

Bean has digestive problems. This doesn't change anything.

Bean has a mild heart condition. This doesn't change anything.

Bean has low tone, sensory issues and developmental delays. This doesn't change anything.

Bean needs a team of specialists and therapists. This doesn't change anything.

Baby J, at 3 years old, is still just a little boy and needs our love, affection and attention just as much as his baby brother. This doesn't change anything.


Husband and I need to love and support each other through this amazing and crazy parenting adventure. This doesn't change anything.

Husband and I need to be strong, relentless advocates for our children. This doesn't change anything.

Bean is a loving, charismatic little boy that lights up a room with his smile. This doesn't change anything.

Bean lives for attention and you better greet him with a hug and a smile the second he sees you. This doesn't change anything.

Bean and Baby J will go to school one day - typical or not - and will learn to the best of their abilities with all of the appropriate resources available to them. This doesn't change anything.

Bean and Baby J will be supported to reach their fullest potential and be as independent as possible. This doesn't change anything.

Bean and Baby J may face teasing and ridicule but they will know they are loved. This doesn't change anything.



Some days, I feel like this isn't the life that I wanted. It isn't what I signed on for. This doesn't change anything.

Most days, I'm able to take it one day/hour/minute at a time and know that everything is going to be ok. This doesn't change anything.

Everyday, I look at Bean and Baby J and am filled with love – true honest-to-goodness unconditional love - acceptance and amazement at the joy they bring to my life. This doesn't change anything.

And most importantly, Bean is still the same sweet, amazing, unique, mysterious, sometimes frustrating and endearing little boy he was before we got that call on February 10, 2011. This, Bean's Williams Syndrome diagnosis, doesn't change anything.



6 comments:

  1. I never thought I would meet someone who could talk the same language that I know even though our stories are different. They are the same in the ways that matter. I have had your thoughts and undestand your fears. I see how much you love them no matter what. You are a mother in every sense of the word and in ways that beg that the definition of mother needs to be redefined. Did you ask for it? No. You are the person who stood up and said I didn't ask for this but I will embrace it and pepare the world for my babies. Good things happen to those who face their challenges head on and with humor and grace. You will be just fine, Heather, and those boys will never for once question who they are because you have fought for them and stood by them.

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  2. Wow, Carley, thank you! I know you get it. And I know that I have said this before but you really are an inspiration. Thank you for being a model of humor and grace in the face of adversity. You are an amazing mother and I am blessed to know you :)

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  3. I remember the sleepless nights and the reflux and the doctor's appointments. And the diagnosis not changing anything and yet changing everything at the same time. My son is now going on 7 years of age. I remember our first WS convention and how a wonderful man with WS hugged me goodbye...how reassuring that felt to me. I will never forget that. I thought I would be the strong one, but it turns out I have gotten a lot of strength from those with WS. Including my "baby" boy. He is my greatest accomplishment, and I love sharing him with the world. Stay strong and ENJOY the journey.

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  4. Hi, Nancy -- thanks so much for your kind words! And you are so right about how things can change and staythe same all at once. I'm looking forward to next year's convention- maybe we'll have the opportunity to meet :)

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  5. Thank you for creating this blog, and this post specifically. I'm still coming to terms with my 8yo daughter's Williams diagnosis, and I'm reading everything I can get my hands on.

    She's still my amazing, loving little girl, and I wouldn't change her for the world!

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  6. Hi, Yocheved! Thank you for reading and for your wonderful comment. Is your daughter newly diagnosed? How is her health? I promise, it really does get easier! I think one of the things that has been the best for me was connecting with other WS moms. If you are interested and on facebook, there is a wonderful private support group. Send me an email at babyjandbean@gmail.com and I'll be happy to connect you with others like us. Feel free to contact me to ask questions, laugh, cry, vent whenever you want :)

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