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.