Tuesday, March 2, 2010

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Noah's Favorite Butterfly of the Day
Noah loves chimes in the gift shop

Our Butterfly

Noah had a great weekend. It's always a highlight for Noah when he makes it to the Butterfly Pavilion. He loves to watch nature. With every butterfly he passes he tells them "A-Boo." His universal word of choice. Then turns to me and smiles like he wants me to recognize that he's offered kind words to one of God's beautiful creatures.

We've also noticed that Noah had developed a whole new set of language abilities when the vacuum is on. He talks to the vacuum with different Noah words than he uses at any other time. Chris and I call it vacuum speech therapy. We can only imagine what he is telling the vacuum, but he seems to make his own sentences. I fully believe if Noah had the ability to crawl he'd be all over that vacuum. We find it so hard to believe that Noah will be non-verbal. Real words may be a little slow to come, but he'll get there.
Brystal continues to mother Noah offering her gentle encouragement to roll-over. Hollie has since felt slightly ignored so she's now brining her balls to Noah thinking he'll somehow play fetch with her. Between the both of them I'm sure they'll have him moving in new directions soon. Chris and I would like to thank those who kindly responded to Noah's last posting with such support, love and kindness. Although we both recognize that even being very upfront with our feelings has not and will not stop people from judging, making assumptions or criticizing our decisions. Since the last posting in Noah's blog we've still both received emails of the very same nature, ironically maybe even more than the days prior. Our intentions were always to simply describe our life and Noah's beautiful miracle, yet people are picking us apart, dissecting us as parents, making demands that we explain ourselves. We've opened a door we never intended to simply by writing about Noah.
I remember once saying and even writing in Noah's journal "I fully believed that you should live your life out loud, even if that exposes you to judgment." I don't know if I really stand behind that idea anymore. There is a lot to be said for living your life very quietly, very much off the radar. When I was younger I thought that I would grow up and find a vocation that would let me change the world, I wanted to make this world a better place. Writing about our family and about our little Miracle Noah, I wanted the same thing - to demonstrate that this world was a better place because a little special boy named Noah fought the odds. I wanted to offer his story for hope, encouragement and faith that all things are possible. There are some days when I do question if writing about our family is even making a positive difference for anyone.

I have received encouraging responses from yet another set of special needs moms that assure me that these types of responses are very common. That people assume they know what you need, or how you should go about things, that you're doing things completely right or completely wrong. That doctors, nurses, therapists, friends, family and even strangers think they have your life all figured out in a matter of minutes simply based on something they've read. While I'm sure that maybe some are filled with good intentions others simply exist to be malicious maybe only because something is lacking in their lives and the only way for them to feel positive is to pick on others. In all honesty this phenomenon that I'm calling "journal entry back-lash", would have made a great college Sociology paper.

We will always remain thankful for those that continue to stand on the sidelines and cheer Noah on, in our hearts we know he is destined to do great things in this life. The rest we simply have to ignore as we move forward in helping Noah reach his destiny. As Noah's grandmother would say "don't sweat the small stuff."

Remember "Hope is Contagious."

With Love,
Stacy, Chris & Noah