About

I’m a mother of a child with Noonan Syndrome-Like Disorder (SHOC2). He’s my first, so I don’t really have a good frame of reference for what’s, “normal.” I never took much interest in babies until I had my own. It just didn’t seem interesting. They had their Mommies, and they didn’t need me. Sometimes I wish I had paid a little more attention!

My child is the first in the family to need significant medical care, and the first my family has cared for with a feeding tube. Many of my sisters’ children only go in for well visits. I’ve put my career aside for now to give my son my full support. A lot of people told me I’ll regret it one day.  A lot of people are wrong. This is where I belong right now.

If you would like to read up on how he’s doing, the most recent update is, “Big Changes this Spring.”

Press kit available upon request.

23 responses

  4. I know you’ll never take me up on this, but I so admire your blog, and I nominated you to participate in a quotation challenge. Even if you don’t participate, here’s the link to my post explaining it:

    https://dearlilyjune.wordpress.com/2015/10/14/in-others-words-in-which-its-day-one-of-the-three-day-quotation-challenge/

    And here’s what I said about your blog (in case you don’t want to go to mine to read it!):

    Ashley Bergris of Struggling to Thrive–This “Medical Mom” may not take me up on this, but her concern with her son’s health and well-being is palpable and moving, and she herself is informed and informative about his condition as she learns more. I learn how to be a better mother just from reading about how she does it.

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  7. Hi Pheonix, to meet you. For all that you have a special needs child which must take a lot of energy and be stressful you sound amazingly sane! I don’t imagine it’s ever easy. Kudos!
    Thank you so much for following our blog. I hope you enjoy the stories of our journey. And don’t be a stranger – come on over and join the conversation.
    Cheers
    Alison

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  9. Go with your gut and you won’t go wrong. Being there with your baby is paramount. You can never get that time back. You can always find a job. But baby time is precious. I’m sending you big hugs. You are making the right choice for you and for your son. The best part is you can always choose again if you want. Life is short. Do what you feel is best for you and for your family.

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