When I found out my son had Noonan Syndrome just about 3 years ago, I was brought to my knees emotionally. No parent wants to hear that their child is not "perfect" by medical and/or developmental standards. Every little physical "quirk" he had I thought was so cute, until December 1, 2008 - the day he was clinically diagnosed with Noonans. I remember that day vividly and where I was (sitting at the computer in our study much like I am now, but working) when my husband, who had to go solo to the Cardiologist with my son because I was home with a sick daughter, called to tell me the Cardiologist thinks he has Noonan Syndrome. He specifically told me not to Google - Noonan Syndrome - as the Cardiologist said it would only make me feel worse about things. The problem is that I was a graduated student of biomedical engineering and I took a Human Medical Physiology course and I remember reading something about Noonan Syndrome, so I had to Google it. When I started reading the characteristics, the tears started streaming down my face, every little quirk that I though was so cute and loved about him, where all characteristics of Noonan Syndrome. I knew that the Cardiologist didn't just have a "hunch" but that she knew what she was talking about, and it was clinically confirmed by the Geneticist later that day and then absolutely by the genetic testing results received 6 weeks later.
It took a long long time for me to get past looking at these characteristics as flaws and to begin falling in love with them all over again.
While at my son's preschool today, a new Mom stopped me to ask me how old my son was. I told her 3 years old, but that he is small for his age (thanks to Noonan Syndrome). She was staring at him and I'm not sure how the conversation turned in such a direction, but I mentioned that he had a rather rare genetic disorder and that's why he's small for his age. She proceeded to say to me, and this is where I was "sucker punched" - I knew something wasn't right, I could tell by his chin and his ears. She then asked what genetic disorder he had, and I told her and she wasn't really familiar with it. She thanked me for being so open as she was currently finishing up her last class and rotation in Nursing and was in pediatrics.
She also made a comment that he seems so intelligent. Why is it that when people hear "genetic disorder" they think of someone who has low intelligence? My son is a very bright boy and I am so grateful for his gift of intelligence. He may not be slated for a full scholarship to an Ivy League school, but he definitely will hold his own! I have no doubt!
My heart sank to my knees, I guess down deep I was hoping that he looked "normal" to everyone else, maybe a little small but I didn't want them to see the triangular face, small chin, low set and turned back ears - all characteristics of Noonan Syndrome. I just wanted her to see him as that "cute little boy" that he is.
I relish every "oh my gosh he is so darn cute" comments from strangers. I eat them up and hold them very close to my heart. I know now why I do, because today, I felt so very sucker punched, so much so that when I got home I went into the bathroom and sobbed. And I must admit, I'm sobbing now as I compose this post.
I hope it helps to know you're not alone and that it's okay to mourn. We mourn the child we thought we were getting, we mourn the loss of innocence our children will have to face, we mourn the loss of the life we thought we would live as a family. It's not fair and it sucks what we and our kids have to go through. Mourn when you need to. It will give you strength to face the next day.
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