Fragility

I must admit I've not always been an optimist.  I think I was born with a pessimistic gene and I've spend the better part of my life trying to see the glass as half full instead of half empty.  It's a hard thing to correct but I've gotten to a point where I believe in the ability to train myself to be optimistic.  I've done really well over the last year.

Last night I had a "fragile moment".  I have felt really weird this week - almost like "Chicken Little" where she runs around worrying about the sky falling.  Like a shoes about to drop or there is some impending doom.  I hate this feeling and I can't shake it.  It's not anxiety - I know what that feels like, it's just this weird ominous feeling.  I wish it would go away.

So as I was laying in bed last night tears trickled down my cheeks, I tried to figure out what could possibly cause this "weird" feeling.  And then I got to thinking about my son.

I'm a member of Noonan's support board. Almost daily I get emails about children with Noonans and some of their medical and developmental issues.  Sadly, I haven't participated on the board or responded to any emails but I read them and soak in the information and file it away and hopes that I don't have to retrieve it in the future because my son has developed the same issue (whatever that issue is).  After my son was diagnosed with Noonan Syndrome when he was 6 months old, I ran to "google" to find as much information and support as possible.  I was fortunate to come across a blog of another mom who had a daughter with Noonans.  Her daughter is about 6 months older than my son.  So I almost feel like our kids are growing up together.  Noonans effects several different genes - my son's mutation is different then her daughter's mutation.  So some of the issues we face are slightly different but in a lot of ways they are the same.  I've been so busy that I got behind in my "blog" reading but came across a post that this friend of mine posted on the Noonan Support and my heart sank.  She mentioned that her child's cardiologist wanted her daughter to be seen by a specialist that deals with a heart condition that basically "hardens" the heart muscle which can eventually lead to heart failure.  Her email stung me like a dozen bees.  It just made Noonans more real and more threatening to me.  I've fallen in love with her daughter through reading about her in her Mom's blog.  She's a sweet little girl.  So this possible shift in her heart health really hit me hard.  Like I wish I had a magic want so I could make things perfect.  The Mom, although we haven't met in person just yet, has been a rock for me.  She gets what I have faced over the last 3 1/2 years because she's dealt with the challenges Noonan's poses.  I get what she has faced too.  Much like kindred spirits we are.  So I wanted so badly to climb through my computer and give both the Mom and the little girl a hug.  Hopefully, this new heart twist is nothing but a mis-reading of an echocardiogram, because that can happen.

Since my friend posted her email, she's had a lot of responses of other kids with Noonans who have faced the same or similar heart conditions as her daughter.  Some of the kids also have the same heart valve issue my son has.  Reading some of those emails sort of felt like a slap in the face wake up call.  It made me start thinking that I need to be prepared for my son's potential heart issues.  For so long, we've have ridden the good and safe wave when it has come to my son's heart.  He's managed to keep the "ticker" in a good place even through all the other medical adversities he faced in 2011.  But now he's finally growing and as the body grows so does the heart.  A growing heart can develop complications, especially to his pulmonary valve, and a valve that doesn't work properly can cause a heart to work harder and which in turn could cause hardening of the heart muscle.  I've known all this from the beginning but since everything has gone well in that area of his body so far, I sort of threw it in the basement of my mind with all the other brain clutter.  It appears my brain is doing some de-cluttering and it found this info in one of the boxes in my brain and it's making me feel uneasy.  My son looks and acts like any other normal child.  In fact, we had a doctor tell my husband the other day, that with just looking at my son without reading his "medical chart" she would never had suspected all the issues he had.  That we've done a good job with him, keeping him healthy!  So I often forget that he's a bit medically fragile. Yesterday was a rough day, my son was being a "brat" and I yelled at him.  I punished him.  I treated him like a "normal" little boy who is 3 1/2 years old and being a butt-head.  So when I stopped reading the book I was reading and tried to fall asleep, I felt bad for being a "tough" mom on him yesterday, for yelling at him - because I realized that someday his heart might be too fragile and who knows what else.  I think I got a little scared, hence the tears.

It's times like these where I wished I was a cardiologist and owned an echocardiogram so I could look at my child's heart whenever I felt a bit uneasy.  I'm sure he's okay, but you never truly know until the ultrasound wand hits his heart and you see it pumping away and they take all the necessary readings.  Just stinks to have to live life between cardiology appointments that are 6+ months apart.