Angels

So in my first post I referred to the angelic presence in my life.  My youngest child, Veronica (aka Ronnie) was diagnosed with Angelman syndrome just after her 2nd birthday.  This is a genetic disorder that leads to a global delay in development.  In other words, both her motor skills and her neurological development have moderate to severe delays.  She is now 9 years old but is, in a lot of ways, like a 2 year old child.  Very dependent on everyone for what we call "activities of daily living". 

Don't let the name of the disorder affect your thinking however: she is a very energetic and fun loving kid.  She much prefers to play with people than toys and she really loves to interact with others.  She can be manipulative and bratty and knows just which buttons to push to get her sister really mad.  But she can also be cuddly and sweet and have just the right touch to get your attention.  One of her favorite activities is getting to climb into bed with mom and dad on the weekends and just jump around and cuddle and play.  Once she gets her cuddle time, she's good for the day..

Having two kids is challenging; throw one in with special needs and you discover just how strong a person you can be.  My husband and I have this sort of ongoing conversation: do babies pick their parents or do parents get the kids they need or, third option, is it just fluke?  He thinks that the kids choose their parents and I'm not sure.  One thing I can say is that having a child with special needs helps you put things in perspective.

I often get people asking me how I can be such a positive person with what we've had to go through.  Part of me wants to say: "Well, what do you expect?  Am I supposed to be depressed constantly because my child is disabled?" and part of me wants to say "You can't stay miserable forever; that's no way to live".  I think I usually end up saying the last one.  We both certainly went through the phases and reality is that you do go through a grieving process.  This child will not be able to live out the dreams I've imagined for her.  That is my heartbreak.

However, you can't stay depressed or angry forever.  You need to incorporate it into your life in a way that lets you continue to live while making space for this new challenge.  Nothing is insurmountable.

Til next time.