Tuesday, November 2, 2010

living for now...

A good friend and Angelman parent wisely told me some time ago "Meagan, the hole in your heart will always be there; sometimes it just won’t feel as big". She is right of course, right now - things are good.
Don't get me wrong, I abhor Angelman Syndrome. I don't think that I was chosen for this job or that this is the way Molly is meant to be, I think that Molly has dreams, aspirations and most of all - she wants to be doing what the other kids are doing! I will never stop trying to make that happen for her. Having said that, I completely accept that Molly has been diagnosed with Angelman Syndrome (I've seen the test results!) I just dont accept that it has to stay that way. There is a better life for her and I am confident that it will happen.

In those dark days around diagnosis, I never would of believed that at this point in time we could be so blissfully unaware of Molly’s disability. Of course things happen at times that jolt us back to reality (the "well meaning" busy body in the shopping centre that tells me Molly should get out of the pram and walk) but most of the time this is the life we know and we go about our lives. It won’t always be this way but a valuable lesson we have learned through all of this is is to live for the moment whenever possible.

Molly is going great guns, it’s like a switch has been flicked and things are finally working for her.
Her seizures have been controlled since my last post (while I am typing I am furiously looking for the proverbial piece of wood!) her weight is reaching a normal range for her age and height and we are even thinking of removing her feeding peg. Mollys cognition has exceeded the dismal predictions we were given early on and she is communicating her wants and needs to us on a basic level with picture cards and her new iPad (generously donated to us by the local Rotary Club). 
Mobility is entering a new phase with a new walking frame that we have dubbed "Forrest" after the iconic line from the movie of the same name "from that day on, if I was ever going somewhere, I was RUNNING!”  Walking is still eluding her but with lots of practice and her great therapy team we will get there.
Molly is a wonderful, bubbly, determined child with a personality that has nothing to do with Angelman Syndrome and she is very much valued member of our family and friends lives!

"Never let the future disturb you.  You will meet it, if you have to, with the same weapons of reason which today arm you against the present."  ~ Marcus Aurelius Antoninus