The Box

Greetings & Blessings to all who read this.

As humans we try to find the place we fit, our box, an area that defines us to ourselves and to our communities around us.

When we have our children we begin the process for them. It is natural. "I want Beth to grow up like such and such", "I hope David likes to do such and such" Then our children start to create their own boxes with likes, dislikes, friends, and activities.

And sometimes our kiddos are given a box from birth: genetic disorder, cerebral palsy, autism...the list goes on. As a parent we try to get an understanding of this box, sometimes like in our situation the box is cerebral palsy but later we found out the box was Angelman Syndrome. With the change in diagnosis for us there was a sense of relief, I know that may sound weird but I had carried a huge amount of guilt over my son's birth. It wasn't easy, there was meconium, he had heart decelerations because the cord was wrapped and crimped around his neck. They had been inducing me for over a week and I was exhausted. I had talked to my doctor about just doing a c-section but wasn't very adamant about it, hindsight of course I wish I had been, we ended up with an emergency c-section anyways. So that hesitation has haunted me, would things have been different if I stood up for my kiddo and myself, because of my weakness did my kiddo suffer. So upon learning my son has Angelman Syndrome that guilt was released. I had worked on releasing it for 5 yrs but this let me finally release it into well wherever. I had been doing what needed to be done for my kiddo within my box of guilt, somehow trying to make up for what I believed were my deficiencies.

So now there is a new box on our doorstep...Angelman Syndrome. What are the parameters of this box? Well there are general parameters in looking at the clinical diagnosis of what Angels can and cannot do. However it is through www.angelmanforum.org that I have found and been reminded that boxes stretch!

It can be frustrating when it comes to services and schooling for special need kiddos, we need a diagnosis, that box that says oh yes you can get such and such or no you can't have such and such. Then once we have people and services in place comes the battle to pull our kiddos out of their box. I have found this especially difficult in the school district. Trying to get them to see our kiddos benefit from certain services, maybe the progress isn't in their idea of what it should be, but whether your kiddos progress is Mt. Everest or a rolling hillside, the point is there is progress! My kiddos progress is a little like the lil train slowly moving up a hill, but hey he is moving and should it flatten out for awhile well I know there is another slope on the way.

So my roar to myself and to all families out there...
Yes there is this box that gets hard to carry, that is ready to define limits on our kiddos from the outside world. BUT... this box stretches as our Angels light up our life everyday. Punch out those borders! Specialists may say one thing but parents of special need kiddos who are with their kiddos 24/7 in the trenches know their kiddos best. Boxes are our guidelines not our definition.

We all know coloring and venturing out of those lines is where the joy of life begins!