Sunday, January 20, 2008

All things made new

It is half way through January of 2008. I was so looking forward to getting out of 2007 to have a fresh start. I should have known that it was not the official start of a new year which made things new, but what I would change to make things new. There are many things with Ella that are not totally taken care of yet. Compared to deafness and blindness, they are nothing. But, they are where we are and have become magnified and huge and I spend much of my day thinking of her tilt and food coming out of her nose and the cold that she has had for 2 months. It's funny how that when problems come and go and when they go...a new one comes in to fill in the space the other one left. Even if it is not as big as the last one, it doesn't matter because it is what is present and feels real today.
We scheduled Ella's surgery - the surgery we have been waiting for since she was a day old and found out about the gaping hole within her mouth. At the time, there was nothing more devestating than that space in her body that needed to be filled. But, it soon had competition with her hearing and her vision and her eating and the cleft in her palate, became an incidental in our life. Still, it must be fixed in order for her to talk right and eat comfortably and laugh hysterically without reservation. And so on February 25, the hole will be closed. The surgery will last between 2 and 3 hours and when she comes out, with stitches and all, her mouth will be as it was always supposed to be.

Ella's physical therapist, Miriam, asked what this would mean for us. She thinks Ella is amazing and right on track with everything she should be doing. So, what does the surgery make different? First of all, she will learn to talk and make sounds that currently can't be made because she can't create pressure in her mouth. Second of all, she will be able to eat confidently and food will no longer come out of her nose when she tries to move it from the front of her mouth to the back. She will be able to make suction and suck from a bottle or a straw and actually get something out! She will swallow and begin to truly enjoy food. Lastly, it is a sign of so much for our future.

At first we thought this horrible diagnosis of Pierre Robin Sequence was going to destroy our life - seriously. But, like many ignorant people have said, "If you are going to have a birth defect, this is the one to have." Oh yea? Obviously they have never had a child, let alone a child that didn't come out exactly as expected. We are very fortunate that most, if not all, of the issues we are dealing with today will not be around tomorrow.

Ella's palate will be totally healed within a week. Our surgeon said it is one of the most amazing things to watch a child's mouth heal, after all they have been through, so quickly and to see how their recovery is much faster than that of an adult. It's a true testimony of how your past is not your future. How what was yesterday is not today. How all things, in time, are made new.