It's funny It's funny how the mind works. As I processing what to write on the blog today, I was reflecting on some of the things my wife has written on her blog (http://downrightfaith.com/weblog) one of the most inspiration and thought provoking things is her snow globe analogy on the "mother's perspective" page in which she talks about life being like a snow globe and everything had just settled down and was calm and then God picked up her globe and shook it. I am probably not doing it justice... please read it yourself it is a wonderful story.... The point was :-) I have read many people's stories about what it was like getting the news getting you are going to or you have had a special needs baby. One of the more famous is you on a plane to go on vacation and ending up in a different country.
For me, I think I went through the various thoughts a father might have, I mourned for the things she wouldn't be able to do and as a result the things I wouldn't be able to do like she wouldn't be able to marry/and I wouldn't get to walk her down the aisle. I think most of those thoughts were quickly replaced with the thoughts that she would be able to do anything she put her mind to, same as my sons, same as anyone else, she will live up to her potential and into her expectations, if we don't limit those, neither will she.
My next thought was a fear for her outward appearance, not that I wouldn't love her but that other people would find it hard to get past it to her heart. If I am honest the image that first came to mind was the one from middle school health class, the black and white picture of a boy with down syndrome, I think it might have been entitled "Mongoloid Child". It only took about two minutes to search online to replace that image with hundreds of others, children that were beautiful. You can see Sydney on the right, but if you go to my wife's website you can see other pictures of her as well as find links to many other families blessed with children who have down syndrome, if you have that "mongoloid" image in your mind I encourage you to replace it, that is a face of down syndrome yes but it is taken out of context. That same face with a smile or that same face looked at with love is a thing of beauty.
I seem to be chasing rabbits this morning... I will come back to those and other thoughts in a later post. The thing I thought about today and thought about when we got the news 2 years ago and honestly think about every two weeks if not more is money. Not the typical money questions, truth be told I am not a worrier, I truly believe God will and has provided for our every need. That being said I still catch myself worrying about the future, not my future but Sydney's.
One difference in parents who have children with special need and those that don't is how they think about the future. Before we got the news that Sydney had down syndrome my thoughts were I will be 41 when she is born, that means I will be 59 going on 60 when she starts college or said another way I will be ready to retire when she starts her career 65 - 24. Now my thought is still the same, she will probably be ready to start college at about the same age. This is a BIG change from 20 years ago... in the '80s people with downs life expectancy was about 25 years and graduating from high school much less college was un-heard of. Today the life expectance is about 49 (doubled in the last 20 years) who knows with medical changes etc etc Sydney and her peer's life expectance might grow that much again which would be 75 (or 98 if it doubled). which brings me back to where I started..."Payday thoughts" What can I do..? How do I...? What is the best way to go about...? What should I be doing...? to make sure Sydney is taken care of after we are gone?
Here is my thought process. Sydney is 41 years younger than me. When she reaches the current life expectancy of people with downs, 49, I will be 90 years old. When she reaches 75 I will be 116, my goal has always been 110 so that is push it a little :-) What can I do to make sure she is as self sufficient? How do I help her live on her own? What is the best way to go about making sure her brothers are there to help her, but not do it for her? What should I be doing to get her ready to live on her own, a self reliant productive life in which she is in control. How do I ensure all three children are ready to live their lives, understand money, not make the same mistakes I have made. I think I know how to do this with the boys, I am not sure I know how, YET, to do this with Sydney.
So, what do I do...honestly sometimes I cry, sometimes I run through worst case scenarios. Ultimately I do the only thing that works... I give it to God. I know that God will provide for her and the boys the same way he provides for Jen and I. I know that God will open the doors and lead the way if I let him. As a good friend of mine puts it, I am God's son, and they are my children, but they are not God's grandchildren, they are in fact His sons and daughter, and he loves them as much as me and you. So the one thing I can do is set a good example, and into God's promises, and in their own time, they will do the same. This then ends the worrying :-)
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