To All Those Who Know Somebody

When we first received news of our childrens' diagnosis, I poured my heart out to our families explaining. With the understanding that they to emotionally had to deal with the news. Assuming in the end it was the children who they would be most concerned about. After endless conversations, explanations, and responses, an ominous cloud circled my head. This feeling of a void and an almost emotional bankruptcy from all the energy poured into it. I had no concept of the words I longed to hear from loved ones. Then one morning as my eyes gently lifted, it was as clear as if it had been written on the wall. Those words that anyone could have said, if only they could see.

There were many reactions. "Well, you will do what you have to do". The truth is no one had any concept of what lie ahead for our family. Secondly, what we have to is minimal. We will not do what we have to , we will do everything we can for our children. Many say they do what they have to or could and it is a small fraction of their ability or will. Do not diminish our passion, energy, endless love and will by which we love our children.

I also heard "We love them, no matter what". I do not believe one needs to pat oneself on the back for loving someone inspite of there differences. Love is not possible unless you love someone as a whole for who they are. No matter what, has no place. Our children are who they are. Please do not pray our children away. Pray for people to learn, then there will be fewer lessons for god to teach. Do not pity parents who are able to see a prism of gifts where most see a mirror. As well, do not pity a child of such purity and goodness that they are meant to be the teachers. Our children are our inspiration the magic and music in our lives.

Please do not tell us how capable we are or how great the therapies are now a days. We know therapy, we live by the schedules , participate, extend the therapies, and establish critical relationships. "You will handle it". These comments are simply to allow one to ignore any personal feeling of obligation to help.

I must say worst of all are the comments made out of ignorance. Please do not say things like, "You mean he is not going to just start talking". Do not diminish their accomplishments by diminishimng theirs struggles. Avoid comments such as "It is not like he is rain man, is he?" Such ignorance is infectious and toxic. Please get over yourselves enough not to worry if your genetics played a role, "It is just you and your husbands DNA, it has nothing to do with us". As if being connected genetically was a sort of cancer or scarlet letter.

Please, please, if you love someone do not make them be your personal tutor. Every day it is our job to break down the walls of ignorance and demand respect and treatment for our children. Do not be part of that battle. Love someone enough to educate yourself and simply avoid hurtfull myths.

After all the comments and seeing how each felt some sort of grief with my beautiful children being who they are. After convincing myself deep down each cared for our children in their own way. Reality is they have nothing to accept, nothing to rationalize, they only have miracles to love and yet few have found the ability within them selves to do such a simple thing. So what was my heart aching to hear. Simply this. WE LOVE YOU ALL! IS THERE ANYTHING WE CAN DO TO HELP?

I am not writing this to be cynical. The fact is peoples responses had more to do with them, then anything to do with our children. I simply believe when you truly love someone it dose not mean changing them it is being there to love them and simply offer a hand. The truth is if anyone had asked there would have been a great many things they could have done. But the overwhelming response, without the question being asked, was we simply can't do anything or live to far away. I am writing this so maybe a family member will say those simple words, to someone else. I love our families. For myself, the next time I am given the chance to learn from another I know what I will say!