"When the future dies"

Written by Jean Williams

I hope you'll forgive me for the dramatic title to this little talk, but that is the way it seems. When your parents die, your past dies for those who remember your childhood is gone. When your spouse dies, your present dies for the one with whom you share your present is gone. When your child dies, your future dies, for those to whom you leave your treasures, both monetary and keepsake, and those who are to carry on your teachings and, yes, your genes are gone. It is devastating. It is against nature. It isn't "right" but it happens.

This also happens when you realize you have a dear little soul in your life who has mental retardation. You had no idea you had such plans for this baby, till the plans rise up and laugh at you. No, he's NOT going to play football, or even throw a football. No, he's NOT going to college, or high school, or middle school, or grade school, or kindergarten. He's going to have birthdays, but it is hard to celebrate for he has not grown up, just older. It is devastating. It is against nature. It isn't "right" but it happens.

You compare. You have a daughter, older by six years. She was an early talker, words at 11 months. She rules supreme as Queens of Hearts for both sets of doting grandparents. She conquers any one she wants with her looks but even more with her love of life, of wanting to "be" and "do" everything there is to be and do. With her, the goal is to slow her down for she rushes forward till she is exhausted and you must deal with the collapse. You love her deeply and dearly. And she has a "retarded" little brother. It is devastating. It is against nature. It isn't "right" but it happens.

When all these things became our family's "truth" I realized very quickly, that this handicap would handicap the whole family. I wanted our little girl to escape. I tried hard, but it was impossible. To explain: Please forgive this weak metaphor but perhaps it will make the point. If you have two brass candlesticks on your mantel, one is shiny bright, the other is tarnished, which do you polish? Do you refuse to polish the tarnished one because the shiny one doesn't need? Do you polish both candlesticks whether they need it or not?... or, Do you polish the one that needs it and thank God for the one that doesn't need it? I think the question answers its self. So you set forth on the polishing. This is a VERY big job. It isn't just a swipe with a dust cloth. It is a chemical bath with serious rubbing and buffing and there is no guarantee that the sheen will last more than a few minutes. Meanwhile, what is the shiny candlestick thinking? You are siblings. You know what that candlestick is thinking. And you are right. There is no way that it is fair. It is devastating. It is against nature. It isn't "right" but it happens.

Now matter how hard I tried, what the daughter saw was that this little brother moved into her territory and took total center stage, WAY more than is true in "regular" families, Way more. It didn't matter that she had even more attention and love than most of her peers. It was less than her brother. And she was right. My personal approach was to try to shield her from all of this polishing, but that was impossible. She suffered all the stigma and sadness that comes with the problem. Yet, somehow, I saw her as my ally. I saw her as being "with" me in this. She and I together would rejoice when the brass of the tarnished candlestick began to shine.

Now that I look back on this I see how unrealistic this was. Yet I also want to say that the bond between her and myself was very strong. We became good friends, as she grew older, once we got past the hurdles of the terrible teens. I supported her first marriage and her divorce. We took some wonderful "trips" together, just she and I, several times to San Francisco, once to Santa Fe. We never got to New Orleans but it was planned. I supported her second marriage though I had very serious reservations and I cheered with enormous pride when she achieved her Doctoral degree in Communication from The Ohio State University. I recognized the sad reason for the communication major, the little brother was nonverbal, but she was a "communicator". She loved in-depth outreach with others, including her students, as a professor, at the University of the Pacific, in Stockton, California.

And then came the day of the phone call, the phone call from California, "Mom, I have a lump in my breast." After I had reassured her that it may be nothing and to get busy on finding out, I hung up the phone and screamed... for a long time, till I couldn't talk. There is no reason to go into detail about the terrible three years that followed, years of hope and despair that finally ended in her death. I got the answer to my prayer that I could take care of her for she came home to Columbus and I DID take care of her. I wanted so much to prove to her finally and with no question that when her candlestick needed polishing I would POLISH, just as hard as long and as dedicatedly as I had on her little brother's. And she really did see that ...she really did.

And so, what is next? You rewrite the will. You research all the "services" you can find. You contemplate your person being on his own with no one to speak for him. That must not happen. After we are gone, who will see to our son's needs, who will act his guardian and see to it that he is cared for, who will make the decisions for him and speak for him when he is in harm's way? We never asked or expected our daughter to take hands-on care of our son, but we had truly counted on her being his guardian and supervising his care. We have been like a boat without an anchor. Not only have we lost our "bright and shining star" but we have no future! And yet we have been truly blessed for extended family, second cousins, have come forward for us and here today to learn more about what is expected of them if the care of our son should become their responsibility. Can it be that our son has a future? So do we sleep well at night? No, not really, for we know now about losing your future, but do we have HOPE? Indeed we do. And if you remember nothing else from this talk, as siblings, will you remember that perhaps your parents didn't WANT to have to polish the tarnished candlestick, but really had no choice. It is devastating. It is against nature. It isn't "right", but it happens.

Thank you for reading my story.