The Road Less Traveled

 

I never dreamed that all the twists and turns of my life would bring me down the road less traveled, to here, to Rett Syndrome. I remember a boy in our neighborhood who had polio, he used braces, but he was funny and I pathliked him. I never gave much thought to how he must have struggled or the anguish his mother must have held within her heart. I remember the disabled adults at our school who sang Sesame Street Songs at the spring concert one year and how happy they were, but I recall feeling sorry for them, never knowing that these were the lucky ones. THE LUCKY ONES! I never ever knew growing up that there were children who couldn’t speak at all. I never even knew what a seizure was, or that children that weren’t this “high functioning” were most likely in institutions and how horrible that must have been. I was ignorant. But I do remember thinking, I’m glad I won’t have a kid like that when I grow up, it would be too sad. And then along came Katie…..

and I got a great big Gibb slap to the back of the head.

Through the years, I’ve often thought of those parents long ago and how they must have loved their children so and felt so helpless in an age when there weren’t nearly the services there are now. I cannot imagine how they did it, not one bit. I’m sure their struggle and fortitude resulted in the world Katie came into, one of more acceptance and help. But, I wonder all those years ago, did I make them sad, those disabled adults I never talked to, though I saw them every day in the school. I hurt from knowing I should have, could have just made their day with a “hi”, because I know how much it would hurt me if people didn’t talk to Katie.  I think back and know now the pride in their children those parents had and the joy they felt hearing them sing. What I wouldn’t give to hear Katie sing.

Each day now that we get closer to leaving for Texas and the hope it represents, I am hit again by the staggering, heart wrenching loss of what could have been.

I will never help Katie get ready for the “real” prom, never see her get married, never hold her child in my arms. We’ll never argue because she stayed out past curfew because the boy “ran out of gas”. She never told her sister secrets in the dark under the covers when they both should have been asleep, nor covered for her so she wouldn’t get in trouble, her brother won’t ever have to give “the brother talk” to a boyfriend, and they’ll never double date. I won’t get to help her pick out a wedding dress or drive her to the airport because she just got a job on the other side of the country. And every time I see a girl her age, getting to do all the wonderful, fun things girls her age get to do, it’s like being hit with a sledge hammer over and over. And you never know when it will strike. Maybe in KMART when you see a child pick out their Halloween costume, and you know that Halloween just is no fun for your girl. Maybe it’s watching “Say Yes ToThe Dress”, knowing that will never happen, or watching girls huddle at a table somewhere and giggle over the cute new boy at school.

Poof.  Gone.  Never Going to Happen.

And yes, the can’s and the do’s outweigh those can’ts and wont’s, but there are times I wonder if the day will come when I can say I haven’t grieved a loss all year. That’s what I hope for parents of newly diagnosed Rett children, that one day, with help and research, they won’t ever need to grieve a loss again.

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4 Responses to The Road Less Traveled

  1. Linda E. Williams RN says:

    Brutally sad; we experience such moments to keep us grounded in reality. After my young husband died, and the holidays approached, it hurt to pass by cards for husbands and men’s departments because there was no longer the need or joy to choose a present for him. There were lots in my life that would never be, and even though I knew that, the yearning remained, especially when I was tired and beyond tired with three little children. BUT we move through it because we’re supposed to–for whatever reason–. Life goes on and we must move with it if there is to be a chance for happiness up the road. My thoughts and prayers go with you. Love, Linda

  2. melelllan says:

    Linda, I understand these things happen to all of us, but until they do some people just can’t understand, can they? My days are full of wonder and beautiful things, but the sadness comes in through the back door sometimes. But YES! Move forward we must, and so we shall. And I can’t wait to tell you all about it when we get back. Happy Holidays.

  3. Wayne says:

    Thank you for allowing us to share your journey. I have come several times to this post wondering what words could comfort but in the end realising that it is only hope which brings some light to lead us forward. So as you go forward with the trial, it is our hope that a Mother’s joy can be restored with smiles and laughing over simple things which for Katie may be extraordinary changes in her world.

  4. Betty Berger says:

    Mel, forgive me for not reading this sooner.
    I can relate to the feelings you talked about in the beginning of your story here about the child with polio and how you felt about when you said “I won’t have a child like that”. When my kids were little I would go shopping or see kids in the school who were handicapped or obviously sick and I would think to myself how lucky I was that my kids were healthy and had a normal childhood. Then I got the “Gibb slap”. Jeff was diagnosed with Cancer on November 23, 1987. That was 26 years ago tomorrow. What an eye opener that was. Although it can’t be even compared to what you have felt through the years with Katie it is just as devastating. How many times through Chemo and transplant I wanted to change places with my son. How the pain he was feeling I couldn’t make go away especially as you are holding him over the toilet as he empties his stomach of what little nutrition he took in on that day. All because of the effects of the chemo that would save his life. How hard it was to answer his question when he asked, “Mom am I going to die?” and have to say “I don’t know!” He made it through it twice. The second more devastating than the first. I fed off of his strength to get well. His attitude to fight back and live with his disease and beat it. At 19 when going through his relapse and transplant he said “If I threat it like my friend I can beat it again. If it treat it like the enemy it will win” Where did he get such wisdom? Such courage? Your Katie is in there somewhere. A lot like Jeff’s courage and wisdom. Something as he was growing up we never saw. Now as a man he works with me to help other children going through cancer treatments. I’m so proud that he is willing to do that.
    Your ability to document Katies life in you writings is encouragable. Such a lucky young woman she is to have you as her mother. Someone who will move heaven and earth for her to get her what she needs even at the expense of her own happiness and health. I’ve told you before how much I admire you. I hope this trial helps Katie and makes a difference in her life and the lives of other children with Rett. Keep up the good work, your strength and determination.

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