Sometimes I feel so cheated. I know it's not fair to feel like this, but I can't help myself. I am having a down day today regardless of the sunshine and blooming flowers. I am so tired I can't sleep and I just want the pain in my head to end. Why does my baby have to have autism? I want to have a big huge pity party, for me. But what's so selfish is that it isn't me living day in and out as an autistic person in the "normal" person's world, but my son...and his disability matters less to him than it does to me. Some days I just want to scream and shout and cry and suck all of that unknown world of his into my own body so that he can have one day of freedom. It would be so wonderful to have the chance to just for one day know what it was like to be him, living in his mind. I think if I had that chance I would be a more patient and accepting mom. But I can never have that chance and instead I live in dread of each new day...my entire life is consumed by autism....I eat, drink, breathe, think, drive, walk, sleep it. I focus on nothing else...how can I when Kaed's autism affects everyone around me so much? When I don't know what I am doing right and what I am doing wrong and how it's making my son feel and what i should be doing differently and when I should touch him and when I should leave him be? When I don't know if my child will ever be able to live in this world on his own, if what i as his parent am preparing him for is even necessary. My mind is ready to blow. And what's even worse about it all is that I can still live a normal life, yet inside I am so shaken up and confused and hurting. I can still smile and laugh and talk and go about the normal daily routine. I can even feel good, laughing with friends and and creating a healthy balanced meal. I live autism so deeply that it's almost non-existent, except for that piece of me that just can't do it any more...that piece of me that hurts too deeply, that cries too many tears, that eats to swallow the pain. And that piece of me never leaves, even as I live this perfect existence. How can I accept what is? How can I just for one minute in my life know that things will be okay? I am so selfish. As I sit here my son is playing on the playground after lunch, probably laughing with the kids he's playing with, probably playing a prank that may get him into trouble, probably pretending to be a Winx character, maybe for the chance to leave his own self for just a little while. But he's probably happy, as I generally think that Kaeden is. Why can't I be happy too? Why do I let autism eat away at me like it does so that my mind isn't available to do and be more of what I would like? And how can I feel so darn pitiful when I can hold my son and feel his arms wrap around me in a hug and taste his sweet kisses and hear his freeing laughter...how can I be so selfish...as my girlfriend mourns the death of her baby I am the one feeling cheated, wondering what I did wrong to have this happen to me, to my perfect child. Who do I think I am that I have the right to mourn this child when I have him here in my life? Yet I do...I mourn what he could have been and what he has to go through to make strides and achieve. I mourn my own loss of mothering a normal kid, one that I don't worry every minute of every day whether he will make it in this great big world. I am mourning right alongside my friend, yet I am selfish as she is strong. As I mourn the loss of her baby and what so unfairly was taken from her (believe me I do sche deeply for her), I also mourn the loss of who my son may have been...and I am not celebrating who he is and what he has achieved even as he stands beside me. I am not honoring him as he deserves to be honored. I really need a reality check today...one that will help me to claim back that piece of my brain that has been lost to autism...yes, today I am suffering.
3 comments:
Dear Tera,
My son is not autistic, but he suffers from profound OCD and Tourettes. I was constantly on the defense with teachers, relatives, friends and even his own father.
Subsequently, I believe that my son felt my defense and came to believe that he was worthless. By the time he was ten, he was entertaining the idea of suicide.
Alarmed, I knew I needed to change. He was born this way, and there is nothing I could do to change that, but I could change my attitude about his disability. I accepted that God made him this way for a reason that perhaps we have yet to determine. I accepted my son as he is which allowed him to accept himself.
When I changed my attitude - the people around me and my son changed as well. He is now fifteen years old, doing well in high school and he has even made friends - something that eluded him before.
His disabillity has not changed, but we both learned that he is not his disability - he is his own person.
May God bless you indeed.
I just dropped in. I just started my first blog. After that i just clicked the Next Blog. Anyway here I am. Having read it ' I should say bringing up Kaed is not easy. I know it because a close friend of mine also has a son who suffers from Autism. He doesn't respond much to surroundings and he has compulsive behaviour. You are a brave woman Tera, no one can stand in your shoes and make it all go away. Take each day as it comes.
There are days when all seem to go worse. You can face it. Know that. No trouble has ever visited man or woman without leaving a blessing also. It may be that in addressing the challenge you have developed inner resources to cope with it. I am talking purely from the point of laws of Nature.'
Best wishes,
benny
Tera,
I love you so much. Don't feel guilty for feeling cheated. We create dreams and hopes and wishes for our children even before the conception of them. The only emotion that comes near the sadness of Ricky's death is the death of all of the hopes and dreams that I had for him. Actually, mourning his death is easier in some respects than morning the death of my broken dreams for him. The death of the human body... that I've faced before, that I know how to deal with. The death of my dreams for him is much trickier.
I have never been in the situation that you are in and I have no idea what it is like. I do know, however, that if I were in the same situation, I'm really not sure that I could handle it with the strength, and dedication, and grace that you do.
You are a beautiful woman, and a beautiful mother, and a beautiful friend. There is NOTHING selfish about you, and please don't look at me and feel inadequate. Maybe you look at me and see strength, but really I'm just living minute to minute and doing my best to make it through. We really don't have a choice but to try and keep living, do we?
Kaeden is a beautiful and precious child and there is no mother on the planet who loves her children more than you do. There is nothing wrong with mourning your broken dreams. We must mourn the broken dreams in order to create new dreams.
I love you, and I'm so sorry that life is sometimes so difficult for you. I don't know why life has chosen you to face these challenges, but I do know that you are the perfect mother to your two beautiful boys. YOU were chosen to be their mother and no matter what challenges you face, no matter how inadequate you sometimes feel, know that you are a GOOD MOTHER!
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