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Life isn't supposed to be this way
by Niloo Soleimani
Some of you are going to think, How absurd? Some of you: This woman is crazy. But most of you are going to read it and forget. This is NOT my personal story but it is based on a true story of a woman just like you. There are no happily-ever-afters. Yes, serious problems do happen*. And yes it can happen to you too....
So your are a highly educated and highly paid director and you want to have a baby. Your body is screaming BABY, BABY. Every baby you see either pisses you off or makes you teary eyed, because you want your own. Finally, the time comes and you and your husband are ready; Planned parenthood, what a concept. You are settled financially, mentally and in all other ways. You've been there, done that and so now the time is right.
One day, boom the pregnancy test is positive! Yeay, "We're pregnant," you tell your husband. Wow, I'm going to be a mother. I wonder what that's like. You pass the first trimester and all the nausea. You take care of yourself, eat the right food, take your prenatal vitamins, go to all your appointments. Okay, this ain't so bad.
You start dreaming about what it would be like, Holding your little baby, dressing your little girl, feeling complete and at peace. Your hand automatically goes on your bloated stomach as if to protect her from everything and anything. My baby!
Okay 9 months pass and we won't even talk about the childbirth! It will make you change your mind right here and now. How can a seven-, eight-, or even nine-pound baby manages to fit through an opening roughly the diameter of a bagel? Plus the 20 long hours of labor pain. But which masochistic person would try "natural" birth? No way in hell!! Yeah, go for the C-Section. Much more humane! Okay, so the baby is out, you are hormonal and cry for no reason, your husband doesn't understand and over night he becomes a jerk.
Fast forward again. Your baby girl is over 1 year old and she can't walk. What can be wrong? "Oh, different babies have different schedules," says the doctor. Six months later, she still can't walk. "Not to worry but let's do an MRI to be sure." An MRI, is that really necessary? "Ah, well, your child has Spina Bifida," the doctor tells you quietly. Spina what? "Spina bifida is a developmental congenital disorder. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open," says the doctor in one breath. You are thinking: WTF but you say, "what does that mean doctor? What do we have to do?"
"Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Your child may or may not walk," the doctor is solemn. Then you can't help it and you puke all over the nice doctor. "But she's only 2 years old! How can this happen? " you are starting to get hysterical. "I took care of myself. Why? Why doctor? What went wrong?" This can't be your fault. "The cause is really unknown. Did you take your folic acid?" He asks. "Of course I did, you moron." Your husband tries to calm you down by holding you tightly. Let me go you asshole!
Fast forward five more years. There's been several surgeries. Your daughter can walk but she does not have bladder or urine control. You got fired from your $200,000 job because you were absent a lot and your heart wasn't in it. Your husband doesn't make enough money to pay the mortgage. So your house goes into foreclosure. You talk less and less to your husband. Sex? Forget about it.
You try to keep your chin up. Your heart is beaten and scarred from watching your little child go through so much pain. You almost killed that one O.R. nurse who was supposed to be the best but could not find a vain for the IV and poked your little girl over and over while she screamed: "Mama help me, Mama Help me." And your heart bled along with your daughter. Except no one gave you any treatment for your bleeding heart. Now, one little word sets you off crying. So you get some anti-depressant pills to help you continue taking the torture.
Now, she's going to Kindergarten. You have to fight with the school and the district to get a 504 disability report and an ILP (Individualized Learning Plan). But they have no money for an aide. You ask the principal: "So who is going to clean my girl when she has a bowl movement (BM)?"
"Don't worry, I, myself and my staff will be on top of it," replies the principal. You've got to be kidding? you want to scream but instead you say: "But they are busy doing their jobs and that doesn't require cleaning my daughter's poop.
"We are a team. Let's try it out and see how it works," the principal says confidently. Well it doesn't work out. Your daughter is constantly in poop and nobody to clean her. One time you pick her up and she's been rolling in poop for 4 hours. You are now ready to kill!
Fast forward, and she's in first grade. You realize she has symptoms of autism. Yes! Autism. How can that be? Is just is. You get her tested and she has Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS). WTF? What is "Not Otherwise Specified?" Did they run out of words? "Well it is a high functioning form of autism on the Autism Spectrum Disorder (ASD)," they explain to you.
Your daughter wants to make friends so badly but her weird behavior freaks the other kids. There's no medicine or cure. Your heart breaks for her again and again. You read 20 books on Autism. You learn everything there's to know and apply it. You get specialists for your child and there's little change "It takes years for her to learn, mam. At least she's got high-functioning autism," the specialists tell you. "It's really not that noticeable." You want to kill them too!
Your friends keep posting "feel good" messages on Facebook: Have Faith! Disappointments are just God's way of saying I've got something better. Be Patient! Have Faith!" Why God? Why? What did I ever do to deserve this? I have been a good person all my life. Why are you punishing me? You read another "feel good" message. "The world is full of beauty when the heart is filled with love." Love?!!! Give me a f*king break. I have no more love left. Why don't you go through what I'm going through and then see how you can handle it! You want to kill your friends too.
You hate life, you hate motherhood. It's not supposed to be this way! It's supposed to be all cuddly and cute, roses and butterflies. But instead it is filled with pain and suffering. How come nobody told me how hard it was? How come everybody wanted me to have a baby? Some said: "It's the best job in the world, so rewarding." Others said: "Oh, I love my children. they are the best thing that ever happened to me." How come no mother ever complains about the the hard work, the suffering or the fact you will never have your own identity again. It is a horrible job that you can't quit; you are just a 24/7 slave at the beckon call of your child for the rest of your life!! Why doesn't any one ever say: Motherhood sucks? Am I the only one who feels this way?
You love your daughter but you start to resent her for the last 7 years, for all the pain. Your husband leaves you because he's sick of your crying and can't tolerate a developmentally delayed kid. You are all alone. And you continue to cry and sometimes wail, mostly for the dreams that never came true....
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