There is no way I will let her see the light by having surgery. That’s because I have to make sure she is fine, that everything is under control. This time around, it will not be days before they let me hold my child. I will do all that I can. I refuse to focus on the possible outcome of second trimester bleeding, pre eclampsia, and pre term labor. I am going to get through it all. I get ready. I read all that I can to be fully informed so that when the time comes I have the knowledge to either order and or decide of each and every intervention. I stay in bed 24 hours a day and lie on my left side so that I can keep the blood pressure under control, drink tons of water to help my condition, count her movements every hour as required, listen to and follow each and every recommendation issued, and spend the last 20 weeks patiently waiting – without any form of complaint – for it to be over so that I can hold her in my arms in the moments that follow her first breath.
And it works. She comes on her due date and I hold her soon after her scream tears through the air around us.
But there are signs. She looks at me and stops crying immediately. We bond but she is older and smarter and only the two of us know at that very moment that things are different. Brilliant conception. I notice. One cheek is smaller and her feet are oh so long – not quite right. As they take her from me, she screams like there is no tomorrow. Hypersensitive. I know it. Someone notices and comments but it stays at that. Nothing.
They keep her for hours – the test results are off they say. And then when they bring her back she can’t stop crying. I plead. Please let me sleep. But then they say she wants my arms for the night. So I sit up, hold her, and I close my eyes. She is happy and that’s how we spend our first night.
Two weeks later she is beautiful. Everyone loves to look at her thick curly black hair, pale skin, and large blue eyes. Strangers stop to observe her. They call her Snow White. But something is different about Snow White, she can’t tolerate light, won’t sleep in my arms, her pupils are fully dilated – even when there is little light, and she can’t seem to stand anything. Hypersensitive.
Her teeth emerge and they cut like knives. I find her standing in her crib, blood splattered all over in a pattern similar to that of a crime scene often depicted on TV. Her little hands holding the rail, blood dripping from her mouth, she smiles. I clean her gently and love her. My child.
She is quiet and happy but not expressive like other babies. At eight months she is solitary, crawls a bit, aligns toys on a lower shelf where they belong. Does this make sense? She is observant – always. She speaks at a very young age. By nine months, she says “will fall down”. I’m amazed, how can that be possible?
She’s sitting on a slay with her sister and two other little friends. The neighbors. I pull them in soft snow. They are all happy. The slay tips, the children gently roll onto their sides, face forward in the soft snow. I pick her up and again, her chin is covered in blood. The other kids are all fine, smiling and laughing – my neighbor tells me something is wrong with my baby.
And it happens again and again. I speak to the doctor. I am worried. How can she cut herself inside her mouth with her own teeth – something is wrong. Lets let the teeth grow he says and then we’ll see.
Things don’t get better. Shes is not yet two and is referred to a dentist at the Children’s hospital. He examines her, she screams and screams. He says her upper jaw is much smaller on one slide and that her lower jaw is hyper mobile. He says it’s a terrible genetic disorder and that I should have consulted beforehand. How could I have left her like so for so long he asks. I try to explain but he doesn’t listen. He is furious. She is referred to facial surgery and genetics. I cry and meet with the pediatrician. I am worried sick. I don’t understand. He says it could be Ehlers-Danlos.
The leading geneticist calls it “crying baby face syndrome” or asymmetric crying face syndrome. Another seems to think she has hypermobility issues, the leader, without even touching her says it’s all good. They are muted – all four of them. She’s to be reassessed in a year but that never happens. She is forgotten.
At age three, she’s enrolled at the university daycare where I’m a student. She refuses to participate during gym class. They sit her in a corner and make her wait as a form of punishment. They call her brilliant but don’t understand why she refuses any form of exercise.
I pull her out of the amazingly organized and stimulating facility to put her in a family owned daycare. Again, she refuses to play at the park. Sits under a tree in the shade “all alone” and waits to go back to the house. The caregiver tells me something is wrong with my daughter. She says “she is not a normal child”. I am devastated. I have her evaluated and they tell me my daughter’s cognitive abilities are way up there – there is nothing to worry about they say.
Then the witch from the daycare pulls the last straw – she brags about how she forced my daughter to walk 500 meters although she was huffing and puffing. I know my daughter can’t walk like that – I don’t grasp that it’s unusual. It breaks my heart. I can still to this day see her in her red coat and red boots dragging her feet. That was the last of it. No more daycare and she attends class with me. University professors are amazed as she sits there listening and drawing, waiting for the three-hour class to be over. She is part of the adult world at four years of age.
By age five, a few months into kindergarten, she complains of not being able to carry her school bag. She cries in the morning. She is so so tired. An X-ray of her spine reveals a normal spine. The back pain is related to the ligaments says the radiologist. By November she has full blown pneumonia. She is so sick she misses two months of school.
She struggles until she is nine and then by age 10, she can no longer attend school. Still they don’t listen – they say she’s spoiled and oppositional. Her treating psychiatrist says she needs violence.
By 12, she is so exhausted she tries to take her life.
The following years are hell. We send her to foster care because I am responsible for her lack of school attendance. She is then hospitalized for five months in a day hospital for teen suffering from anxiety and at risk of suicide. We force her to walk for hours in the hot blazing sun. I call it abuse, they say it’s a mistake.
Then I gain courage and leave the province where she was born and so ill-treated – anything to save her.
By 17 she finally gets her diagnosis of a connective tissue disorder causing severe orthostatic intolerance with associated intracranial hypotension. Now she can barely walk ten meters on a good day. She needs a wheel chair, and a support handle in the bath tub. She needs me to help her bathe. She is hoping for her life back but her journey will take perseverance; the neurologist says it will take years of rehabilitation since she has been left as such for way too long.
If only they had listened to the very early signs. Just once.
To read about other journeys go to : http://dailypost.wordpress.com/2013/05/26/daily-prompt-journey/