Suspecting CP

Finally, after my first month of life in the hospital, my family was able to take me home. Life took on a new turn; now my parents had to take care of three little girls.  Moreover, I did not sleep for long periods of time so there were many long nights for my mom.  My dad worked shift work but my grandmother was there for the first six weeks to help.  Mom was so happy to have her assistance.  My wonderful mom made the decision to stay home with us and was alone after my grandmother left.  I am very lucky to be loved and to have my family's support; they are always there for me and I cannot even start to imagine life without them.  

My parents first started to suspect some sort of muscular problem at five months when I wasn't keeping up with my twin.  I could not hold my head up and couldn't make any attempt to roll or turn over.  The health nurses put my parents in touch with an infant therapy group.  My mother would take us girls and my sisters would play with the other children while I worked individually with a therapist. The therapist would give my parents exercises to follow up with at home.

At seven months, my parents took me back to Edmonton for a follow-up and that's when the doctors said I had CP.  They told my parents to take me home and do the best they could, and that is just what my parents did.  They wanted me to be able to function well and so they made me work my little buns off.  My dad spent countless hours teaching me to roll over and my grandpa built a corner chair so I could sit up and learn to put food in my mouth.

My mom and dad spoke with their doctor and explained that they wanted a second opinion, so he made an appointment at the Alberta Children's Hospital in Calgary.  I spent my first birthday at Calgary's Neo Natal Clinic going though two days of testing.  The results confirmed the previous diagnosis: It was ataxic cerebral palsy.

With on-going therapy, I could improve my physical ability.  Grande Prairie wasn't able to offer the support and resources that we would need but my parents found them in Calgary.  They decided to move to Airdrie, a fifteen minute drive from Calgary.  Back then, Airdrie was a small town to raise a family.  Both my parents are from small towns and they must have felt most comfortable raising their children as they had been raised. 

I liked growing up in Airdrie because it was a nice town but, I think, with my disability, growing up in a larger city would have been better for me because Airdrie was not very wheelchair accessible at the time and they didn’t have as many programs for people with disabilities.  My parents had to drive me into Calgary usually about two times a week for a few hours each visit.

From Birth

I was born July 7, 1981... I was called a preemie because I was so small that I could be held in the palm of a hand, except I could not be out of my incubator or away from the many tubes.  My parents already had one daughter who was two and a half years old, and now they had twins.  Although we had grown together for the first part of our lives and were separated by merely sixty seconds entering the world, I was about to experience a vast separation in time and space when the hospital staff whisked me away from my family and flew me to Edmonton where the hospital had a better facility to help me.

I was so small and fragile that my mother wasn't able to see me before I was relocated.  My parents weren't able to come with me; they had to stay home with my two sisters in Grande Prairie (a five and a half hour drive from Edmonton).  They wanted to visit but my dad was a police officer who worked night shifts and my mom had two little girls to look after.  They were far away but were sending me angels in their thoughts each day.  I know it must have been a big challenge for my parents to trust that I was going to be okay and leave my care in someone else's hands.  Instead, they sent a family friend to come and hold my small body for moments of comfort.  A friend forever, she is also my older sister's godmother.  She wrote me this letter that I hold dear.

 ~~~~

Dear Shawna,

This is what I remember of my first visit with you.

Your dad called me in Edmonton I was in at my parent's home in my third year of university in the Faculty of Education to become a teacher. It was very early in the morning, well before 5 a.m.

Your dad said that you and your twin were born!  He was thrilled and terrified because you were so very small.  The University Hospital would provide you with the safest and best medical care possible.

He asked me to go and see you because he and your Mom and of course, your sisters were so far away.  Naturally, I agreed without a second thought.  I was so honored to be asked to visit such a precious delivery to this world.

You were in the Neonatal Intensive Care Unit.  I was not one for hospitals because I truly dislike BLOOD, PAIN, and GORE (SLIME).  I went to the hospital because your parents were so very important to me.  They are my second family.

In the hospital, the Head Nurse refused to allow me to see you.  I was devastated and convinced that I wouldn't leave the Hospital without seeing you.

I put up a HUGE stink, and finally after your parents phoned and granted authorization I was allowed into the Unit.

I had to buzz into the Unit.  Next, I was expected to scrub raw my hands, put on gloves and a yellow robe over my clothes. I looked very trendy, as it was summer.  When I first saw you, I was speechless.  I was twenty and a half and you were the first baby I had ever seen in my life.  You had tubes for feeding and such precious hands.

The nurse told me to pick you up.  I almost fell over.  I was terrified of dropping you, squishing you, hurting you.

So, the first visit I just sang to you.  This is important because I NEVER, EVER sing in public.  “Is this friendship or what?”   I noticed your incubator crib did not have anything PINK.  What an emergency!  I left the hospital to search for something to leave in your incubator that would be special.  I discovered a soft pink blanket and brought it to you.

On my next visit, I held you while sitting in a rocking chair.  I sang again, and gave you a full report of your family in Grande Prairie.  You fell asleep.  It was a beautiful sight. Every night, your parents would phone for a report.  Every day between classes, I would march into the hospital to visit.

There were a few other infants in the Unit.  Often, I would see the Moms cry.  It made me very sad to see so many people trying so hard to do what ever they could to comfort these people.

On one visit, a dad asked me how my little girl was doing.  I just looked at him and said, "Actually, very well. I'm the Aunt and I'm the only one who is here to hold her.  Aren't I the lucky one?"

I felt very young to be there with you.  My time with you stood still.

While you were growing, I was allowed to feed you with a dropper into a tube, only a little at a time.  It took forever.  I wondered when you'd eat REAL food.  You fit in the palm of my hand.  How amazing!
When you were finally allowed to leave the hospital, I was happy to know that you would be in the surroundings of your loving family.  At the same time, I was sad because for just a few days of your life, I had you all to myself.

Thank you! Love always!

~~~~

What is CP?

For those who might not know very much about CP, or need a refresher, cerebral palsy is a group of disorders characterized by loss of movement or other nerve functions.  These disorders are caused by prenatal injuries to the brain.  The disorders can appear in infancy or early childhood and permanently affect body movement and muscle coordination.  However, these disorders are not progressive; they do not become worse over time.

'Cerebral' refers to the two halves of the brain.  The brain's outer layer (the cerebral cortex) has a motor area that directs muscle movement; 'palsy' refers to the loss or impairment of motor function.  The problem of muscle coordination is caused by abnormalities in the brain that disrupt its ability to control movement and posture.

There are two common causes of CP:

·      The cerebral motor cortex did not develop normally during prenatal growth.

·      The brain suffered an injury.  

A factor that contributes to these risks is being part of a multiple birth, like a twin or triplet.  It is harder for the mother's body to distribute nutrients equally to multiple infants so there can be deficiencies to one or more of the babies.  One example is the lack of oxygen in a baby's brain due to the stress of labour and delivery; there could be an interruption in breathing or poor oxygen supply.  A newborn's blood is equipped to compensate for a short-term lack of oxygen but sometimes it goes on too long.  Other sources of damage may be caused by severe low blood pressure in the mother, rupture of the uterus, placenta detachment, or problems with the umbilical cord.  In any case, the damage that results in CP is not repairable and the resulting disabilities are permanent. When people look at me, do they think that I'm not able to have a life for myself because I have a disability? Do they think that I don't understand how life works in the big world? That's why when I hear the word "no," it makes me feel like I have to show people that I am a normal person like anyone else. I want to show everyone that I am not sitting around, feeling sorry for myself. Sometimes I do wish that I didn't have CP, but I can't do anything about it. I hope this book will help people overcome the barrier and begin understanding people with disabilities.

When I was born, the doctors said I was too small and likely wouldn’t survive.  If I did survive, they said I would never learn much. I would always need specialized care and I would never be independent.  Walking was out of the question, and there was no guarantee I would survive long enough to try.  Of course, falling in love, working, playing, and making life long friends could only happen in my parents' imagination.  Dreams and goals were also out of the question; the doctors assured my family that my brain was too small and would never have the capacity for such abstract thought.  Even recognizing members of my family would be beyond my abilities.  At seven months old they said I had cerebral palsy (CP), damage to my brain, and quadriplegia affecting all four limbs. Some people use the word "gimped" to describe me; to them, it is synonymous with "stupid".  I hear a lot of harsh words: retard, handicapped, slow, useless, and every other name imaginable. As I grew, I learned that despite those labels, I was like anyone else who had a dream or a goal.

Having a disability does not define who I am in this world. Who I am is a determined woman, a family member, a graphic designer, and a writer. I have dreams and goals like anyone else. Yes, I've had to adapt to my circumstances but I can do the same things as many of you can, just in a different way.  My disability doesn’t hold me back from what I want out of life. So whenever I hear someone tell me, "You can't do that because of your disability," it motivates me to show everyone that I can.

I believe my life has little to do with having cerebral palsy.  On the other hand, it has everything to do with hope, strength of character, morality, and happiness.  I have accomplished many different physical things in my life that were not anticipated, such as moving from my knees to standing, completing the manoeuvre on the toilet, and driving a wheelchair.  The steps involved are similar to a child first learning to walk. For me, it was a natural progression.

People with CP exhibit a wide variety of symptoms, such as a lack of muscle coordination when performing movement, called ataxia; stiff or tight muscles; and exaggerated reflexes called spasticity.  The variations in muscle tone result in movements being either too stiff or too floppy.  My ataxia means that it takes a lot of effort and control to make my stiff muscles do what I want.  It's very easy for me to be tight, but exercise helps my muscles to move and stretch.  I can do most anything that you can do but it takes me more time and effort to coordinate precise motions like writing or buttoning a shirt. In addition, cerebral palsy can affect all four limbs, just one, or any other combination.

Unusual gaits are common, like walking with a dragging foot, walking on tiptoes, having a crouched appearance, or having a "scissor" gait.  There may be excessive drooling, difficulties swallowing or speaking, shaking (tremors), or random involuntary movements. These symptoms differ in type and severity from one person to the next, and may change in an individual over time.  Some people with CP may have other medical disorders such as mental retardation, seizures, impaired vision or hearing and abnormal physical sensations or perceptions.  It can affect a person’s life in different ways; one child with severe cerebral palsy might be unable to walk and need extensive lifelong care, whereas a child with mild CP may only be slightly awkward and require no special assistance.

Cerebral Palsy is not a disease.  It is not contagious and cannot be passed from one generation to the next.  There is no cure for Cerebral Palsy at this time but supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.  For more information, here are some websites that dispel myths about CP:

http://www.mychildwithoutlimits.org/understand/cerebral-palsy/cerebral-palsy-prognosis/10-myths-about-cerebral-palsy

http://www.healthxchange.com.sg/News/Pages/celebral-palsy-myths-facts.aspx

Although I've discussed the causes and symptoms of CP, I am more than my diagnosis and prefer to focus on other aspects of my life. 

When people look at me, what do they think?

When people look at me, do they think that I'm not able to have a life for myself because I have a disability? Do they think that I don't understand how life works in the big world? That's why when I hear the word "no," it makes me feel like I have to show people that I am a normal person like anyone else. I want to show everyone that I am not sitting around, feeling sorry for myself. Sometimes I do wish that I didn't have CP, but I can't do anything about it. I hope this book will help people overcome the barrier and begin understanding people with disabilities.

When I was born, the doctors said I was too small and likely wouldn’t survive.  If I did survive, they said I would never learn much. I would always need specialized care and I would never be independent.  Walking was out of the question, and there was no guarantee I would survive long enough to try.  Of course, falling in love, working, playing, and making life long friends could only happen in my parents' imagination.  Dreams and goals were also out of the question; the doctors assured my family that my brain was too small and would never have the capacity for such abstract thought.  Even recognizing members of my family would be beyond my abilities.  At seven months old they said I had cerebral palsy (CP), damage to my brain, and quadriplegia affecting all four limbs. Some people use the word "gimped" to describe me; to them, it is synonymous with "stupid".  I hear a lot of harsh words: retard, handicapped, slow, useless, and every other name imaginable. As I grew, I learned that despite those labels, I was like anyone else who had a dream or a goal.

Having a disability does not define who I am in this world. Who I am is a determined woman, a family member, a graphic designer, and a writer. I have dreams and goals like anyone else. Yes, I've had to adapt to my circumstances but I can do the same things as many of you can, just in a different way.  My disability doesn’t hold me back from what I want out of life. So whenever I hear someone tell me, "You can't do that because of your disability," it motivates me to show everyone that I can.

I believe my life has little to do with having cerebral palsy.  On the other hand, it has everything to do with hope, strength of character, morality, and happiness.  I have accomplished many different physical things in my life that were not anticipated, such as moving from my knees to standing, completing the manoeuvre on the toilet, and driving a wheelchair.  The steps involved are similar to a child first learning to walk. For me, it was a natural progression.

Foreword (by my mom)

When our twin daughters were born on July 7, 1981, we immediately knew one of our precious babies was in distress. As a mother of an already two and a half year old daughter, it was plain to see the tiny twin was nowhere near her sister's capabilities, but the day we found out why was a heart wrenching experience. The truth was finally confirmed, at seven months of age, the smallest of the twin girls, Shawna, was diagnosed with Cerebral Palsy; however the extent of the physical and/or mental disabilities were still unknown.

As the months went by, we became very involved in infant therapy and we believed that the sky was the limit.  Our primary goal was to help our daughter become an independent little gal.  I remember so clearly, how Shawna struggled with great perseverance until she finally learned to pick up a teething biscuit and get it to her mouth.  It soon became second nature to her.   With instructions from a physiotherapist, her Grandpa built her a corner chair, which allowed her to sit securely with a tray in front of her.

There often was a lapse of many months before she accomplished another great task but each was as special as the first. The day Shawna sat alone for the very first time at two years old; she brought another occasion for all of us to rejoice with tears of joy and celebration.

My days were often a blur with three small girls that needed attention but would have liked a bit more cuddle time.  There was little time for sitting and rocking; there were daily exercises to do along with a multitude of other household chores.  Shawna quickly learned that she had to keep up to the rest of the family and there was no special treatment, so to speak. We were going to make her function as normally as we could.

That was the plan.  At the age of two Shawna would take a forty-five minute handi-bus ride to preschool at the Alberta Children's Hospital, for five days a week. As she grew, there were many accomplishments that remain clear in our minds including standing alone and taking a step at age eight, reading a Sweet Valley High book at age ten, and telling her older sister what it was all about. These were the moments that confirmed to us that we were blessed with a child who was physically disabled but more than capable of comprehending all she heard and read.

Shawna played out on the street in her special walker along with her sisters and the neighbourhood kids, except she was clad with a helmet and wore braces on her legs. She went skating with the assistance of the same walker and then learned to swim with a neck ring and a life jacket.  Shawna attended Brownies and Girl Guides for several years and would tell everyone that she walked to school with the help of her electric wheel chair, which she had from the age of four.  Our daughter quickly learned all of the short cuts to take to and from school.

From a very young age, the word "no" was not in Shawna’s vocabulary and we wouldn't stop her from living the life she wanted. Believe me, there were times I had to turn my back and fight back the tears as I watched her determination to master and conquer a simple task that we take for granted every day.  Some of these tasks included making several attempts to get her hand to pick up her Barbie Doll, put it in the front of her tee shirt, and then hold the tee shirt with her teeth and crawl to play with her siblings. Going up and down stairs on her bum, backing up to a chair and then raising herself up to sit down on it.

She went from grade one to twelve in a modified program especially designed for her, and moved out at eighteen years old, even before her two siblings had thought about it. Attending various programs and conferences all over the city, relying on handi-bus services to drop her off and hopefully remember to pick her up again. Travelling to Mexico, with the assistance of a caregiver, was a highlight of her life, as well as being her sister's bridesmaid.

None of these accomplishments came without my tears which were quickly concealed so that Shawna would not see how it tore at my heart; however, I knew deep inside this would make her entirely determined, self-motivated, and the independent young lady we are so proud of today.

Shawna has taught us to be patient, to never give up, and that if you want to do something bad enough; there is a way to accomplish it. She has brought us so much joy with her great sense of humour and reminds us to keep things in perspective and be thankful for everything we have been blessed with. She has truly been an inspiration to her two sisters over the years.

Through all this, it did not come without a price for her twin sister, who carried guilt from a very young age. She also struggled to see her sister beyond the disability. The rest of us were fortunate enough to accept Shawna as a whole person and then see her limitations. We are grateful today that with counselling from a very special person and lots of reading, her twin now has a relationship with Shawna that strengthens day-by-day.