Friday, September 30, 2011

The Gift of Giving

In a hospital bed I wrestled with the belief that this was the last day of my life. I was 33 years old and a single mom to two children ages 14 and 10 years. I was paralyzed on my left side and recovering from a brain surgery that removed a portion of a tumor that had invaded my brain.

A shroud of uncertainty provided a stark contrast on which little miracles played out daily. Family and friends did a great job of making my children feel secure. Meals arrived at my parents’ house to nourish weary bodies. Each day was a gift. Each face that appeared with gifts of love and concern was treasured. Cards, prayers and love flooded my room, overwhelming and humbling me.

In the meantime, my physical status continued to deteriorate. Answers were out numbered by questions. I was unable to wash my hair or have a shower for the first weeks. All I wanted was a clean mouth but the hospital didn’t offer mouth wash or toothpaste. With my energy in short supply I was grateful for family and friends who celebrated small moments and hard won achievements with me.

My aunt thought long and hard about how she could help. She decided to give the kids money to buy something special just for them. I was relieved that people were keeping my kids in their thoughts so I could focus on my recovery.

The days in hospital were long and exhausting. One day I returned to my room from a therapy session and found a little box on my bedside table. It was made up in Christmas colours and adorned the Salvation Army symbol. It contained shampoo, soap, and a toothbrush and toothpaste. I was so moved by the gesture that unknowing people offered me during this difficult time. When my family came to visit that evening I told them of the kind gift I got from strangers.
Later that evening it was time for the kids to go and spend the money that was given to them. My daughter bought clothing and had a wonderful time with my fashion savvy aunt. They laughed and shared advice, both treasuring the time together. My son patiently waited for his turn to shop, thoughtfully considering how he would spend his money.

When his time came, he bought a pair of shoes from a discount store. Upon leaving the store the sound of a bell ringing caught his attention. He walked away from his aunt and sister and approached a Salvation Army bell ringer in the mall. My aunt and his sister were amazed as he deposited all the money he had left. He thanked the bell ringer and said here is some money so you can help other people like you helped my mom.

Thursday, September 29, 2011

New Directions- Young Carer's Cause

As my health began to stabilize I was living in a world essentially unchanged, but totally unfamiliar. The career that I dedicated a good portion of the previous ten years to established slipped from my fingers. I had finally established my reputation and role professionally only to hear from my doctor that I would never work again. Forms were submitted with terms like "this patient is permanently, completely disabled. She is unable now, or in the future to perform any task related to her former job, or any job." Insurance forms responded by declaring me a victim of a "dreaded disease" and approved my claim for permanent disability.

I was grieving this loss of my career as if a child had passed away. My sense of self, my financial security, my connection to the world socially and career persona were all, in an instant gone. Physically, I needed help with the most basic tasks even on a good day. Achievements were no longer measured in professional designations, with degrees or diploma's, or came in the form of monetary compensation. Getting from my bed to a sitting position, getting dressed, eating food, holding objects in my hand became the challenges that I faced each day.

The people who were closest to me were my caregivers, my cheerleaders, my counsel and my strength. We found ways to infuse humor into the days. As my body began to slowly regain function I experienced what I would describe as shock like sensations throughout  my body. My daughter went out to buy lightening bolt earrings. She helped me get dressed, ran small errands, paid some bills and withdrew money to buy things that she needed. The independence was both exhilarating and overwhelming. My son carried the groceries,unloaded the dishwasher and cut the grass even though his small frame could barely push the weight of the lawn mower.

As a family we celebrated the insurmountable individual challenges of daily living growing closer despite the immense challenges facing each of us. During this time we reached out to the local Multiple Sclerosis Society for support and information. The connections we made at the office met our practical needs and far more. I was provided with assistive devices like a bath chair, a walker, a wheelchair etc. My children benefited from Kidz Club a recreation program that provided information and support during this critical time.

Politically, steam was being built in a collaborative community effort to recognize the needs of children who where in families such as mine. They gave a voice to children living in homes that provide care to relatives who faced chronic illness or language barriers. The group, The Young Carer's Initiative was made of professionals working in organizations who saw that a family centered approach was needed to address the complex needs of the families they serve. Most organizations focused on the identified client- the person in need of direct service while there is little done to acknowledge or address the complex needs of others such as young people who take on tasks far beyond those that are prepared for developmentally.

The MS Society was a share holder in this initiative along with 16 other services such as the Alzheimer Society, Family and Children's Services, AIDS Niagara, brain injury services, children's mental health programs and others. They pooled their expertise and lobbied for funding to create a service with a family centered approach to provide supports to children who were caregivers. They were identified as "Young Carer's".

My daughter secured a summer position with the MS Society and began creating educational materials that could be accessed by staff, professionals, volunteers and the community about MS. At the age of 17 she was given a role that allowed her access to critical information about MS and the opportunity for leadership overseeing a children's summer program. I began attending committee meetings for the Young Carer's Initiative. At the table I was invited to provide the perspective of families. This provided me with an opportunity to use the skills I had worked so hard to develop in my career in Social Services. It occurred to me that neither my life or my career was ending as I had previously thought perhaps the momentum of my life's experiences had not been lost but in fact redirected.

“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”
Marilyn Monroe

Wednesday, September 28, 2011

Rising to Challenge

There are times in everyone's lives when a change happens that is so great that life is defined in terms of then and now. These events mark time in a different way and change our perspective. The birth of child, marriage, divorce, death. These things change the landscape of our lives. They always come with a wave of change and adjustment molding and shaping the people we become.

Tuesday November 21, 2006 was one such day in my life. It started out like the days before with me driving my kids to school and going into work but it didn't take long to know that something life changing was underway. On that day went home sick at the urging of my boss and never returned. The astounding thing for me was that although something wasn't right, it didn't seem horribly wrong either. I didn't feel sick, or different than normal I was "just" losing the ability to use my left hand and leg. That is how it happened. I truely didn't feel strikingly different even as I progressed towards paralysis all the way along the left side of my body.

The next day I was admitted to hospital and to make a long story short I was diagnosed with Multiple Sclerosis. In the days that followed I continued to lose abilities that were innate. Within six days I was not able to sit, feed myself, dress myself, or move independently. My diagnosis was not clear and I was worried that my life at age 33 was nearing its conclusion. Visits from friends and family were celebrated like never before and my close family became my caregivers.

I knew that this monumental shift had a profound impact on those who love me. My mother and father stepped in to care for my kids who were in grades 9 and 6. The kids wanted so desperately to have any bit of normalcy restored. My mother took over most of daily care needs, maintaining my home, laundry, cooking, personal care etc. My kids, father and countless others stepped in to help as well. This was a time that called for everyone to give more then they had to give.

People stepped forward to help in ways I couldn't even have imagined possible. A Great-Aunt undertook a fundraising campaign generating funds to help offset expenses that were quickly piling up. My co workers did the same. People that I didn't even know banded together to ensure my kids had a Christmas like years previous. A local high school drew up designs, bought materials and installed a wheelchair ramp on my home so that I could return home for the holidays. A local team of high school aged boys brought gifts, food and money that came from their own contributions. So many people offered me such kindness I worried that I would be unable to remember them all to thank them due to my ever increasing symptoms of crushing fatigue, cognitive problems, and immobility.

I am forever indebted to the countless people who stepped forward with gifts of all kinds. Their kindness and selflessness were like a welcome blanket amid a terrible storm. In all this, of paramount concern to me were my children. The shake up in their lives caused in this stroke of time would forever mark their lives. I worked with Occupational Therapists in the hospital who coached me to ask my kids to take on responsibilities that they had never before had to do at a time when their entire worlds were upside down. Ensuring they had supports was foremost in my mind, but that did not change the fact that as life went on the things that needed to be done would have to be shared amongst them.

Our family could not even comprehend the kindness and generosity of people, many of whom were complete strangers who came forward restoring our hope, and allowing us to move forward. These acts of kindness, each and everyone was a reminder that each day is a gift and together we can rise to meet any challenge before us.

Life of a parent

I will never cease to be amazed by how my son's brain works.

His mind is this intricate little web of complex thoughts so rarely shared that he is easily and so often underestimated. Since he was young he didn't take any risk that wasn't carefully evaluated, thought through and planned. No step would be taken until he had assessed and measured the task to ensure absolute success. I can think of examples of his complex inner workings that date back to infancy.

Tonight, we were on our way home from a mom and son night out. We went to see Moneyball, a movie that I'd heard him casually refer to wanting to see. He has played baseball for the past several years and I assumed his interest in the movie originated with his own experiences on the baseball diamond.

The movie was thought provoking and it was a nice evening out for us both. As we drove home he said I thought it was going to be good. It was based on a true story you know. I didn't know that. He proceeded to tell me that the story was written by Micheal Lewis and that he had taken note of the story when it was released in print a few years ago.

He said remember when we went to Chapters and I asked you to buy me the book Liars Poker? This was a book I had looked at at the time and thought was well beyond his years (he was about 13 at the time). He explained that he really wanted the book Moneyball at the time but at $24 he thought I would say no, this book was being sold for less money so he was willing to settle for reading another work by the acclaimed writer.

He went on to talk about the personality assessment profiles that he is taking in his careers class and what they are teaching him about his strengths and weaknesses. The tests and measures indicate that he his an independent thinker with strong intrapersonal skills. He is introverted, thoughtful and likes to work on his own. Sharing his thoughts and feelings come only after great deliberation. He is very humble and reserved and the depth of his thoughtfulness is often cloaked in subtlety.

He explained that the results of the True Colours test indicated that he was an equal mix of green and gold. Green is an expression of the logic - the system of existence and the abundance of this color in nature. Greens are concerned with the world's challenges, such as preserving the wisdom of mother earth for the future. Psychological research has shown the color Green to have a calming effect and many Greens demonstrate a composed demeanor using mind over emotion to orchestrate and solve the mysteries of life. Where as Gold is described as by the test as being associated with a person who has reverence for traditions, dates and customs. Gold is a color with numerous metaphors associated with it. Think of the common phrase, “Good as Gold”. It represents value, stability and strength. The expression “Solid Gold work ethic” conjures up an image of someone who is very responsible... on time, organized, fulfills their obligations with stellar dependability, efficiency and thoroughness. The classic expression “sets the Gold standard” is also a suitable fit.

These characteristics so perfectly sum up his psyche. Another example of my tendency to accept on face value his underrepresented thoughtfulness comes immediately to mind. A few years ago he asked for a bird feeder. He had taken an interest in birds and was studying encyclopedias and any other resources (as he has so many other times in life) to learn as much as he could about the various species.

For Christmas I made sure that he had a nice bird feeder and seed under the tree. I thought he would be excited when he opened the gift. Instead he said that the reason he had been asking for one was that the activity of the birds in and out of the tree would dissuade the bee's from building nests in the tree. The previous year we had a bee's nest that made it hard for him to cut the grass under the tree.

Such wisdom for such a young man. I am so regularly humbled by his patience with me as I slowly uncover how complex and thoughtful he is. I am reminded of how much we stand to gain by listening more and asking the right questions.
“There is no greater agony than bearing an untold story inside you.” Maya Angelou