Taking Life by the Horns/ my Deepest Desire

I was out for coffee with my friend and she told me she wanted to get away ... but she's being a real chicken about it. She's told me a couple of places she wishes to go,  I just think "Oh my gosh, if I were you I'd be out of here in one hot minute". 

I wonder what I would do if I didn't have a disability... Would I grab life by the horns and never look back? I have family and friends here but I don't have "roots" as in no job, no man, no pet, no kids, I'm a pretty free bird. Sometimes I wish I could go to the airport and just pick a flight somewhere. Wherever I ended up, I would would email my parents to let them where I am... and so they know I'm still alive. haha. 

 Sometimes I want to go all over the world and advocate for individuals with disabilites and write about it on my blog for everyone else to see. I would want my blog to be accessible all around the world. That's my heart's desire. Ultimately, because of my own battles with disabilities I have a connection and understanding with other people with disabilities. I guess I can thank my Cerebral Palsy for my balsy advocate desires. 

The reality is that there are so many fears I have associated with taking a risk like that. For instance, what if I left and something tragic happened to my parents... or another family member. What could I do being so far away from them? Perhaps it's more advantageous to them if I'm gone because then no one has to be responsible for me and my well being... Well, that's not entirely true. Everything that I need help with over here I would still need help with anywhere else in the world. If it wasn't a friend or family member, it would have to be someone else assisting me where I am. Don't get me wrong, I love my family! They are the reason I'm here and I couldn't be who I am without them. But they also have their own lives and I understand that and I'm happy for them! 

This is what's in my heart and this is where I can be myself. If I can't be honest here I might as well stop trying... and stop writing.... On a happier note, I still live pretty grand adventure and I hope I can keep living my life out the way I want to. 

A Letter to My 80 Year Old Self

Dear 80-year-old Shawna Mattinson,

Hey you, it’s been awhile. You’ve made it this far. It looks like you’ve done a lot of stuff in your life that you may have thought wouldn’t happen decades ago. Looking back, I’m sure you would not change a thing because look at what you’ve achieved.

Right now, at 34 years of age, I am recovering from a stroke that has hindered my progress and dreams of walking on my own one day. It happened out of nowhere and, just like that, I had doctors telling me what I could and could not do. Lately I have felt like there have been constant roadblocks to my dreams and goals, a feeling that destroys me because of how independent and determined I am (which you know of course).  Will I walk again? Are the doctors wrong about my possibility of walking, as they have been in the past? Are you walking right now, and I just can’t see beyond this moment?

I hope that you are able to walk right now, although you are super old. Also, I hope that you’ve done all the things that I am hoping to accomplish right now (and many more things that I can’t predict, knowing you). I wonder if you’ve written other books beyond the two that I’ve written (and am writing) now, and if you will continue writing until you’ve passed. Also, have you continued your work on that project with that guy and become one of the main voices on his website for others with disabilities? Has your constant blogging and website work that you worked so hard on in your twenties and thirties opened more doors for you? I hope that it has, because right now it seems like I’ve started a million small projects and I hope they amount to the bigger picture one day (or I’ll throw my computer out my window!). What about the accessibility project? Did your videos of crashing into inaccessible buildings lead to people making changes with the city? What other projects have you come up with over the years, and did your focus change as you entered your fourties, fifties, sixties, seventies, and now (freaking eighties!?).

Oh yes, and what about your dream of travelling the world? At 34 years old, I have currently been around Canada (British Columbia, Nova Scotia, P.E.I., New Brunswick), Mexico, Hawaii, the Dominican Republic, Alaska. I went on a cruise from New Zealand (Where I jumped off the Sky Tower) all the way back to Vancouver. Some of the spots I stopped at on the way were Wellington, Sydney, Port Vila, and Pago Pago.  Knowing that you’re over forty years ahead of me, I know you’ve seen so much more and I can’t wait to experience all the places I did not know I would be. How was the cruise that you went on to the Caribbean when you were 35 years old? I can’t wait. Did you see all of Europe (especially Paris, Rome?). Did you say hi to your friend in Denmark like you wanted to?

How is your family? What are your nieces and nephews up to now? Have they grown into the people you imagined they’d be? How are your sisters? Are your sisters looking out for you now that your parents are gone? Is that what they wanted? Do you guys have fun being old together? Do you live together in a nursing home? At 80 you’re no longer required to follow societal rules and norms. I hope you take advantage of getting to say and do whatever the heck you want without consequence. Do you feel worn out? Have you fulfilled all the dreams you discovered along the way? I hope so. You and I both know that the end must be near now. I hope you’re almost falling apart from all the adventures you’ve had. It has been one heck of a ride, I know!

I know you have a lot of friends in your life, but I hope you have someone to share your hopes and dreams with too. In fact, I hope all your adventures have had your closest friends by your side.

Well 80 year old self, I guess I’m left with more questions for you than anything. I’m so curious about the life that lies before me. I hope you know that you are an inspiration to me. I may not meet you in this life but I am reaching for you, and I won’t give up. I hope that you are reaching for me too, maybe we will meet in the middle. Maybe you are already watching over me like my grandma. I will do my best with every bit of goodness I’ve been given to make a difference in this world. I will not leave here before I’ve made my mark and lived out my purpose. There is so much to do, don’t let me do it all on my own.

I love you,

Shawna Mattinson

Parenthood

I want to talk about parenthood. I was fortunate to have wonderful parents who looked past my disability and saw their daughter instead. Since birth, my parents believed in me when my doctors were quick to deny the possibility that I would have dreams, goals, and a life. To my family, I was a normal little girl who was going to attend school, participate in activities like swimming and Girl Guides, and play and fight with my siblings as any little girl would. Yes, there were learning curves that I had to face along the way, but my parents were always there to physically and emotionally support me.

But what about being a parent when you have a disability? I often find myself thinking about having a family and raising a child, an idea that a lot of people do not consider or find possible for people with disabilities. Although I fully support the idea that people with disabilities can raise children, I do not know if this is in the cards for me. I think that it is very important to be physically able to support your children, and I can not picture myself picking up my baby when nobody is around, feeding them with a bottle, changing a diaper, pushing them on a swing, or being able to help them in every way that a parent would. To me, parenting seems to be the one life choice that I feel my disability truly hinders me even when I take on other life events and activities without accepting defeat.

When I think about what kind of parent I would be if I did not have cerebral palsy, I see myself as a reflection of my parents. Whether or not my child had a disability, I would give my child opportunities to do what they love and motivate them to achieve their dreams. However, I would not give my children handouts of whatever they wanted! I am a firm believer of people earning what they are given, so my children would probably have to work as hard as I did to get what they wanted.  So, imaginary children, expect chores and responsibilities. My children wouldn’t be drowning in work, though; I would make sure that they grew up in a playful household (the sarcasm would not leave just because I was a parent!).

So if you are a parent or are thinking of having children one day, please do not take this life choice for granted because some of us would love the opportunity if they had the choice. Love your kids, don’t give up on their dreams and goals,  teach independence and respect, and hopefully they will grow up to raise their own children in the same way.

So I Just Had A Mini Stroke...

Hi Everybody,

Welcome to summer! It is a beautiful day here in Calgary, and I hope everybody is having a good start to their week. I am writing to you all to give you an update on what happened to me this past two weeks:

Two weeks ago, on a Saturday, I was getting ready to go out to a movie with my mom, sister, and my sister's kids. However, I didn't end up going because I started to feel really dizzy while waiting for my mom. It felt like the room was spinning around really fast and I felt nauseous. I moved to the floor to stabilize myself before I started to throw up, and thankfully my roommate was there. She asked me if I wanted her to call 911 and I did not want that. Stupid me! She decided to phone my mom instead and my mom insisted in calling 911. My mom entered the condo and said that she thought I was experiencing vertigo because she had had it before. The ambulance then arrived and asked about my symptoms before putting me on a gurney and taking me to the hospital.

Initially, I thought I was only going to be at the hospital for a couple of hours and that all would be okay. In reality, the hospital staff wanted to run some tests and I was booked for a CT scan to see what was really going on. Once the results were in, they told me that I had a mini stroke and that it may have been the result of numerous falls I had had over the years (in which I had hit my head). They told me that they needed to do more tests and keep an eye on me. Looks like I wasn't going home any time soon! I told my mom that if something bad happened while I was there, that I wanted her and my dad to let me go because living a life in a bed is not the life I want to live. At two in the morning, I finally got to sleep before the doctors woke me up to tell me I was being admitted and that I had to move to the tenth floor (so much for sleeping). Once I was up there they had to do another test and I was given a room with multiple patients already in it.

In the morning, I wanted to go to the bathroom but I had no energy to get myself up. The nurses asked me if I could go in a bedpan and I refused, so they went away and came back and they said they'd put me on a catheter. I was so tired and couldn't sleep, couldn't eat, and was scared that if I ate I would throw it up. I had a lot of visitors though, my parents, my sister, my roommate, some support staff, my best friend. There were many tears.

The next day, I had to do another CT scan for my head and the doctor said you have two options: Your brain could heal on its own and you would have to take a baby aspirin - or it will not heal and they would have to perform an operation. I was put on the eleventh floor to be watched, which was bigger and nicer because I had my own room with a privacy curtain that I shared with one other person (not multiple). The doctor came in on Wednesday and let me know I was doing fine and he was moving me back downstairs. They eventually wanted me to stay for one more day because they wanted me to get up on my own in my chair, but we didn't have a place for my wheelchair because I was back in the room with four other people. So on Friday morning, I went to see the physiotherapist and they said “If you can get up and out of your chair, you can go home.” I was scared because I had no idea if I could do anything since I had been in bed all week. Thankfully, I did it and I finally got home! Being in the hospital really took a toll on me so all I was able to do was lay on the couch and go to the bathroom.

 Now, I am doing fine, but I have constant headaches and still feel a little dizzy from time to time. My dream of walking right now is halted, as I was told that it's too dangerous right now. I don't know if it will be like this forever, but right now I'm sad to say that I have to focus on other goals. I also have lost a bit of independence right now, which all of you know is driving me crazy, but I have to do what I have to do until I get better. Thank you everyone for all your support and well wishes! 

Kids Who are Affected by Someone Who Has a Disability

Let me paint a picture for you. You're out with your child and they see someone in a wheelchair and ask "Mommy, what happened to them?". What would you say in response? Would you explain what you think may have happened to them, or say "Don't stare" and scold their curiosity?  Is there a proper way to react to your child's response, and if so, what is it? I bring this up because I believe that as parents and adults in society, we highly influence the little ones in our lives. Religious and political beliefs are often passed down generations, and beliefs about people with disabilities are no exception. 
Will you child grow up to believe that people with disabilities are human beings like everyone else?

I bring this to the forefront because our parenting styles will impact important areas of children's lives beyond the home. An example is when our children become old enough to go to school. All children want to play and be accepted by their peers, whether it is on the playground, in the classroom, or after school. Now imagine the child who is in a wheelchair on the sidelines. Although we may want to believe that they will be included in regular play, in reality, this is far from the truth. If children are not informed by their parents about people with disabilities and how they want the same things that any child wants, children are more likely to ignore, shy away from, or reject the child and not befriend them. In my own experience, I also found it hard to access the playground like other kids. If parents make more effort to inform their children about these issues, they are also more likely to speak with and influence teachers and the school board, who have the ability to make schools more accessible (e.g. by building accessible playgrounds or incorporating games that people with disabilities can play, such as throwing a ball). Also, children who grow up as disability advocates will advocate for people in schools, and possibly advocate for equal treatment for everyone (even beyond disability issues). All in all, the more that people talk about these issues, the faster we will see changes and start building successful futures for people with disabilities.

You may be thinking, "Well where to I begin with raising my children to be advocates for people with disabilities?". Good news: I can help (and I'm sure other people with disabilities have great advice too, so don't be afraid to politely ask). My first piece of advice is to teach your children that other children and people with disabilities are human beings too; they think, feel, love things, hate things, have dreams and goals, and have the human need to be loved and accepted. When we talk about the disability itself, we could invite our children to come up with ideas on how they can be more inclusive with other children with disabilities. How can they involve a child in play beyond playing on the playground, for example? Your child is going to have lots of questions, and please allow them! Questions are a great way for natural learning to take place - and your child should know that it is okay for them to ask children with disabilities questions too (while being respectful, of course). If a child does not feel like it is safe or right to ask questions, they will be too scared to approach or make a change in another child's life. 

Although not everyone will agree with me, I think we need to teach kids that it's okay to be friends with someone who is different from them in any way, shape, or form. This includes people with disabilities. For some reason, we seem to have come a long way with dealing with issues such as racism and sexism, but people with disabilities are still often seen as less-than human. We are people like anyone else with hopes and dreams, and we would love to get to know you too!

Overcoming

            
           I am a young 34 year old woman who has Cerebral Palsy. This is my story to tell. For a long time I wondered why I was born with a disability and my twin sister was normal. But a couple of years ago, I understood why I was born with CP.  Here are my thoughts and feelings about this topic. Handicapped is just a word to me. Yeah, I need some help with eating, brushing my teeth, combing my hair, tying up my shoelaces, doing up my zipper…. On the other hand, I can do a lot on my own… Like getting dressed, going to the washroom, Getting out of my chair, I can work out. I use a wheelchair to get around, but since I was a little girl I had a dream to walk on my own. Being honest I know that I won’t be able to walk like a normal person who can get up and walk somewhere. I know in my heart I will walk, but with some assistance of course, and I’m okay with that. My disability does not define me and what I want out of life.

I want to walk on my own and I want to be an advocate for people who have a disability. I go to the gym 3x a week, I walk around the track holding on to a railing, I balance on a wobble board, I stand, I used to walk on the treadmill, and sometimes I go swimming. Next winter, I want to try out skiing!! I found a quote on facebook and I feel that it spoke to me. It says “I still have a long way to go, but I’m already so far from where I used to be and I’m proud of that”.

The truth is, I still have a long way to go. It will take time, perseverance and determination to achieve this goal of walking on my own. But I can celebrate 34 years of overcoming obstacles in my life already! After all, life isn’t a race to the finish, it’s all about progress. My family is a big part of mine because they don’t see me like I have a disability. They see me like a girl, a daughter and a sister and I wish everybody was like that. I guess the only message I hope to leave the world by the way I live my life is this..

I am not handicapped.

I am not disabled.

My name is Shawna Mattinson.

                                                               

This Is My Voice About Being Handicapped

I wrote an article about my thoughts and feelings on having cerebral palsy back in August 2011. It was about what life might be like if I did not have cerebral palsy, and if I would want that life. Being honest with myself, I always think about what if my parents had three normal daughters. Would I be the same person I am today? Probably not. I don't know what my life would be like and I don't want to think that way. I have a good life and I'm so grateful for my family and friends. On the other hand when I see someone in a wheelchair who has no idea what is going on, I don't want that for me. I hope my family would make the right choice for them and my sisters to let me go because I would have no quality of life.

But right now in my life I feel like my disability is helping me to accomplish what I want. I know it might sound crazy that I feel like my disability is an asset to me. But it's true, it's part of my identity. With this condition I live a more powerful story that I can share with others. I hope my story can help others to overcome obstacles in their own life. My own struggle has made me a more compassionate person. But don't pity me! I have done a lot, I'm an accomplished person in my life. I wrote a book about living with cerebral palsy, I went on a 36 day cruise with my best friend, I jumped off the Sky Tower in Auckland NZ.

But it's not all rainbows and daisies, there are definitely some drawbacks to being disabled... When I go out with family or friends, people treat me like a baby. I don't like that because I am a grown woman. They only see my physical disability and they think that I have no idea what's going on. Often times people won't ask me what I want, they ask whoever is with me instead. It kind of sucks having a disability. Some things are hard for me, and it takes me a little bit longer to get stuff done. When someone tells me NO, I don't even understand the word. When something comes my way, I always push through. Or when I talk to people I have to say it over and over because I'm difficult to understand. Relationships have always been difficult for me, even within my own family. I feel like my nieces and nephew don't really want someone like me for an Aunty. It's not their fault and I know they love me for me and I love them too, but it's definitely a different dynamic.

This is who I am, I am on a path on my own. I want to help people understand who I am and what I want out of life. This is also greater than me, the little girl inside of me is finally taking her footsteps to walking. I am not alone, I have tribe of people behind me.

CTV News W5 Story:

There was a show on W5 a couple of weeks ago, it was on a family who has kids, triplets in fact and they all have cerebral palsy. The three kids have been through a lot. Brody is the most severely affected, he can't speak and has had multiple surgeries, including heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. Their brother Cole was born deaf however, since receiving a cochlear implant he is slowly starting to talk. Their parents have a hard time with everything in fact, the stress of this situation has caused them to divorce. They have had to make countless difficult decisions of what is best for the family. Often times the surgeries the kids go through are potentially fatal. They have to live life day by day and sometimes hour by hour.

My thoughts about this... I am thinking about the family because it's hard to have 3 little kids who all have cerebral palsy. When I think of my family, they have it so good because they only have one child with cerebral palsy. My heart goes out to the parents because they have kids who will never grow up and get a car, or go to college, or have kids of their own. If I was one of those kids, I would want my family to do the right thing for me and for them. I take my hat off to the parents of these triplets. They have sacrificed their own lives to care for their children. If I were in their shoes, I'd want to do the same. 

The important thing to realize is that cerebral palsy is a very individual condition, no two people are the same. No two families are the same either. What is right for one situation is not necessarily right for another. I think that in this family's situation it was in the parents best interest, despite all the sacrifices they made to do their best to raise those children. However, in the case of the family in the Dr. Phil story below, I believe it would be the best choice for those children with disabilities to have a doctor assisted suicide. They have no quality of life and no awareness where they are or who else is there. If I was in their shoes I would want my parents to let me go, and get on with their lives. I know they love me but if I was a vegetable then I would want them to let me go. 

Twenty Years of Giving Thanks!

Speaking about what I am grateful for in my life comes up every year at Thanksgiving.  I can't just quickly say thanks for the past twenty years because it is not merely about the past twenty years, I am thankful for my whole life, especially for my family.  They are a big part of my life and I don't know what I would do without them.

Recently we celebrated Thanksgiving.  It was a great time.  I went to Lacombe on Saturday with my mom, my sister and my nephew and one of my nieces. We visited my godparents and their families.  My dad was working but I wished that he could be there.  I am thankful for our godparents because they are no different than blood relatives.  My family has limited relatives that live close by. So when I visit my godparents I am so thankful to spend time with them. 

Now that my sisters are married they have their own family and this means I am an aunt to four little ones.  I have three wonderful nieces and an amazing little nephew.   I am so honored to have them in my life. 

Sometimes when I see people who have challenges in life or who are physically impaired in some way, I wonder if they are fortunate like me.  It makes me consider if they have a wonderful family who is always there and loves them for who they are, like my family; or has a family decided to give up their child. Maybe someone thought they couldn’t handle being parents to someone who has a disability.  Perhaps the parents decided it was best to put the person in a home and neither one sees the other again.  This is a sad and tragic situation and I am grateful every day that I am with my parents and my siblings. 

When I turned eighteen, I decide to move into a group home.  At the time this location was a good transition to living an independent life.  I wanted to move out and it was an adventure.  I am so happy I can do anything that I want and I know it.  What I did with my life like going back to school and getting a diploma in Web Graphic Design is amazing to me.  This has opened many doors and has validated my beliefs about the opportunities that I can create in my life.  I am grateful to have taken the risk. 

Some people don’t have the support and the opportunity to make their own choices.  I believe that everyone has the right to choose in life.   I also believe that the best choices we make are greatly influenced by the support in our family and in our society.  The support I have had in the past twenty years of my life I am thankful for.