With January just coming to an end, my year has had the best start EVER!
Were or were do I begin....first with Juwann. Juwann has received all of his new toys and hopefully we can work out all the kinks before he heads into high school next year. The first to come in was his brand new power wheelchair with a mouth joy-stick controller. Juwann drove that thing like he has been driving for years! I was so proud of my lil man. His teachers even told us that the other boys in his class wanted a new power chair too.
The tough book came next. This is what is giving us all the kinks! We have had to send it back 3 times to get it fixed. Now with it working again and his laptop getting mounted onto his chair, Juwann is learning to switch from chair to laptop using his joy-stick on his chair. Maneuvering the joystick like a mouse is causing some issues with Juwann but is slowly getting the hang of it.
I remember when Juwann was just a few years old and getting a phamphlet from Grandview Children's Centre that helps all children with special needs. I will never forget this one story...it was about a little boy that just received a keyboard that allowed him to speak and one day he came home and was able to ask his mom about her day. Geesh even now I start to tear up thinking about that story and how that mom must have been in a whirlwind of emotions being able to have a conversation with her son after all these years. With Juwann getting this laptop and learning to use it as his voice is so exciting! And I truly can't wait to have conversations with my little comedian I know he is.
So, with all that going on with us right now...what more can someone ask for right!
Well...to top the month of January off, my boyfriend and I had a weekend in Niagara Falls planned for my birthday. It was indeed a birthday I will remember for the rest of my life. When we arrived in Niagara Friday (after driving 2 hours in a snow storm) we could barely wait to relax. With the only reservations left at our hotel restaurant when we got there, we only had 20 minutes to get dressed. We had a very nice romantic dinner then headed back to our room to have some drinks and get ready to watch some fireworks that the Falls have every Friday night at 9. Just getting comfy in my chair by the big window when my mom texted me..."what are you doing?", I replied with "just waiting for the fireworks to start" and thinking to myself, huh i hope everything is ok at home with Juwann. After the fireworks were over, my boyfriend leaned in and gave me a kiss and told me he loved me and wanted to spend the rest of his life with him. I automatically replied back with the same response but then noticed him swinging his one arm around holding a small box in his hand. He smiled and asked me to marry him.........I just started to cry. After about 10 minutes of getting myself together and saying yes finally after the tears subsided, I finally clued into why my mother was texting me. She had known all along and she and her best friend were sitting at my house waiting to call me.
So, needless to say I am a very lucky and blessed woman and this is the best year of my life so far!
Now to plan a wedding.......let the stress begin :)
Monday, 30 January 2012
Friday, 14 October 2011
Worry Wart
"Mommy my tummy hurts!"," MOMMY MY TUMMY HURTS!", "MOM WHY CAN'T YOU UNDERSTAND ME?! I'm trying to tell you something and your not understanding me! No, I do not want a drink and No my bum doesn't need to be changed! I'm trying to tell you that my tummy hurts!"
Do you ever think about what your son or daughter with no speech is thinking?? Well, I constantly do and it always makes me feel sad when I think that something might be seriously wrong with my son on the inside that I can't see and he has no way of telling me. Granted over the years Juwann has learnt how to tell me when he has a sore throat by opening his mouth really big, or if something hurts he makes a pout face and I have to guess where it is. But I always worry about what if something like his kidneys or chest is sore and I have no idea.
I couldn't imagine living inside your own head, which is something I think Juwann does 98% of the time. No one knows exactly how much intelligence is in his big brain for sure but hopefully in due time we will all hear Juwann's voice with his new laptop that has a communicative device that will be able to speak for him.
Then, and maybe only then will I stop worrying about what he is thinking about or if something is wrong. Because it kills me to think that when he is in bed at night and screaming it is just because he is a teenager and not because something hurts.
Do you ever think about what your son or daughter with no speech is thinking?? Well, I constantly do and it always makes me feel sad when I think that something might be seriously wrong with my son on the inside that I can't see and he has no way of telling me. Granted over the years Juwann has learnt how to tell me when he has a sore throat by opening his mouth really big, or if something hurts he makes a pout face and I have to guess where it is. But I always worry about what if something like his kidneys or chest is sore and I have no idea.
I couldn't imagine living inside your own head, which is something I think Juwann does 98% of the time. No one knows exactly how much intelligence is in his big brain for sure but hopefully in due time we will all hear Juwann's voice with his new laptop that has a communicative device that will be able to speak for him.
Then, and maybe only then will I stop worrying about what he is thinking about or if something is wrong. Because it kills me to think that when he is in bed at night and screaming it is just because he is a teenager and not because something hurts.
Monday, 11 July 2011
Accessible Books
Today I was reading one of my favorite blogs and I came across a complaint about accessible books being dull with simple drawings. I have to totally agree with this! I have not come across a book that was worthy of reading twice.
Its funny to be reading this blog now because me and my very close girlfriend who is a writer decided a few months ago to write a book that not only will educate people about some disabilities but to make it fun to read with very fun characters. With our schedules being a bit busy right now, we haven't been able to get together for a month or two BUT after reading my friends blog this morning makes me want to get at it again!!
Here is a questions for my readers:
What would you like to see in an accessible book for your kids? I know with my son, he loves bright colours....do you have any suggestions we could possibly use to make a book worthy of reading over and over??
Its funny to be reading this blog now because me and my very close girlfriend who is a writer decided a few months ago to write a book that not only will educate people about some disabilities but to make it fun to read with very fun characters. With our schedules being a bit busy right now, we haven't been able to get together for a month or two BUT after reading my friends blog this morning makes me want to get at it again!!
Here is a questions for my readers:
What would you like to see in an accessible book for your kids? I know with my son, he loves bright colours....do you have any suggestions we could possibly use to make a book worthy of reading over and over??
Wednesday, 29 June 2011
Serenity Now!!
A trying couple of months it has been! And it feels like with every step we take, we somehow make two backwards.
When Juwann is healthy, having a male teenager with special needs is typical of a teen without special needs....attitude and moodiness lol. But when he isn't healthy, then times are very stressful and nights are restless. For the last six weeks we have been trying to mend a fractured femur, while Juwann's botox is wearing off and now he has contracted Impetigo.
There is a saying that God gives special children to special people and I believe that to be true but does it ever test your strength and patience. I'm happy to have found the outlet this blog has given me, and maybe my readers that have similar stories can provide some input on how to remain sane in times like these??
Until then, I will take the lead of George Costanza's dad and shout Serenity Now!!!
When Juwann is healthy, having a male teenager with special needs is typical of a teen without special needs....attitude and moodiness lol. But when he isn't healthy, then times are very stressful and nights are restless. For the last six weeks we have been trying to mend a fractured femur, while Juwann's botox is wearing off and now he has contracted Impetigo.
There is a saying that God gives special children to special people and I believe that to be true but does it ever test your strength and patience. I'm happy to have found the outlet this blog has given me, and maybe my readers that have similar stories can provide some input on how to remain sane in times like these??
Until then, I will take the lead of George Costanza's dad and shout Serenity Now!!!
Thursday, 9 June 2011
A tribute.
Every morning when I get up I usually have the same routine. I go in and check on Juwann, give him a kiss and turn on his television. Followed by using the washroom and then off to make my tea. Then before I start to get Juwann ready for school, I'll sit on the couch and relax while I enjoy my tea.
Because Juwann is out of school at the moment because of his broken leg, I've had more time to reflect on my life. And this is what I keep reflecting on..
I am so grateful to have the greatest group of friends anyone could ask for. While I'm still reading The four walls of my freedom, Donna writes about how lonely she was during many years of Nickolas's youth and although I do share the same feeling often, I am thankful that it gets less often by the days/years...and I owe that to my wonderful friends and my very patient and very loving boyfriend.
The most important relationship I have in my life is my mother. Without her daily help my life would be extremely different. I would be unable to work, or have any kind of social life. She is and always has been my rock! She is not only Juwann's nanny but she is also his second parent! I am the mother I am because of her, and I only wish to continue following her footsteps.
So, this little blog this morning is a tribute to my mother and to all the important people in my life....Juwann and myself would like to thank you!
Because Juwann is out of school at the moment because of his broken leg, I've had more time to reflect on my life. And this is what I keep reflecting on..
I am so grateful to have the greatest group of friends anyone could ask for. While I'm still reading The four walls of my freedom, Donna writes about how lonely she was during many years of Nickolas's youth and although I do share the same feeling often, I am thankful that it gets less often by the days/years...and I owe that to my wonderful friends and my very patient and very loving boyfriend.
The most important relationship I have in my life is my mother. Without her daily help my life would be extremely different. I would be unable to work, or have any kind of social life. She is and always has been my rock! She is not only Juwann's nanny but she is also his second parent! I am the mother I am because of her, and I only wish to continue following her footsteps.
So, this little blog this morning is a tribute to my mother and to all the important people in my life....Juwann and myself would like to thank you!
Tuesday, 7 June 2011
Welcome to my Holland.
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around... and Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland. Emily Perl Kingsley - Writer for Sesame Street and mother of a son with Downs Syndrome.
Astounding how people can have different circumstances happen in their lives, yet feel the exact way about a situation.
Being a single mother of a child with Cerebral Palsy that has multiple needs forces me to realize that I DO live in Holland and therefore I won't have the same kind of future as my family and friends that are in Italy. While my peers worry about what college their children will go to and if their children will marry, I worry about who will look after Juwann when I'm gone? And while they worry about paying for their children buy their first car or help pay for their wedding, I worry about securing enough money in a savings account for my son to live off of when he gets older. And while they are worrying about what sports to put them in, I am just praying for my son to stay healthy and pain free as long as he can...
You know when you feel in your heart that something was just meant to happen... well I stumbled upon this book called The Four Walls of my Freedom by Donna Thomson and man did I ever have one of those moments! Not only did I get this wonderful quote from Emily Perl Kingsley above, but I'm learning to think differently about life in general. Donna is an extraordinary woman and author who has built a second career as a disability activist. And through her story, I feel like I am reading my own. Although reading this book has sent my emotions on a roller coaster ride, I cannot express how much I have learned from reading this book already and I'm only half way through it! She has not only opened my eyes to the possible future for my son but gives great resources that can aid me with this.
I may never know what Italy is like but I truly do love my Holland!
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around... and Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland. Emily Perl Kingsley - Writer for Sesame Street and mother of a son with Downs Syndrome.
Astounding how people can have different circumstances happen in their lives, yet feel the exact way about a situation.
Being a single mother of a child with Cerebral Palsy that has multiple needs forces me to realize that I DO live in Holland and therefore I won't have the same kind of future as my family and friends that are in Italy. While my peers worry about what college their children will go to and if their children will marry, I worry about who will look after Juwann when I'm gone? And while they worry about paying for their children buy their first car or help pay for their wedding, I worry about securing enough money in a savings account for my son to live off of when he gets older. And while they are worrying about what sports to put them in, I am just praying for my son to stay healthy and pain free as long as he can...
You know when you feel in your heart that something was just meant to happen... well I stumbled upon this book called The Four Walls of my Freedom by Donna Thomson and man did I ever have one of those moments! Not only did I get this wonderful quote from Emily Perl Kingsley above, but I'm learning to think differently about life in general. Donna is an extraordinary woman and author who has built a second career as a disability activist. And through her story, I feel like I am reading my own. Although reading this book has sent my emotions on a roller coaster ride, I cannot express how much I have learned from reading this book already and I'm only half way through it! She has not only opened my eyes to the possible future for my son but gives great resources that can aid me with this.
I may never know what Italy is like but I truly do love my Holland!
Thursday, 2 June 2011
Bear with me please..
This is my very first blog ever so please bear with me.
After visiting so many beautiful blogs over the last month or so, I was inspired to create my own! With so many options to blog about....I narrowed it down to two.
First would be my favorite thing in the whole world and that is my son but then I thought of my second love which is art (which is often inspired by my first love). You see, my son was the reason I decided to start my own mural business called Creative Smudges. His love and joy of watching his mom create a bedroom he loves to be in pushed me into making a career of it.
So, with that little bit being said for now, my blog will be dedicated to just plain old creativity and inspirations behind them.
What inspires you?
After visiting so many beautiful blogs over the last month or so, I was inspired to create my own! With so many options to blog about....I narrowed it down to two.
First would be my favorite thing in the whole world and that is my son but then I thought of my second love which is art (which is often inspired by my first love). You see, my son was the reason I decided to start my own mural business called Creative Smudges. His love and joy of watching his mom create a bedroom he loves to be in pushed me into making a career of it.
So, with that little bit being said for now, my blog will be dedicated to just plain old creativity and inspirations behind them.
What inspires you?
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