Alyssa MacLeod: The Power of Perseverance

I met Alyssa MacLeod last May at the CP Canada Network meeting in Halifax, NS. At that time, Alyssa was Miss Nova Scotia Canada, and we were excited to meet with her and talk about her being our World CP Day Ambassador. Shortly after the conference, (like literally just a few days later), Alyssa was crowned Miss Canada International 2014!

Since then, Alyssa has been busy traveling the country, visiting towns and cities and promoting her personal platform, "The Power of Perseverance". Her year-long reign will take her to communities all across Canada, inspiring youth and people with disabilities.

 

About Alyssa:
 
I was born with a mild case of Cerebral Palsy (a term used to describe damage to the motor areas of the brain that can cause difficulties in gaining balance for walking and difficulties in education). As a result, I have had a number of surgeries at the Shriners Hospital for Children in Montreal, where I was a patient from the age of 2-21. In May 2013, I was named the Shriners Hospital for Children Atlantic Canada Ambassador. As Ambassador I have gained significant experience giving speeches and media interviews on my experience as a patient, surgeries I have had as well as the work SHC-Canada does.

My Parents and younger sister, (Cally) have been an incredible support throughout my life and medical obstacles, always encouraging me to not let my disability get in the way of being successful and becoming the best person I can be.

The obstacles I have had to overcome have taught me a lot about focus and determination. I am absolutely determined to become a doctor and join the incredible team at Shriner’s Hospital for Children-Canada.

I am excited to write that I was recently accepted into Medical School, the first step in realizing my dream.

ALYSSA’S  Personal Platform

The Power of Perseverance - Encouraging Children with Disabilities to Reach their Dreams.

I am honored to have been chosen as “Miss Canada International 2014”. As a young woman with a disability, I believe it is important for these young woman as well as the public to realize that people with disabilities have the same feelings and goals as everyone else. They should not be treated differently or feel ashamed of themselves. They have the same rights and should be given the same opportunities as others, regardless of the nature of their disability. They are an asset to the community and can contribute as much as anyone else. They should value and be proud of their uniqueness.

As “Miss Canada International”, it is my goal to bring awareness to this unique group of individuals and show that they can be very proud of who they are. As someone who has a disability and someone who has witnessed the way society reacts towards these individuals, I will strive to bring a better understanding to what having a disability means and close the gap society has created. Having a disability means you may need to find alternative ways of doing things, an activity may take you longer than others but that does not mean it is impossible.

As a former patient and Ambassador of Shriners Hospital for Children in Montreal, I have been faced with obstacles and surgeries. I have been told that I could not be successful in my endeavors. On numerous occasions people have told me that I could not do something. I took this as a challenge to prove that I can do whatever I set my mind to. I turned the “I can'ts into “I cans”.
There is Power in Perseverance. People with disabilities do not give up easily. They must work harder to prove they can accomplish something. It is my intent to show, to encourage and to be an example that people with disabilities can accomplish their goals and be successful in life.

Disabilities are very often looked at as a hindrance, but I am an example that if you accept your disability with a positive mindset, you can reach any goal you strive for. A disability is only a disability if you let it become one.

I am proud of our Country of Canada and to be an advocate for those with disabilities.

A disability doesn’t define you, you define a disability.

Alyssa MacLeod
Miss Canada International 2014
"Canada’s Inspirational Young Woman"

You can follow Alyssa's tour across the country on twitter @misscanadaintl
 https://twitter.com/MissCanadaIntl

and on Facebook : https://www.facebook.com/MissCanadaInternational

She has been to five different provinces in the past two months, and is heading for the United States next week.

Alyssa, you are an exceptional young lady, and an inspiration to all who meet you, myself included!

Tulip Tales: Landon

Every day that I post a new 'Tulip Tale' is an exciting day for me. I love being able to share these amazing stories of such beautiful and inspiring children. This really is my favourite part of my blog. Each child is unique and each story is powerful. They all touch my heart and make me think about life in different ways.

Today, I introduce you to Landon. His mother, Michelle shares his story.

*****

Landon was born on June 4, 2009 - a beautiful baby boy, of 8 pounds 14.5 ounces. He was a bruiser to say the least, and I instantly fell in love with him. Though I didn’t know it at the time, my precious little boy was going to teach me the true meaning of strength and love.

Landon was a perfectly healthy baby and reached all of his milestones on time. Looking back now, I can see that there was always some weakness in his legs, but I didn’t realize it at the time. I have an older son, Logan, and I just thought “all babies are different, I cannot compare him to his brother”.

When he was about two and a half years old, the girls at Landon's daycare noticed that his walking was a little different and they brought it to my attention. I made an appointment with a pediatrician at the Carbonear General Hospital, where we were told that Landon had low muscle tone. This was in March of 2012.

By late August of that year, when Landon was just three years old, I knew there was something more going on with him. We took Landon to our family doctor, who confirmed our suspicions. He referred him to a Pediatric Orthopedic Surgeon, who told us that there was nothing wrong from an orthopedic point of view.

Our next step was to see another pediatric specialist in October, 2012. This doctor told us he believed there was something neurological going on with Landon, and referred us to the rehabilitation team at the Janeway Children's Hospital in St. John's.

We first met with the Rehab team in January of 2013. Landon saw all the members of the team: a physiotherapist, an occupational therapist, a speech therapist, a nurse, social worker, and finally a neurologist. The neurologist thought that Landon had a form of Spastic Paraplegia, but testing would have to be done to confirm this. We then set up an appointment with genetics to hopefully get an answer to the cause of Landon’s difficulties. It would be over a year before we would get our official diagnosis.

In the time we were waiting, we visited the Janeway for regular physiotherapy, occupational therapy, and speech therapy appointments, and we would go through the Cerebral Palsy Clinic every six months. We tried to live life as normally as possible, but it was a very difficult time for our family. We knew something was happening to our child, but we didn't know what it was. Moreover, we could see that his walking was deteriorating, and not having any answers was extremely stressful. I spent a lot of time researching Spastic Paraplegia. The stress of waiting for answers was really taking a toll on myself and my family.

Then came the diagnosis. On April 25, 2014, our genetic results were in. I immediately had a gut feeling that something was terribly wrong. They asked us question after question. Questions about his vision. Questions about his swallowing. Was he slow? Did he show any signs of dystonia? It got so overwhelming that I finally just had to tell the geneticist to tell me what they found. I couldn’t take any more questions because she was scaring me and I knew something was wrong.

Landon was diagnosed with FAHN or Fatty Acid Hydroxylase-Associated Neurodegeneration. This disorder is a sub-classification within a family of rare genetic neurological disorders called NBIA, or Neurdegeneration with Brain Iron Accumulation.

Landon’s condition affects the central nervous system by degenerating the myelin (white matter) in the brain and spinal cord over time, causing electrical impulses in the body to slow, leading to decreased motor and brain function.

This disorder is extremely rare. There are less than 30 cases known worldwide, and Landon is the only confirmed case in Canada.

As the doctor was explaining all of this to me, I cried and cried. I was in total disbelief. The only way I can describe that moment in time is exactly like what you see in the movies: when you receive bad news and everything around you becomes a blur. I just stared at them blankly. I had to force myself to come back to reality over and over again to try to pay attention to what the doctor was saying.

My biggest fear had come true: my child was diagnosed with something horrible. A progressive neurological condition. A condition for which there is no cure and no known treatment.

The first couple of weeks after the diagnosis were very hard. We spent a lot of time in disbelief, shock, and despair. We prayed every night and every morning (and still do) for God not to take the light away from our child, but we have two children and had to get out of bed and keep going for both of them. In fact, the morning after the diagnosis, I got up and took the kids swimming. That was the moment I decided that no matter what, I had to keep pushing forward and make life as 'normal' as possible for my family. My husband, Lee and I were very determined and decided early on that we wanted to find others with FAHN and do everything we could to turn this horrible nightmare into something good and God willing, do something to help our little boy.

Since receiving the diagnosis, our family has seen its share of stress and there have been some very difficult moments, but we choose to focus our frustrations into something positive. We are trying to make a difference by fundraising. I get asked all the time “What is your goal?” My response is that I don’t have a monetary goal in mind; I just want to find a cure.

Our fundraising started with Landon’s medical expenses and will soon shift to funding research to find a cure. I have created a board of directors, consisting of friends, family and colleagues. We are working on starting a non-profit organization in Newfoundland and we have some very exciting things coming up in the near future.

We have connected with several other NBIA families. We support each other and that has been a Godsend.

At this time, Landon is experiencing great difficulty with his walking and can no longer walk unassisted. Landon also has speech issues, but speech therapy is helping. We have no way of knowing when or if his disorder will progress, or if new symptoms will arise. 

There are questions surrounding his life expectancy. One study from the University of Washington says the lifespan of someone with FAHN can be in their early 20s to 30s, but with limited cases to study and so little known about the disorder, we are really unsure. We take life one day at a time, and one obstacle at a time. We are proactive and hope to do whatever we can to further research. More importantly, we enjoy every moment together. Our hope is very much alive and we pray every day that a cure becomes available!

What I want people to know is that we are a normal family living with extra-ordinary circumstances. We camp, we fish, we ride bikes, we swim, we go to the movies, we have dinner together, etc. We have to constantly look for ways to accommodate Landon’s limited mobility, but there is not much that we don't do together as a family. Recently, we attended our first Easter Seals Family Camp for children with disabilities, and it was a wonderful experience!

 Follow Landon's Story on Facebook - https://www.facebook.com/Landon.FAHN

*****

Thank you, Michelle, for sharing Landon's story. I can only imagine how difficult it must be dealing with such a rare condition and not knowing what the future might hold for your family. I love that you are being proactive and enjoying life one day at a time. That is all any of us can do, really. I am so glad that you have been able to connect with other families, and I hope that you know you are not alone in this fight. Parents of children with special needs share many of the same challenges and worries. We need to support each other and make the most of life, despite the difficult circumstances.

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

Drop Zone

Last night, we attended a concert fundraiser for Easter Seals Drop Zone.

Drop Zone is an insanely exciting and terrifying event in which participants willingly rappel 150 feet down the side of Atlantic Place. Crazy.

Participants are required to raise $1000 in pledges while challenging their comfort zone, all for a great cause. All money raised supports Easter Seals' life-changing programs and services for children, youth and families living with disability in Newfoundland and Labrador.

Because I am a huge chicken and would never have the courage to do this myself, I am happy to support the cause by donating to those who are much braver than I.

Easter Seals volunteers and camp counselors, Erin and Travis organized a concert fundraiser with some amazing talent. Performers included Megan Glover, Abby Quigley, Chelsea Parsons, Naaman Barbour, Everglow, ESS, Justin Upshall, Travis Pickett and Séan McCann.

Megan Glover - 2014 Easter Seals Ambassador 

 Abby Quigley

 

 

 Séan McCann of Great Big Sea

Brennen, Andrew and I were very excited to meet Séan and to see him perform. As someone said last night, "He gets it". He knew why we were all there, and he wanted to be a part of it. He made a connection with our kids, and he involved them in his music. It was very moving, very emotional, and very much appreciated. Séan is actually doing the Drop Zone himself, and will be (as he says) "Falling off Atlantic Place" for a good cause. He is a brave soul, and should be commended for that! Thank you, Séan, for all of your support and involvement with Easter Seals. Thank you for helping to enrich the lives of our children. Thank you for getting it.

Watch this video of Séan and Carly singing the most beautiful version of 'You Are My Sunshine' that I've ever heard.

And here, Séan sings 'Imagine', with Josh rocking it out from the audience! Amazing!

"You may say I'm a dreamer, but I'm not the only one.
I hope someday you'll join us. And the world will live as one."

Check out Séan's new solo album here - http://www.seanmccannsings.com

 And donate to Easter Seals Drop Zone HERE.

Yippee!

You guys, I am so excited about this!

Yippee! Sheets are a new line of Canadian-made, stylish waterproof protection designed specifically for toilet training and bed-wetting.

Creator Nicole Maunder (sister of local film-maker Roger Maunder) is originally from St. John's, but now lives in Toronto with her two young boys. Nicole created her newly-launched line of sheet protectors after dealing with several "accidents" when toilet training her sons. Recalling how frustrating it was to wake up in the middle of the night and have to change all the bedding, she thought that there had to be a faster and easier way.

Cleaning up messes is an inevitable part of life as a parent, and may be even more-so for parents of children with special needs. Bed-wetting is a frustrating, yet extremely common problem for our little ones. For many, the issue continues into adulthood, making life very stressful for parents and caregivers.

I was excited to hear about this new line of Yippee! Sheets, and was anxious to try one on Brennen's bed. I love that unlike most sheet protectors on the market, the Yippee! Sheet is soft and cozy and goes on top of the bottom sheet, not under it, which means it is the only thing that needs to be washed!  If there is a leak or accident, simply pull it off the bed, throw it in the washer and reuse it over and over!

Another feature of the Yippee! Sheet is that it is silent! The bottom layer is waterproof, but not made of vinyl or PVC, which means that it doesn't make that noisy crinkling sound, making for a healthier, more restful sleep.

As parents of children with special needs would agree, our time is already stretched to the max, and every minute is valuable. Anything that can help decrease the amount of laundry and minimize our level of frustration is a win-win! In the short time that we've been using the Yippee! Sheets, it's been a huge time-saver and stress-reducer. I highly recommend them to anyone dealing with nighttime messes.

We have the green and white "Waterproof One-Size Bed Sheet Protector without Tuck-In Flaps". It's also available with tuck-in flaps, for people who move around a lot while sleeping. (It's hilarious how excited I am about this!!) These sheets are beautifully made with great attention to detail and a range of colours and patterns to choose from.

Check their website for the full line of waterproof products, including bed sheet protectors, and car seat, stroller and chair protectors, which would work great on wheelchairs as well!

Thanks, Nicole. You are one smart Mom!!

Check out this video to see how easy they are to use, and visit www.yippeesheets.com to view and purchase.

F-words!

Last week, I received a letter in my Inbox from McMaster University that read:

"Please find attached a letter inviting you to be part of a new 'F-words' in Childhood Disability Research Team (a collaborative team composed of researchers and families) at CanChild Centre for Childhood Disability Research."

The letter stated, "I found your website 'Tiptoeing Through' a few weeks ago when I was doing a basic Google search to see how "The F-words in Childhood Disability" are being used and shared. Since then I have been reading your stories and blogs and have been inspired by your writing. It is my pleasure  to write you today to invite you to be part of a new 'F-words' in Childhood Disability Research Team. We hope this is something that will interest you!"

Darn right this is something that interests me!

This research team includes Dr. Peter Rosenbaum, Dr. Jan Willem Gorter, Dr. Mary Law, and Andrea Cross, a PhD Student at McMaster.

I saw Dr. Rosenbaum present at the CP in Motion conference which took place in Halifax back in May. I was very impressed by his presentation on "The F-words in Childhood Disability", and I appreciated his perspective on the importance of a family-centered approach to child development.
I wrote about that here - http://www.throughthetulips.ca/2014/05/cp-in-motion.html

I am honoured and excited to accept the invitation and to join this integrated research team! 

Our goal is to address the knowledge needs of families with children with disabilities and to support the uptake of the 'F-words' concepts in children's health care.
 
Dr. Rosenbaum discusses the 'F-words' in Childhood Disability in this video, produced by CanChild.

A Mother Knows..

"A mother knows the words her child cannot say."

When your child is non-verbal, you have to be their voice. You have to be their protector and their biggest advocate. It is an enormous responsibility, but the challenges are far outweighed by the joy your child will bring into your lives.

Being Brennen's Mom has enriched my life in ways you cannot imagine. I have become an advocate, I have become a fighter, I have grown and changed and become something more.

Sometimes, those who can't physically speak are the ones who communicate the most important messages. Brennen knows how to hit me right in the heart. With Andrew's help, he gave me the most beautiful gift. This fine silver chain and pendant was custom made, hand-stamped letter by letter, and it speaks volumes without saying a word.

"A mother knows the words her child cannot say."

I wear it with pride, and as a simple reminder that "Not being able to speak is not the same as not having anything to say." - Rosemary Crossley 

The Little Illustrator

Jennifer Zetts is the artist behind The Little Illustrator.  I recently discovered her Etsy shop, and just melted with the sweetness of her original designs. Jennifer makes "cutesy quirky illustrations and cards" and she says, "I hope to put a smile on people's faces and bring a little happiness with each print that I do. I love life and take inspiration from everything in it." 

I had Jen do a custom illustration for Andrew and I (which I will post below), but there are so many in her collection that I just adore!

I am so happy to be able to feature Jen's work on my blog.  I initially intended for this to be a place to share some of my thoughts, feelings and things that inspire me, and I am absolutely inspired by this girl.  Not only is she a dedicated, hard-working mother of five, but she is also the mother of a very special little boy named Camden.  Jen writes about him here: 


"My most favorite print I have ever done is "You Are Our Perfect". It will always have a very special place in my heart. The print is inspired by my sweet Camden. Before I had Camden, I remember going to ultrasounds and my biggest concern was about whether the baby had ten fingers and toes. It was like if the baby had the correct fingers and toes that meant that the coast was clear. That everything was going to be ok. I know for a fact that I didn't once give a serious thought about genetic abnormalities, syndromes, feeding difficulties, hypotonia, etc. It's funny how mother's intuition works. Sometimes it's not until we look back that we as mothers realize how right we really were. How we weren't being crazy from lack of sleep or the emotions of the moment. That what we felt was more right than anyone could have ever imagined. When I held Camden in my arms for the very first time, the last thing I thought was how perfect he looked. I couldn't even physically see him because my eyes were so filled with tears. I knew something was wrong with Camden after holding him for all of 10 seconds. I just didn't know what. I remember unswaddling his arms and legs. Counting fingers and toes through blurry eyes, like that would somehow erase the sick feeling I felt and reassure me that everything was indeed alright. Doctors and nurses reassured me that "everything was perfect with my baby" and that "he couldn't be more perfect." Turns out, depending on your definition of perfect, Camden was born perfect. Camden was born with a chromosomal abnormality, a slew of other health issues, and was recently diagnosed with autism. He has had a rough road in his short life, but he is truly one of the most amazing people I know. Camden is exactly as he was meant to be. He truly is perfect, although I'm sure there are a dozen doctors that would be the first to say he is the furthest thing from. Who he is is who we fell in love with. His heart is amazing and I wouldn't wish for him to be any different than the little boy he is today. He is most definitely our perfect."

This is so beautiful, and so so true. Jen is an amazing Mom. She has a remarkable outlook on life, and possesses a wonderful talent.

Below is the piece she created for Andrew and I.

"How often do you find the right person?"