Friday, April 29, 2016

Life with Sarah

No one ever wants to find out that something is "wrong" with their child. For parents, receiving such a diagnosis signals the end of the world, and the beginning of a new one. It is something that you are never fully prepared for, and you feel so many mixed emotions. You feel sad, angry, scared, and alone. You feel like there's no way in hell you can do this, but there's no going back. Life keeps going, and you must soldier on.

Steve Mercer is a proud father, bursting with nothing but love for his two daughters. This is what he wrote about life with his daughter, Sarah:


Let me start by saying I know every household has their issues. I know that families deal/struggle with their own challenges everyday. Some more, some less. This is (part of) our story.

You make the decision to have children, they are the Undiscovered Country (our future). You have hopes and dreams, you have intentions and ideas. But you often say ‘As long as they have 10 fingers, 10 toes and are healthy – that’s all that matters’. Then you discover that there is a lot of truth in that saying, a lot of truth; and that a lot of the hopes and dreams, intentions and ideas will have to be readjusted or re-imagined. Words like Global Developmental Delay, Autism and Special Needs are now introduced to your life. You don’t really know what you are in for, you have no navigation tools to help you. And then, somewhere in the back of your mind you can hear Denis Leary saying “Life sucks, get a helmet”. Bollocks. Bollocks to that.

I would gladly take on her illness for her to have a less complicated, more fulfilling life. Without question. But I can’t.

So you start trying to ‘fix’ her illness. You want to help her in any way that you can. Until one day you realize, you can’t. There is no fixing. There is no taking away. There is no going back.

You learn to support and guide. You do all that you can, you learn all that you can, you fight – and I do mean fight – all that you can so that your child has a chance to learn, develop and grow to their potential.

You redefine and accept your new normal. You lose friends, you make new ones. You adjust your idea of a family holiday, a lay low weekend, and a good nights sleep. You search out ways to bring your stress levels down. And you become hardened by living in a state of chaos.

And just when you think that you are at the end of your rope – she looks at you and says “ice cream” … and it is a wonder. She is in there … she is trying. You just have to change the way you listen, change your expectations. Forget what you know and see her for what she is. A beautiful, wonderful, intelligent, caring, curious, essential part of your life.

*****

Sarah's sister, Grace also wrote about having a little sister with Autism:

  
So, because today is World Autism Awareness Day, I thought I would show you all my wonderful little sister, Sarah. She is the best sister I could have asked for, she is such a unique person. Sarah can go from being serious to laughing until she's weak. She has taught me so much about people and kindness in such a little amount of time. Sarah doesn't have many words and you can't have an actual conversation with her, but she knows how to communicate without them and damn that girl gets what she wants. But, because she's the age kids are typically able to talk, when people see her and try to talk to her and she doesn't respond they call her grumpy or cranky but she's not. She's a happy kid but she just can't really respond to you (this happens a fair amount). So, I don't really know why exactly I'm posting this except to show you that just because you can't see that she isn't the typical 6 year old, she still has struggles and that just because you can't see autism doesn't mean it's not there. So, just don't judge and always celebrate the little things. That's what we do (getting hugs from Sarah is a big accomplishment so if she hugs you, don't take it for granted).

*****

We all deserve to be loved exactly as we are. We all deserve to live without judgement, and to be understood. We deserve to have our story heard and listened to and appreciated, because we are not alone, and when people understand our story, they are often more accepting of their own.

Autism awareness simply means learning to love and accept what is different. What makes Sarah different may not be the same as what makes my son different, or your child different, or even you or I different, but that's just it - it's different. We all are, and that's ok. The more people know, the better life will be for individuals like Sarah and for everyone who is different and struggles to be accepted.


World Autism Awareness Day was Saturday, April 2nd. Parks Canada showed their support for greater autism awareness by lighting Cabot Tower in St. John's blue! Many friends and supporters of the Autism Society of Newfoundland and Labrador joined at Signal Hill for a group photo!

If you love someone with autism, hang in there. It is going to be ok. Every child is different and every family experience is different, but there are so many people who know what you are going through, and understanding is one of the greatest gifts we can share with someone else. So, don't be afraid to reach out, to ask questions, and to share your story.

So much love (and understanding),

-Julie

Sunday, April 24, 2016

L'Arche - A Community Caring for Each Other

I have recently been attending meetings with Cornerstone Housing Society - an organization that was established here in St. John's in 2012, and is dedicated to the creation of homes for adults with intellectual disabilities in Newfoundland and Labrador.

"It is our goal and intent to become a L’Arche community where adults with intellectual disabilities and their assistants live together, where mutual dependence is fostered, where spiritual and social well-being is promoted and supported. Our focus as Cornerstone Housing Society is to acquire property and build a house that will become a home for the adults with intellectual disabilities who choose to live there."

As a parent of a child with a disability, it can be frightening to think about the future, and what might happen when I'm gone. Who will care for my son when I am not able to? It is perhaps one of the hardest and scariest things to think about. I remember being at an event where Randy Lewis spoke, and one thing that stuck with me was when he said that "Like most parents with a child with a disability, we share the same wish: to live just one day longer than our child." His bold statement hit me right in the heart, and I think about it often. What will happen to my son if he outlives me? Who is going to care for him? Can I ever earn enough and save enough to provide my child with a fulfilling life after I'm gone? 

Right now, Brennen is just eleven years old. I have grown into my role as a parent of a child with special needs. I am confident that I know what is best for him and that I am doing everything I can to create a beautiful life for him, and for our famiily, but the reality is that children with disabilities become adults with disabilities. It can be daunting to think about what the future holds for us, but I am encouraged to know that other parents are concerned about many of the same things, and are taking steps to create an option for long-term care for people with developmental disabilities.

L'Arche is a unique version of caregiving and community-building that fosters inclusion, understanding and belonging. L'Arche was created in 1964 when Canadian Jean Vanier welcomed two men with intellectual disabilities into his small home in France. Appalled by the conditions in institutions for people with disabilities, he founded what has become the international movement of L'Arche communities. L'Arche grew quickly and spread around the world. Today there are over 140 L'Arche communities in 40 countries. There are 29 L'Arche communities with almost 200 homes across Canada.

L'Arche believes that home should be a place of friendship where each person contributes. It believes in providing people with developmental disabilities with meaningful work, or if they are not able to work, ensuring that they have enriching daytime activities integrated as much as possible into the wider community. L'Arche believes that individuals with disabilities enjoy doing many of the same things that others in society enjoy and that, with assistance and accompaniment, participation is almost always possible.

Please watch this beautiful film that takes us inside a community home in Ottawa, Ontario that is part of the L'Arche organization.

Para Normal is an award-winning short film in which filmmaker Rostyslav Makushak introduces us to three adults with developmental disabilities, telling a story of their learning experience as they share their lives in a group home. The film is poignant and very moving. While the unique living circumstances of these individuals are evident, it is the joy, happiness and contentment that stands out above anything else.


I


The 'core members' (as the people with disabilities are called), are at the heart of the home, but it is not only the core members who benefit from this type of living arrangement. Every year, L'Arche has a transformative impact on the lives of hundreds of young people who assist in L'Arche settings. Your soul cannot help but grow in a community like this. I know from experience that working with and living with individuals with disabilities, you discover what is profoundly universally human in all of us.

Life in a L'Arche community may not suit everybody, but there are things about it that we can learn from and transfer to other settings, like the goodness and mutual enrichment that grows from relationships, and the spirit and attitudes that make life-shaping encounters possible.

Jean Vanier created L'Arche to nurture a different kind of life - one focused on connection, where the gifts and contributions of every person are valued, and where everyone can belong. When I think about what I want for my son when I am no longer here, or am no longer able to care for him, it is exactly this. I think about a safe, nurturing environment where he has friends, where he is accepted and loved and cared for in a way that we all want our children to be cared for - with dignity and respect, kindness and compassion.

You need to be ready to think about things like this. It's not an easy subject. I was contacted initially about a year and a half ago, by one of the founding members of Cornerstone Housing Society, and I was just not ready to talk about it, but it came to my attention again recently, and I am giving it some serious thought. I guess it's just that right now, today, I feel strong and capable as Brennen's mom. I know that right now I don't have to dwell on ten years, twenty years, thirty years down the road, but eventually I have to think ahead because his future depends on it. The good thing is that every day as Brennen's mom makes me ready for the next day, and it feels good to know that I am making connections and doing my part to make this world a kinder place for him to grow and thrive.

"A society needs all its citizens to contribute if it is to be healthy. Ironically, it is the very people whom our society so readily excludes whose humanizing gifts are most needed today. When the wider society grasps the benefits it receives from including all its citizens, the work of pleading for inclusion will no longer be necessary." - From: More Than Inclusion, L'Arche Canada, 2005

Sunday, April 17, 2016

The Mayor's Challenge

In 2010, Mayor Mike Bradley of Sarnia, Ontario issued a challenge to all Ontario mayors to "Do the Right Thing" and hire people with disabilities. Sarnia has a long history of providing diverse employment opportunities and creating an inclusive workforce, and Mayor Bradley has been a phenomenal advocate in that area. Sarnia’s vision is to tap into the full potential of the hiring marketplace by including people who have a disability.

Bradly says, “Both the city and the employees win from this. You're giving people a chance to fulfill their potential, and it's a great benefit to the workforce."

Currently, people who have a disability make up 16% of the Canadian population, making them one of Canada’s largest “minority” groups with nearly 5.3 million people - that's equivalent to the combined populations of Alberta, Manitoba and Saskatchewan!

Mayor Bradley is now following up his “Do the Right Thing” challenge to hire people with a disability, with a “Do the Smart Thing” initiative. Bradley says that there are many well researched studies indicating that individuals who have a disability are hardworking, dedicated employees who are more loyal to the job, have reduced absenteeism rates, better safety records, and better productivity than those on the job who don’t identify as having a disability.

At the Inclusive Communities Summit here in St. John's last week, Mayor Bradley issued the challenge to Mayor Dennis O'Keefe of St. John's, Mayor Randy Simms of Mount Pearl, and Mayor Karen Oldford of Labrador City, and they eagerly accepted.



Honourable Sherry Gambin-Walsh is the minister of Child, Youth and Family Services, minister of Seniors Wellness and Social Development, minister responsible for the Newfoundland and Labrador Housing Corporation, and minister responsible for the Status of Persons with Disabilities. Minister Gambin-Walsh gave the provincial address and closing remarks at the Summit:

"Inclusion is a necessity if we are to have a strong and dynamic province. I am confident that municipalities will respond with enthusiasm to the Inclusion Challenge issued by Mike Bradley, the Mayor of Sarnia, Ontario. The relationship between municipalities and the community of persons with disabilities has been steadily growing, and I look forward to a stronger relationship with our cities and towns as we move forward. This Summit has provided much food for thought, and no doubt, initiated new ideas. I firmly believe that full inclusion is possible. I believe that together persons with disabilities will achieve full and equal access to opportunities. We want a society where everyone has an opportunity for a good quality of life as active, healthy and successful citizens. We continue to work with public and private industry employers to encourage them to hire persons with disabilities."


We need our cities to ensure that all positions are open and accessible to every person who applies. It is important that the municipal sector demonstrates inclusive hiring practices and leads the way so other employers in the community are inspired. Municipalities are community leaders. Hiring people with disabilities and pointing to success stories encourages others to do the same. Cities will benefit from improving the lives of people with disabilities, building a stronger community, and healthy workplaces. By changing hiring practices to accommodate all applicants, cities will not only create opportunities for people with disabilities, but will also create the opportunity for employers to hire the right person for the job. 

The Mayor's Challenge - Hire a Person with Disabilities - A Toolkit for the Municipal Sector is available online HERE.

Saturday, April 9, 2016

Tulip Tales: Ethan

A little while ago, I came across a beautiful blog called "Ethan's Steps: A Walk with Hemophilia". In her blog, Kerilynn shares her experiences raising a son with hemophilia. Hemophilia is a rare and severe bleeding disorder. When someone has hemophilia, their blood does not have enough clotting factor, which is a protein in blood that controls and stops bleeding. Kerilynn writes not only to reflect on their journey, but to educate others as well. I have learned so much about this condition from reading Kerilynn's posts, and I am thrilled to be able to share her story with you here today!
  
*****


Before Peter and I ever learned that we were having a baby, we knew the potential was there that I could be a carrier for hemophilia. This was based on my family history and the way hemophilia is passed down. Since my Mom is a carrier, it meant there was a 50% chance I would also be a carrier. However, we talked about it countless times and we felt that it didn’t really matter to us - we knew either way we wanted to have children. We opted not to have genetic testing done because we felt it would cause added stress to my pregnancy. No doubt, knowing something like that would play on your mind over the entire nine months.

Leading up to my delivery I told my doctors that there was a chance I would be a carrier. I had testing done to see if I had a deficiency for factor eight myself (which is not uncommon in female carriers), but my levels came back fine. It was also charted in my file for the doctors and nurses to see before I went into labor. They knew that as soon as Ethan was born I wanted him to be tested for hemophilia.

On April 25, 2014 at 2:25pm I delivered a healthy baby boy. Ethan weighed in at 8lbs 7oz and was 56cm long. I had a great delivery and things were going extremely well… Until that night when we noticed that he just would not settle. At around 2:00am, Peter and I noticed that Ethan’s right ear was folded down a little and a lump had formed on his head above his ear. At that time we thought it was from the use of forceps during the delivery. The nurses assured us that’s what it was and we were fine with that.

Overnight it continued to get worse, but thankfully the pediatrician came in to see him right away the next morning. As soon as he saw him (and realized my family history) he knew something wasn’t right. After much observation and testing, they decided to transfer Ethan to the Janeway for further testing, as the resources they had available at the Carbonear Hospital were limited. We knew this was the best decision, and he would be in the best hands at the Janeway, so we quickly packed up our things and followed behind.

That morning seemed like an eternity, yet it was a complete blur. The drive in town, following behind the ambulance, I remember Peter and I having normal conversation like nothing was going on - I’m not sure if it was our way to try and not think the worst of things, or if it just hadn’t sunk in yet.

When Peter and I arrived at the NICU, we weren’t allowed in to see Ethan right away. He had to be stabilized and observed by the doctors before we could see him. I will NEVER forget the look on the nurse’s face as she left the NICU. She put her arms around me and gave me a hug, and I knew then that this was serious.

When we walked in to see Ethan, everything seemed so foreign. We were in a strange place full of unfamiliar faces as they maneuvered around all sorts of medical equipment. Ethan lay there with what seemed like a million wires and tubes hanging from him. My heart sank. In the hour that it took us to get to St. John’s, the swelling around his head had gotten so much worse; he didn’t look like the same baby.

I remember being overwhelmed with the jargon the doctors were speaking and all the scenarios they had thrown at us. Because the swelling and bleeding was so substantial, the doctors were extremely worried about the damage it may have done. They were worried the bleeding may have spread to his brain, which in turn could cause brain damage and affect his development. They were also worried because of the amount of blood that his body had lost (i.e. more than half of the blood in his body went to the bleed in his head), that it would affect his vital organs. When all of these possibilities were tossed around, Peter and I really had no idea what to expect. I remember sitting in a quiet little room in the NICU, just the two of us, while we waited to speak to the doctor. I leaned over and asked Peter if Ethan was going to live…

At that point, the doctor couldn’t assure us of anything. I do remember, though, that he just could not understand why my delivery had gone the way it did given my family history of hemophilia. Then the guilt set in. I felt so guilty because I had wanted a natural delivery. I felt it was my fault for not wanting a caesarean section. I know the doctor used the forceps to help speed along my delivery, which should have never happened, but I still felt at fault. I knew if anything happened I would never forgive myself.

When the doctor asked our opinion, we both agreed that given his situation if Ethan got through this and was ‘healthy’, but had hemophilia, we would be over the moon! That would be our best case scenario.

After two weeks in the NICU, numerous blood transfusions, countless tests and scans, around-the-clock care, and days of intense treatment, it was confirmed that Ethan was, indeed, a hemophiliac. We spent every waking moment sitting by Ethan’s side. Holding him, rocking him, feeding him, talking to him, and just being there for him.

We ensured we were there every morning for “the rounds” the NICU team made so we could hear what they had to say about Ethan in order to update our family and friends. We quickly picked up on medical terminology that once seemed so strange to us. After a few very long, stressful days we could tell he was progressing; things were starting to look up. Thankfully, all of his ultrasounds, MRIs, and CT scans came back normal. Our prayers had been answered and Ethan was going to be normal, healthy baby boy – with hemophilia.

We knew this was something we could learn to live with; that with help from the hemophilia team at the Janeway, and the support of our friends and family, this would be a new ‘normal’ for us. And a new ‘normal’ is exactly what it is. It’s all that we’re used to now, and all that we will ever know. Not only is hemophilia a part of Ethan’s life, but it’s a part of our life too.


Ethan has severe Hemophilia A. This means his body produces levels of less than 1% of factor eight protein. With Ethan’s factor eight levels being so low, his blood cannot clot properly when he bleeds. Where does the problem lie in this? This causes an extremely high risk of bleeding when he gets a bump or bruise of any sort. While Ethan’s energy level as a toddler has certainly increased and he has become much more active, exploratory and ‘crazy’ (as we like to call it), his hemophilia has been very agreeable. He has had no unusual bumps, bruises, or bleeds, and nothing that required extra treatment lately. For that, we are thankful! 

A little over a year ago (February 2015), Ethan had surgery to insert a port-a-cath so we would be able to treat him regularly at home. I can’t believe the difference Ethan’s port has made to the quality of his life – and ours! We have a routine; and a good one at that! Like I’ve said a many times before, this has become our normal… In fact, it’s ALL we know! In between morning showers, getting dressed for daycare, eating breakfast, and packing lunches we take ten or fifteen minutes out of our morning to access Ethan’s port so he can have his dosage of Advate (Factor VIII replacement). This happens three times a week in the comfort of our own home. And while it may sound like an inconvenience to some of you, it is NOT. It’s not an inconvenience when you can see how ‘normal’ it lets him be. We are so blessed to be able to provide Ethan treatment from home rather than having to rely on a doctor to do this. 


We are counting our blessings with how fortunate we have been with Ethan’s hemophilia thus far. Ethan has grown and developed so much in the last few months, but his dosage of Advate remains the same. Well, for now anyway. Until anything changes, I’m sure he will continue to be the energetic, dare-devil little boy that he is! For someone who should be laid back, careful, and cautious… he is NOT. He is active. He is rough. He is rowdy. He is very high energy. And he is downright ‘crazy’. But, that’s who he is and we certainly love him for that! We would be worried if a day went by where Ethan wasn’t climbing on the kitchen table or hanging from the kitchen cupboards. It wouldn’t be a ‘normal’ day at our house if Ethan didn’t try to jump off our bed or climb onto his change table all by himself. This is who he is! And, not only have we accepted it… we have embraced it! He has become this independent little boy who loves to do things on his own. There’s not a day that goes by that we aren’t amazed at the list of things he is able to say, do, or ask for. It truly is amazing how quickly he is growing.


***** 

Thanks so much, Kerilynn, for allowing me to share Ethan's story here. What an incredible little boy you have! I am so happy to hear how well he is doing, and I am thrilled that you are able to manage Ethan's treatments at home. Anything that allows you to spend more quality time together as a family, and less time in the hospital is a bonus! 

I just love this Tulip Tales series! I always learn so much.. most of all, the fact that we are all celebrating our unique journeys and all of the things that make life interesting and meaningful and hard and good. Thanks for being here and for reading these stories. I am always so humbled and grateful to share them.

Be sure to stop by Kerilynn's blog for updates on how Ethan is doing!  Ethan's Steps: A Walk with Hemophilia

Wednesday, April 6, 2016

Move for Inclusion: A film by Ben Quaiff


Last Summer, I introduced you to Nick Foley and wrote about his incredible journey across Canada. Move for Inclusion was a nationwide fundraising effort in which he rode from Victoria, B.C to St. John’s, NL on a bicycle over the course of 3 months. (You can see that post HERE.) Nick traveled across the country spreading the message of inclusion and the importance of acceptance without bias, and raising awareness through action and movement.

Nick was inspired by his beautiful daughter, Brynn, who was born with Down syndrome. He was inspired to raise awareness and create an understanding that all individuals, regardless of ability, are deserving of love and dignity and respect.

Nick's journey was captured by filmmaker Benjamin Quaiff, who did an incredible job of documenting both the physical and the emotional aspects of the story. It is really amazing to see the start of Nick's journey on the West coast, and to follow him across provinces, through the mountains and rough terrain, through rain, sleet and hail, making his way across the country to the easternmost point, in St. John's, Newfoundland.

There is so much emotional depth and strength that comes through in the film, as we see Nick struggle with his own challenges, missing his family and his daughter Brynn, but not wanting to let anybody down, and determined to complete this thing. Nick exudes both confidence and vulnerability. He is enthusiastic, and remains focused on his mission, driven by the desire to perpetuate an environment of acceptance and inclusivity. He tells his story and spreads his positive message at various stops, speaking at a number of schools and organizations along the way. He has a gift of quickly drawing in every person in the room, and making a personal connection. He wants to help people. He hides nothing.

Nick is joined for part of his ride by Phil Kerr, who at the age of thirteen developed lymphoma - a cancerous tumor around his spine, and lost the use of both of his legs. Phil didn't lose his spirit, as he continues to enjoy the thrill of extreme sports, riding dirt bikes, snowboarding and wake boarding. Nothing stands in his way, not even his wheelchair. Phil runs a clothing company called Twisted Mounty, and is part of the Move for Inclusion team, where he tells his story to students at public schools across Ontario.

Throughout the film, we see how the message and the movement impacts those closest to it. Darren Moore is part of the Move for Inclusion support team, and we get to witness several very touching and emotional moments between Darren and Nick. This is a film that will touch your heart and ultimately inspire you to want to do more, to be a part of something bigger. Move for Inclusion is a highly personal film that will open your mind and make you think about how you too can encourage and promote inclusion and acceptance.


Move for Inclusion premiered at the Belleville Downtown DocFest - International Documentary Film Festival, where it won second place for Best Local Film.

Please watch the trailer, and if you get a chance to see the film, I would love for you to do so. Films like this need to be made. Films like this need to be seen. Sharing stories of inclusion is so important. The word 'inclusion' should be viewed as a word of action and this film will leave you feeling empowered to create that action and make a difference in your own community.



 Move for Inclusion 

Directed by: Ben Quaiff 


This inspirational film follows Nick Foley as he completes a nation-wide bike ride fundraiser promoting inclusion of all people regardless of their exceptionalities. Watch Nick's physical and emotional journey unfold as he completes his journey towards a more inclusive Canada. 

 



I had a few questions for Ben about how he got involved with filming Move for Inclusion, and what he took away from the experience.

Here's what he had to say:

"I had a chance to meet Nick at a wedding I was filming. He was the MC, and worked the room like no one I have ever seen before! While meeting him, I discovered that he was a recent father of a child born with Down syndrome (Brynn). I too was about to become a father, and it was easy for me to put myself in his shoes regarding the concerns and added stress that he was under in regards to the unknown medical challenges that Brynn would have to overcome. It also hit home knowing that I too would want my daughter to live in a world that was more inclusive and free of biases. We met up months later at a coffee shop. I wanted to produce a documentary for a local Film Festival (Docfest) and he wanted someone to produce a video to promote his ride across Canada. I said "I'll film a promotional video, and I'll also produce a documentary covering your journey." The rest is history! I gave Nick a GoPro and a HD handy camera to record a diary every week of his ups and downs throughout his trip. From this whole experience, I learned that we are all prone to biases, and whether we directly or indirectly know we have them it's important to bring them the surface so that we know they exist and discuss how we can move past them to become a better version of ourselves. I also learned that the power of a thought can go a really long way. I wanted to make a film. Nick wanted to cycle across Canada to raise awareness and raise money for charities that promote inclusion. By believing we could achieve these goals, we did, and that's what we hope others will do. Believe that you can make a difference in the world, and you will!"

I also chatted with Nick about his experience, and about what is next for Move for Inclusion. Here's part of our conversation:

Me: How do you feel having completed such a huge undertaking?

Nick: I guess, if I am completely honest, I feel a sense of relief that we were able to accomplish what we set out to do. There were so many pieces and moving parts in all this that had to fall into place, and with the help of some amazing people, they all did. Move for Inclusion and the Ride consumed me for almost two years with all the training and planning that had to go into it. Our goals were to get across safely, raise awareness and raise money for charity, and we were able to do all three, which I am very grateful for.
 
Me: What did you learn along the way?

Nick: I learned so much on my journey. I learned that people in Canada are amazing! and selfless! and courageous! I learned the importance of good family and friends, and that those are the true things that matter in life. I learned that if your "why" for doing something in this life is big enough, your "how" will always show up. I learned that people are capable of doing whatever they put their minds to.

Me: What is next for you?

Nick: Me personally, I am currently writing a book based on my riding and Move for Inclusion experience, in hopes that it will help others do things that they have always wanted to do. I am looking at new opportunities for Move for Inclusion, not exactly sure what we are going to do next. I do however, know that we need to build on the momentum we gained with the Ride. And most importantly, I am spending lots and lots of time with beautiful Brynn.

Me: What would you like people to know about individuals with disabilities?

Nick: I just want people to understand that we all matter! That it does not matter what your diagnosis or exceptionality is, what matters is that you are human, and as such, deserve all the same rights and liberties as everyone else. I think if we can continue to work towards that, we are building towards a more inclusive Canada.


Visit www.moveforinclusionfilm.com to request a copy of the film!

Saturday, April 2, 2016

Baby Riggs

A couple of months ago I received a beautiful email from a Mom whose young son had just been diagnosed with CP.

Jennifer said: "My baby boy was born 15 weeks early, weighing in at 1lb 8.5oz on September 22, with his due date of January 6, 2016. He was almost an hour without breathing when he was born, and on his second day of life, he had 2 brain bleeds - one on each side of his head. Yesterday we were told that he would have severe cerebral palsy. When looking online for support groups in this province, I found your site. I read each and every "Tulip Tale", and each one made me realize just how lucky we are to have Riggs, and how special he really is."

Jennifer and her husband, Steve had tried for ten years to get pregnant, before they were blessed with their precious baby boy.

Just over a week ago, on his six-month birthday, Jennifer wrote: 
"6 months ago we were in complete shock, and upset. We didn't know if Riggs would survive, he had a very, very hard start at life. The last 6 months have been a very bumpy, rough road, but every single day he amazes me more and more. Riggs you are mommy's entire world. You are who you are supposed to be, and you have given me the most blessed life lessons."



I was saddened to learn that baby Riggs took his last breath last night, in the arms of his Mommy and Daddy, and surrounded by his loving family.

Jennifer, I do not have the words to tell you how incredibly sorry I am. I cannot even begin to imagine what you are going through. I know that you will likely live with the pain of this loss every moment for the rest of your life, but I hope that you will also live with the joy and love that your sweet baby brought to you. You will always have that love, and the bond you shared will never be broken.

Remember your boy. Remember every detail, every expression and every sound he made. Celebrate his life, and know how many lives he has impacted.

Riggs was a fighter and a hero. Jennifer said, "He fought harder than anyone I have ever known, and I lost both of my parents to cancer."

Losing a loved one, someone who made up your whole world, will burn you into a million pieces. There will be darkness, and you may be overwhelmed by the rawness of emotion. But, there is also light in the process. If you give yourself permission to mourn, knowing you will rise from the ashes, it will allow you to break and feel and truly process the unimaginable loss. And this allows for hope.

Jennifer, I wish you and your family much love, strength and hope. May your son's memory always be a blessing.

My sincere condolences to your family.