Wednesday, March 30, 2016


Today, an organization with a long history of providing supports and services for people with disabilities unveiled a new name and look. The Independent Living Resource Centre is now Empower - The Disability Resource Centre.

The organization which works towards creating an inclusive society presented the new name and the components of an awareness campaign that includes social media, television, radio and print.

Kimberly Yetman Dawson, Executive Director with Empower - The Disability Resource Centre, said "The new look reflects more accurately the role the organization plays in our community and the impact it has in the lives of people with disabilities." Yetman Dawson said that Empower responds to changing needs through offering programs that are customized to each individual.

Empower programs and services are available at no charge and include Advocacy Skills, Career Development, Independent Living Internship, Peer Support, Adaptive Technology and Volunteer Services. Programs are customized to meet each individual's needs.

Cecilia Carroll, Board Chairperson, said that the awareness campaign will highlight the significant role Empower plays in our province. Carroll stated, "Empower is more than just a word that expresses what our organization does. It's the sense of strength of inclusion that people get from their experience with us."

The Independent Living Resource Centre was originally established by persons with disabilities, community representatives, and advocates as a not-for-profit corporation. For more than 35 years, the ILRC delivered a broad range of supports and services for people with disabilities. Empower - The Disability Resource Centre has been built on that foundation and will continue to work towards a more inclusive society in Newfoundland and Labrador. Empower supports people with disabilities to make their own choices, take risks and have control over their supports and services. While the vast majority of people who use Empower are individuals with disabilities, supports and services and also available to family members, community groups, employers, and government agencies.

Empower's vision for Newfoundland and Labrador is an inclusive community; a society that embraces diversity and the rights of all individuals to choice, self-determination, and independent living.

Empower - The Disability Resource Centre is located at 4 Escasoni Place in St. John's.

More information may be found at

Tuesday, March 29, 2016

Wee Piggies

I'm not a hoarder, I swear. Ok.. my closet looks like it belongs to a hoarder - like a serious hoarder from the tv show, and I acknowledge that I have a problem there, but the rest of our house is fairly tidy and organized. I get rid of things when I can - donating clothing, toys and household items to charity, and we've had a few garage sales over the years, but there are just some things that I need to hold on to.

I love anything personal and homemade. Our home is filled with beautiful keepsakes that combine to tell our story - handmade blankets that were gifted to us, personalized drawings of our family, items we've brought home from our travels that remind us of where we've been and where we are right now. It's all so special and meaningful, and so.. us. 

I love checking Brennen's bookbag each day after school to see what treasures he's been working on. I have boxes and boxes of crafts and paintings and projects that he's come home with over the years, and I find it hard to throw anything away. It's just all so special. Anything that his little hands have touched means the world to me.

I keep birthday cards and invitations, boarding passes and concert tickets. I have Brennen's first lock of hair beautifully preserved in a scrapbook that also holds many other treasures, like his ultrasound pictures and birth announcement. I take photos of everything, and I remember important dates. I have the program from his first music recital, and certificates from everything he's ever been involved with, tucked away in a safe place to save forever. I keep report cards and progress reports, hospital bands, newspaper clippings, and anything that holds meaning and memories that I never want to forget. 

I am acutely aware of how quickly time passes, and I want to hold on to every second. Brennen is growing up before my eyes. He's not a baby anymore (though he will always be my baby), and I am trying to hang on to every moment of his childhood. My heart skips a beat when I realize that he will never be this little again. I want to remember how his hands fit into my hands, how his body curls into mine, and how his head tucks perfectly under my chin. This is the joy of motherhood.

Now, don't get me wrong, I'm not all "Debbie Downer" about it either. Sure, thinking about the future scares the crap out of me sometimes, but to be honest, I am excited for the future, and for new adventures. More growth and learning can never be a bad thing. Time is a gift that I am happy to receive.

Wee Piggies was started in 2001 by a Mom wishing to capture her children's unique hand and footprints. As the brand evolved, product lines were successfully added to include Sterling Silver Fingerprint Jewelry.. which I absolutely adore!!

I love learning about the different ways that women are able to balance their personal and businesses life, and I am always inspired by women who are able to work from home while raising their children. Charlotte Dinham is the operator of Wee Piggies & Paws here in St. John's, and she is doing just that. Charlotte is a mom of two, and a proud business owner. She loves meeting clients in her home, and capturing the 'newness' of babies and the uniqueness of children. Charlotte is an absolute delight to work with! She was so gentle with Brennen when taking his thumb print, like she's known him forever.

Wee Piggies is proud to be a Canadian company, started and run by Moms who strive to balance work and family while at the same time, make a difference producing one-of-a-kind, beautiful, lasting keepsakes. Wee Piggies produces a range of children's memorabilia, including Shadow Boxes, LifeCast Statues, Raised Impressions, Photo Crystals, and Sterling Silver Jewelry. Each piece is truly one of a kind, created just for you.

I just love having Brennen's little fingerprint and his name hand-stamped in a heart, close to my heart. It is so personal and meaningful, and I will treasure it always.

Check out Wee Piggies & Paws, and their beautiful collection of meaningful gifts and keepsakes!

Saturday, March 26, 2016

The Benefits of Massage

Our lives are busy and full, which means that my mind is busy and full, and it can be hard to turn it off. There is no switch or off-button for emotions, and sometimes, in this world of special needs parenting, our emotions can become too much. While I try to take one day, one minute, one moment at a time, undoubtedly those feelings of sadness and worry, anxiety and discontentment creep up to remind me of the difficult road we are on. When my mind starts racing, I am able to cope in a number of ways - I get out of the house, go for a run, take our dog for a walk, go shopping for some retail therapy, or I go on a cleaning / organizing frenzy, which somehow makes me feel more in control of everything.

I often wonder what Brennen can do when he feels stressed. I mean internally, how does he cope? He can't get up and go for a walk. He can't talk or write and unload his thoughts like I can. It's horrible to think of him being trapped in that way.

Brennen is generally very happy and calm. He doesn't seem to be frustrated about his situation, but I think it is so important to provide him with lots of opportunities to relax and unwind. We love getting cozy at night, letting our bodies wind down from a stressful day. Brennen loves bedtime, and he knows his nighttime routine. He gets his jammies on, has his medicine, a drink, and brushes his teeth. Then he's ready for a snuggle on the couch, where he sings to himself until he closes his little eyes. He loves being tucked into bed, and he sleeps soundly all through the night. Sleep is so important to him, and we try to keep him well-rested. We use a sound machine for white noise (or water sounds, or birds.. anything soothing and relaxing that you can drift off to sleep to). We even have a CD of quiet flute music that his Music Therapist recorded for him.

When I think of all the therapies and treatments that Brennen has been through, I find it hard to believe that until recently, massage therapy was not one of them.

We know that he responds well to gentle touch. My Mom is famous for giving Brennen the "spa treatment". Any time he is over there, she gives him a full body massage with creams, oils, and soothing music. I think my Mom enjoys it as much as Brennen does. It is relaxing for both parties, and is such a great way to feel connected. Affectionate touch is a powerful form of communication, and is a wonderful way to bond with a child.

Knowing how much Brennen enjoys untrained massage, we decided to look into actual massage therapy. We started taking Brennen to the Academy Canada Massage Therapy clinic, and he has been thoroughly enjoying his weekly massage sessions! The sounds, the smells, the low light, the warmth of the room.. he is so tuned in to what is going on around him and so in tune with Stephanie, his Massage Therapist. She has been so wonderful with him, and was eager to treat Brennen from the first time we met. She is gentle, kind, and attentive to his body and how he reacts to her touch. She is curious and compassionate, asking questions about his history and getting to know his personality. She is comfortable with Brennen, and he is comfortable with her (which makes me comfortable with her!).

There are so many known benefits to massage therapy, aside from the fact that it just plain feels good! For a child like Brennen, simply sitting in his wheelchair for extended periods can be exhausting. Something as 'simple' as holding his head up, for him is not so simple. His little body is exerting so much energy all the time, and that has to take its toll. Massage therapy improves circulation, stimulates growth, eases aches and pains, and increases the flexibility and function of muscles and joints. When you give a child a massage, you are stimulating their central nervous system. Their brain produces more serotonin, a feel-good chemical, and less cortisol, a stress hormone. As a result, your child's heart rate and breathing slow down and they become more relaxed. 

Massage Therapists can make a positive difference in a child's life. They provide a safe and loving touch that can work in addition to occupational therapy (OT) and physiotherapy (PT) to aid in the development of gross motor skills and to improve muscle tone in children with disabilities.
Performing Swedish massage on a child with cerebral palsy can help regulate muscle tone by decreasing tone in spastic muscles and increasing tone in muscles with low tone.

Massage supports respiration and deep breathing patterns. It enhances the immune system by increasing circulation and lymph flow, and helps children relax and learn to calm themselves. Over time, massage also helps a child become more accustomed to tactile stimulation and aids in body awareness.

It has become obvious to me that Brennen has everything to gain from massage therapy. We all have a basic human need for contact and compassionate touch, and children with special needs are no different. Massage provides our little ones with the positive experience of touch, and it has the potential to greatly improve their quality of life.

Amy Norris is a Registered Massage Therapist, and is one of the massage therapy instructors and clinic supervisors at Academy Canada. Amy says, "The school welcomes clients to the student massage therapy clinic to assist the students in learning how to treat clients with a variety of conditions and disabilities. Students are supervised by a Registered Massage Therapist and must perform an initial assessment on clients to determine if massage therapy treatment is safe and appropriate. We also offer outreach opportunities where we schedule full clinics for community groups, organizations or workplaces - these are done either at the school or on-site at locations organized by these groups."

I asked Amy what her students gain from working on clients with disabilities.

She said, "The students in the massage therapy program learn about treating a variety of conditions from musculoskeletal injuries like strains and tendinitis, to central nervous system disorders like multiple sclerosis and cerebral palsy. In class, students practice these treatments on each other in a simulated environment. Having clients like Brennen come in to our student clinic allows the students to experience treating the actual conditions. They get to palpate (feel) muscles in altered states that they do not normally get the opportunity to work with in the classroom while treating classmates. They get to see the effectiveness massage therapy has on these conditions... and an opportunity to truly bring relief and comfort to those living with these sometimes debilitating conditions. The majority of clients that come to student clinic have everyday muscle aches and pains, and although they bring great value to their learning environment, their experiences are just not as unique and rewarding as working with clients like Brennen.

This has been an amazing experience for Brennen, as well as for Andrew and I. Seeing the benefit that Brennen receives from his massage, and how calm and relaxed he continues to be after each session brings us so much comfort. We know he is in good hands, with people who truly care about his well-being, and that is worth more than I can say.

If you think that massage could benefit your child with special needs, I would highly recommend Amy and her students at Academy Canada. Call the school at 570-2746 and be sure to leave a message on the answering service - students return calls before, after or between classes. There are so many potential health benefits to massage therapy, and choosing to be proactive about your child's health is never a bad choice!

Friday, March 18, 2016

Playopolis Toys - Exploring the Sense of Touch

It is normal for children to seek out sensory experiences as part of their natural development. When your child has a disability or developmental disorder, it can be difficult for them to explore their environment like other children, and often need help finding sensory stimulation.

The sense of touch, or tactile perception, is a complex sensory system that is critical for ALL children (and adults for that matter), not only those with disabilities. The tactile sense is how we interpret information we get from the receptors on our skin. When we touch an object, our nervous system receives the information and helps us analyze the tactile qualities such as texture, pressure, and temperature, to determine what it is we are feeling.

When the tactile sense is fully functioning, children are better able to respond to all of the sensory input they receive throughout the day. Some children, however, experience difficulty processing this tactile information. They may be hypersensitive to touch, causing them to avoid certain tactile experiences, or they may be under-reactive to touch, where they would seek out more tactile input to give their bodies what they need.

Brennen enjoys all sorts of sensory stimulation - from motion, touch, sight, sound and smell, he uses his senses to explore and interpret his environment. He lets us know what he likes and what he doesn't, and he has obvious preferences for certain things. We have a Snoezelen Room in our home, which allows him to enjoy a wide range of sensory experiences without having to leave the house. Our Snoezelen Room includes a wonderful blend of sights, sounds, textures and aromas within an environment that is filled with a variety of easy to use devices, buttons, switches, and easy to grasp objects with different textures. 

This post is focused on touch, so I have compiled a bunch of fun toys and tools from Playopolis Toys that we use to provide opportunities for play and exploration using the tactile senses. These toys are great for use at home, or are easy to take along with you to help your child meet their sensory needs while on the go.

Playopolis Toys provides toys that encourage children to play, to learn what happens as a result of their actions, and to build on their skills. In addition to their online store, Playopolis Toys offers workshops on selecting and using toys for children with disabilities. These hands-on learning opportunities enable special needs programs like mine to make better selections and to explore all the ways these toys reward play and enhance development.

I consulted with Christina Wallerstein, President and 'Chief Play Officer' at Playopolis Toys, in selecting appropriate toys for our group. Christina says, "All children learn differently. We offer toys with universal design to maximize sensory awareness as well as gross and fine motor, language, and cognitive development among children with diverse abilities. These toys offer distraction and multi-sensory stimulation, particularly beneficial to special needs children. As the mother of a son with learning disabilities, I understand the challenges of finding safe, durable, developmentally appropriate toys and activities that allow a child to be a child - to lose himself in joyful play with toys chosen to reflect his preferences and his abilities and designed to stimulate further success."

Here are some of our favourite texture toys from Playopolis Toys!

The Aku Ring - These soft, super flexible rings feature a unique studded surface that makes grasping and catching easy. It's funny to watch children's reactions to this one - Brennen doesn't like the spiky surface, but others are really drawn to it!

Brain Noodles - These are jumbo 18-inch long, silky fiber stems that bend and twist any way you want! The Brain Noodles invite open-ended play and provide visual and tactile stimulation. Bright colors, soft, silky texture, and flexibility make Brain Noodles an ideal tool for sensory-motor integration and occupational therapy. They are like giant pipe cleaners, without the sharp end!

Teachable Touchables - Smooth or bumpy, fuzzy or furry, soft or scratchy? Children build tactile awareness and vocabulary as they explore ten distinct pairs of textured squares. Each pillow or patch measures approximately three inches and fits easily into small hands and into the cloth drawstring bag. You can make patterns or play pairing games, and they are portable so you can take them with you on the go!

Bead Ball - Stressed out? Need relief? Grip a Bead Ball and knead away your stress. This ultra soft, flexible, thermoplastic ball filled with hundreds of brightly colored squeezable soft beads invites play, relieves stress and restores a sense of calm. It is the ideal exercise for building hand and finger strength.

Oddballs - These balls offer unique textures, patterns and bright colors that children love to bounce, kick, squeeze, roll, chase and play with! Each ball looks, feels, and plays different, providing a unique sensory experience.

Tactile Bars - This interactive sensory game strengthens tactile perception and concentration. Each wooden bar holds 9 smaller textured bars that can be removed to match together or create a variety of tactile combinations. Brennen loves the feel of the bristles and the ridged surfaces.

Wikki Stix - Bright and colorful, nontoxic Wikki Stix bend easily, enabling a child to create pictures, letters, even stand-up flexible figures. They provide tactile stimulation and help develop fine motor skills. Wikki Stix don't break, dry out or stiffen, and can be reused over and over again to make all kinds of fun creations!

Tangles - The perfect manipulative for stress relief and hand therapy! These twistable tangles come in a variety of sizes and textures, including 'Tangle Relax Therapy', which features a soft, pliable coating and distinctive raised tactile nodes. Tangles are easy to grip and manipulate, are lightweight and portable, and are endless fun!

We have been having so much fun with these texture toys! Thank you to Christina and Playopolis Toys!

Watch this wonderful video on Playopolis Toys and their idea of how children learn through creativity. 

"Kids learn best when we respect their ideas, when we trust them enough to let them use the toys that
 we put out for them in ways that are meaningful to them." - Christina Wallerstein

Thursday, March 10, 2016

Happy in Holland

This is a piece I shared a couple of years ago, but wanted to re-post for any new readers who might be wondering, "Why the name?"
My blog is called Tiptoeing Through (the Tulips). I run a child care program for children with special needs, called Little Tulips. Why am I so obsessed with tulips?! 

This whole ‘Tulip’ theme I have going on stems from an essay called “Welcome to Holland”, a story that many parents of children with special needs are familiar with. It was written in 1987 by Emily Perl Kingsley about her own experience having a child with a disability. I remember when Brennen was just a baby; being given this essay by one of the specialists we were seeing. Though there should have been, there was no warning, no precluding cautionary statement advising me to have tissues close by. She knew that I would appreciate it, and she was right. I read it and instantly connected. The words made sense. The analogy was strong and accurate. I have copied it below.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....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.


As time went on, and the realities of having a child with special needs were sinking in, I began to realize that it wasn't that simple. It wasn't so easy to accept that I had landed in Holland, not at all where I had intended, and not at all where I wanted to be. I didn't speak the language. I didn't know my way around, and I didn't have a single friend there! How was I ever going to survive in such a place? There was something missing from Ms. Kingsley's original essay. It skipped over a lot of the harsh truths and went straight to the happy ending. Was there even to be a happy ending?

And then, I stumbled upon the blog of a special Mom who felt much the same way. She wrote her own version of 'Welcome to Holland'. It is raw and it is real. It's called Amsterdam International, and it goes like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland?  If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved
Dana can be contacted at: 


These two women / authors / mothers both offer valuable insight into the unique journey that is raising a child with special needs. Each traveler has to find their own way. There will be ups and downs, good days and bad days. There will be days when you are proud to embrace the Dutch culture, and days when you'd rather be anywhere else.

Right now, I am happy in Holland. I am rocking my wooden shoes. I am surrounded by Tulips, and they couldn't be more beautiful!

Thursday, March 3, 2016

It Takes Courage

"It takes courage to grow up and become who you really are." - e.e.cummings

Life takes courage.

I have been so inspired by the lives of the many children we know who face life threatening illnesses and disabilities. The children featured in my Tulip Tales series have been my source of inspiration. Children with physical disabilities, like my own son, or those with medical complexities or multiple diagnoses - they have incredible strength and courage and are a living testament to the unbending spirit that resides within all of us. These beautiful children have added a whole new dimension to my own perspective on life, as I hope they do to yours.

These children's lives are filled with therapy sessions and doctor's appointments. They have been through surgeries and procedures and have had so much to endure at such a young age. It doesn't make sense. Why should a four year old have to battle cancer? Why must a baby never know a life free from tubes and machines? Why does a young child have to struggle so hard to do what comes so naturally to others? Why?

Life can be unfair. Life can be hard, and we don't have all the answers. It takes tremendous courage to face the challenges that have been placed upon us. Sometimes the weight of everyday life can be overwhelming and it takes courage and strength to plow through.

Mary Tyler Moore said, “You can’t be brave if you’ve only had wonderful things happen to you.”

It's true. There would be no need to be brave if life was easy. The fact is that we all face challenges and adversity. It is how we handle ourselves and how we choose to face our challenges that will have the most impact on the path our lives will take.

It takes courage to live this life. Children with severe disabilities and medical conditions possess an incredible strength and bravery, and parenting them requires tremendous courage and strength as well. I struggle with fear about so many things - the responsibilities are enormous - but I have begun to understand that I can acknowledge the fear, and move on with courage.

There are many things in life that are scary, but some of the best things in life are things that scare us at first. Like traveling across the world, changing career paths, starting a new relationship, having a baby.. receiving a diagnosis.. and raising a child with special needs. All of these things may make you scared when you first think of doing them, but it can be even scarier to think of not doing them. Sometimes you come out of those scary, painful moments a different person. A better person. A happier person. Those scary moments can make the happy moments that much happier. Does that make sense? My life didn't go as planned for me, and that's ok. That's more than ok. In fact, I've never been happier! I think sometimes where you think you want to go, is not the place where you will find your heartfelt, most meaningful, most purposeful life. I have found that purposeful life in raising my child with special needs, and caring for other children with disabilities.

I have learned that I can do hard things.

I would never before have considered myself brave. I don't like roller coasters or airplanes. I don't eat strange things. I would never go bungee jumping or sky diving. I am not brave in that sense. But I have learned over these past eleven years that I am braver and stronger than I ever thought I was.

It's not easy. Sometimes courage is so hard to find. When your tank feels empty, it can be hard to believe that you have any courage left at all, and finding renewed strength isn't always something that you feel capable of. When you think you've done the hard things, there are always more things that require more courage, and you just feel like saying, "But I've already done the hard things. I'm taking a break."

But of course, there is no break.

I am continuing to learn about being brave, and having courage. I learn from all of your stories, as they have brought inspiration, joy, tears, understanding, truth and love. My heart is full and I am grateful for all that I have been given, and all that I continue to receive. My son, Brennen is a constant source of strength for me. I am driven by the strength that comes from within him. I have learned so much from him, and have grown in ways I wasn't expecting. There is no question that my life has changed forever with an increasing awareness of my own strength through adversity, and a greater understanding of what's important.

Our "COURAGE" shirts are from Redfish Kids

"Redfish Kids is a clothing company from Vancouver, BC. Each Redfish garment is made with love and attention to detail. Born out of a need to create clothing with "heart", Redfish Kids clothes are symbolic of our commitment to honour the strength and courage of our children and their unlimited potential to shape the future of our world."

Every day, kids show courage. That courage is what inspired the creators of Redfish Kids. Their “Clothing for the Courageous” motto reflects the brand’s commitment to children and serves as a celebration of their courage, creativity and unlimited potential to shape the future.

Wishing you courage, today and always!

-Julie xo

Tuesday, March 1, 2016

Rare Disease Day 2016

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients' lives. 

I wrote about Rare Disease Day last year - you can see that HERE.

The theme of Rare Disease Day 2016, "Patient Voice", recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Patients and patient advocates use their voice to bring about change that:
  • Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels.
  • Increases and improves rare disease research and orphan drug development.
  • Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases.
  • Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
  • Helps to reduce isolation sometimes felt by people living with a rare disease and their families.
Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world. 

I was invited to attend a Rare Disease Day 2016 event held at the MUN Medical Education Centre. This event brought together parents and health care providers, and featured some wonderful speakers with their own unique perspectives on rare diseases.

Dr. Kathy Hodgkinson is a researcher at Memorial University, who spoke about the importance of rare disease research here in Newfoundland. Dr. Hodgkinson talked about her work with families who carry the gene for the rare but deadly arrhythmogenic right ventricular cardiomyopathy (ARVC) - a form of heart disease that usually appears in early adulthood and causes sudden cardiac death. She described the impact her research has had on these families, since they are now able to identify the gene responsible for ARVC.

Lucy-Anne Vokey is a former teacher and parent of three children (including Hannah, who I wrote about HERE). Lucy-Anne spoke about the joys and challenges of parenting a child with a rare diagnosis.

Terry Kelly, one of my favourite humans (see HERE and HERE) was the Keynote Speaker for the event. Terry is a paralympian, singer, songwriter, entertainer, and lover of life. At the age of two, Terry's eyes were removed due to retinoblastoma, a rare, hereditary form of cancer. At the age of seven, he left his home in St. John's, Newfoundland to attend the Halifax School for the Blind in Nova Scotia. It wasn't easy for either Terry or his parents, but the difficulties initiated Terry's quest for challenge, developed his love of life and nurtured his musical talent. Terry uses his life experiences to touch the hearts of many and has motivated tens of thousands (including myself) to overcome personal challenges and live their lives to the fullest.

It was a special event, made notable by the powerful stories that were shared by some really special people. Lucy-Anne spoke so beautifully and emotionally about her daughter, describing many of the stresses involved with medical appointments and navigating the education system. She spoke to my heart when she talked about how much she has learned from her child, concluding with "We've come to realize that Hannah is our teacher, not the student."

Terry talked about his experience growing up, going to the School for the Blind, and how his parents had the incredible courage to send him there, knowing it would be the best place for him to learn and grow and gain real life experiences.

Terry also talked about his visit with my family over Christmas, and how he felt the love around Brennen as soon as he entered our home. It was very touching. I always appreciate when someone else can see and experience what I do every day - the joy and love around my little boy and the energy that comes from him is hard to describe in words, but Terry picked up on it right away. He ended by saying, "I hope you all have the opportunity to let someone like Brennen hug you with their beautiful light."

A rare disease is any disorder that affects a small percentage of the population. Although the diseases may be rare, the number of people fighting them is great, and the patients and their families share a common struggle. Families touched by rare disease are often left in the dark with little or no community support, advocacy or outreach programs. We need more events and opportunities like this one - with doctors and nurses, therapists and researchers, families and caregivers, all coming together for a common purpose - to raise awareness of rare diseases and to bring compassion and understanding to those who live with them.

We will celebrate, celebrate life
Find the joy in the journey
And shine our light.
Many hearts, many minds grow hope and make us strong
Together we’ll overcome and celebrate life

- Terry Kelly, "Celebrate Life"