Getting into the Christmas Spirit!

Last night we had our CP Association Parent Support Group Annual Christmas Potluck and Ornament Exchange. Well.. what a fabulous way to kick off the Christmas Season! Glenda Power, one of the founding members of the group was once again, the 'Hostess with the Mostess'.  Her home was beautifully decorated for the holidays. Driving to her house, we could see the lights as we approached, and before we even parked the car, I got the feeling that "This is exactly where I want to be!"

Her tree was perfection. Everything was sparkling and bright and full of love and meaning and memories of Christmases past. The house quickly filled with people - all parents of children with special needs. Many of us have long been friends, since our kids were little and we were new to this journey. Some were just starting out on their own path of raising a child with a disability.

It is amazing to see the connection that is made, almost instantly, and without words even having to be spoken. We just know. We are all there at that time for the same reason. We are a group of parents who are very different from each other in many ways, but alike in so many more. Though we all have challenges, we want the same things for our children. We want them to grow up feeling loved and valued. We want them to have opportunities for education, for friendships, and for meaningful experiences. We want the world to see their personalities and their abilities, and the joy that they bring to their families and to those close to them.

Connecting with parents like we did last night is invaluable. There is so much we can learn from those who are just a little bit further down the road than we are. There is so much wisdom that comes with experience, and it is a privilege to be able to pass that along to those who are following closely behind us. Raising a child with a disability certainly comes with it's challenges, but it also opens up a world of possibilities, new friends, life lessons and tremendous love.

It is a wonderful feeling - being in a welcoming home, surrounded by parents of children with many different disorders and diagnoses. All parents who have embraced the heartache of raising a child with special needs, and who are happy and hopeful in spite of it.

Thank you, Glenda, for hosting a fabulous evening. 

Thank you to everyone who came and joined in our Christmas silliness, and thank you all for the gift of your friendship. 

I wish you and your families a very Merry Christmas!

Bella's Secret Garden

Earlier this year, I brought you the story of an incredible little girl named Bella. Bella came into this world with a poor prognosis, and was diagnosed with a rare syndrome called Frontonasal Dysplasia. Bella has undergone some major surgeries since I last wrote about her. 

Her mother, Lisa shares an update.

*****

At the age of 20 months, Bella has already undergone three major craniofacial reconstructive procedures. Her head circumference has been brought from the 0 percentile to the 75th percentile. Her skull has changed shape significantly, and her midface, nasal bridge and orbits have been surgically moved forward.

Bella has Craniofrontonasal Dysplasia, a rare syndrome that we are still learning about today. Bella's future skull growth is likely to regress and will need frequent "tweaking" until adulthood. She has surgically-created soft spots that may need closing, depending on how her body adapts and heals, and she will undergo a scar revision surgery to minimize scarring from the cranial vault distraction prior to starting kindergarten.

Bella's craniofacial surgeries are now at a lull, which we plan to enjoy thoroughly. In the meantime, Bella is being followed by the Janeway Rehab team in St. John's, and will commence with the Cerebral Palsy team in January. Due to Bella's initial traumas (a flat-line EEG, seizures etc), Bella has some issues to struggle through, all of which we consider to be fairly minor in contrast to our initial medical expectations. Her prognosis of surviving the removal of life support systems was once unlikely. A future with the ability to walk/talk/flourish was once the furthest thing from a possibility.

We retained hope for Bella, no matter what obstacles we faced. Looking into her eyes gave us hope, as the eyes staring back at us seemed to speak volumes. We chose to make her life as comfortable and enjoyable as humanly possible, no matter the challenges. We once said "If there's even the slightest chance that she can feel happiness, we have to try". And we did, and we were blessed in return with countless vibrant grins and a giggle that would melt the coldest heart.

We realize the bullets we've dodged, and we appreciate them numerous times every day. We cherish and marvel at every surpassed milestone. We celebrate her every day. We have been blessed endlessly.

I truly believe that the positivity that has surrounded us since her birth has helped on countless levels. The support we've received has been both humbling and breathtaking.

Should Bella require assistance due to Cerebral Palsy, we still consider ourselves lucky, as it's obvious any detriment won't inhibit her, she just might need to do some things a little bit differently. The point is, she'll still get it done. She'll see, feel, hear, and know life and love. And if you ask me, that's really all that matters.

*****

A couple of months ago, a team of supporters and family members sponsored a photo shoot for Bella and her family and created a fundraising calendar to help with the astronomical costs of her surgeries and frequent trips to Toronto's Sick Kids hospital. Although Bella is thriving and is a happy toddler, she will still require multiple craniofacial reconstruction surgeries in the years to come. 

Bella's Secret Garden calendar is available now, and has been selling fast! 
Please join Bella's Secret Garden Community on Facebook to find a list of locations where calendars are available.


NTV just recently did a story on Bella. You can watch the clip here -
http://ntv.ca/bellas-calendar-raises-money-for-future-surgeries/

And she was featured on Global News here -
http://globalnews.ca/news/1383020/sick-kids-doctors-treat-baby-with-rare-skull-condition/

Bella, you are a true inspiration. Lisa writes in the calendar, "Bella has consistently defied all odds. I pray that even one mother can retain hope after seeing Bella's journey."

Lisa, I am one mother you have touched, but I am only one of countless others. You have shown me that despite adversity, every day is an opportunity to celebrate life. You confirmed for me what I learned years ago - that no matter what our children look like or what they are able to do, they deserve to be valued and celebrated.

I hope you always know how valuable your abilities, your love, and your mere existence is.
You are a gift, sweet Bella. I am honoured to be on the receiving end.

-Julie

Love Local: Newfound Leggings

I have recently been asked to take my blog to a National level - to be part of a larger community and to feature stories from across the country. While I appreciate the offer, I had to graciously decline (though I do have another project in the works.. stay tuned for details on that!). I have to say that I truly value the fact that the stories I share on my blog and in my Tulip Tales series are based closed to home. There is so much culture here in Newfoundland and Labrador, and the people are so diverse. They are richly talented, highly insightful and genuinely warm, caring individuals. They have incredible stories to tell, and I am honoured to be a part of helping to share those stories.

I have, however, decided to open up my blog and to create a space in which to highlight some local talent!

For this first feature, I teamed up with Ashley at Newfound Leggings.  I love to support local artists and businesses, and I am especially happy to promote strong women and mothers who seek out opportunities to pave their own path and create their own successful business ventures.

Ashley Powell has done just that. In her day job, Ashley is an Aircraft Maintenance Engineer. No joke - she fixes airplanes! As the mother of two young boys, and doing shift work, Ashley quickly realized that she didn't have the time or even the need for a dressy wardrobe. She found that adding a cool pair of leggings to a casual outfit was a way to get dressed up quickly and easily!

Ashley and her sister sourced and selected the softest and most comfortable leggings to bring to the Newfoundland market. "I think Newfound Leggings is successful because of the quality of the product. I have a wide variety of styles and designs to choose from. You can be dressed up and still be comfortable, and at work you could always wear them under dresses or skirts! Newfound Leggings is a fun little business for me!", says Ashley.

Leggings are an accessory that can spice up any outfit. I usually tend to play it safe and stick to dark colours and a neutral palette, but adding a pair of brightly coloured leggings is a great way to make an outfit that might be a little “blah” come alive with an extra pop of colour!

I received four unique pairs of leggings that I mixed with pieces from my own closet. I am absolutely in love with this funky comic strip pattern!

This is a great Fall look. My favourite way to wear leggings is with boots and lots and lots of layers!

For this second look, I paired a simple black dress and jacket with a funky geometric print legging and my favourite flats. 

For daytime, TOMS are my number one shoe choice - they are so comfy and cute!

These leggings kept me surprisingly warm on this cold November day. They are super comfortable and appropriate for an everyday casual look.. and if you're not comfortable wearing a short skirt with bare legs, these leggings just might be your best friend!

I am so excited about this "Hammer Pant" style! Seriously, they are ridiculously comfortable. 

The look might not be for everybody, but I am a fan. U Can't Touch This.

Visit Newfound Leggings facebook page to view styles and patterns. Leggings are available in both Adult and Kids sizes!

https://www.facebook.com/Newfoundleggings

WEGO - Health Activist

I am so excited to announce that I have been nominated for a WEGO Health Activist Award!

WEGO Health Activist Awards celebrate leaders in online health communities. Health activists are influencers, organizers, connectors, leaders and contributors who are passionate about helping others lead healthier lives. 

WEGO Health is a different kind of social media company – our mission is to empower the top 10% of online health social media contributors to connect with each other and with healthcare companies. We call these passionate people Health Activists – they’re community leaders, bloggers, on Facebook, on Twitter, leading online forums, and usually “all of the above.” 

It is an honour to have been nominated this year for two separate categories -
Best in Show: Blog and Rookie of the Year!
  
The Best in Show: Blog Award is meant for those Health Activists whose passion is captured through their writing. They are constantly sharing new and fascinating health information, and their blog content is sought out by many to read.

The Rookie of the Year Award is for the Health Activist who has just recently (this year) began blogging, sharing, posting, or tweeting but who, in your opinion, is already the epitome of an advocate.
  
It is exciting just to have been nominated, but in order to become a finalist, I NEED YOUR HELP!

Please endorse my blog by visiting my nomination page and clicking the endorse button. An endorsement is a way to give nominees a visual show of support. The three nominees in each award category with the highest number of endorsements will automatically become finalists. Please share this link to help spread the word! https://awards.wegohealth.com/nominees/8191

I appreciate all of your support! Thank you!

-Julie

The Teal Pumpkin Project

We are ready for Halloween over here! We've visited the pumpkin patch at Lester's Farm. We've made our way through the corn maze, and we've selected the biggest, roundest pumpkin to call our own.

I love Halloween - the frenzy of festivities, planning parties, dressing up.. I'm all over it!  Brennen has had some awesome costumes over the years. Let's see if I can get all nine: a zebra, a frog prince, an astronaut, a ninja, a pirate, a silly monster, a mummy, a firefighter, and Superman!

We celebrate this holiday (as we do most holidays), a little differently than most families. I don't take Brennen trick-or-treating around our neighbourhood. We will dress up and visit some family and a few close friends, but the truth is that most houses are not accessible, having more than a few steps to the front door. It is just not possible for Brennen to get to the doors to knock for treats. Then, of course, is the fact that even if he got the treats, he wouldn't be able to enjoy them.

Kids with special needs can feel very left out on the holidays.

As a parent of a child with a disability, I have an underlying pain in my heart seeing other children Brennen's age so easily having fun. Events like these have a way of forcing you to see how different your own child is in comparison to everyone else, and how hard they have to fight to be included.

This year, we are trying something new! We have a beautifully painted teal pumpkin sitting on our front step! Not because it's a cool Pinterest fad - though if I had to choose a favourite colour, it would probably be this one. We are participating in the Teal Pumpkin Project!

Just this year, FARE (Food Allergies Research and Education) launched the Teal Pumpkin Project in hopes of starting a new Halloween tradition, and I absolutely love the idea!

"This Halloween, FARE is encouraging communities to start a new tradition that will help make this holiday season less scary for children with food allergies: the Teal Pumpkin Project. This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available."

Though the project was initially intended to benefit those with food allergies, I feel that it also applies to individuals and children dealing with intolerances, sensitivities and disorders that limit what they can consume. Children who may be tube-fed and do not eat by mouth, or who (like Brennen) do eat by mouth but don't chew well. Brennen does not eat candy or chips or any of the other common Halloween treats. He wouldn't know what to do with a lollipop and would probably choke on candy corn.

The organization suggests giving out inexpensive items such as glow sticks, bracelets, pencils, crayons, erasers, bubbles, stickers, bouncy balls, spider rings, etc.. all of which can be found in a Halloween theme at dollar stores. Actually, I found a whole bunch of cool things at Target! (I love Target!)

The goal is not to eliminate candy. I will have a selection of the usual Halloween treats available for children who want them (and some for myself!). The aim is to provide an option for non-food treats to ensure that ALL kids have a happy Halloween.

1 in 13 children are diagnosed with a food allergy. Chances are, in your child's classroom or in your neighbourhood there is more than one family dealing with food allergies or other special dietary restrictions. Please consider participating in the Teal Pumpkin Project! It is a wonderful opportunity to teach children about the importance of inclusion, disability awareness, and food safety. It is not a matter of changing the tradition, it is a matter of making activities like Halloween more inclusive for all children. 

Now, if we could do something about those stairs..

Have a Safe and Happy Halloween! 

 

 #TealPumpkinProject

Día de los Muertos

Halloween is right around the corner (which reminds me that I need to start decorating!). Day of the Dead is coming up as well. This two-day festival takes place every November 1st and 2nd, and though it falls close to Halloween, it is quite a different holiday with different customs and history.

If you are not familiar, Day of the Dead, or Día de los Muertos, is a Mexican holiday that celebrates the memory of those who have died. It is focused on gathering family and friends and honoring their deceased loved ones.

During the "Days of the Dead", some believe that the souls of the departed return to Earth to visit their families. It is not a somber time. In fact, it is just the opposite. It is a time when Mexicans happily and lovingly celebrate the memories of loved ones who are now gone. It is a time to remember not how the person died, but how they lived. Celebrating the Day of the Dead is a true celebration of life!

As part of these celebrations in Mexico, the streets are filled with flowers and candles, candy skeletons and sugar skulls, and altars are prepared with offerings of food and drink to the dearly departed.

I just adore the aesthetic of the Day of the Dead, and the hauntingly beautiful way in which the deceased are portrayed. Those of you who know me, know that I have a bit of an affinity for all things dark and macabre, creative and surreal.

A couple of years ago, I did a "Day of the Dead" photo shoot, with makeup inspired by the paintings of Sylvia Ji. The makeup application process was captured on camera and turned into a stop-motion video. Super cool. Click below to view!

The final images are here:

On the topic of Day of the Dead, I am excited to see The Book of Life - a 3D animated film directed by Jorge Gutierrez and produced by Guillermo del Toro. Having only seen the trailer, I am already in love with the gorgeous visuals and genuine charm of this movie. The Book of Life is to Día de los Muertos what 'The Nightmare Before Christmas' is to, well, Christmas (and Halloween). It is playing in theaters now!

Whether you celebrate the Day of the Dead, or Halloween, or Christmas, or Kwanzaa.. celebrate well. Celebrate LIFE!

Brachial Plexus Injury Awareness Week

The "special needs community" is a funny thing. Being part of it introduces you to things you never knew about, conditions you've never heard of, and people you wouldn't otherwise have the opportunity to meet. People you think you have nothing in common with, or who you think you might not be able to connect with, until you realize..

There is always something that connects us. 

Beyond the differences that we first see in each other, there are so many things that connect us as women, as mothers, and as individuals searching to find meaning in this life. We love and support and care like it's our job. Which really, it is. It is our job as parents to pull together every ounce of strength and to fight for our children like nothing else matters. Because really, nothing else matters.

My friend, Charmaine is one of the Moms I met early on at our parent support group, shortly after receiving Brennen's diagnosis. Charmaine is a mother to two amazing children - a son, Jordan, and a daughter, Karrie, who among other things like being an awesome teenager, just happens to have a brachial plexus injury.

Charmaine shares a little about the condition and her beautiful daughter, here.

***** 

This year, Brachial Plexus Injury Awareness Week is being celebrated during the week of October 19th - 25th.

Brachial plexus injuries affect the network of nerves that control the muscles of the shoulder, arm, elbow, wrist, hand and fingers. Brachial plexus injuries can result in full to partial paralysis of one or both arms, and they occur in 2-5 out of 1000 births. 

Information on this disability is not easily found. It is really important that treatment for a brachial plexus injury be sought quickly from qualified, experienced medical professionals who specialize in these types of injuries. While each injury is unique, some individuals may benefit from surgical intervention.

My daughter, Karrie had a difficult birth that resulted in a brachial plexus injury. Her injury is defined as Klumpke’s Palsy. There are five nerves in a complex set of nerves that originates in the back of the neck. Karrie had two of these nerves pulled completely out of the spinal cord (avulsed), one nerve was ruptured (torn), and the other two were intact. This injury has left her with significant paralysis in her left arm. When she was 5 months old, she had a thirteen-hour surgery at Sick Kids Hospital in Toronto. During this surgery, doctors removed nerves from both of her legs so that they could use them to connect the avulsed nerves to the intact nerves and repair the torn one. 

Today, Karrie is 15 years old. Her ‘special’ arm, as we call it, has significant limitations and serves as her helper arm. She constantly has to make adaptations for this in her life but she always figures out a way to do the things she wants to do. She is beautiful, friendly, caring, loving, independent, spirited, and strong willed. She rides horses, loves art, plays volleyball, and is on the student council at her high school. She can do killer one handed pushups, and can even paint her nails.  My daughter is so much more than her disability and she amazes me every day!

*****

Here is a video of Karrie doing something that every one of us probably does every day without even thinking about it. Doing up the button on your jeans might seem easy with two hands.. but try it with one! No, I'm serious. Try it. Then show this girl some love!

Thank you, Charmaine. And thank you, Karrie, for showing us that living with a disability does not have to be a tragedy. That a disability does not have to define you or put limits on your dreams. It is a pleasure to watch you grow and thrive and live your big, beautiful, joy-filled life!

Charmaine, you are a great Mom. I'm sure you know that, but I just wanted to tell you again. :)