Tuesday, October 28, 2014

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! 


Tuesday, October 21, 2014

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!

Thursday, October 16, 2014

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. :)

Friday, October 10, 2014

Happiness is Homemade

I just love this time of year! Fall is in the air. The 'pumpkin' sensation has once again taken over, and the locals are selling their souls for pumpkin-spiced anything. I am a part of the madness, and I'm not ashamed to admit it.

As if right on cue, I connected with Angela and Kate - two talented ladies with a knack for baking and a desire to give back to their community. They started their business - 'Happiness is Homemade', in April of 2013 as a home-based baking venture.

Angela Fowler and Kate Johnston have always shared a love of baking, and they decided to share that love with everyone else! These girls are the real deal. All of their treats are made from scratch, so there is no skimping on butter and sugar!

Along with taking orders year-round, they also hold monthly sales and fundraisers, with proceeds from each sale being donated to various local charities. To date, they have donated over $1200 to worthy organizations in our community, including Heavenly Creatures, NLMA, the LSPU Hall, School Lunch Program, Greyhound Pets of Atlantic Canada - NL branch, and in November of 2013 they raised money to help a lovely dog named Mountain get the treatment he deserved.

2014 has been a busy year for the duo so far! They have had a number of very successful sales, which benefited causes like Bridges to Hope, A Place to Bark, the Janeway Children's Hospital Foundation, and special little girl named Callie.

"It is so rewarding to give back to the community! We love what we do, and knowing that we are helping a community of deserving people and animals makes all of the hard work very satisfying.", says Kate.

I am very excited to say that this month, 50% of proceeds from their October Sale will go to the Cerebral Palsy Association of Newfoundland and Labrador!

Angela and Kate have concocted a wonderful variety of Fall-themed treats, including Pumpkin and Apple Crisp Muffins, Starbucks Pumpkin Scones, Mini Banana Bread, Mini Pumpkin Pies, Maple Scones, and Pumpkin Whoopie Pies!

Seriously, what could make an Autumn day more perfect than a cup of tea and a maple scone? Nothing, I tell you! So go ahead! Order some treats, cozy up with your loved ones and enjoy all that this glorious season has to offer.

To order, visit their Facebook page here - Happiness is Homemade 
or email happinessishomemadebakery@gmail.com

Happy Thanksgiving Weekend!!

Friday, October 3, 2014

Happy Birthday, Graysen!!!

Several months ago, I shared the story of Graysen Power - the sweetest little boy who captured my heart from the instant I met him. His mother, Alice, has an incredible amount of strength and hope, and her faith is strong. She has been an inspiration to me and countless other parents of children with complex medical needs.

Graysen is diagnosed with Cornelia de Lange Syndrome, and he struggles with respiratory issues and Chronic Lung Disease. He has had a difficult road in his short life, but he has shown everyone around him what a true super-hero he is.

This past August, Graysen gave his family a bit of a scare. Alice describes their ordeal here :

Life has been an absolute roller coaster the past few years, but no ride can compare to the one we have been on lately. We were preparing to take 'Super G' home from the hospital, when all of a sudden on Tuesday, August 12th, Graysen got into some trouble. As the days went on, his situation became more and more severe. He looked to be comfortable but his blood-work and x-rays told us otherwise. Graysen was on life support and the amount of ventilation he needed was so high that we were warned that two things could happen - Graysen's heart could stop or his lungs could potentially burst. So, we had a decision to make. If either of these things happened, what were we to do? Do we bring him back, or do we let him go? At first, I screamed out that whatever we were faced with, I wanted everything done to try to bring him back. When I realized what I had said and understood what pain and suffering were involved, I was no longer so sure. I thought that my answer was that of a selfish mother who just couldn't picture her life without her baby boy. In reality, what is the right answer? The truth is that there is none. 

We sat at Graysen's bedside and watched and waited to see what the outcome would be. In all honesty, it was like watching a bomb ticking, just hoping it wouldn't go off. He became so full of fluid, he was almost unrecognizable. I was afraid to leave but I was afraid to stay. Finally, I bent down and whispered in his ear, "If you want to stay, Mommy would love that so much but if you can't baby, Mommy will be okay. You do what you've gotta do." I went home that night simply because I hadn't seen my girls in what seemed like months. I had to try to make things as normal for them as possible. I played over in my mind how in the hell I was going to explain to them that Graysen was not coming home. How do you even begin that conversation?! I wasn't prepared to have that conversation, not tonight, not ever. I wanted to wake up, to never dream this nightmare again. But I knew that wasn't going to happen. I couldn't sleep, afraid to sleep because I knew I had to wake up and face this all over again. The next few days were touchy but things were stabilizing. The doctors were a little more confident that we could get him through this ordeal. He started to wake up and although he was uncomfortable, his numbers were good, his x-rays were looking better, and he was AWAKE! The breathing tube was taken out and he looked to be strong enough to do it on his own. He lasted twelve hours until his left lung began to collapse again. Graysen was put back on a bi pap machine, and we still have not gotten to the cause of his breathing difficulties.

I asked if we could get some other opinions from some other hospitals. Graysen's information has been sent now to another center in Canada, with another in mind as well. If nothing comes of it, that's as far as the Janeway can go, as MCP will not cover any out-of-country visits, but that's not to say that I won't do it! I can't believe for one second that in this great big world, there's not someone out there who can help us. I will not stop until I find an answer because if I don't do everything in my power, I will know that I've failed. 

If anyone has any suggestions on other hospitals that deal with chronic lung disease, ANYWHERE, please let me know as soon as possible. For now, we wait and see.


Today, Graysen is celebrating his second birthday! He has been stable and doing well these past few weeks, and his family are thrilled to be able to celebrate this special day in the "Party Room" of the Janeway hospital. I spoke with Alice earlier today, and she was is great spirits! She posted an update this afternoon, which she permitted me to share as well. Alice, you are remarkable. I admire your strength. Enjoy this day with your beautiful two-year-old boy!!


The past two years have been a lot of things. Emotional pretty much tops the list. Terrifying is up there too, but they've also been extremely inspirational!! Graysen has taught us all the true meaning of love, patience, and acceptance. He has driven me to be not just a better mom, but a better person overall. Life has been topsy-turvy, upside down and back again but I wouldn't change a single thing. My life wouldn't be complete not being this way. I've met some amazing friends along the way and wouldn't have done so otherwise. I am grateful for all of you, you all know who you are!!!! We have grown together so much as a family. We realize now that there is so much more to life, and everything, and I mean EVERYTHING is a blessing!!!! Although sometimes it may be in disguise, it is always there. 
About six weeks ago when Graysen got really sick, a conversation took place. We were talking about where things were going and what the plan was. There was question if Graysen would even pull through. I knew he would, he just had to. Over the following few weeks there were more meetings and conversations. I have to ask you all now, has anyone ever been accused of having too much faith? I was.

I was reminded that Graysen sits on the extremely severe side of CdLS. I was told that children like Graysen, with severe health issues, don't have a very long life expectancy. When the meeting was over I cried in the washroom for over an hour. Then all of a sudden it hit me. "This is foolish". I went back to the unit, sat down, picked up my great big boy and like in my favorite book by Robert Munsch, I slowly rocked him back and forth, back and forth, and while I rocked him I sang "I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be". 

The next day I woke up and I felt on top of the world. I know this may sound completely and utterly crazy, but I was on a mission. People asked how I was coping with the new news? I said I was just fine. I was reminded of the conversation that had taken place and asked again how I felt. Again I said I was fine. I think people were beginning to worry about me. This is when the mention of having too much faith came to be. I was told that it might be for the best if I step back and really see the situation as it is. Graysen is not going to live a long happy life. There will come a time when nothing will save him. Let me just say one thing - I'm not an idiot!!! I am well aware that things are not ideal. I realize that the way things are, Graysen will never outlive his Mommy....but I'll tell you what I am....I'm a Mommy who loves her son so very much that I would rather embrace what I have as opposed to sit and wait for..........

So here we are today, The Big 2!!!!!! I thank God with every ounce of my being for sending me my son! He has made our lives complete. He has touched so many people's lives and pulled on a few heartstrings along the way. But the fact of the matter is, he's HERE!!! So as I finish this post and you go on about your day, please don't be sad for us. Please don't send any pity our way. You should actually envy us. We are a family that is held together by the bond that Graysen has created. So all I really have left to say is, don't cry for us Argentina, WE GOT THIS!!!!

Much love friends, and God bless xoxoxoxoxoxoxo

-Alice Power 

 Happy Birthday, Graysen!
The happiness and joy you bring to your family and to those who know you is a precious gift. You are the image of strength and determination, and you are a true fighter in every sense of the word. Graysen, I wish you many more happy birthdays!