Saturday, May 31, 2014

We strolled and we rolled..

Today our family participated in the 'Stroll and Roll', a fundraiser for Easter Seals.

We had a fabulous time strolling and rolling with our friends, all in aid of such a great cause. We exceeded our goal, and Brennen was the second highest fundraiser, so I want to say a huge THANK YOU to all of our supporters!!

Because of events like this one, and donations from people like you, Easter Seals is able to continue to offer some wonderful programs and opportunities for children and youth with physical disabilities.

We have participated in the Stroll and Roll for the past three years, and I look forward to it every year. It is a day where we come together as a large group with a common goal - to make friends, to have fun, and to show our support for Easter Seals. Nobody notices disabilities. Nobody focuses on who is in a wheelchair and who is not. Instead everyone joins together in celebrating our children for exactly who we know them to be - children full of potential.

Thank you again to everyone who supported Brennen's Team and all of the other participants who took part in today's event. 
I am proud to be a part of something so meaningful.

Looking forward, tomorrow is June, and I'm hoping that means warmer temperatures. 
Bring the sunshine! Happy weekend!!

Sunday, May 25, 2014

Tulip Tales: Maggie

For those of you who have been following my Tulip Tales series, you know that these are all very emotional stories. Reading about the struggles of such tiny children - children who should never have to face such challenges so early in life - is not an easy thing for any of us. I am always very moved by these stories, by the strength that is shown in the children and the love that consumes each family. That being said, I have to warn you that this Tulip Tale is a particularly difficult one to take in.

I asked Katie to share only as much as she was comfortable with, and she felt that it was important to tell her daughter's story from the beginning, "to show how strong and miraculous she really is."

Here is Maggie's story.


On December 11th, 2012, I gave birth to my sweet little Maggie. Right from the start, she was calm and content and she was a great sleeper. I felt so lucky and so happy to be a Mom! The first three months of her life were quite typical - lots of smiles, tummy time, batting at toys and following me with her eyes everywhere I went.

Then one night, a typical night like so many we'd had before, her Dad came home from work and put her to bed while I had supper and a shower. I heard Maggie wake up in the middle of the night, which was unusual. When I got to her, I knew right away that something was wrong. I called 9-1-1 and an ambulance came and took us to the ER.

Before I knew it, we were being sent by air ambulance to the major children’s hospital in Vancouver (Maggie was born in BC). They ordered x-rays, CT scans, MRIs, and other tests. Maggie was seizing uncontrollably and had lost consciousness. As they worked on her, I was whisked away by police and doctors. I wasn’t sure why the police were there. I was so confused and terrified that something was seriously wrong with Maggie.

Maggie had multiple skull fractures, rib fractures, and a broken foot and clavicle. Her brain was bleeding and she ended up having two strokes. She was admitted under “non-accidental injury" and "traumatic brain injury”

Maggie’s father - my now ex-husband - had nearly beaten Maggie to death in her bedroom while I was in the shower.

He is awaiting sentencing in BC for aggravated assault and assault causing bodily harm.

There isn’t enough time or space to even begin to try to explain how I felt. The horror, the shock, the fear, the anger.. it is beyond comprehension. I decided instantly that I was now a single mother and all I could do was think of Maggie.

The bleeding and pressure on her brain did subside, and surgery was not required. A PICC line was inserted to handle of all the medication she was getting, as well as an NG tube. We were told she may spend three or four weeks in PICU before we would head up to neurology.

Maggie was safe now. Safe from a horrible threat that I didn’t even know existed.

After only six days, we moved up to neurology. The nurses called her 'Miracle Maggie', because she was so strong. They gradually weaned her from the medication that was keeping her sedated, and she started to become alert and awake. The NG tube was taken out. Again, we were told it would be weeks on neurology. We were there just six days.

The staff was so impressed with how determined and how strong Maggie was. She started bottle feeding and moving her arms and legs, but it was obvious that Maggie’s vision had not returned. The strokes she had suffered were in her occipital lobe, and so we were unsure if she would ever regain her vision.

As she recovered in  hospital, and then in a hotel with my mother and I, I was granted full custody of Maggie and all of my husband’s parental ties were severed. He was not allowed to come within 25 feet of Maggie or me.

At six months old, Maggie was still non-visual, and still having seizures. We packed up and moved back home to Newfoundland, where I am from and where all of my family is. We quickly became well accustomed with the Janeway staff, the neurology department, the CNIB, and many other services. It was unclear how much damage was done to her brain and what the long term outcome would be.

Maggie truly is a miracle. Every day I am so grateful that she pulled through this horrendous attack - something that no one, especially a child, should ever endure. All the while, she remained the happy content little girl she always was. I didn’t know what was to come, but I knew the reality of the brain damage meant developmental delays and vision loss. All I knew was that whatever came to be, I could deal with it because Maggie was alive and well.

I struggled for a long time with the fact that this was all just so unfair. It was unfair that she was going to have so many physical struggles and health problems because of what he did to her. It gets a little bit easier every day, and I have slowly accepted that this wasn’t the path her life was supposed to take, in the sense that she was born healthy. It is never fair for a child to struggle, born with the issues or not, so I couldn’t let that fact keep me down. This was our life now, and we had to live it, happy and together, us girls.

Maggie is now 17 months old. She has been diagnosed with cerebral palsy, cortical visual impairment, epilepsy and developmental delay. She goes to physiotherapy, occupational therapy, speech therapy and music and swim therapy weekly. She is non-stop, crawling, climbing, laughing, playing and happy! It took months of work for her to gain the milestones that she has, but that is ok. We have our own milestone timeline now, as many parents of children with special needs may relate to!

Maggie rolled over at 7 months, started getting up on all fours at 9 months, crawling at 1 year, and now she doesn’t stop. She cannot walk or stand unassisted, but uses a walker at physio and eventually will at home. She will be getting botox injections in the fall and hopefully that will help with the spasticity in her legs. She is babbling now, and is starting to take turns making sounds with me. She claps her hands in delight and gives kisses, sometimes without being asked! That is my favorite, of course!

Cognitively, Maggie is at about a nine month level, gross motor at about twelve months. We are so proud of Maggie and all that she has achieved. She hasn’t had a seizure in almost a year, and her EEGs are getting better and better. We used to see neurology every month or two and now it is 4-6 months between visits… that's a huge jump for us!

Maggie is very social and interactive, and her vision is really improving, which is surprising. We never expected it to improve so fast. She truly, truly is a miracle. I am so lucky to be her Mom, and to have such a strong happy girl as my baby. She is developing such a sweet personality, and I am so grateful. Every time I get overwhelmed with appointments or whatever, I just think back to the PICU, to the fact that she may not have survived, and I remain grateful that she did. Any hurdle will be met with pride and happiness - pride and happiness that she is here and alive and well.

I did not think that I would be a single mother of a child with special needs, but such is life - the life that we share now together. It is with great pride that I write her story, pride in the strength and love I see in her every day.

Our life is not what I imagined, but I wouldn’t change a thing about my little darling girl. She has overcome so much and she continues to amaze me every day. I learn so much from her, and I cannot wait to see what her future will hold.  Though it may be a different future than we'd expected, it will be one full of joy and happiness!


Katie, I don't even know what to say. Thank you for sharing Maggie's story. I believe the nurses were right to call her "Miracle Maggie". What an amazing little girl! And you are one strong Momma! Not many families could rise so beautifully out of the ashes of such a horrific tragedy. You and your sweet girl have come a long way. She is a fighter and she is lucky to have you in her corner. I am so happy to have met you both, and I hope for a very bright future for "Maggie Moo"!

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


Wednesday, May 21, 2014

CP in Motion

As mentioned in my previous post, I recently attended the CP in Motion Conference and Workshop entitled Let's Talk CP 2014: Translating Science into Family Life at the IWK Health Centre in Halifax, NS.

This was the fourth annual conference for the NeuroDevNet CP Discovery Project. The Discovery Project is a national project to understand the genetic and environmental causes of cerebral palsy, as well as the best methods to improve outcome through prevention, regeneration and rehabilitation.

The conference brought together nationally and internationally recognized experts from across Canada. The focus was on an up-to-date exploration of current research into the causes of cerebral palsy, advances in therapy, and future implications for prevention and treatment.

The conference was intended for anyone involved in the care of children and young adults with cerebral palsy, including health professionals (physiotherapists, occupational therapists, speech / augmentative communication therapists, recreation therapists, social workers, nurses, developmental pediatricians, neurologists, general pediatricians, physiatrists) and especially families of children and young adults with cerebral palsy.

The conference took place on May 15th and 16th, and was comprised of presentations by a number of healthcare professionals, researchers and scientists. Full program details can be seen HERE.

Attending this conference was an incredible experience. I don't think I really knew what to expect going in, only that I was happy to represent our provincial CP Association, and be present among such a distinguished group of individuals. 

A highlight for me was the session on stem cell research. Dr. Crystal Ruff outlined the current status of stem cell treatments for cerebral palsy, and described the clinical trials that are currently taking place. I have to say, she lost me when she spoke about "pluripotent cells" and "oligodendrocytes", but what I did take away was the fact that exciting things are happening in the world of stem cell research!

Experiments with neural stem cells in animal models have shown to be promising. For example, human stem cells were able to replace the myelin in brains of mice that had suffered blood and oxygen deprivation, normalizing motor function and extending their life span.  

There is, however, a great difference in what can be done with a mouse in a lab, and what should be done to a human being. Stem cell treatments are not yet readily available. Clinical trials must first and foremost prove that a treatment is safe. It is absolutely essential. It is also possible that treatments that work perfectly in mice may show no benefit when used in people. It is still a long ways away, but eventually, the hope is that stem cell treatments will be able to be used as part of a larger treatment program, and will be combined with various other treatments to provide the best outcome. We would be looking at improvements, rather than a "cure". Still.. very exciting for individuals living with cerebral palsy!

Also of note was Dr. Darcy Fehlings' presentation on Constraint Induced Movement Therapy (CIMT). This type of therapy has proven to be extremely effective in individuals with hemiplegia (impairment of one side of the body). CIMT involves physical constraint of the less affected arm to increase the use of the more involved or affected arm. All studies to date have shown positive change in arm and/or hand function in children with asymmetric upper extremity motor control.

What I really liked and appreciated about this conference was that it was true to it's name - "Translating Science into Family Life". What does all of this science and research mean for families who are living with cerebral palsy? Dr. Peter Rosenbaum brought it home for me when he presented his ideas on "The F-words in Childhood Disability". His approach is that there is too much emphasis placed on "fixing" things, when instead we should promote development, child and family strengths, achievement, and being family-centred. The 'F-words' that he speaks of, which are so important in child health, are function, family, fitness, fun, friends and future! His hope is that these concepts will be incorporated into every aspect of clinical service, research, and advocacy regarding disabled children and their families. I like you, Dr. Rosenbaum. I like you a lot.

There was an open discussion around the question, "Does / should disability define identity?" Several participants shared their thoughts, including our own Dr. David Buckley. I think that while most of us believe that a disability shouldn't define a person, in many cases, it probably (and unfortunately) does. Just as someone's ability shouldn't define them, no one should be defined by just one aspect of themselves. We are all individuals, with different needs and wants and thoughts and abilities. Putting 'dis-' in front of the word makes it seem negative, when it should not be seen that way.

Overall, this conference was informative, it was thought-provoking, it was emotional, and it was relevant. It brought doctors and researchers together with family members and individuals living with cerebral palsy. It put a face behind the research, on both sides.

I am better for having been there, and I am looking forward to weaving all that I learned last week into new experiences right here at home.

Halifax, you were lovely!

Sunday, May 18, 2014

CP Canada Network Workshop

I've just returned home from an incredible few days in Halifax, where I attended the Let's Talk CP 2014: Translating Science into Family Life Conference, which was held at the IWK Health Centre.

In addition to this conference, I was invited to attend the CP Canada Network Workshop, which was co-funded by NeuroDevNet and the Provincial CP Associations. The CP Canada Network workshop is the annual meeting of provincial CP Association representatives and researchers from the Cerebral Palsy Discovery Program of NeuroDevNet. This Canadian partnership aims to promote collaborations and initiatives that will enhance the health and well-being of individuals with CP and their families.

I can't tell you how awesome it felt to be included among such a powerful group. It was a great opportunity to network with other provincial representatives, as well as experts in diverse research and clinical areas.

Darcy Fehlings, MD is Head of the Division of Developmental Pediatrics, and Associate Professor in the Department of Pediatrics at the University of Toronto. Her current clinical position is Physician Director of the Child Development Program at Holland Bloorview Kids Rehabilitation Hospital.  Dr. Fehlings is a Senior Scientist in the Bloorview Research Institute. The focus of her research is on the innovation and evaluation of interventions for children with cerebral palsy.

Dr. Fehlings spoke about current research of the Cerebral Palsy Discovery Program. NeuroDevNet's CP researchers are working to identify genetic and environmental risk factors for cerebral palsy through basic research and the creation of a trans-Canadian CP registry. Their team is also developing animal models of CP that mimic the human condition, in order to increase understanding of the underlying causes of the disorder, as well as brain-protective strategies, and treatments for CP.

Dr. Fehlings is incredibly passionate about her work, and her excitement shows as she speaks about the advances in innovation and the possibilities that exist for individuals with CP.

Also present at our meeting was Dr. Michael Shevell, Chair of the Department of Pediatrics at the McGill Faculty of Medicine and Pediatrician-in-Chief at the Montreal Children's Hospital.  Dr. Shevell has an active clinical research program focusing on issues related to neonatal neurology and children with or at risk for neurodevelopmental disorders, in particular cerebral palsy and global developmental delay.  

Dr. Ellen Wood is a pediatric neurologist at the IWK Health Centre and Professor of Pediatrics at Dalhousie University.  Her main clinical and research interest is in developmental disabilities, particularly cerebral palsy. She is the neurologist with the Multidisciplinary Cerebral Palsy Clinic Team.

Annette Majnemer, OT, PhD is Director at the School of Physical and Occupational Therapy and Associate Dean in the Faculty of Medicine at McGill University. Her research interests focus primarily on the child, family and environmental factors that influence activity limitations and participation restrictions in children and youth with developmental disabilities.

We had representatives from CP Associations in Alberta, New Brunswick, Ontario, Manitoba and Newfoundland. It was amazing to be able to participate in a roundtable discussion and active dialogue between researchers, health professionals, and family members (parents and advocates), with the same goal - to create awareness, and promote initiatives to enhance the lives of those living with CP.  We talked about World CP Day, Steptember, and the CP Canada Network. I will have more to say about each of those in later updates.

I have some work to do to wrap my head around all of the information that was shared over these past few days. Stay tuned for an update about the CP in Motion Conference!

Saturday, May 10, 2014

Happy Mother's Day!

As Mother's Day approaches, I find myself thinking more and more about what it means to be a Mom to a child with special needs.

Over the years, I have connected with so many amazing mothers of children with various disabilities or developmental delays. Mothers who do everything every other Mom does, plus a whole lot more. If these Moms weren't strong before they had their special child, they have since developed a strength unlike any other. These Moms have become overnight experts on their child's condition, and have spent countless hours researching therapies and treatments, medications and procedures. They juggle complicated schedules, challenging behaviours, special diets and alternate education plans. They manage to make dinner, fold laundry, tidy the house and pay the bills, all while meeting every need of their child - a child who is demanding and who needs her for every single minute of every single day. These mothers are doing more than just coping. They are succeeding. They are flourishing, and they are inspiring. 

It is hard work, raising a child who has extra challenges, but it brings with it enormous rewards. 

Being a mother is the greatest joy of my life. It is hard, it is exhausting, it pushes me to my limits and pulls at my emotions. It is a constant, beautiful journey. Motherhood has made me feel the happiest, cry the hardest, and love the strongest.

Brennen.. thank you for making me a Mom. 
This Mother's Day, I don't need a celebration, or roses, or jewelry, or presents. You are my greatest gift. 

Happy Mother's Day to all of the Mommas in my life. 
Happy first Mother's Day to my sister, who is loving every minute with her sweet baby girl.

Happy Mother's Day to my own Mom - I love you!

To Andrew's Mom -  I am so thankful to have you as a second Mom!  We love you!

To my late Grandmothers - I am glad to have known you, to have been loved by you, and to have learned so much from you. 
My Mom's Mom always said that Brennen would "get better".  You were right, Nan.. he's perfect!! 

To all of the amazing Mothers on their own journey of raising a child with special needs -  We got this!

Happy Mother’s Day to anyone who has ever loved a child. 

Sunday, May 4, 2014

A New Chapter

I have some news that I am very excited to share!

*Drum-roll please!*

I am now the Executive Director of the Cerebral Palsy Association of Newfoundland and Labrador!

I am so completely humbled and honored to have been chosen to serve such an important role within the Association.

I am up for the challenge and will do everything in my power to advocate for the people in our province living with cerebral palsy. I want to make a difference in the lives of these individuals and their families, and I will do so by ensuring that the mission of the CPANL is fulfilled.

I value all that the CP Association does to raise awareness and funds, and we are going to be stepping it up a notch to increase our presence within the community.

We will be launching a new website very soon, and we have several events planned for the coming months. Stay tuned for updates on all of that!

As much as I am excited about the potential that exists within this new role, I am equally excited to work with so many other families to create the culture that we dream of - one that celebrates differences.  My heart is twisting in so many beautiful ways just thinking about all that we can do, all that we can accomplish, if we work together.

In a couple of weeks, I will be attending the CP in Motion Conference and Workshop at the IWK Health Centre in Halifax, NS.  I am looking forward to two full days of information sharing and connecting with others who care for individuals with CP, whether they be family members or health care professionals.

I am interested on a personal level to learn about recent advances in enhancing the quality of life for children with cerebral palsy and developmental disabilities. I am also excited to connect with other professionals and organizations to see what information I can bring back to our province.

I am so proud to be able to represent the CP Association of Newfoundland and Labrador and to advance their mission to create a life without limits for people with cerebral palsy!

Finally, no blog post is complete without a photo, so here is one of my favorites of my sweet boy. Brennen, this is all for you. All of my strength, determination, love and light comes from you, and for that I thank you. xo