Maple Syrup Festival

On Sunday, Andrew and I went to the Pippy Park Maple Syrup Festival!
This was the 3rd year for the festival, but our first time attending.. and we had a ball!

Making your own maple syrup has become a hot hobby here in Newfoundland over the past few years, but it was all new to us. You would think we would be more familiar with the process, as Canada produces about 85 per cent of the world's maple syrup, but I had never actually seen it happen in real life until this weekend!

Prime maple-tapping season is late winter / early spring, when the nights are still cold but the daytime temperatures are above freezing. (It still seems pretty freezing to me, but they have been able to collect over 1,000 litres of sap so far this season in Pippy Park!)

Friends of Pippy Park upped their game this year, offering maple tapping tutorials in the park, and developing a new Community Maple Grove! They had demonstrations of how to insert the spile (tap), and we were able to taste the fresh sap that came out of the tree. It's amazing that it is so clear, like water, and with very little taste. They were cooking the sap down to syrup over a fire outside, and it was sweet and oh so delicious!

Here are some photos from our time at the Maple Syrup Festival!

We met the Mobile Goats - Maple (the Mom), and her three babies, Percy, Summer and Honey.
Oh my heart. I am working on Andrew to let me have a goat.

Andrew and I took a walk around the park to see the maples in action, with buckets hanging and sap dripping. It was pretty awesome, I have to say. This winter feels like it's been dragging on forever, but finding new ways to enjoy it helps immensely. We gave our mental health a good boost this weekend, and getting out to appreciate the beauty of nature played a big part in that. I love the exaggerated sound of snow crunching under our boots, and as we slid on slippery spots and sank down in deeper places, I wished I had thought to bring our snowshoes. These trails are perfect for winter activities!

We discovered that Newfoundland has a growing community of DIY maple-makers, and we want to be a part of it! The two little maple trees on our front lawn are far too small to be tapped, but I think my parents might have some good ones on their property. I am going to find out!

Maple tapping spiles are available at the Pippy Park Headquarters, while supplies last. Purchases and donations support the initiatives of the Friends of Pippy Park, including this annual festival, and their family community garden.

I hope you are all enjoying "Spring". Whatever it looks like where you are, there are so many ways to appreciate it!

The Janeway: An Impossible Dream Hospital

On March 30th, I had the distinct pleasure of attending a lecture by Dr. Rick Cooper titled, “The Janeway Child and Rehabilitation Centre – An Impossible Dream Hospital". The lecture took place at Hampton Hall in the Marine Institute, and was part of a series of talks presented by the Newfoundland Historical Society.

"In August 1966, the Charles A. Janeway Child Health Centre opened and became a referral centre for all sick children in the province and became an affiliated hospital of Memorial University of Newfoundland Medical School. Before Confederation, child health care in Newfoundland and Labrador was below standards when compared to other Canadian provinces. After Confederation some improvements were made particularly in public health but Dr. Cliff Joy, a pediatrician in 1958 felt that the hospital treatment of children was below standard and the province lacked a central referral centre for sick children. He advocated for a central free standing Child Health Centre in the Province. In 1960 the Americans closed Pepperrell and made the base hospital available to the Province. The Newfoundland Medical Association, the Premier, the March of Dimes and the Rehabilitation Community wanted the Pepperrell hospital to be a Rehabilitation Centre. Dr. Joy persisted and because of several events and the support of several prominent Canadian and American pediatricians was able to persuade Mr. Smallwood to make the Pepperrell Hospital a Child Health Centre. In his lecture, Dr. Rick Cooper will trace this story of the Janeway hospital, and the development of child health care in Newfoundland."

Dr. Cooper has been a practicing pediatrician at the Janeway for the past 43 years, providing quality pediatric care to the children of Newfoundland and Labrador since 1974. He has conducted extensive research on the development of child health care in Newfoundland, and has a forthcoming publication on the history of the Janeway Children’s Health and Rehabilitation Centre.

The Janeway recently celebrated it's 50th birthday (which I wrote about HERE). My family is all too familiar with the current Janeway hospital, and I remember visiting the previous Janeway site when I was young, but I was not aware of the challenges that were initially involved with establishing a dedicated children's hospital here in our province. Dr. Cooper's presentation was fascinating, and his personal connection - not just to the building, but to the people - were what made it so engaging. This man has stories, and I could listen to them for days.

My family is fortunate to have had Dr. Cooper play such a pivotal role in our own story. My son, Brennen was born in California in 2005. Soon after his birth, it became clear to me that something was not quite right, but the doctors there dismissed my concerns and sent me away, saying that my baby was "fine" and telling me not to worry. I continued to seek help in California, but was getting nowhere, so after several difficult months, I returned home to Newfoundland to be with my family. Within a couple of days, we got an appointment with Dr. Cooper, and as soon as he saw Brennen he knew there was something wrong. He acknowledged my concerns and ordered a battery of tests, and for the first time since my baby was born, I felt like someone finally cared enough to try and help us. 

Turns out, Brennen was not fine. He was diagnosed with Spastic Quadriplegic Cerebral Palsy, Seizure Disorder, Global Developmental Delay and Cortical Visual Impairment. Dr. Cooper didn't mince words when he told me that his condition was very serious, and that my child was going to have a difficult life. My heart was broken, but I appreciated his honesty and his gentle, caring nature. I will never, ever forget those early days. They were some of the hardest of my life, but I have to thank Dr. Cooper. Understanding what was going on with my child was the first step to accepting our situation and coming to terms with all that lay ahead for us. I often wonder how things would be today if I hadn't returned home to Newfoundland. How many times would I have been dismissed and turned away? How long would my child have gone undiagnosed and not have received any therapeutic services? How much longer could I have survived the anguish of not knowing what was wrong with my baby?  

Dr. Cooper is a strong and respected leader in the child health care field, and we are so happy to have him on our side.

Dr. Cooper's talk also reaffirmed for me the importance of sharing our stories. His upcoming book contains the accounts of several individuals - patients, nurses and physicians, who share their personal experiences with the Janeway. He says, "It's really important that we tell our stories. Let's face it, the history of surgery is probably a bit boring, but someone's experience at the Janeway is not."

This is exactly how I feel about sharing our own experiences, and I will continue to write about our journey in hopes that it might positively impact someone else, or might inspire hope and encouragement in a parent who is struggling. Sharing the stories of other children and families in my Tulip Tales series has been an absolute honour, and I look forward to sharing more with you in the future. (If you would like to be featured, please send me a message!) 

We all have a story to tell, and I am using this space to try to change the way the world sees anyone who is different, to accept differences in others, and to accept our own differences that can make us feel inadequate. So please keep reading, and keep an eye out for Dr. Cooper's book, which will be released later this year by Boulder Publications! 

Rare Disease Day 2017

February 28th, 2017 marked the 10th annual Rare Disease Day!

"With research, possibilities are limitless".

The theme this year is "Research". Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure, or improved care.  It is also imperative that researchers work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research.

Imagine what it would be like to live without answers to the most basic of questions. This is the reality for many rare disease patients. Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments.. and in some cases a cure. People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year's video draws a parallel with a routine that many of us go through multiple times a day - searching for answers on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'Your search had no results'.

The goal of Rare Disease Day is to connect patients, families, caregivers, and patient organizations; to provide opportunities for patients and parents to share their stories; and to promote education, awareness, and advocacy. We were a little late celebrating Rare Disease Day here in Newfoundland, but we had a gathering this past Thursday to raise awareness of the day and to acknowledge the experiences of rare disease patients and their families right here in our province.

Sarah Predham, a Genetic Counsellor with the Provincial Medical Genetics Program of Eastern Health, presented "Genetics and Rare Disease: An Evolutionary Tale".

Simon Lono is a health care and rare disease advocate. He spoke about his experience as a patient living with a rare diagnosis, and his struggles within the health care system.

Leah Farrell is a parent of a child with a rare diagnosis, and a dear friend of mine. (I shared Leah's son's story HERE). Leah spoke about creating community and making connections with other families living with a rare diagnosis.

To close the evening, we were treated to a fabulous performance by the Perlin Players - a division of the Vera Perlin Society, whose mission is to secure and/or provide quality service and support for individuals with a developmental disability and their families in the St. John's and surrounding area, enabling them to participate in all areas of community living.

The Perlin Players are an extraordinary group of individuals who are well-known for their many successful lip-sync productions and dinner theatre shows. This was my first time seeing the group perform, and I was blown away! If you have the opportunity to take in a show, I would absolutely recommend it! These guys (and lovely lady!) did not disappoint!

A disease is considered to be rare when it affects less than 1 in 2,000 people. Due to the low prevalence of each disease, finding somebody else with the same condition can be a challenge. If you are affected by a rare disease, you may be the only person in your local community or the only person your doctor has ever seen with that condition. This can feel incredibly isolating, but it is important to remember that you are not alone! Social media networks have become a vital communication tool for patients and their families, allowing them to connect with others living with a similar diagnosis, and to meaningfully support one another. Rare Disease Day and events like this one allow the greater community to come together and show our support for those living with a rare disease, to learn about various rare conditions, and to create awareness and advocacy around the more than 7,000 rare diseases and disorders worldwide.

For more information on the Rare Disease Day campaign, visit http://www.rarediseaseday.org/

unstoppABLE

Easter Seals Canada has launched a new fundraising and awareness campaign called "Unstoppable", and it couldn't come at a better time for us. After all that Brennen has been through with this most recent surgery (see HERE), he is making an incredible recovery, and proving to everyone that he truly is unstoppABLE!

As kids, we're told that we can do anything we put our mind to - we can be anything we want to be if we want it bad enough. We're told that anything is possible with hard work, passion and dedication. If we have dreams, set goals and give our best effort, there are no limits to what we can achieve. Easter Seals believes it’s no different for kids living with disabilities. For these kids, facing challenges in life may be inevitable... but backing down is optional. With a lot of perseverance and some help from Easter Seals, we believe all kids living with disabilities can become #unstoppable!

The Unstoppable campaign features the accomplishments of three young people who have grown up with support from Easter Seals. Brandon Liston is a confident and charismatic speaker thanks to his role as Easter Seals National Ambassador. Zak Madell is a Paralympic wheelchair rugby athlete who, after only one year in the sport, led Team Canada to a silver medal at the 2012 London Paralympics. Victoria Chen is a top student, an accomplished pianist and a former Provincial Ambassador for Easter Seals Ontario.

Easter Seals is dedicated to fully enhancing the quality of life, self-esteem and self-determination of all Canadians living with disabilities. As Canada's largest local provider of programs, services, issues-leadership and development for the disability community, Easter Seals provincial organizations offer transformative programs and services at the local level.

Serving a broad range of people with varying physical, intellectual, sensory and learning disabilities, Easter Seals helps to ensure that everyone living with a disability has access to the equipment, programs, services and support they need to make the most of their abilities.

For some, what are typically seen as the simple everyday routines and rhythms of life can be fraught with barriers, challenges and obstacles - making life anything but simple. Having a disability can severely limit a person’s ability to access their world and enjoy the same experiences as their able-bodied peers. For many, a disability can even affect how they see themselves and how they view their own abilities. It can lead to lower self-confidence and self-esteem which can cause them to doubt their potential and their ability to contribute positively to their community.

It is the mandate of Easter Seals across Canada to help with the programs, services, support and assistance that Canadians living with disabilities need to truly access their world and live life to the fullest. With the support of donors, sponsors and partners, Easter Seals helps change the lives of children, youth and adults living with disabilities from coast to coast.

Visit eastersealsnl.ca and donate today to help kids like Brennen become #unstoppable

Click HERE to order your own t-shirt. They have sizes for the whole family!

And, We're Home!

My boy is home!!!

After 28 days in the hospital, and well on his way to recovery, Brennen was discharged from the Janeway this past Thursday!

Though he is still having some pain and discomfort, he is also having lots of happy time and big bright smiles for everyone! It is hard to believe that the surgery is over. We were so anxious about it for so long, and now (hopefully) the worst is behind us.

The correction in Brennen's spine is incredible. He gained 5 inches in height, and he looks like a different child. His x-rays are shocking. As in, they literally took my breath away. The sight of all of that metal inside of his tiny little frame is really off-putting, but knowing the benefits he will gain from it makes us very hopeful.

He has been sitting up in his wheelchair, and is more comfortable now than he ever has been in this chair - even so soon post-op. He still has 58 staples in his back, which will be coming out on Tuesday. The incision is clean and long and will leave him with a serious scar to show what an unbelievably strong boy he is (in case anyone needed proof). His poor little body has been through so much, it breaks my heart, but he has handled it all like a champ!

Andrew and I are so happy to have our boy back where he belongs. The past several weeks have been tough on everyone, and we are happy to now be enjoying the comforts of home. We are looking forward to getting back to some sort of 'normal'. We are excited to be able to do fun things with Brennen again like we used to.. before he became too uncomfortable to tolerate any sort of activity. We are all more comfortable now. I am aware that he still has a ways to go to be fully recovered, but I cannot help but focus on the beauty of today and the amazing potential of tomorrow.

Thank you to Megan Nicole Art and Illustration for this beautiful drawing of our family - bags packed, headed home from the Janeway! It is so personal and thoughtful, and we absolutely adore it!! I can't wait for warmer temperatures to be able to get out and enjoy a picnic just like this!!

Thank you again to everyone who has been thinking of us and sending well wishes to our precious boy. We made it through a very challenging time thanks to the love and support of all of you! xo

Spinal Fusion

On Tuesday, February 7th, Brennen underwent spinal fusion surgery.

Due to neuromuscular scoliosis (related to his cerebral palsy), Brennen had a severe curve in his spine that had progressed gradually over the past few years, and got significantly worse over the last couple of months. He has been in a tremendous amount of pain and discomfort (as I talked about HERE), to the point where he could no longer tolerate sitting or even lying down, and so we found ourselves at a point where the surgery was our only option. Having his spine fused will stop the progression of the curve and straighten his spine, which also helps to align his hips and pelvis, putting less stress on his internal organs.

Brennen has had surgeries in the past (ie. this one), and while I hesitate to say that it gets easier, it does become familiar. We checked into the Janeway again on Monday, February 6th (the day after his birthday), and geared ourselves up for surgery the following day.

We are fortunate to have developed a great relationship with many of the doctors, nurses and staff who have been looking after our boy for many years now. While this may be routine for them, they recognize that it is not the norm for us and they treated us with the upmost courtesy, respect and understanding. We were worried, but we knew we were in good hands.

The surgery went as well as could be expected. By the hands of highly skilled surgeons, Brennen's spine was fused from T3 to his pelvis. He had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. His bleeding was controlled, and while they had units of blood ready for him, he did not require a transfusion. Instead, he was able to get some of his own blood back via a "cell saver" (intraoperative cell salvage machine).

When we were able to see Brennen in the PICU, my heart crumbled. Even though I knew that the surgery was successful and he was going to be fine, I just can't come to terms with the fact that his little body has to go through so much because of his disability. I grieve each thing, each opportunity, each experience that has been stolen from him, and I grieve for the fact that I am not able to fulfill the most fundamental maternal instinct - to protect my child from pain and suffering. 

After the surgery, Brennen had a fair amount of bleeding, and was given a transfusion of plasma to help with clotting. He remained on a ventilator for breathing support, and he had an NG tube from his nose to his stomach for nutrition. He had IVs in both hands and an arterial line in his foot. He had a butterfly needle in his arm for subcutaneous morphine injections, and was monitored very closely for pain management. He spent a night in the Pediatric Intensive Care Unit before returning to our cozy room on J4 Surgery, where we are currently.

This lucky elephant was given to Brennen by a young boy we met in the hospital this week. While going through a difficult time himself, he showed such empathy and compassion for Brennen, and he really touched my heart. I truly believe that people come into your life for a reason. I was in need of a pick-me-up, and this one came at just the right time. Life can be painful in all sorts of ways, and it made me realize that while I would rather have an easy-breezy life, that is not realistic, nor would it be so rich and full. Thank you, Kaisen, for this special gift. You made a big impact on our whole family, and we will never forget your kindness. You have inspired us, and I hope that even in these challenging times, as we cultivate more love and light, life will be a bit easier for all of us. We hope to see you again!

Brennen had a couple of episodes of 'respiratory distress' shortly after the surgery, where his oxygen levels would drop and they had to call in back-up, but he has been doing relatively well in the days since. His pain is the biggest issue right now, and though he is on some heavy medications, he still has quite a bit of discomfort.

We are taking things day by day. We are seeing some improvements and feel encouraged by Brennen's overall disposition. Andrew and I are taking turns at the hospital so one of us is always with Brennen. The stress level is definitely high, but seeing him start to have increased periods of awake time with slightly less pain is keeping our hearts happy and our spirits up.

Brennen is amazing and he is fighting this with everything he's got. His resilience, determination, and courage are far greater than my own. Once again, he is teaching us what strength truly is and we are so inspired by our brave little boy.

Thank you all for your concern, prayers and love for our boy. 

We so appreciate your support and your positive thoughts for all of us.

But first I will make you strong

My baby boy turns 12 years old today!

We spent the last ten days in the hospital, keeping Brennen comfortable with pain medication and going through all of the pre-op assessment and tests required before his surgery next week.

They did blood test after blood test to check his white blood cell count and hemoglobin levels. He had to be gradually weaned off of his seizure medication because it posed a bleeding risk for surgery, and he was started on a new one that seems to be working well with no negative effects, so far. We met with the anesthesiologist who will prepare him for the procedure, and the team from the PICU, who will be ready and waiting for him afterwards.

He had multiple x-rays and was injected with a radioactive dye for a bone scan in nuclear medicine. He had an echo-cardiogram as well as an EKG, which showed that his heart is good and strong (and full of love and life, which we already knew!)

We were able to take Brennen home for the weekend, to celebrate his birthday and to enjoy spending some quality time with him before his surgery. He will be readmitted on Monday, and surgery is scheduled for Tuesday.

Today we will celebrate our boy. Not with the biggest party or the most elaborate decorations, but by surrounding him with so much love that he never ever questions his place in this world. He will know that we are beyond overwhelmed with gratitude for the day that he was born, and he will feel how immense and deep the love of our family is for him.

We will hold him close and thank our lucky stars that he is here and he is ours. The next couple of weeks will be challenging, and Brennen will be in the fight of his life, but he is strong, and he will make it through. Brennen's disability has become second nature to us. It is a part of our lives that has become so intricately woven that it is impossible to separate from anything else, and we like it that way. We can handle it. But at times like this, the fear takes hold and brings back all of the feelings and emotions from when he was first diagnosed, and it's fucking terrifying.

My heart breaks because he has to go through this. The worry and sadness are suffocating at times, but I know that he is in the best of hands and will be back to himself before we know it. He needs this surgery, there is no question. He is extremely uncomfortable, and sitting has become impossible for him. The curve in his spine is severe, and poses a risk to his internal organs if left uncorrected, so we really have no other option.

I am so thankful to our family and friends who have been so supportive and helpful these past few weeks. I am thankful that we have so many people to count on and who are looking out for us right now, and I am thankful for my beautiful boy, who despite tough circumstances, still has a sparkle in his eye.

Happy Birthday, Brennen. I love you, I love you, I love you.

"You're gonna be happy," said life, "but first I will make you strong."