Sunday, November 27, 2016

Achieving Goals for the Future We Want

Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated around the world annually on the 3rd day of December.

The theme for this year is “Achieving 17 Goals for the Future We Want”. This theme notes the recent adoption of the 17 Sustainable Development Goals (SDGs) and the role of these goals in building a more inclusive and equitable world for persons with disabilities.

"We mark this year’s International Day of Persons with Disabilities in the wake of the adoption of the ambitious 2030 Agenda for Sustainable Development.  This global blueprint for action summons us to “leave no one behind”." -Secretary-General Ban Ki-moon

Observance of this day provides opportunities for inclusive events in our local communities, as well as a time for political leaders, businesses, academic institutions, cultural centers and others to think about best practices and to focus on issues related to the inclusion of persons with disabilities in all aspects of society.

There are several events happening this week in our city to celebrate the International Day of Persons with Disabilities. See the poster below, created by Empower: The Disability Resource Centre, The City of St. John's, and the Coalition of Persons with Disabilities NL.

The City of St. John's has also created a wonderful activity package that contains materials needed for children (and adults!) to complete a Disability Awareness Challenge. We have been busy working on ours! You can email to request your own package.

Disability is a natural part of the human experience. There have always been people with disabilities, and there always will be. And that's ok. It is perfectly natural for human beings to be diverse. It's what makes us strong and interesting and vital.

I know from having so many incredible little ones in my life that children with disabilities need to know they are loved just as they are, and that they will be supported to follow their dreams no matter how large or how small. The way to live those dreams might be different, but the dreams are the same as those of any other individual - happiness, health, growth, education, friends, family, love, home and belonging.

Let us work towards consciously increasing our thoughts, words, and actions to promote inclusion and belonging.

Achieving Goals for the Future We Want”. I want a future in a world that is better prepared for my son and for children like him. I want a future where everyone is included and accepted. My little boy has brought so much joy and love into my life, and I prepare for his future and join others in paving the road for all of our children by making efforts and creating awareness today. We are all in this together, and we need to work together towards the full integration of persons with disabilities in our communities, in every aspect of their lives, and on an equal basis with others.

For more information on the International Day of Persons With Disabilities, please visit

Friday, November 18, 2016

Strong Wise Women

"Here's to strong women. May we know them. May we be them. May we raise them."

On Thursday evening, I joined author Kelly Buckley and Tracey Hennessey in celebrating the resilience of strong wise women. 

Strong Wise Women is a community inspired by conversations Kelly Buckley had with thousands of women who were navigating some of the most challenging life situations. Coming back to her home province of Newfoundland, Kelly was excited to share her own story and the resulting groundswell that spurred a global conversation with women about finding balance and purpose in the darkest of times. 

Kelly's own personal journey is one of healing after the unexpected loss of her son transformed her life. She says, "In the darkest of moments I rediscovered the simple truth of happiness, and living a joyful grateful life. So often, we wait for our circumstances to be perfect, "and then" we will be happy. But happiness is there for the taking for each one of us. We find it by giving thanks for the simple joys of life, even as you navigate through difficult times. I've dedicated my life to helping others rediscover their own unbreakable self, and realize that they can embrace a beautiful life in an imperfect world, one little thing at a time."

Kelly eloquently spoke of life, gratitude, compassion and resilience. She touched the audience in a way that only a strong wise woman can, and let me tell you, there were tears.

Kelly's definition of a strong wise woman continues to evolve, but it rests on these four pillars - We are perfectly imperfect. We are open-hearted. We are grateful. We are change makers.

Perfectly Imperfect: We see the beauty in our imperfections. Truly accepting and loving ourselves no matter what difficult decisions we’ve faced, questionable choices we’ve made or defeats that have broken us. Even with cracks in our armour, we know the heart, soul and spirit of who we are is still very much intact and deserving of love.

Open-Hearted: We know that love is all that matters. No matter how difficult the circumstances, we recognize that a closed heart prolongs the hurt and we understand that there’s always room for love.

Grateful: We choose to feel the goodness that surrounds us. We understand that no matter what we face, being grateful for even the smallest of things is the foundation to a happy life.

Change Makers: We make our little piece of the world a better place. As natural nurturers, we support one another in our daily lives; our families, our neighbours, our communities. We share our life experiences to help ease those around us and lift each other up.

It was a very moving experience connecting with these women, each with their own unique stories of hurt, courage and resilience. The room was filled with a tremendous sense of community, of belonging, and of understanding. It was beautiful.

Kelly described how she first started writing after her son's death. She wrote in order to process her loss and to transform her grief into gratitude. She wrote for self-discovery and for personal inspiration. She wrote to turn her thoughts into something concrete, and she wrote to share her perspective with other women who might be grieving in some way.

She says, "By writing about my experience, I was lucky enough to connect with thousands of other people who were looking, as I was, for a positive way to shift their perspective on life, even in the toughest of circumstances. Some had lost loved ones; some endured a painful divorce, or debilitating illness. So many I connected with had lost jobs, homes and stability. We all have our stories of pain, and we all just need something to hang on to, to let us know tomorrow may be a better day."

Kelly has since published two books, Gratitude in Grief and Just One Little Thing, and she has an incredible online community - Just One Little Thing - that encourages readers to take a moment each day to focus on one little thing you are thankful for, no matter what your life circumstances. Kelly says, "The idea of “Just One Little Thing” gently grew following the unexpected death of my son Stephen on July 4th, 2009. In desperate need of something to hold onto following the loss, I told myself that if I could find just one little thing to be thankful for, I would make it through the day. With each passing day, I was able to see that even though my heart was breaking, much goodness still surrounded me."

None of us are immune to loss, and we will all face challenges and adversity at some point in our lives. I recently went through an exercise where I completed a 'loss history chart', reflecting on losses I have experienced in my life, and how I grieved some of these losses. As you can imagine, this was a very emotional process. I find it hard to talk about, and I feel so much guilt in saying that the greatest loss of my life - greater than the death of a loved one, or the break-up of my marriage - the greatest loss for me occurred when my son, Brennen was born. You see what I mean? Oh My God. So much guilt. What a terrible, horrible thing to say. To clarify, I don't mean that Brennen is or was ever a loss - he is the greatest joy of my life. He is my sun, moon, and stars. He is my everything. The fact is, however, that when he was born and diagnosed with cerebral palsy, I grieved the loss of the child I thought I was going to have. I grieved the loss of the mother I thought I was going to be. It was a tremendous sense of loss at the time, and it was very difficult to come to terms with both being happy for the child that I had, and at the same time grieving the loss of the dream that I had for my family.

Kelly spoke of a similar struggle when her son, Stephen was first born as one of a twin - Stephen and Matthew. Stephen survived. Matthew did not. She says that from the very moment she became a mother, she learned that life is a balance of happy and sad, and that the key to living life to the fullest is in learning how to coexist between those two things. Kelly, you are a strong wise woman indeed.

Kelly is right when she says that happy and sad can co-exist, and when we allow ourselves to learn from pain and loss, we evolve into more compassionate human beings.

I am learning, always. I am learning every day about grace and hope and love and the power of community and togetherness. I am learning that the messiest parts of our lives are also the best parts of our lives. Relationships, marriage, parenthood - they are all messy and beautiful, both, never either or. I am learning to love better. I am learning to accept challenges and adversity.

I am a strong wise woman. I am.

Wednesday, November 2, 2016

Tulip Tales: Zander and Lyndon

Several months ago, I shared the heart-breaking story of a precious baby boy named Billy (see HERE), who left this world entirely too soon. Billy was one of a triplet, and today, his mother, Adina shares the continuation of her story and introduces us to her two boys, Zander and Lyndon.


"Some people never get to meet their super heroes. I gave birth to mine."

My heroes are my sons, Zander and Lyndon, who were born at 25 weeks + 4 days, weighing in at 1 lb 9 ounces and 1 lb 4 ounces respectively.

I met them 6 hours after they were delivered. Both were lying in an isolette, wrapped in plastic and with wires coming out of them everywhere. I wanted more than anything to pick them up, to kiss them and snuggle them. Instead, I stood by their bedsides and cried silent tears, trying to not see all the wires and only see my precious baby boys. They were a dark purple in color, like a plum, and were the tiniest things I had ever seen. My heart longed for them. I wanted to make them all better. I felt so helpless, I didn't even know if I could touch them.

Jill and Vicky, the boys' nurses that day were amazing. They gave me space but instinctively knew when I needed answers. I was told that their isolettes were mimicking my uterus - the temperature was set to mid to high 30's and was kept moist. It would be covered for the majority of the time to keep it dark for them.

And the wires. Each one just as important as the last. A feeding tube was in their nose, a breathing tube in their mouth. Then from the belly button were two lines that were monitoring blood pressure and flow. On their chest were three white circles that held the leads in place. Leads monitored their heart rate, respiration and pulse.

I was terrified seeing all of those lines and tubes. And the beeps coming from the monitors were some of the scariest sounds I've ever heard. I was told to ignore the beeps and unless someone came running then everything was ok, but ignoring those sounds was not easy. I heard them in my sleep for months to come.

When I reached inside Lyndon's isolette to touch him for the first time, I was shaking. I didn't want to hurt him and thought for sure I could break him, he was that tiny. His skin was sticky and warm to the touch. His body was covered in a layer of hair. His right eye was fused shut but his left eye was open. His hair was as dark as coal, as was his eye. He was beautiful. Zander felt much the same and seemed to have even more hair covering his body. He had both eyes open and was just as beautiful as his brother. I didn't keep the isolette open for long, I didn't want all of the heat to escape. I sat by their bedsides and stared at them, praying for them to be ok.

On the fifth day of our NICU journey, I was finally able to hold Zander. It took two nurses and an RT to safely get him out of his isolette and onto my chest. Once he was settled and his vitals were good, everyone relaxed and I enjoyed every second of that first snuggle. My heart was so full of love I thought it would burst. It was the best feeling and a moment that I will never forget.

Two days later, the boys turned a week old and I got to hold Lyndon for the first time. His little body snuggled up against mine and all was right with the world. Lyndon opened both eyes that day as well! The days turned into weeks and I settled into a routine of daily visits with my boys, arriving by 10:00 am and leaving at 3:30 pm, returning at 8:00 pm until 10:00 pm. I was pumping every three hours as well, trying to produce enough milk to sustain them both. It was a very tiring time, both mentally and physically. The stress of having a child in the NICU is overwhelming, the stress of having two in there was overpowering. Guilt always found a way to creep in as I sat with one boy and not the other. I hated when other families were around and would peer in over my shoulder, making comments like "He's so tiny!" I wanted to protect them from everyone and everything.

Zander had trouble figuring out how to breathe on his own. He relied a lot on his ventilator, and he turned blue several times. It was very hard on the nerves. After several tests, it was discovered that he had an open duct in his heart, a PDA, causing moisture in his lungs and making it difficult for him to breathe. He started a round of medication to help close the duct. By the end of his medication the duct hadn't fully closed and he still struggled with "riding the vent".

Lyndon was holding his own, gaining weight and growing. He was even showing signs of no longer needing to be intubated. And then, at 28 days old, right before my eyes my baby boy began to fade away. He had received a blood transfusion that morning but instead of pinking up he was turning a greenish-grey colour. X-rays were ordered, and then the surgeon was called. Even though no one told me right away, I knew something was seriously wrong. The surgeon came to Lyndon's bedside where I sat holding his hand and singing to him, and told me that Lyndon had a very serious bowel infection called Necrotizing Enterocolitis. His bowels had perforated and the contents were leaking into his bloodstream, poisoning him. He needed a drain surgically inserted into his bowel to drain the contents out of his body, and he needed it ASAP.

I couldn't understand what was happening. He was fine the night before! He was smiling and being his feisty little self. How was he so sick that he needed surgery now? What happened? He was still so tiny, how was he going to make it through the surgery?! I sat with him right up until it was time for him to go to the OR. I memorized every little feature of his face and his body. I held his hand. I sang "You are my Sunshine" to him over and over. I told him how much I loved him and how proud of him I was for being so brave and strong. I didn't want to leave him. I feared I wouldn't see him alive again if I left. But eventually I had to let go, and I left my baby boy in the loving hands of his NICU team.

I was told afterwards that Lyndon was too weak to even make it to the OR, and the surgery was performed at his bedside. I was also told that he would require a second surgery to repair his diseased bowel, but he would need to be a lot stronger before that could be attempted.

As we waited for Lyndon to grow stronger, it seemed like everything started to go wrong. His gases were all over the place and he was placed on an oscillating ventilator to help regulate the levels. His little body began to swell and soon he was swollen beyond recognition. His skin had turned very yellow. He was being poked around the clock, constantly needing blood-work done, trying to determine the cause of all the swelling. He received transfusions of blood, albumin and platelets on several occasions over his stay in the NICU.

Zander's PDA opened up again at 34 days and he began a diuretic to help him lose the extra moisture. Both boys underwent spinal taps. Zander's was fine, however Lyndon's wasn't and he was treated for meningitis. Antibiotics became Lyndon's new best friend. I was feeling more helpless than ever. There was absolutely nothing I could do to help my babies. I wanted so desperately to protect them and I had no idea how.

Lyndon continued to retain fluid. It seemed everyone was at a loss as to why until one day an ultrasound of his long term i.v. (PICC Line) showed that blood clots had developed. He was started on a blood thinner to help shrink the clots. I prayed that this would be the answer he needed and that all would be resolved, but instead things got worse. Before the blood thinner had a chance to do its job, Lyndon developed a brain bleed. It was a grade one bleed that eventually resolved on its own.

Zander was extubated towards the end of July, and was put on a CPAP machine. After 44 days, Zander's cry was finally heard. It was like music to my ears! Zander continued to do well while Lyndon fought with everything he had in him to keep going. And then they were separated. My heart felt like it was ripped from my chest. As hard as it was being in the unit, as guilty as I felt sitting with one boy at a time, I was put at ease with a simple glance towards the baby I wasn't sitting with. But now they would be in completely different rooms on opposite ends of the NICU. I was devastated. I tried to be fair and spend equal time with each of them and I alternated who I would go see first, but my mind was always with the other boy on some level and it hurt beyond measure. I hated not being able to be with them both.

Lyndon went for his second surgery on August 28. He lost 17 cm of his bowel in total, but finally the road to recovery and getting my boys home was in sight. He was extubated at 92 days old, and hearing his little cry made my heart soar. I never thought we would get to this point. The universe, it seemed, had other plans for my sweet Lyndon though. He developed a fistula and again we waited for another surgery. To say I was frustrated at this point was an understatement. I was beyond mad at the world. Why couldn't Lyndon catch a break?

My heart was broken watching him go through all of this. All the needle pricks, all the attempts for cbc's because his blood kept clotting. The attempt at arterial lines that always failed. I wanted it all to stop. I wanted to take my baby and shield him from everyone. I cried to break my heart seeing him lying there so still, so physically exhausted, drained.

On October 18, Zander was discharged. What should have been a day of excitement was a day of such mixed emotions that I barely remember it. I felt like the worst mom in the world for taking just one baby home. I was so riddled with guilt for leaving Lyndon behind, leaving him all alone, that at times I couldn't breathe. This was most certainly not the way it was supposed to feel bringing your child home for the first time. Nothing about our situation seemed fair.

Zander came along with me now, every day, back and forth to the NICU to visit his brother. For the third time since June, we made an extremely hard situation work. The amazing nurses who snuggled Zander so I could snuggle Lyndon are a large part of the reason why it worked.

The weeks leading up to Lyndon's surgery proved to be just as stressful as the previous weeks. Lyndon had developed an extreme case of jaundice - his bilirubin was almost 400, when a normal level is 0. He also had a severe calcium deficiency. Every long bone in his body was fractured, along with three compression breaks in his spine. Lyndon showed so much strength throughout all of this. He barely cried. I got through the days because of him. He was my rock when I should have been his.

On November 2, Lyndon had his final bowel surgery. His feeds began shortly after. It took some figuring out to ensure he got all of the nutrients and calories he needed, but Lyndon soon began to show signs of improvement. He had so many people rooting for him, loving him, supporting him.

On Dec 21, Lyndon was moved from the NICU to the fourth floor, and after a brief stint in the PICU due to an infection, Lyndon was finally discharged! On January 6, after 208 days, our family went home. All of us.

The boys celebrated their first birthday on June 12, 2016!

Since coming home, Zander has had follow-up appointments with cardiology and we are happy to say his PDA is barely open. He is now a very happy, mischievous and healthy 16 month old!

Lyndon was diagnosed with Cerebral Palsy back in May. He has overcome so much in his short life already. I watch how hard he works and the determination he has, and my heart is full of hope for his future.


Adina, thank you for allowing me to share your story! It has been a pleasure getting to know you and your family, and I look forward to watching your beautiful boys grow! Remember, I am here if you need anything!

November is Prematurity Awareness Month, with World Prematurity Day being on November 17th. One in 12 babies in Newfoundland and Labrador is born prematurely, and globally more than 15 million babies are born too soon. On November 20th, there will be a 'Wee-Ones Walk' at the Janeway to recognize and celebrate these precious little babies. I hope to see many of our friends there!

-Julie xo