The Unspoken Truths

There is something so divine about being able to love and support someone as they overcome adversity. There’s a certain pride that comes with supporting someone in their most intimate and challenging moments and seeing them through each of those. The magnitude of those feelings are amplified when you experience this with someone near and dear to your heart. These journeys are filled with a rollercoaster of emotions; some difficult, some triumphant; regardless they are written in stone and the degree of the concrete can make some moments unforgettable–even if you want them to be.

You develop a new type of hope, one that leaves you feeling vulnerable and naive to any sort of possible outcome but the favorable one. It’s a hope that teaches you a new lesson, each and every time you experience it and it is different with each individual. There is almost a certain err of ignorance, a blessed one, that encourages you through each trying moment. But it is a beautiful one–one that reminds you how precious life and love are. It encourages you to savor every moment and every memory, to embark and acknowledge the little things much more than we already do. It reminds you of the significance of the simplest, most precious things, relationships and people in our life and teaches you how to fight and love fiercely and unapologetically on their behalf and with them.

With each soul and heart I come to know and love, I develop a different fondness for each of them. Much like a snowflake, no two emotions nor souls alike. There are moments that I remember distinctly regardless of how much time may pass, there are characteristics and quirks that remind me of them each day, there have been countless celebrations and victories but there have also been unspeakable losses and dark memories.

Despite their uniqueness and individuality there is a certain familiarity, an uncomfortable recollection that can flash before my eyes. It’s the familiarity of the lump creeps up in the back of your throat and leaves you feeling numb both physically and emotionally. It’s the private, unspoken familiarity that we witness but dare not acknowledge. It is triggered with the slightest word, or experience and can leave you in a state of reliving prior heartbreak. Much like loving them, each parting goodbye is unique and profound but the devastation never grows familiar nor does the goodbye.

Once you enter a world of struggle, you gain an instant connection with those that experience similar journeys and that connection makes it too powerful to look away. You know that your loss does not make you any less aware of the struggles that still remain, but rather draws you closer. There’s an obligation to change the injustice you face, to challenge it and that can be sought in the victories and memories of others–a beautiful exchange. But the connection that is created in strife and loss is one we wish we did not have, but cannot deny. With each soul that departs, and each goodbye that passes that familiarity can be crippling. It brings me back to the moments that I felt the deepest sorrow, and makes that pain just as real as it once was. I realize that that pain never really became any less real, or less profound. I relive each and every emotion, each and every second. I remember actions and reactions, I remember hurting to the depths of my core over and over again it is a feeling I’m desperate to escape but fall victim to each and every time I experience loss. Each and every time I say goodbye, I recall each and every time I said goodbye and I hurt just the same.

There’s times I want to run as far away as I can from it, many times I wish I could shake it from my mind.  Each memory remains vivid, and each void remains prominent and there are times where salt is rubbed on a wound that never seems to heal. Though you may not see it, we break too. Though it may be familiar, it never hurts any less. But I know that this pain remains familiar because it becomes my reason for doing and being and regardless of the pain I feel there is always great redemption in the soul I was blessed to know and love. The soul that taught me countless lessons, provided me with precious memories, brought laughter and joy. There is no soul that goes forgotten or unloved, nor missed or wished back. I try to remind myself of how lucky I am to have known someone who makes saying goodbye so difficult, a bittersweet blessing. However just as the trees do, we will break down and be led vulnerable but I will bloom, grow and rise through each coming season of life and love to my full capacity for those that have come to pass.

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Blessings in Brokenness

I grew up a Roman Catholic. My faith was always strong and reinforced as I attended a Catholic school for the majority of my school career. It wasn’t until my path changed drastically that I really began to see the hope and comfort that comes with believing in the Lord.

In attempts to bring comfort to unfortunate or unexplained circumstances, people often justify these things with the saying that God’s work always has a purpose, or that everything happens for a reason. However, when we look at the other side of the coin, how can we justify that Someone who is filled with such greatness can allow such profound suffering to occur each and every day? Some may beg to differ, and even I challenge myself regarding this some days, but I believe that there is a purpose for the hardships we encounter in our lives. They may not always make sense, but they do exist.

I’ll start off with the most cliché (yet incredibly valid) response: how can we learn to celebrate victories, without enduring the hardship that comes before it? If I did not endure days of pain, I would not learn to appreciate the days where I encounter relief. If I did not feel exhaustion to the core, I wouldn’t learn to make the most of the days that I have the energy to function. If I never found myself at rock bottom, I wouldn’t have the courage to look up and find solace in the promises of heaven. I don’t think I would appreciate my progress if I didn’t have to fight with everything in me to get there.

By no means am I saying that my faith in God alone is enough to get me through each and every day, because truthfully it isn’t. Do I believe that God is responsible for all of my ailments? No, not in the slightest. But I do believe that He will see me through. There are many days that I cry, and scream, and get angry at God because I cannot clearly see the path that He leads me through. It has encouraged me to seek out His blessings, no matter how minuscule they may seem. Sometimes finding those blessings is easy, especially in the little things, but there is a big hurdle that I often find blinding me and preventing me from finding any positive aspect to my situation.

I have spent many hours at the mercy of my illnesses and conditions and prayed relentlessly to find some sort of silver lining in all of the struggles I encounter, both mental and physical. I have pondered the notion of finding some sort of solace in these vicious conditions and it wasn’t until recently that I was able to find the blessing in being ill. I’ve found that the questions I put to God are answered in subtle, yet kind ways.

There was one night where I was so angry. I’d been in excruciating pain the entire day before and I was so beyond exhausted; I couldn’t get a moment of relief in to be able to sleep. It was a day that had been filled with disappointing appointments, stressful encounters, profound loss – all around just a bad day. I wondered how God could stand back and let me end my day feeling so hopeless and alone. But I realized, His gift to me wasn’t ending the day on a positive note but in the promise that tomorrow will be a new day; a new day filled with new opportunities and new possibilities, a day to discover more and make further progress. Each new day we are blessed with us a fresh start and after a bad day I can’t think of anything more redeeming than an opportunity to seek out grace in the good and the hard.

Again, on a day where I was completely drained of every ounce of energy, bombarded by bad news, in excruciating pain and feeling lost in the system, I found myself shaking my fist at the Lord. How can He expect me to make any progress in the state that I’m in? How can I be destined for greatness when I’m so incapacitated by these illnesses? Again, the realization came that there is a light in all of this. Some may say that having a chronic illness is as bad as it can get…a life that is not promised without illness. But, you know what the beauty in all of this is? The beauty is that as we grow, so do our chronic illnesses and the things that we struggle with today may become tomorrow’s normal. Realistically: that is unfair. No one should be confined to a body that fails them day in and day out, and no one should settle for a life in pain, but overtime that pain becomes bearable. I grew up doing things and feeling things that I assumed were normal, I knew nothing else but the symptoms that we now associate with my conditions. That ignorance is pure bliss in situations such as this and, realistically, that normalcy is all I can ask for. 

At the end of the day the realization is this:  I may be weak, but my God is strong. I lack many things, but I have Him. Though I am tired, I know He will never grow tired of loving me. And that…well that’s enough for me to get through the most difficult of days and the most beautiful.

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#SimplyStrong: Taylor Brianne Filorimo

Here we are again witnessing another January 30th; my best friend Taylor’s 21st birthday. 21 is a milestone birthday for many, it’s a year where all the boundaries that were created for you as a child diminish, it’s the opportunity to live in this world and be considered an adult all around the world. In a perfect world I would show up at her door with a bunch of flowers and some cupcakes, we would go out to dinner and I would buy her that first martini.

But this isn’t a perfect world, because I’m celebrating my best friend’s birthday without her. Not because she lives in the US and I’m in Canada, but because cancer took her from this world at only 16 years old.

In August of 2009 Taylor and I became acquainted over social media, we bonded over our mutual love for Justin Bieber but our connection was growing to a deeper level. Shortly after we began talking Taylor was diagnosed with Renal Cell Carcinoma, a rare form of kidney cancer normally found in middle aged men. Taylor’s cancer is resistant to chemotherapy and radiation so she was dependent on the clinical trials the country had to offer and surgery when applicable. She visited the National Institute of Health for an experimental treatment where they determined she was the youngest documented case of Renal Cell Carcinoma. Her journey was long and gruelling; her cancer spread to her lungs which resulted in a major lung surgery removing 5% of her lung. When her cancer proved to be relentless, Taylor’s doctors decided to put her on an experimental chemotherapy trial. While the cancer remained resistant Taylor suffered the severe side effects from chemo that made her incredibly ill, but as she did with everything Taylor endured all the suffering with grace. Throughout all of this doctors had told us that Taylor’s cancer was terminal, we knew that one day the cancer would take her but we didn’t know when. All we could do was keep her comfortable, and increase her quality of life. That wasn’t our key to give up, that wasn’t enough to keep her down so long as Taylor was fighting so were we.

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Throughout our friendship Taylor and I communicated via social media and video chatting and despite the physical distance between us and our illnesses trying to tear us down our friendship flourished. After almost 3 years of constant communication and video chatting my family and I travelled to Tennessee to finally meet Taylor and her family. It was a moment I will never forget, I will never forget our first hug or the days we spent together. As much as Taylor and I enjoyed each others company and created so many memories, we also had devastating conversations that I never would have imagined having with my best friend…definitely not at 16.

The end of our visit came quickly and it came time to say goodbye. We made plans to come back a few months later, but there was a feeling in my gut that I couldn’t ignore. I remember stepping foot into our hotel room and collapsing onto the bed in tears and sobbing into my moms arms, that was the most difficult goodbye I had ever said.

On September 4th, that heavy feeling in the pit in my stomach became a knot in my throat. Taylor had suffered a seizure and home and was life flighted to the hospital in critical condition. I was losing her. I remember that night more vividly than I would like to, I remember being on my knees praying to God to spare her…to give me another visit, to let me have my best friend. There were too many people that loved her, so many things we need to do together—things we promised we would. I wasn’t ready to live without her. The next day at 12:54 pm I got the call I dreaded, one that I never could have prepared myself for: my best friend, my Tay Tay, my sister, my other half was gone. Even writing this brings me back to that very moment, I rushed out of class and into the bathroom and was sick to my stomach. I panicked and ran to my car barely able to breathe, all I could think to do was call my mom.

tay6“She’s gone. She’s gone mom. Taylor’s really gone. I don’t know what to do. What can I do? She’s gone. I can’t believe she’s gone”

Then I cried. I cried so hard I couldn’t breathe; I have only felt that devastation a handful of times. I sat in my car screaming, angry at the Lord for taking her from us at only 16. Angry at myself for not being there with her. Angry at her for leaving. Angry at the reality she had to face. Angry that I waited so long to go and see her. I drove home and as soon as I saw my mother I collapsed in her arms in hysterics. I couldn’t do anything but cry, for a very long time my broken heart was all that I could focus on. I quite literally ached to hear her voice again, to know that this was all a nightmare or a mistake…this couldn’t be real, not my Taylor.

Despite the pain I have endured missing her, the past four years have brought great insight. Taylor and I leaned on each other for support when it seemed that the rest of the world didn’t understand the struggles we were facing. Her friendship was, is, and will always be one of the greatest gifts I have received.

Even though its been over four years since she passed away, her selflessness and courage still humble and inspire me. There are many days in each year that trigger an avalanche of every emotion a human can feel, days like the anniversary of her passing and her birthday. I can only imagine the incredible person she would be today, but I am so proud of her that legacy that continues to live on through the Live 4 Tay Foundation that provides support to families with critically ill children.

When I think of Taylor there are thousands of words that come to mind: she is kind, caring, loving, intelligent, selfless, strong, considerate, respectful, passionate, driven—you can see my point. Each and overtime I tell Taylor’s story there’s one phrase I will never say in her regard, Taylor did not lose her battle with cancer. She won this battle in every regard; not only did she fight cancer but she managed to live, love and laugh despite the pain and harsh reality she faced. In her journey she didn’t lose anything but gained the admiration and respect of peope worldwide.

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However in all of her selflessness, I grew selfish in mourning her passing and wishing her back, I begged God to give her back to me because I wasn’t ready to lose her, I didn’t get to say goodbye. That’s when Taylor’s wisdom reminded me to look on the brighter side of this situation; she was no longer tied to an IV pump, she was no longer in pain or suffering, she didn’t have to endure the side effects of this vicious disease. I picture her playing softball with her long brown hair, laughing without a care in the world and sometimes that eases the pain of missing her so deeply.

Taylor’s mom says “we can’t control the cancer, but we can control the journey” and instead of mourning her loss on her birthday, I will celebrate her magnificent life and honour the beauty she contributed to this world. On Monday January 30th, as I do every year, I will be releasing some lime green balloons with messages written on them, making sure to send my birthday wishes her way. I hope you’ll join me and #Live4Tay.

Happy 21st birthday my beautiful friend, you are missed deeply, loved unconditionally and never forgottentay1

#SimplyStrong: Emma Maria Neagu

Emma was born on July 25, 2003 and from that very day that she was born, it was clear she would accomplish great things. She grew up as an active, healthy little girl with her mom Claudia, her dad Emil and eventually her little sister Lizi. When Emma was 3 years old she began taking gymnastics and quickly fell in the love with the sport. She began with only one class a week, however by the time she was 11 she was working in the gym for close to 16 hours a week. She was placing at exceptional levels in provincial level competitions, as well as club level competitions.  At one point in time Emma was balancing school,screen-shot-2017-01-13-at-10-07-42-pm competitive gymnastics,  and dance and managing to excel at each of those. In April of 2015 after a prestigious gymnastics competition, Emma made the transition to focus on dance instead of gymnastics and practiced in acro and jazz classes on the part-time competitive team at a local dance studio. She truly did the best, and was the best in everything she took part in; she was a valued member of each team, and family she was apart of.

One evening in the beginning February of 2016, Emma was at home practicing when she fell and injured her knee. In the days after her fall she noticed increased pain in her knee but when ice didn’t do the trick as it had before, they knew something was different. Throughout all of the pain Emma continued dancing and competing on her injured knee, until one day when the pain became severe and was accompanied by swelling and hardening of the area. After an X-RAY and examination of a doctor, it was concluded that there was no broken bones and she was to continue her regiment of ice and anti-inflammatory medications. Despite her best efforts the swelling and pain continued and during a routine visit to her pediatrician it was concluded that the swelling and hardness in her knee was a hematoma. A hematoma is an abnormal collection of blood outside of a blood vessel. She was told to stop all of her extra curricular activities and allow time for her knee to heal, in the mean time an ultrasound and physiotherapy were prescribed to help It heal. Two weeks and four physiotherapy sessions later, Emma’s doctor received the results of the initial X-RAY and explained that there was a strange image around her femur bone that could not be explained by a fall. The results were sent to our local children’s hospital for a second opinion, it didn’t take long for them to get a call back. While she waited Emma participated in a dance competition on her swollen and hardened knee, her first and only that year as she refused to let her team down.

In mid-March (2016) Emma went to the hospital for her appointment. Emma, her mother and father entered the hospital intending to see an orthopedic specialist but instead found themselves in the cancer clinic where the heard the word “osteosarcoma” –a form of bone cancer. After an MRI, a biopsy in the following days the doctors confirmed their worst fear, Emma had cancer. When Emma tells this story she says, “I thought the worst I would hear was a broken bone, cancer never crossed my mind”. March 28th, 2016 brought the final and official diagnosis that Emma’s “hematoma” was actually a cancerous tumor along with the devastating shock that 2 small additional tumors were found on both lungs–indicating that the cancer had spread. Here we have a 12 year old girl, and her mother and father who had known nothing but a healthy, active, passionate and unstoppable little girl having to swallow the news that she not only has cancer in her bones but in her knee as well.

“Despair–again, shock–again, denial–again. This can’t be true” – Claudia, Emma’s mom

screen-shot-2017-01-13-at-10-12-31-pmEmma’s treatment protocol included 16 rounds of chemotherapy, after facing the devastating reality that she would lose her hair she was faced with another decision…a decision no family, nor child should ever have to make. Emma’s femur bone and knee joint needed to be amputated, she had a few options for surgery including a traditional amputation that would include inserting a metal rod as her leg or a less traditional limb sparing amputation known as a rotationplasty. In Emma’s words, “a rotationplasty is a surgery where they removed my tumor and knee joint where the cancer was; then used my healthy tibia bone, rotated it 180 degrees backwards and reattached it to my remaining part of my leg (the upper thigh). Now my ankle faces upwards and acts as my knee. When I put my prosthetic on and flex my foot, its like bending my knee; and when I point my foot it straightens out my prosthesis.” This decision didn’t come easily for Emma’s parents, but for Emma she knew instantly. The rotationplasty was a perfect decision that she made because it would allow her to dance again; it’s not a traditional amputation, it’s not something you see every day but Emma did it for no one but herself and her love for dance.

After her rotationplasty chemotherapy continued, but those rounds of chemo did not come without struggle, side effects, and difficult symptoms. Emma lost 5 kg during her first chemo rounds and required an NG (nasogastric) feeding tube to help supplement her with nutrition. Her taste buds changed drastically making even her favourite foods taste like metal, it was difficult to gain weight let alone eat when everything tastes vile. In between completing her rounds of chemo, Emma had her two lung surgeries to remove the tumor metastasis. Emma faced both surgeries with grace, poise and an optimistic attitude–and that grace paid off. Despite some unexpected hurdles during the second surgery, Emma got through each experience and came out stronger. I know it is cliché, but it is true in every sense of the phrase in her regard. Emma truly takes and has taken every obstacle and experience and treated it as an opportunity to learn and grow from, instead of to simply overcome them.

nomochemoFinally, on December 30th Emma had her final chemotherapy treatment. She celebrated in her hospital room with a few of her favourite visitors, her central line was removed and Emma is back to resuming her life as the active, passionate, intelligent young woman she is. Only days after having her line removed Emma was already swimming and back in the gym that she grew up in training to get her strength back for dance, and for life. Emma is still in the process of getting fitted for her prosthesis; she needs to go through three models accompanied with extensive physiotherapy for each to gain stability and learn to walk, run, and eventually dance using her prosthetic leg.

When I first met Emma and her mom at the hospital, one of the first things she said to me was that everything happens for a reason and that was their mantra throughout Emma’s treatment. I find so much beauty and importance in that because they used it to remind themselves of the beauty that can exist even when your world crumbles. I’ve spent so much time with Emma since meeting her only a few months ago, and I find myself in awe of her every word. There are not many adults, let alone children, that act with the dignity and grace that she possesses and understands. She truly has learned the hardest lessons life has to offer, in the most poised manner. I have nothing but love and admiration for Emma, for her strength, for her grace, for her willpower and passion, for her love for life and those in her life, and her understanding that difficult paths will lead us to beautiful destinations. At the end of the day, Emma is not just a girl who had cancer or an amputation; Emma is a daughter, she is a friend, a cousin, gymnast, a dancer, a fighter, a lover, and a courageous human being that this world is blessed to have in it.

Emma, you are a reminder of all things good and beautiful in this world and a reason why those things exist. You are a gift to me, to us, to this world and I know it has magnificent things in store for you. I’m humbled by your courage, inspired by your wisdom, and honored to be your friend. This world is yours.

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Hand in Hand: A Letter to My Sisters

Girls,

There’s so much I want to say, but I want to start by telling you how much I love being your sister. It has been such a blessing to watch you grow and discover this world, and see you develop your own unique but distinctive personalities. We don’t always see eye to eye, but you both mean the world to me. I’m the oldest of us three, that means I technically should be “wiser” but I know that that’s not always the case. For the better part of the last few years you two have been my rocks; you’ve never left me when things have gotten messy, you know how to flush my central line, you know what to do to avoid hurting me, you’re there for snuggles in my hospital bed, you know the names of my every condition, and you love me despite them. It seems like this lifetime has been filled with you taking care of me, and I’m sorry for that. I can’t tell you how many nights I spend worrying that you don’t see me as your older sister but as your sick sister and that terrifies me. It means that I’ve failed.

It’s written in the rules of every TV show, movie and book…the older sister is supposed to be the one to experience things first. I’m supposed to be telling you all the ways to avoid making the same mistakes I did, I’m supposed to share in the excitement of all of the “firsts” that you encounter and giving you advice on how to navigate them. We should be talking about crushes on boys, and drama between friends. I should be helping you grow into intelligent, caring, independent young women and instead I’m only watching you do those things. I’m watching you turn to others in the circumstances that you should be turning to me, but that’s not your fault…that’s mine. You are deserving of advice and counsel, of support and comfort and I’m sorry that I can’t be the one to do that. We’re at the point where you girls are starting to reach the milestones that I haven’t yet, the things that I’ve put on hold. You’re dealing with choosing careers and making post secondary education plans, you’re navigating through your first job, you’re entering high school and going to parties. It makes me so happy to see you both discovering the things and people who make you happy, the things that matter to you most but I desperately wish I could do more than just watch. I wish I could be holding your hand and walking through this with you, easing your fears with stories of my experiences, giving you tips to make things easier. Believe me, I want nothing more than to be able to do those things but sometimes my pain gets in the way.

Not only my physical pain, that’s not what I mean this time but my emotional pain, anguish, embarrassment. Sometimes the pain of not being able to do those things for you can hurt me more than any pain I’ve ever endured, and when I’m faced with that I turn away. There have been many, many, many nights that I’ve cried until there were no more tears to cry because of how I’ve failed you. I’m so sorry, I’m so, so sorry that you two have had to grow up without me. I’m sorry that I haven’t been the big sister I should be. I’m sorry that I’ve created this life for you, one where you’ve had to give up huge chunks of your life for me. I’m sorry for the countless holidays you’ve spend by my bedside in hospital, for all the happy birthday’s we’ve sang in a hospital room, for the time you’ve had to spend without mom or without dad so I could have them with me. I’m sorry that you’ve had to depend on each other, instead of me. I’m sorry that you’ve had to take care of me the way that I should be taking care of you. Sometimes that pain leaves me really angry and ashamed, and I’m sorry that you get the brunt of that. I just wish I could be better for you girls, because you deserve that–you don’t deserve this.

If my love alone could change the reality we’ve had to live, we would never be faced with the adversity that we have. I will spend every single day for the rest of my life working to be, and wishing I was the sister that you both deserve. I’ll never forgive myself for all the days that I wasn’t. As much as it pains me to watch, it fills me with so much pride to see you accomplish the things that I haven’t been able to. Please know that I am, and always will be your biggest fan. Even though I can’t offer you advice through these milestones know that I am always here to listen to and cheer you on through them. I’ll always be here to love you through them.

Lord knows that I always have something to say, or advice to offer about things (even when it’s not called for) but if there’s one thing that you listen to please let it be this: you both are powerful beyond measure, you have so much to give to this world and so much to discover and even though the world may not always be kind to you in return…you will always have a big sister that loves you more than you can imagine. Even in the moments that you doubt it, and all the times that I haven’t said it I do. I love every single part of you and characteristic you possess, even the quirks that drive me crazy. I may not always be present, but I will always be thinking of you and cheering you on. You both have given me the greatest gift I could ever recieve, and that’s being able to be your big sister. I’ve learned to love and forgive, to endure and perservere, to stand my ground and appreciate the little things. You’ve reminded me of what’s most important in this world and that’s the love and laughter that is within the walls of our home.

I am so grateful for your love that remains constant in my life that’s filled with so much uncertainty. I love you girls more than you will ever know.

Always,

Your big sister

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2017: Acceptance

Being chronically ill makes life unpredictable, that in combination with the unpredictability of every day life is enough to send this control freak into panic. Every year, people look at the new year as an opportunity to begin a new lease on life; resolutions are coupled with promises, goals are set, change is promised…the whole shebang! Likely, at least for me, those things last a day and I’m back to my old ways. If I’m being honest, sometimes hearing these resolutions and setting them can upset me.

“I want to lose weight” – I’d really like to gain or at least sustain and maintain my weight

“I want to stop drinking so much” – I’d really like to be able to drink, not alcoholic but just enough to stay hydrated.

“I’ll work out more” – seriously?

I can grasp at my attempts for resolutions. I can make them until I’m blue in the face if we’re
being honest; but when I fail at keeping up with those resolutions due to circumstances beyond my control the guilt overwhelms me. So I began a new tradition, one that makes me happy and is attainable. Instead of making a resolution, I choose a word to help me navigate the year. Think of it as a pair of glasses, this word becomes my glasses and I do my best to view the world and my circumstances through the eyes of this word. For 2017 I chose the word acceptance.I’m choosing to accept my circumstances, and learn to live with them instead of disputing them and fighting against them. I will accept my abilities and accept the things that I struggle with. I will accept myself, my body, my conditions, my emotions. I will accept my thoughts and opinions. I will accept my reality instead of comparing it to what I’d like it to be. I will accept that my dreams may not be attainable right now, but have faith that they will be attainable in the future. I will accept the people that make an effort to be in my life, and accept those that don’t feel I have a place in theirs. I will accept the reality I face, the experiences I endure, the pain I feel, the limitations I am held back by. I will accept and endure the emotions I feel as opposed to disputing them. I will accept that God’s plan for me is different than those of my peers. I will accept that I am still important despite the detour my illnesses force me to take. I will accept that some of the goals I make will not be attained, and I will accept and allow myself to mourn and grieve that. I will accept that my life is carried out in a manner than the status quo states is wrong. I will accept myself, as I am.

Now don’t confuse this theme of acceptance with the notion of settling. I will not settle for anything less than I deserve, or anything less than I want for myself. I will not accept the standards people hold me to, regardless of how low or high those may be. I will not accept or allow my limitations to be a permanent reality. I will not accept the mistreatment and hurtful thoughts and words I may face. I will not accept the negative opinions of those who do not understand my values and morals. I will not accept the idea that I am any less worthy than a healthy human being. I will not accept the notion that my illnesses make me a lesser human. I refuse to accept the thought that a hurdle is too big to overcome, or that a setback is permanent, or that a mountain is too big to climb. I will not accept negative opinions of my actions and my beings by people who underestimate me and my abilities. I will not accept the idea that I am less, that I am incapable, that I am a failure. I will not accept anyone who doubts or gives up on me.

The key in all of this is to find a word that empowers you, a word that encourages you when things get tough or the doubtful attitude surrounds you. It’s a word that is important to you, a word that will guide you through the things that you find difficult. There is no need for empty resolutions, or unrealistic expectations. Choose a word that represents what is important to you, that allows you to unapologetically live and act and attain the goals that you want to achieve. I held myself back in 2016, because I chose to compare instead of accept. I’ve found that the acceptance of your reality and of your circumstances is the key to being free. Be aware of the choices you make, and the potential you possess. You are fearfully and wonderfully made, and once you accept that your path is different than that of your peers a whole new world of self-discovery opens up.

Regardless of what word you choose, or the resolutions you list life is what you make of it. It may not always be bright skies and sunshine, but it will not always be grey skies and storms. If anything in the upcoming new year, don’t gage it on the accomplishments you attained or those you did not. If anything at all choose to celebrate the fact that you survived another year, whether that was in and out of the hospital or bedridden at home…you did it. That in itself is pretty badass if you ask me. So keep on keeping on, and may the next 365 days be kind to you and filled with good health, happiness, and endless amounts of love and laughter.

Here’s to another year of finding grace in the good and the hard, and surviving despite the odds stacked against us. Onwards and upwards my friends, Happy 2017!

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#SimplyStrong: Tayah Jade

It was at a fundraiser at the end of 2013 that I held the door open for a tiny, shy little girl who quite obviously was fighting cancer. She was sweet and timid, quiet at first–overwhelmed by the attention. I would soon learn that her name was Tayah Fairbrother and when she was just shy of 5 years old she was diagnosed with neuroblastoma, a form of childhood cancer that forms primarily in nerve tissue. Some say it is rare, but pediatric cancer was only rare when I was ignorant to it. She was gifted a princess crown by someone she looked up to, and when her eyes lit up I fell in love with this tiny, beautiful little girl before me. She was shy at first but after some colouring and some chit chatting I was wrapped around her little fingers, and more than anything I was captivated by the way her father, Mark, spoke of her journey and the injustices they were facing as a family desperately trying to save their child.

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Neuroblastoma is an ugly, relentless, aggressive cancer that has only one known protocol. She underwent countless rounds of chemotherapy, radiation, surgeries, bone marrow biopsies, tumor biopsies, needle pokes, and took endless medications when it was finally coming down to the final phase of treatment. Tayah was undergoing immunotherapy, a therapy that essentially teaches her body to identify neuroblastoma cells and kill them using her immune system–trust me, this treatment is harsh, it is painful, and it is just as grueling as chemotherapy. Her parents were just briefly beginning to allow themselves to see the end of this madness as she was nearing her final rounds, cautiously optimistic they call it. Then just as they were about to exhale, they got the worst news they could have possibly imagined at that moment…Tayah’s sweet body was no longer NED (No Evidence of Disease), she had relapsed with neuroblastoma in her liver. Immunotherapy was stopped immediately and her parents were told to take her home. You see, there is no regulated treatment for neuroblastoma relapses and truthfully most children don’t survive, but that wasn’t our cue to give up. Not our Tayah.

With hope in the back seat along with their sweet baby girl they drove back home to their quaint home north of Toronto. They desperately tried everything available to them, I mean everything. Tayah was put on alternative treatments, all natural and herbal supplements, dairy, sugar and red meats were eliminated from her diet to name a few. Her parents truly gave that their all and it worked, the tumor markers were down to normal levels in her body, the scans weren’t lighting up any more. She was doing better. We had dance parties and play dates, we talked about PJ parties and had movie nights complete with popcorn and a disco light. She loved dancing almost as much as she loved life, and you could see that in her eyes. Again, just as we were merely starting to think of exhaling again things turned awry. In November, I got an awful text message from her mom.

“Tayah is back in the hospital. She’s not going to make it through the night, she wants Christmas.”

I didn’t have time to ask questions, the next few hours were a blur. I ran to Walmart and bought lights and an angel for her Christmas tree, thanks to the child life department at the hospital every other wish was granted. I got to the subway and the second text came,

p.s. bring PJs

PJs? For Tayah? Does Tayah need PJs?

No. For you. PJ Party

I lost it in Old Navy, in the middle of the mall. I promised Tayah a PJ party and now we were going to have our own impromptu PJ party that night for the first and last time. When Tayah’s mom asked her what she wanted for christmas, she said she wanted a frisbee, where was I going to get a frisbee at 10:00 at night? But I found it, I found it and it was delivered. I wish I could have given her so much more, I wish I could have saved her. tayah-2I met her parents at the hospital who had set up a mat at the end of the hall so they could be in and out of Tayah’s room. I composed myself and went in, and snuggled up next to her.

I spent the night laying bed cuddling her, playing with her little fuzzy hair that was just starting to grow back, rubbing her face and trying to remember every single thing I could about her. After medication tweaking and adjusting, she was comfortable and so peaceful. Still waking briefly to ask for juice, or watch TV, or talk to us. I don’t think I fully processed what was going on, I just listened to her talk, watched her sleep and watched every breath. I watched her chest rise and fall, and pray that it would rise again. We would switch in and out, taking time with our Tayah. Each time I was snuggled by her side I would whisper in her ear, “Hey…Tayah? I love you” she would faintly respond “I love you too” but she was so sleepy. “You know I love you so much right Tayah?” “mhm”. Finally it was in the early hours of the morning that I started to head home, how could I walk away from this little girl who instilled so much in me knowing it may very well be the last time? The kisses didn’t stop right up until the second I had to leave. I over snuggled and she had enough at one point, she made sure to let me know of it. I gave her one last kiss and I walked away with my breath held, hoping that I wouldn’t break down yet. As I turned to walk out the door and was immediately called back, “Sabrina? She said she wants more kisses” I would do anything to be able to snuggle her and kiss her again today, I wish I never left. The last picture I have with my girl, is a picture of her hand in mine…a feeling I hope I will never forget.

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Tayah’s hand in mine

Tayah held on and she fought so hard, that Monday in November wasn’t our last. I visited her as often as I could, even in her journey ending she made sure that we knew she was a fighter. She proved everyone wrong and sent expectations flying right out of the water, it was grueling to walk away each time not knowing if it was really goodbye but every hello was so worth it. Every day that she held on was a testament to Tayah and her strength.

Eventually, on December 17, 2013, I got the phone call I was dreading: Tayah Jade Fairbrother became an angel in heaven just as she was our angel here on earth. Her story is a testament of strength and happiness in the darkest of moments, Tayah had a love and passion for life that was beyond her years, she brought so much joy to everyone that had the opportunity to love her; she danced her way through life and through cancer. At only 5 years old I wish I had the strength that she did. Tayah was not just a cancer patient, she was charmer, very intelligent, she loved to dance and to sing, she was a 5 year old girl that was, is and will always be loved beyond measure. Her existence is and always will be celebrated and I’m reminded of her in so many beautiful ways each day.

Since that day there is nothing anyone could ever say to convince me that one person cannot change a nation. One person can do unbelievable things. Tayah’s life sparked a movement, a pay-it-forward opportunity to give to families just like theirs that are spent in the hospital. The joy that Tayah brought to this world is immeasurable, I am confident that it is so much brighter because of her. Though it hurts to miss her immensely, I am so grateful for the time that I got to love her.

Godspeed sweet Tayah, I love you so much.

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How Giving Back Kept Me From Giving Up

When I was merely 12 years old, I fell ill with what was the beginning of a life filled with rare chronic illnesses. Looking back on some of my first hospital admissions, I associate them with some of the worst times of my life. The anxiety and depression that I had merely just faced before, engulfed me and became almost impossible to ignore. The worst of those memories? How alone I felt. I have two younger sisters, so once I became accustomed to hospital life my parents weren’t able to stay with me at night and with work during the day…our visits were just visits, and I was alone many days and each night. Don’t get me wrong, I understand. I understand that my parents did and are doing the very best they can to keep our family afloat, and that meant dividing their time between me in the hospital and them downtown. Despite having an incredible support team, I did spend many days alone and relied on the resources and people in the hospital to keep me smiling and feeling safe.

There was one night that I was laying in bed during a long admission and it was just after my mom had left that I broke down in tears (as I usually do). I cried, and cried and for some reason I could not stop. The silence of my quiet, dark and empty room was so overwhelmingly loud and prevalent. I cried because I hated feeling alone, I was anxious and afraid, I yearned for home, I knew discharge wasn’t in the near future; and I just wept. It was that night that I was so fed up with the reality I was forced to live and could not change that I had two choices: to give up, or give back. I could let the depression consume me, I could let the pain overtake me, I could let the exhaustion silence me or I could fight like hell to make sure that no child ever had to lay in a hospital bed and cry for the reasons that I did…for reasons that could be changed, helped, or avoided.

I’m sure you can assume which one I chose.

In making that decision to give back, I’ve been given a reason to keep going. I have met so many kids with stories and hearts beyond their ages. I’ve been blessed with the opportunity to work with a dance organization that work tirelessly to use dance to raise funds for the child life department at the children’s hospital I attended. They have graciously allowed me to share my story at their annual gala each year and have held events at the hospital for children who aren’t able to attend their high school prom. They have become a family, my family, they’ve connected me with some of my favourite people that have kept me from giving me up. I’ve connected with my best friend through their efforts and events. Not only that, but they’ve given over $100,000 to the hospital strictly to give the children their childhoods and memories for families. The faculty that has become family, and that family is the glue that keeps me together

Over the years I have made connections with patients and their parents via social media, and I’ve attempted to create a movement that I still have not named. It comes with the promise of the company of not another nurse, or doctor, family member, or volunteer but the promise of a friend who can understand what it’s like to lay in that hospital bed. It’s the promise of time spent with someone who wont be intimidated by their reality or surroundings, it’s the promise of comfort in the form of a cozy blanket or a snuggle, it’s the promise of laughter through movies or conversation. For parents it’s the promise of someone to love their children and understand their reality, it’s the promise of comfort that they can run down for a coffee or head home to be with their other children, it’s the promise of assurance and reassurance, it’s the promise of understanding and companionship. For me it’s the promise of a reason to get through every bad day and appreciate every good day, the promise of a reason to smile and perservere, and the promise of a love that is a profound gift to give and recieve.

I know that so long as I have those beautiful hearts to love, I will always have a reason to fight. I will always have a reason to perservere. It’s funny because I always thought that in giving back I would be helping others, in turn it has helped me so much more than I can even begin to explain and more than I could have ever anticipated.

The promise that I made that night laying in my hospital bed was the beginning of a new era; a newfound love and appreciation for life, a different sense of gratitude, a deeper meaning to my purpose, and a profound healing that has brought more restoration and relief than any medication or doctor could offer.

My illnesses have altered and taken away so much of the way life used to be for me, but they will never take away for my drive, love and ability to give back. So long as another child fights a battle they shouldn’t have, my heart and arms will always be open to them.

In all of these years of being sick, I’ve learned many lessons but I had no idea that the greatest lesson I could learn was within myself: through the magnitude of the love and desire in my heart and the power of two open arms.

In the new year I’m excited to announce a new segment that will be posted weekly that highlights the stories and experiences of the kids that I have come to know and love, and how you can help me keep this initiative going. They are some of God’s greatest souls, the wisest minds and kindest hearts. They are direct examples of the beauty that remains despite the harship that exists and I am so excited to introduce them to you.

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When My Illnesses Stole More Than Just My Body

The day I fell ill was the day I surrendered the life I once know to the diseases that plague my body. I accepted that the things and routines that became familiar would not longer be the same. I understood that, or at least I thought I did. I didn’t realize that in surrendering those things I would lose so much. I prepared myself for the loss of my friends and the understanding of others. I prepared myself for the loss of my independence and freedom.

However, I never in a million years could have prepared myself for the loss of my happiness.

I realize now that I’ve built a wall to shut out my emotions because quite frankly, that’s the only way I can get through most days. But then there are the days that the magnitude of that loss is profound, the depression is heavy and dark. The days that I wasn’t consumed by my depression have become far and few; my focus lately has been in getting myself through today and to tomorrow in one piece and nothing more. I suppose that my way of getting through those things was that in the back of my mind, I knew there were things that made me happy when I was apart of that. Tonight I’m sitting here in a pile of tissues and a mess of tears, wondering when I lost those things too.

This year has been a difficult one, I’m not in a position to go to school or to work. My days are spent alone, keeping busy with chores around the house or traveling to and from appointments, procedures, and treatments. The things that I attributed to my success aren’t in the cards for me and I have struggled to see what worth and purpose I have if I can’t do those things. To compensate, I’ve worked tirelessly to understand and identify what is important to me and to connect with those things. For a while the mere thought of my dreams and any taste at them would satisfy me, they would be enough to make me happy but lately it seems like I’m stuck in this perpetual cloud that makes it impossible to enjoy anything. The things that I’ve credited my very existence tom no longer make me happy and that…that is terrifying.

I feel alone, even when I’m in a room full of people.

I feel worthless, even though I’m loved by many.

I feel lost, even when my plans are clear.

I don’t know how I ended up here when I worked so hard to avoid this very situation. I desperately want to be happy, I want to feel anything but this depression and exhaustion. I want to be confident in my purpose and presence. I want to surround myself with the people and things that lift me up. That happiness feels so foreign to me.

I’ve shut myself off from everyone I love, and the world around me because acknowledging the reality that I was living was torture. Feeling like you don’t have a purpose, or place in this life is torture. Maybe I did it in a desperate attempt to protect myself, maybe I did it without even realizing I did it but I’m stuck. I’m stuck in a never ending cycle of grueling, exhausting, consuming depression and I can’t get out. I can’t get out of my own head, the same head that harbors the brain that is convincing me that I don’t deserve happiness.

I find my anxiety building about the things that once used to comfort me. I constantly wrestle with the anxiety that is consistently present; the anxiety that causes me to fear the people and situations that held my sanity. It first started with nerves every time I had the opportunity to do something that makes me happy, or be with someone I love. Those nerves got louder and more powerful to the point where I would panic before I went out, I would think of reasons to cancel or get out of them but was able to push through with the confidence that I would be glad I pushed through. Now, that panic is present every single second of every single day and it’s stolen the joy that I had found in those situations. The second I arrive I count down the time until I leave, my mind is constantly buzzing with excuses and reasons to leave. Just like I did before, I try to convince myself that I will be happy I pushed through but that doesn’t happen anymore.

I feel empty. I feel like this body and this brain aren’t mine anymore.

I wish I had an uplifting way to end this, but I don’t. I look forward to the day that I take back my happiness, and my mind; if it was a matter of choosing happiness, I would have chosen it a long time ago. My only comfort is that there is a season for everything in life and that this too shall pass in time. I know I’m not alone in this battle against myself, I know that I’m not the only one out there who is fighting for control and peace, I know I’m not the only one who is stuck in the dark, I know I’m not the only one and that alone is enough to get me through today.

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A Guide to Navigating the Holidays With A Chronic Illness

The holiday season is finally upon us! It’s the season of food, festivity, family and fun. A time where we celebrate our loved ones and what we’re grateful for…it’s the season of giving and of recieving. But let’s be honest, it can be a very real reminder of a very difficult reality that we’re living. For people with a chronic illnesses the holiday season is the season of reminders, reminders of where we were in the years before this, reminders of traditions that have changed, reminders of the company that has come and gone, and reminders of what truly matters in each day. It’s not the easiest to navigate, so here’s some tips to get you through the holidays.

1. Before you do anything: give yourself permission

The holidays are notorious for the hustle and bustle of holiday gatherings with friends, families, co-workers, an then some, delivering gifts and checking off every item on your list of gifts to purchase. It’s exhausting and busy for those with normal energy levels, and we know it’s even more exhausting for us. So give yourself permission–allow yourself to sleep in an extra hour, to only drop by the party instead of staying all night, to not go to that party at all, to not eat that dish that your aunt keeps pressuring you to eat even though you know you’ll pay for it later. Give yourself permission to take time for yourself and your body without feeling guilty about it, or bad about yourself. Our chronic debilitating illnesses don’t take time off, they don’t disappear for the holidays and I swear that my symptoms are actually worse but that’s just the way the cookie crumbles. You are allowed to gift yourself this season, and do that in any way your heart desires.

2. Plan ahead

Two words: brain fog. Let’s face it, for one reason or another we’ve all done something and later realized that you have no recollection of doing it or gotten a call for an appointment that we don’t remember booking. Get a calendar, I have a really big one that’s constantly in my face right next to my bed. I purposely made sure it was obnoxiously big so that way the second I stepped out of bed in the morning I would see what I had planned for that day, it’s saved me from missing a lot of appointments and lunch dates and is my saving grace during busy times. If you’re anything like me you’ll find a deep satisfaction in colour coding all of the events you plan. If you’re not into the obnoxiously big ordeal, get a small pocketbook calendar that you can look at every day.

3. Be in the moment

There’s so much that happens during the holidays and I frequently find myself getting overwhelmed with all I have to get through, my solution to this is to remind myself to live moment-to-moment. Focus on playing with your nieces and nephews, or on baking cookies with your grandmother. Focus on the atmosphere, how for once people are so happy to be together. This moment is all we’re guaranteed and we know all too well how our health can change at the drop of a hat so enjoy it. Don’t get caught up in what tomorrow has to bring, or what you have to get through in a weeks time. All you can do is get through right now.

4. Remember the sentiment of a handmade gift

I’m going to talk about the elephant in the room: finances. I have been unable to work for over a year now, and I know that even though my heart is giving my bank account is not. I’ve always said that if I was a millionaire, I’d be a millionaire for a day because there are too many people who deserve good things in the ugly of today that don’t get it. With that being said I know that I would prefer a handwritten letter from someone, instead of a gift anyday. We, as a society, need to work on getting the materialistic aspect not associated with the holidays. Don’t feel guilty about DIY gifting, excercise your crafting ability, write a letter, create a book of the reasons why you love said person. The gift doesn’t need to be worth hundreds of dollars to be memorable, so don’t stress your bank account out by trying to make everyone else happy. The truth is that those who love you don’t expect a gift from you, I know I don’t expect that of my loved ones. Even on the people that you absolutely feel inclined to gift, don’t hesitate to take advantage of online shopping and bargain websites. You wont remember how much the gift was when you look back on the memory, but you’ll remember how the gift made you feel.

5. Gift yourself a nap, or a bath

Seriously, treat yourself. If you’re tired take a nap, don’t push yourself to the breaking point because then you will miss out on far more than what you will during a two hour nap, or a soak in the tub. Remember to include days to rest and recouperate. Remember that promise you made in #1, in the season of thinking of those you love don’t forget to take care of yourself. Who knows, maybe you can make a gift out of it and take your best friend to the spa and tag along for a facial.

6. Bring your safe food to parties

As someone with mast cell disease, I need to stay on a strict diet of things that I’m not allergic to. A lot of the holiday celebrations and traditions are geared towards eating, and if someone is unable to eat that can lead to a lot of isolation. So if you have foods you are able to eat don’t hesitate to bring them with you to the party! Try making it a dish that everyone can eat as well and bring it along with you if you’re not looking to draw attention to yourself. The important thing to remember is that even though I am 100% supportive of treating yourself to the food you’re craving just be mindful of the response you’ll get from your body in the days to come. Indulge with caution.

7. Don’t be afraid to say no

On the topic of food, there’s only so much that you can take. If sitting at a table watching people eat, or standing around refusing appetizers as they are passed around is getting tiring then don’t be afraid to say no to the next event. If you know that you have a threshold of how much you can take, respect that! The definition of insanity is doing the same thing over and over and expecting a different result. So don’t drive yourself to the brink of insanity trying to make dinner parties work. Plan them few and far between, unless you aren’t affected by food than definitely enjoy and enjoy a little extra for those of us that can’t.

8. Starting new traditions are just as great as the old

For me personally, one of the hardest things (or sometimes rewarding, it’s a catch 22) is comparing where I was last year to where I am this year. Sometimes that can bring a lot of pain, sometimes it can bring redemption, sometimes it brings a sense of accomplishment. That’s the thing about time, is that with time there is change and that change may not always be good. So when this year comes around the traditions that you grew up on or that you’ve always done very well may not be able to be maintained, but dont beat yourself up. Traditions are created every year, and creating a new one to replace the old isn’t the end of the world! Creating new traditions is just as exciting as carrying out the old. So much has changed since last year, celebrate it!

9. Reflecting doesn’t have to be ridiculing

When the new year rolls around everyone hops on the resolution and reflection train, the resolutions stick for a month (if you’re lucky, and then we’re back to the same old). Maybe you can call me a perpetual pessemist, I like to call myself a realist…but I tend to go straight to the negative. I recount all the bad things that happened in the year, I like to think that I do that to create a new found hope for the year ahead but this year make it a point to focus on the positive. Think of all the great things that happened this year, focus on the victories, on the company you enjoyed, the new faces you met, the new hearts you got to know, the adventures you embarked on, the simple things you came to appreciate, the lessons you’ve learned, the gifts you’ve been given, the knowledge you’ve gained…there is so much to celebrate, so much about you to celebrate.

10. Pat yourself on the back

You did it. You got through another 366 days, another year. You overcame every hurdle that was in your way, you fought every symptom, you got through each day–even the ones that you thought you couldn’t. You have lived another year; a year was filled with laughs and tears, with victories and losses, with hellos and goodbyes. Not every day was easy, not every day was guaranteed; I know there were many where I questioned my ability to perservere but I was proved wrong. Applaud yourself for that, because we both know that wasn’t easy. The demons you fight are relentless, they are strong, they are willing, they are persistent…but you are stronger, you are more willing, you are even more persistent. Take this time to look at the happiness that’s around you, the love that you’re surrounded by, the reasons that you fight…look not at the ugly, but at the beauty that remains despite of it.

Like all things this holiday season is temporary so embrace every second, even the frustrating ones. Let this time be a reminder of all of the love that you’re surrounded by, the things and people that have remained constant even in a whirlwind of a life that changes every day. You are here for a reason, you are loved for multiple reasons. Your illness may take up majority of your energy, your days may be more difficult than easy, but you my darling…you are powerful beyond measure. I hope that you spend this season in the company of those you love most in this world.

Happy Holidays, my fellow warrior. Here’s to another year of overcoming the odds stacked against us.

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