Life According to Anaphylaxis: Mast Cell Disease

I remember the day I had my first anaphylactic reaction, in fact I remember nearly every reaction I’ve had. They’re painfully difficult to remember, but nearly impossible to forget.

I was going to study at my tutors office, so I grabbed some Starbucks and an advil for my pain and sat down to get to work. I remember my arm being itchy, I scratched and scratched and before I knew it that tiny itchy spot was a hive and that hive turned into multiple. Things happened fast and before I knew it my lips were swollen and there was a tingle in my throat. I thought that was as bad as it would get.

Then came my reaction to morphine, in a desperate attempt to calm my pain the emergency room nurse gave me some through my IV. Within minutes my chest was hurting more than I could explain, it became hard to breathe, my heart was racing and pounding in my chest and my chest tightened with every beat. I remember doctors rushing into my room, a round of epi failing and a second following an oxygen mask held over my face, and pure utter chaos. I remember thinking to myself that there couldn’t possibly be another reaction, that it couldn’t possibly get worse than this. Little did I know, that things could get worse…and this was only the beginning.

I fell in love with dance when I was little, I hated the recitals but I loved dancing. Eventually and inevitably I ended up dancing competitively and it became my life–literally and figuratively. I spent more time at dance than I did at home, I spent more time dancing than I did walking. Dance was something I could rely on when there was nothing else, it was my outlet of all the stress and frustration I experienced in being sick. It was my everything, I attribute it to helping me heal…to healing me. So you can imagine my devastation when I started to feel my throat tingle and heart palpitate in the middle of a number. Before I even finished the number my dance teacher was already pointing out how red I was turning, I’m sure you can imagine where this is going. That was the last shot. That was when I surrendered everything to my illnesses. I remember getting home from dance after another failed attempt and collapsing to my knees. I know that sounds dramatic but I truly could not fathom losing dance, the only thing that held me together and there it was happening right in front of my eyes rendering me utterly helpless.

Shortly after I was diagnosed with chronic urticaria and exercise intolerance we were led onto the path of a vicious disease known as Mast Cell Activation Syndrome (MCAS). Mast cells are essentially the cells responsible for causing allergic reactions, they release histamine and other mediators that are related to inflammation and reaction. In my body, for whatever reason, these cells are triggered by the most minimal and uncommon of triggers. We discovered that not only was I triggered by food and medications, but by extreme temperatures and temperature changes, emotions like stress or anxiety, scents (food related or perfume/cologne related), right down to my clothes and detergent. I was reacting to anything and everything, and as those reactions increased I had to sacrifice more and more things that I loved.

The beach, which is, was, and always will be my safe place, is somewhere I can only seldom visit and only under a sun hat, umbrella and 80 SPF sunscreen.

Strawberries are an absolute no-go in any way, shape, or form.

The list of medications I have to treat infection, or pain, or discomfort is dwindling.

I’m growing increasingly intolerant to the mildest of scents that used to bring me comfort, like vanilla candles or cookies baking.

Crispy French fries, or chicken strips….a classic, but a goodie.

The feeling of your throat closing in on you, your face swelling, your body itching and burning, the way you use up all of your energy trying to gasp for air in between the wheezes, the fear of anticipating the burn of an epi-pen, but craving the relief that spreads across your chest almost instantly–the fear of wondering “what if it doesn’t work this time?”  The fear that consumes me every time I step out of my safe bubble that is “home”, every time that I put food to my lips, every time someone enters my house, or I enter theirs. The panic I feel when I walk into a cloud of cigarette smoke, when I start to shiver from the cold or sweat from the heat. The gamble I take when I take a medication that was safe the day before, but may not be safe today because that is the gift of MCAS. Those intense emotions and experiences never escape my mind, they invade my dreams and consume my memories. Sometimes I swear I can feel my throat swelling…or that my face is flushing; believe it or not sometimes I dream of being intubated and can swear I feel that tube in my throat.

In this crazy whirlwind of losing things I love because of a disease that I can’t control, I’m reminded of the infinite number of blessings I’m surrounded by. I’ve learned to appreciate the mere existence of all that I love, and to have that passion be enough to get me by.  It took a while (and I still have my days) to admire from afar and not hurt and grieve that I couldn’t be apart of it, but that day still came. And I am so damn grateful to have that bit of sunshine on the days where I’m reacting to my own hormones.  MCAS is a deceitful, selfish, consuming disease. It pops up at the most inconvenient times, it will puzzle you and doctors, it will require a lot of Benadryl but it’s taught me to appreciate the calm and beauty that remains despite all that this disease has tried to take from me.

That’s enough to get me throughout each and every day

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!

#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.

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. I 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.

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.

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.

11 Important Lessons I Learned Growing Up in a Children’s Hospital

I began getting sick when I was only a pre-teen. I traded in a life of running around at recess and trading snacks with my friends to walking the walls of The Hospital For Sick Children in Toronto and making friends with the wonderful ladies who would deliver my meals.

My life was different, yes, but life doesn’t have to be perfect to be wonderful.

Here are 11 things I learned from growing up in a hospital, and why I wouldn’t have had it any other way.

1. Your family is not limited to who sleeps in your hospital room. Family can be every person who enters your hospital room.

Whether it’s the team of doctors doing rounds at 7:00 am, or a nurse or a child life specialist, each of these people come in with a common purpose of wanting to see you better. And they work to get you there. They stay up late and wake up early wracking their brains trying to discover ways to combat every curveball your body throws at them. It doesn’t take long for you to love them and for them to love you.

2. The only reason to ever look at what someone else has is to make sure they have enough.

You learn to appreciate every moment, celebrate every victory and be grateful for every breath because someone across the hall is begging for his or her child to take another one. Don’t compare yourself to others and don’t undermine your victories for theirs. It can always be worse and it will always get better.

3. Your future will be figured out for you before you’re old enough to realize it.

I walked into the hospital at a young age, cursing anyone who came near me with a needle. It took me two visits to realize that I wanted nothing more than to be the one on the other side. Today, I’m studying to become a pediatric oncology nurse thanks to each and every one of the nurses that have ever taken care of me — even the bad ones! The love of a nurse is unlike any other.

4. “True strength doesn’t come from being strong all the time. It comes from having fears and doubts, falling to them, succumbing to them and then rising above them.”

Someone I love once told me that. Sick kids made sure that I knew that I didn’t have to be a superhero all the time, and that it was OK to not be OK. I learned to accept my fears and sadness and move forward with happiness.

5. Difficult paths lead to beautiful destinations.

Being sick isn’t an easy or beautiful journey, but after fighting all of these years I’ve realized that the greatest things have come out of the hardest fights. I’ve been taught to deeply appreciate any victory. I’ve had the privilege of meeting some of my best friends and the most inspiring little kids. I’ve found what makes me happy and what makes life worth living.

6. You can take the child out of a children’s hospital but you can’t take the children’s hospital out of a child.

The hospital will always be a second home to me. It will always be a safe place and it will always be in my life.

7. Loving yourself is more important than being loved by others.

Truthfully, fighting these illnesses has been a very isolating journey. A lot of people have left — friends, family and even the people who swore they never would. At first I was hurt by it and my world would crumble each time, but eventually I learned the importance of loving myself and knowing I was capable of doing things alone.

8. When all else fails, ice chips and banana popsicles will prevail.

Enough said.

9. This is my reality, and that’s OK.

Someone once told me that I couldn’t possibly find happiness within the hospital. It took me a while to understand it, but I grew up in the hospital during the years of “self discovery.” I learned who I was as a person and the hospital was a part of that. My comfort foods and greatest pieces of advice came from within those walls and I won’t be ashamed of that.

10. Bad things happen to good people and we don’t know why.

This has been one of the hardest lessons for me to accept. I will never understand why a sweet little baby had to fight for every breath of her life only to be taken from us. But as long as we don’t understand we will keep fighting for better days.

11. The little things will always matter the most.

A “ticket to fly” after a long inpatient stay, a freshly made bed, a cup of hospital ice after being unable to eat for a while or watching the movie “White Chicks” with your nurse at 3:00 in the morning — these little gestures meant the world to me.

Tricycles to Bicycles: My Three Legs

It’s no secret, but I struggle big time with self-love. I know I’m not alone in it, I know I’m definitely envious of people that are able to be confident enough to look in the mirror and like what they see back. I get self critical, for every one thing I see that I like I’ll point out 12 to match and it’s taken me 22 years to turn to myself and realize: dude, this isn’t working. So I’ve made it an actual goal of mine to work on self-love, self-acceptance, self-care…I need to make me a priority because I fill that gap of insecurity with caring for other people and leave no time or space for myself.

I’m going to put my psychology hat on here, and diagnose myself. Toward the end of my elementary school years, I got bullied. I know this is how every sad novel starts but I really just didn’t fit in with the people I was around, I’m a person that thinks with her heart and I’m the furthest thing from impulsive and it can get annoying. It was struggling to figure out my identity, I didn’t know who I was I just knew I wasn’t finding that understanding with the people I was surrounded by and those people didn’t understand me. Those two years were potentially the most difficult, it’s when I began to get sick and it’s when that chemical imbalance in my brain finally manifested itself into two monsters: an anxiety disorder, and a vicious, vicious cycle of depression. I sat face to face with these two assholes, in questionnaires, in long, drawn out appointments, in tear soaked piles of tissues that I often fell asleep in. I seemed to have lost myself, and lost myself quickly because at that age I shouldn’t have been wishing I didn’t exist anymore, I shouldn’t have been wishing I wouldn’t wake up in the morning. I knew something was wrong with it, but I didn’t say anything because I’ve become I managed to convince myself that there wasn’t anything anyone could do anymore. I was just stuck thinking like this and the meds only created this fake happiness that I managed to believe enough to get me through each day.

Adding all of this to transitioning to high school, a new set of friends, and then a failing body it all became too much. Fortunately, my story doesn’t end here and it doesn’t end tragically. I began to make real friends, hesitantly of course, as I knew people left as quick as they came. So once I made friends, I almost became obsessive about keeping them. I was afraid to say no, I was afraid to not do things in fear of that “no” being taken as “never again”. I hid my emotions from my friends, and was selective about who I opened up to so I guess that would explain why I had best friends in seasons. My friends in high school were great, they were as great as they could be with a friend who was more often absent than she was in school. They visited, they tried to understand, and they did. But being isolated in the hospital, I didn’t have much physical connection with people other than my nurses so I became the greatest at analyzing relationships and people via social media and the ways we would talk. I tell you, I became obsessed over these things. Then after high school my best friend died from cancer, it was on my second day of university so I didn’t have friends yet so I called who I knew: my friends from high school. To this day I still remember, there was only one friend that showed up that night and let me cry in her arms. She didn’t even know what was wrong, but she came anyways. I left university and was left in a world where I was stuck between two worlds, and I was alone. I was in my own head more than I was in the real world, I ached for company and for understanding but instead I mourned and grieved the life and person I once was. Once people started to come back into my life, I latched onto them and I didn’t let them go.

I developed deep, intimate relationships with people very quickly. I loved and trusted people so quickly, and found my way through their families and them. I built my identity around them and their families, I built my plans around them, I built my happiness and identity around them. I was the happiest I had been in years, I felt like I finally understood my place in this world and I had finally understood how to keep people in my life. I never said no, I did things even that were beyond my comfort level not by force but out of fear of losing the person that brought my happiness and life back to me. Eventually the inevitable cycle continued, I lost that person and in doing so I lost myself. Now this isn’t a physical loss, but it may as well have been nor is this at fault of this person. Truthfully, I owe this person so much of the knowledge I surround myself with. I learned so much, and developed so much as a result of that friendship. It’s one I’ve never experienced before, but one I’ll treasure forever. This was my first clue that there was something wrong here, but it wasn’t with anyone else but me.

Now my illnesses, my disorders, all of this medical crap has taken it’s toll on me…it’s worsened my depression, it’s aggravated my anxiety, and it’s created many pockets of trauma in which both of those things like to hide in. I’ve developed serious and severe anxieties about the world around me, and the people I’m around and the most harmless of trauma can trigger an entire panic attack, borderline manic episode that can lead to hours of crying, hyperventilating, vomiting, flashbacks, panic attacks, scratching, screaming, and just about anything to try and get out of my own head. I truthfully didn’t realize how desperately I wanted to get out of my own head, until I was left to my own devices. I’ve gone through quite the list of social workers, therapists, psychologists, psychiatrists, psychotherapists, and everything in between. I’ve been a patient, a member of a study, a guinea pig and just a plain depression, anxious teen. I’ve taken medications, done CBT, ABT, mindfulness, psychotherapy, family therapy, counseling, talking therapy, body talk therapy, biofeedback, CAM, CRT just about all there possibly could be out there…I have yet to find the combination that works for me, but I know that it will be out there. I recently began a new program, with a new team, a new approach, a new medication and we’re tackling a whole new set of issues that are incredibly difficult for me to work through a cope with working through. It’s opened up a whole new can of emotions and responses that my mind has worked to hide and bury under years and years of trauma, I’m uncovering things I once have only thought to be dreams or stories to be truthful experiences. I am growing, and changing, and hurting, and falling, and breaking, and mending all at the same time and most of the time I have no idea what I’m doing.

All my life I have navigated through life thinking I have three legs…think of this analogy as a tricycle. I know I was born with two legs, with those two legs I have crawled, walked, ran, danced, and been carried through 22 years of highs and lows. When the bullying and the teasing started every aspect of my life was questioned and picked at, and in defense I distanced myself from those parts and resented them too. That grew into a great deal of self-hatred. I told myself that I was a failure, that I would never be good enough, that I didn’t deserve happiness and couldn’t find it in myself. I hated who I was, even if I wasn’t sure of who that was. Thus came the development of my theoretical third leg, I was so broken that I was convinced I couldn’t walk through life with my own two legs so I depended on everyone else to help keep me upright. I relied on that third leg more than I want to admit, I relied on people to make me happy, make me feel loved, make me feel like I had worth and purpose. I put my well-being in the hands of people who loved me, and I expected that to keep me safe. And it did, well sort of. It’s just that every time distance was put between me and whoever I was close to I almost went into a state of grief because I didn’t have a foundation in my own mind of who I was, and what made me tick. I would fall into depressive lapses, I would question and contemplate my existence and my life. I literally lost pieces of myself when I lost friends, and that’s no ones fault but mine.

Recently, I went through this again. I lost someone I loved, and someone who I thought loved me. But this time…I didn’t fall apart. I didn’t blame myself, or question what I did wrong, I didn’t lose my sense of self instead I made sense of myself. I learned that there’s a reason why we are born with two legs, I learned that there’s a reason why learning to ride a bike without training wheels was a milestone. I learned that there’s a reason we express love and support by holding someones hand, instead of carrying them through. I learned that until I love myself, and I whole heartedly believed in that love and the fact that I deserve to be loved I will never be truly enough for anyone. So for the first time in 22 years I stand here unapologetically on my own two legs. I know that these legs may buckle, I know that I may stumble with them, that I may fall. I know I’ll get cuts and scrapes, and bruises and bumps but I’m ready for that. I’m so ready for it because I know that these two legs will always help me to get back up. I know that these two legs will always be there.

I know that with these two legs I will always be enough, and I will always be okay. I’m ready to start living this life on my own two legs, understanding the love that I deserve and not settling for less out of fear. I’m ready to find happiness in myself again. I’m ready to learn to walk again, I’m ready to do this life one step at a time.

My worth will no longer be dictated by those around me, and my happiness will no longer be in the hands of anyone but me. I’m on a journey to learn to love myself again. I am terrified. I am content. I am prepared. I am enough.

Q & A: Chronic Illness Edition Part 2

7. What do you wish people knew most about living with chronic illnesses? – Rebecca Lenio

That it’s not a one size fits all deal. That not all disabilities are visible. That just because something worked for your uncles-cousins-sisters-mothers-friends-aunts-daughters-step sister, doesn’t mean it will work for me. That no, getting out more wont help my disease. That taking medication isn’t why I’m getting sicker. That even though you may believe you do, you don’t understand my condition better than I do. That if I could be out there going to school, living with a full-time job I would do it. That I didn’t choose this life. That I don’t need sympathy, I need empathy. That just because I can’t always come out when you ask me to, doesn’t mean I will never be able to. That just because I can’t do what you can do, doesn’t mean I don’t want your friendship. That just because my reality is different from yours, I don’t expect you to know what to say, or how to fix me…I just need a friend. 

8. What kind of treatment are you using? Have you tried a C.D.I. (Continuous Diphenhydramine Infusion)? – Jennifer S. Lockhart

I haven’t tried a CDI, in Canada or at least here in Toronto my specialists haven’t heard of it and aren’t on board with it yet. They struggle with the idea of giving out IV Benadryl at home, but I work with a doctor in Boston who is helpful in giving ideas to my current specialists here. It may be something that would be really helpful for me, quite a few of my friends are using it and they seem to benefit from it. 

I receive ketamine infusions for my Complex Regional Pain Syndrome. I’m currently in the maintenance phase where I get a 2 day low dose infusion of ketamine in Boston every 4-6 weeks and I’m waiting on an admit date to begin high dose IVIG. I trialled Xolair but went into anaphylaxis within the hour of receiving it. 

9. What is your daily routine to keep you on your feet, and as positive as you are? – Helena Summer

Truthfully I should have a better daily routine, or even a routine at that. I fall asleep when I should be waking, and I wake when I should be sleeping. I take each day as it comes, and do my best to keep up with the plans I make but truth be told I don’t know what each day holds so I make sure to start and end each day with a grateful heart as a reminder to be grateful for the simplest of things. Before I get out of bed I list 5 things I’m grateful for in that morning, and before I get back into bed I make sure to write down as many as I can. That way even if I am bed bound that day, or unable to make it out of bed I know that there is something to be grateful for, or to look forward to. 

My weeks consist of many appointments but I make sure to include at least one item of self care, physiotherapy, massage therapy, accupuncture, therapy, and at least one session of yoga. I’m learning that it helps not only my physical symptoms, but my mind as well.

10. How do you manage your mental health? – Mikayla Hartney

Mikayla, I wish I could tell you that I have a solid grip on managing my mental health but I don’t. When I grow vulnerable or depressed, I block the world out. It’s a fear of mine to show the world myself when I’m the most vulnerable, I’m not sure why but I don’t want the world to see me at my weakest but that’s what you should show the world. When you’re most vulnerable and scared, that’s when the world needs to see you if we’re going to break this stigma of “mental illness” having the connotation that it does. 

There are still too many days I spend crying in bed, too many nights that I fall asleep in a pile of tissues. I try to match every negative thought with a positive, but most days that’s unrealistic. I’m currently in a program filled with amazing therapists and psycologists that are working to help me cope with my pain, and achieve the goals that are important to me. Through that program we work with not only traditional therapy and cognitive behavioral therapy, but we use mindfulness and meditation and I’m learning how to incorporate that into benefitting my mental health. I also recently began doing yoga, I work privately with a yoga instructor who is chronically ill herself so I’m never overworked and she knows just the parts of the mind to work based off of. 

All I can say is that you don’t need to fit societies definition of happy, to be happy. It’s okay to have days that you want the curtains drawn, and you don’t want to speak to anyone. I’m learning that it’s okay to be angry at people, or at situations. I’m learning that it’s okay to not be content with your life, or who you are all the time. I’m learning that mental health is never something that’s really managed because it’s so unpredictable. I used to depend on others to keep me happy and hopeful, but recently when I was left in the dark when I turned to someone when I was in crisis I learned that it’s not a feasible option. Learn to love and appreciate yourself Mikayla, accept that some days will suck, accept that your life may have pain, accept that it will be different and difficult but so long as you do not accept that this will be your reality forever…you are doing just fine. The world works so hard to tell you to be happy, and how to be happy that when we’re left to our own devices and we’re upset we panic because we feel that there’s something wrong with us. There isn’t. Fall, stumble, succumb, cry, scream, yell, but get back up…always get back up. 

11. What have you found to be the most difficult diagnosis to deal with, and why? – Carmen Hartgerink

You know, I guess we can say that I’m fortunate that I didn’t get diagnosed with my illnesses all at once. Things were progressive. I dealt with one diagnosis at a time, so I somehow got to adjust before the next one came. I still struggle with each of them, but the two that cause me the biggest issues have to be my nerve condition Complex Regional Pain Syndrome, and Mast Cell Activation Disease. CRPS causes me incredible pain, my nerves are hypersensitive and always on overdrive so the slightest, lightest stimulus like even air blowing on my arm is interpreted as trauma and painful. When I get goosebumps from the chills I feel like I’m getting stabbed by thousands of little needles in my arm. It’s not the pain that makes it quite so difficult…but the fear associated with it. When I’m in large groups, or busy areas I break down into tears and panic attacks out of fear that someone is going to accidentally hit my arm and cause me pain. It’s not a second of pain, it’s not a flash of pain, it means at least another few days of burning, stabbing, searing pain that leaves me shaking and in tears and it contributes to the fear of the next time I’m stuck around other people. It’s something I can’t control. 

Mast Cell Activation Syndrome is a condition that basically makes me allergic to life, the cells in my body that cause allergic reactions are always leaking the hormones that mediate allergic reactions and are set off by minimal exposure to things like emotions, temperatures, smells, foods, medications, materials, virtually anything can send me into throat closing anaphylactic episodes. I’ve grown terrifed of the world around me. Anytime I step outside of my house, or even my room I’m at risk of being triggered into a reaction and there’s no telling whether or not that reaction will end with me in the hospital or if it’s something a dose of benadryl can take care of. It’s a scary game of roulette, one that I’d rather not play but I’m learning each and every day how I can live despite these things that threaten my life every day.

12. What is it like to have anxiety and depression, and what are the most helpful things your friends and family can do when you experience them? – Rebecca Lenio

I’m learning that having the two really doesn’t seem to be that much of a rare occurrence. I mean, everyone experiences anxiety and depression at some point in their lives but it really isn’t that rare to experience it chronically and require medication and therapy to monitor it. Though I am on medication for them both, I still live with symptoms that I’m learning how to manage. I want to compare it to that situation in cartoons where the angel is on one shoulder, and the devil is on the other but there really is no angel or devil they both are manipulative and mean. My anxiety makes me panic and become obsessive over mainstream things, I overthink things constantly. If someone doesn’t answer my text I’m already convinced that I did something wrong and our friendship is over, when the case may be that that person is just busy. But that’s when my depression steps in and says, “oh no…it’s you. it’s always you! No one can stay around you, people are tired of you, they’re fearful of you, no one has time to deal with someone with so many issues. It’s pathetic that you even expected company, how dare you?”. Often times it will go back and forth, and that happens with every situation but my amazing team is working with me to help stop myself from the second I feel my heart flutter and I start to go into panic so I don’t always get to rock bottom these days. 

I love that this is a question you asked Rebecca, even though you already do so much for me and know so much about how I work you continue to try and understand and I appreciate that. Anyway, I think the number one thing can be to listen. Just listen. When I come to you in tears, I don’t always need a rational answer and explanation to my situation that may sometimes clearly sound deranged to you. I need you to hold me while I cry, to rub my back, and to tell me that it’s okay, that I’m okay. Or if I come to you when I’m anxious, ask me if I’d like to talk about it and if I answer yes only give me 60 seconds to do so. Allow me to be completely anxious for one minute, and then at that point we can work on deconstructing but sometimes talking about my anxieties makes them more real for me and that can cause a whole lot more issues than I started out with. The biggest thing is to ask, ask before you even ask what’s wrong. Ask before you assume your loved one wants advice. Ask before you assume your loved one wants a hug. For me, I’m a cuddler and I will happily curl up in my loved ones arms any day. 

13. How do you manage food/eating with all your gastro conditions? I hate being sick anyway, can’t imagine more issues. I think so many social situations centre around food and so I can imagine it being hard. Do you miss normal eating or have you never been able to eat “normally”? – Sophie Hobley

Today is one of those days that my shirt keeps popping over my stomach from the bloating. Eating is a challenge, it’s something I wouldn’t do if I didn’t have to…and that’s not because I don’t want to eat. I love to eat, I do want to eat. It’s because I know that once I eat there’s a lot of struggle and a lot of pain to come. I no longer get hunger cues, I rarely feel hungry, I rarely feel “empty”, I rarely have a desire to eat. I sometimes struggle with textures of food, I couldn’t tell you really what sets me off but sometimes it can be something with too many different textures that I don’t like or sometimes it can be something that’s too uniform in texture. It really depends on the day. With my Mast Cell Disease I have to be cautious of allergens in food, and with the way that mast cell works what I ate yesterday that was safe may not be safe today so every meal is always a gamble. I do have my safe foods we stick to when we know my body is on the reactive side, but I generally tend to stay in that range anyway. I’m always advised to eat smaller meals, more frequently but that doesn’t work for me though it may work for you. I eat as much as I possibly can, when I can even if it ends in not so great things. I don’t digest food at a rate that healthy individuals do, that is even more exhasperated by my lack of gall bladder so fatty foods rarely get digested and absorbed and are frequently thrown up. I suppose that’s more than you needed to know, but I do recieve hydration and nutrition through supplementation and IV when I need it!

I can completely understand the difficulty that comes with gastric conditions and social situations, you really don’t realize how much socialization is centered around eating until you can’t do it. But my advice is that as long as you’re cool and confident about it, so will your friends and surroundings. I go out with friends often and will sip on water, or refuse anything that day. My friends usually understand, but for those that are unfamiliar with it I usually just say that I’d rather play safe and not take any risks. Don’t let your conditions stop you from doing anything, explain to your friends that you’re cool with sitting with them. If you want to nibble on a few things I’m sure they wont mind, but if it’s something that really upsets you (and rightfully so! I have those days) then suggest something else, or suggest that they call you after they eat and maybe you can do something before! 

14. Have you had to totally stop dancing? – Shannon Elizabeth Mercier

Unfortunately, I have. With my Mast Cell Disease when I get over heated, I react and that can be anywhere from just flushing and turning red in the face and chest to complete anaphylaxis and I don’t think there’s a special award for going into anaphylaxis mid dance (though if there was, you’d better bet I’d win it). I’m so lucky to still be immersed in the dance community though, and my old dance teachers and studios have always welcomed me back to lay down at the back of the room and just watch the kids run numbers or improv. It took me a long time to get there though, I went through many years where I was bitter and heartbroken that I couldn’t dance and even the sight of a dance shoe turned me to tears but now I’ve learned to combine my love for dance with my illness instead of separating it and I’ve made the most beautiful connection. 

I’m also so blessed because I’m an ambassador for a dance company that fundraises for the child life department at my children’s hospital, On The Floor. Each year they have competitions they hold around the city and then at the beginning of the following dance studio they perform a gala night with dancers they’ve selected from their previous year of competitions, it has a theme and is like a dance show with silent auctions, and hospital ambassadors, and I usually get to speak. It’s my favourite night because I get to watch so many amazing dancers coming together for an amazing cause, and it hits that dance filled hole in my heart. And this year, they changed up their annual Dance-A-Thon which usually is a day of workshops for dancers but in addition to that we also got a bunch of kids from the hospital and made a wicked dance video. I CANNOT wait for you guys to see it! I did get to dance in that, given it was only a few counts of 8 but I did dance. I’ll figure it out one day I’m sure 🙂

To Anyone Whose Birthday is a Painful Reminder of Their Illness

You close your eyes the night before with butterflies in your stomach, knowing that when you wake in the morning it will be the day you’ve waited for all year. It’s your birthday. It’s one of the only days that the sound of your alarm clock doesn’t make you cringe and call out for “five more minutes.” You get dressed and put on an outfit that makes you feel good, and are greeted with hugs and kisses from your parents who shower you with messages of happy birthday. Perhaps you’re treated to your favorite breakfast, or look forward to going out to your restaurant of choice for dinner.

You get to school or to work with a smile on your face and your day is filled with hugs and kisses and well wishes. Your phone is constantly going off with text messages, tweets, Instagram posts and phone calls from people reminding you of how loved and appreciated you are. As the day winds down you can’t help but feel a little bit sad that your day is coming to an end, but you gather with friends and family around your favorite flavor of cupcakes or cake and smile as they sing happy birthday to you. You close your eyes and quietly whisper to yourself a wish to be fulfilled in the days to come, and then you blow out your candles making sure to tell no one so it will come true.

When I was 9 I wished for an American Girl doll, when I was 12 I wished for a solo in dance, when I was 14 I wished for my crush to like me back, when I was 18 I wished for an acceptance to my dream university, and now on my 22nd birthday, I wished to be anywhere but here.

Change is inevitable; as we grow so will our opinions and views on life. However, when you’re thrown into the world of living with a chronic illness things change in ways that you wish they didn’t — like my birthday. I truthfully have never been someone who loved attention, I’m an introvert and quite shy by nature, I was the kid that got so embarrassed she would cry when people sang me happy birthday. I never in my wildest dreams would have imagined that at 22, there would still be tears as I blew out my candles.

My diseases have changed the way that I perceive many things in my life, and it’s made me realize my values and morals and helped me appreciate the little things. As I grew, my birthday no longer became a day of receiving gifts and attention, but a day to be reminded of how loved and appreciated I am by those in my life and a day to celebrate my growth and progress in the past 365 days. Now, my birthday is a bitter reminder of where I could be and where I am not; where there used to be happiness and celebration is now replaced with emptiness and guilt.

Before I fell asleep I made sure to turn my phone on silent so I would sleep through the phone calls that would come in the morning; the phone calls that never came. I truthfully cried more tears on that day than I have cried in a very, very long time. I received heartfelt messages and gestures from people I love dearly, and people I didn’t realize I meant so much to. But I was met with disappointment when I got shorthanded messages, or no messages at all from people who meant so much to me. I buried my head under my blankets, armed myself with tissues, and tried to sleep the day away so I didn’t have to “feel.” I avoided looking at social media outlets — I felt like a failure.

Here I am at 22 years old, celebrating 8,030 days on this Earth, achieving nothing that I had ever dreamed for myself. I am not in school, studying to be a nurse. I am not a nurse, caring for my patients. I am not working, making a living and broadening my experiences. I am merely existing at this point, and dreaming of where I wanted to be. I tried, I tried so hard to make something of my day that would make me happy but when I realized I couldn’t even form a list of friends I wanted to celebrate with, I simply couldn’t bear it. I desperately wanted to be overwhelmed with school work, or stressed with upcoming midterms. I wanted to feel loved, appreciated, and celebrated by my peers. Instead I mourned and grieved where I was supposed to be, and tried to accept where I was.

That day I wrote myself a letter, a letter that I won’t open until my 23rd birthday in another year. Reminding myself that I create my own timeline, society doesn’t get to do that for me and it doesn’t get to do that for you either. The only thing that stands between me and self-acceptance is society; the pressures of where I should be, who I should be, what I should be doing drown out what my heart is telling me. There is no statute of limitations on our dreams or goals, and our birthdays aren’t symbols of that. Our days are already often filled with self-doubt, pain, depression and frustration, but it took me 22 years to realize there is always something good in those days — even in the ones where I don’t wait to get out of bed.

In my letter I reminded myself that my birthday is not a day to scold myself or grieve for what I could have had, and where I should have been. It’s a day to celebrate my existence, another year that I made it through hardships and obstacles I didn’t think I would make it through. It’s a day to create new goals, and find ways to attain the ones I couldn’t. It’s a day to be grateful that I bet the odds, that I watched 365 sun rises and sun sets. It’s a reminder that next year if I find myself in the same mindset that I immediately switch my mindset to celebration not degradation.

So if you find yourself stumbling upon this article on your birthday or you find yourself feeling as I did on my birthday, then listen up: at the end of the day I’m not doing all that I dreamed of doing at 22, and you may not be doing what you dreamed you would be doing at this age but that does not change how grateful I am to be here, or how grateful I am that you’re here. Here we are, 365 days stronger, 365 days wiser, and 365 victories simply because we got through each day. Even if you don’t believe it, there is someone out there celebrating and appreciating your existence. When we’re standing toe-to-toe with reality, we can do one of two things; we can break and become undone at where we should be, or we can celebrate all the growth that resulted from the hardship we’ve endured all year.

Things have changed as I’ve grown, but one thing that has remained the same is that I am hopeful; hopeful for a better tomorrow, a kinder heart, more love in my life, and attainable ambitions. People may not always understand the way you feel, and may not always say the right things, but I promise you that your existence and growth over this last year is appreciated, it is important, and it is celebrated.

In each day there is something to celebrate; some days it can be as simplistic as getting out of bed but other days it can be a celebration of great magnitude. Birthdays are just that; they are no longer a symbol of where you were versus where you are and wanted to be, but a celebration of your mere existence. I ended my day surrounded by my family, blowing out the candles atop of the cake I couldn’t eat… and although I can’t tell you, I’m confident that you know what I wished for this year.

The Gift That Keeps on Giving

My tiniest, most precious gift,

It’s been nearly two years since I first heard your sweet little voice, and got my first peak at your loving, giant heart. It’s been nearly two years since the sun began to rise again, nearly two years since my world began to make sense because even though you didn’t know it, you came into my life when I felt like it was a giant game of scrabble. The people and words that I had put so much value on, seemed to be meaningless and I was left questioning who I was? What was I meant to do? Where did I fit? I didn’t know how I could put it together to show you that life was okay after illness, because even though life was–I wasn’t. But you put me back together in seconds, you didn’t say much but I knew that from that day forward there would never be a day without sunshine in my life because there would never be a day without Jess.

Now we’re here, almost two years later. So much has changed, we have changed. You have grown into this wise human being that’s learning about how life is viewed through different perspectives. You’re learning to replace your old anxieties, with excitement and that excitement into hope for your future. You’re no longer a little girl, but a mature young woman and it happened in the blink of an eye.

Your reality has changed, you went from learning that you had to fight for every single day to waking each day with a grateful heart that you get to live it. Your reality has changed, but your heart has not. You’re learning that the world around you isn’t always the kindest, that not every heart sees the good in the world like yours does. You’re learning that some people have different ways of expressing the hurt that they’ve endured in their lives, and that not everyone is able to turn adversity into beauty as you have. Some people witness the darkness, and close themselves off from any posibility of experiencing that again and unfortunately that blocks out the light too. I’m thankful that you’ve remained my little optimist, shining in the joy-filled shadow of your intelligent and soulful mother. I’m thankful that even though you are navigating the world that is big, and scary you are still taking the time to appreciate the way the sun shines through the trees, or the songs that come on shuffle when you’re getting through your day. 

You’ve learned to lead, and the power in your words and presence alone. You’re learning that sickness, is not weakness; and that sickness is not an identity…or your identity. You’re learning that your world is what you make it, and that there’s a way to fit in every single thing you find important in this world into your heart. You’re learning how to be a patient, but to be a student. How to be a student, but to be an educator. How to be an educator, but how to teach and share all that you know.

I’ve said all I can say a million times. I’m in awe of your every move, and watching you grow into this young woman who has created this identity for herself that is essentially a real life superhero…it just makes me swell with pride. I’m loving, loving you and I’m loving watching you grow and change as you navigate through each day. There are so many times that I find myself questioning how I possibly could love you more, and then it happens…I find new ways to love and appreciate you and your existence and I don’t think I’ll ever run out of things to love. You’re a real class act, kiddo.

So maybe my little gift isn’t so little anymore, but as she’s growing she’s learning how powerful her voice is and in that powerful little voice are words that are packed with punch. It’s like a bug you can’t shake, more and more people are falling in love with this little girl and I am more than thrilled to share her with the world.

Keep growing and keep reaching sunshine, you’ve got this world in the palm of your hands.

My Greatest Gift, in The Tiniest Package

I have always been the type of person who needed to know what was going to happen. But when I first began this journey ten years ago, when life threw a range of symptoms and diseases my way, including rare liver, gastrointestinal and allergy conditions, the last thing I had was control. Thanks to some incredible gifts that my illnesses have given me, however, I’ve learned that every day may not be good, but there’s something good in every day.

Yes, that’s right. I said my illnesses have given me gifts.

These gifts have come over time. They weren’t immediate and I only began to see them when my heart was ready. Some are simple, but breathtaking — a good belly laugh, a new set of sheets on my bed or hearing my favorite songs on the radio. But one of my greatest gifts came in a tiny package, in the form of a sweet 11-year-old girl at the time.

Almost two year ago, I got a message from a woman named Karen, the mother of Jess, a little girl with a brain tumor. Jess and I attended the same children’s hospital, and she explained that her daughter could really use someone who understood what she was going through. Although I don’t have a brain tumor, I did understand what it was like being sick at the prime of your childhood.

When I met Jess, she was sweet and shy, with a tiny voice like Minnie Mouse. She carried a stuffed teddy bear wearing a tiny t-shirt that said, “One tough cookie.” During that first visit we talked, laughed and shared stories about our illnesses and our times within hospital walls. Then, just as quickly as it began, our visit was over. 

My visits to Jess continued, and each time we played silly games to get to know each other, talking about our favorite smells, songs we can’t stand or foods we love to eat. We also talked about what made us anxious and sad. For her, it was going to the hospital for appointments. To help ease that anxiety, I decided I would go to her next appointment with her. And although I was determined to make it a positive visit for her, as she did with everything in her life, Jess made the visit positive for me.

For example, her tumor, which she named Tommy, isn’t something that’s trying to hurt her, but something that will help her grow. Chemo isn’t damaging her, it’s helping her get better. She is always there to remind me of the beautiful things in life.

Helen Keller once said, “Keep your face to the sunshine and you cannot see the shadows. It’s what sunflowers do.” That is Jess. That’s why I nicknamed her “my sunflower.”

I was given the sunshine that day. She’s taught me that life doesn’t have to be perfect to be wonderful, and that beauty can be found only when you want to find it. With Jess, I always want to find it. I hope everyone find their own Jess one day, and I hope that she inspires you.

As Jess and I always say, the best is yet to come. Hang in there.