Cake Mix and Balloons

Today was World Rare Disease Day. The day dedicated to increasing awareness, and subsequently funding, for the varying rare diseases out there.

Talking about it with my friend I had mentioned baking a cake and getting a balloon to celebrate. A party of one.  There is a lot to be proud of.

She talked about how she was baking with a mutual friend of ours and that they would bring the party to me. Not reading much into it, I went on with my day until I got a text message from each of them.

Can we come to your house to bake a cake?


When I was younger my parents worked tirelessly to make sure all of my needs were met. Isolation was something we needed to combat. My parents started hosting dinner parties for my friends and I, Interactive Food Night. This concept worked because we had control over the environment I was placed into and it was an activity we could all do, eat. On those nights we would try out hand at making something new; Fondue, ravioli, sushi we did it all.

when the girls showed up with eggs and cake mix in hand they had two balloons.

She had taken time out of her day to get me balloons. She had remembered me saying I wanted balloons but probably wouldn’t feel well enough to go and get them.

The day became so little about these diseases I fight each and every day and all about livng. Living life surrounded by good people. Now, our cake may not have been a masterpiece by any means but i think today painted a beautiful picture.

As chronic illness sufferers, relationships can be tough. It had to find people who are understanding to the fact that you have a different set of needs that often change in an instant. Find those who will show up at your door without hesitation because i promise they are out there. I promise they are more than worth the wait.

Today was a rose.


Two Years

I was given two years to live.

You know that it probably isn’t a great sign when the specialist you are waiting to see tells you that if you don’t get onto a shorter wait list, you won’t live to get to meet them.

I’ve made it a year and this is what I have to say;

  1. When someone puts a limit on your life it does effect the way you choose to live it.
  2. You will want to make choices out of fear of the unknown but those make out of love are so much more valuable.
  3. you will find your people. You will meet other sick people and they will understand. You will meet people who aren’t sick and try their best to understand. that is all you have ever wanted.
  4. You still hate stairs and climbing hills.
  5. Everything is temporary. The love of God isn’t.
  6. Telling people you are a Christian is allot less daunting then you make it out to be in that mind of yours.
  7. You will miss getting to eat spaggetti and meatballs.
  8. You will learn to love to paint.
  9. That blog thing you have been talking about since you were 10, you’re doing it.
  10. You have been out of physical therapy for a year and a half and haven’t once regretted that choice.
  11. You are learning what it means to follow.
  12. You have learnt that potential isn’t enough you have to work har for your dreams, even if you have too many to focuse your effort.
  13. Being goal oriented isn’t selfish.
  14. You wont have everything figured out.
  15. You still cant drive.
  16. You will be thankful for your life in a way you hadn’t yet experienced
  17. You want to get to grow up.
  18. You will be off medications once again.
  19. Choices about your health don’t get easier.
  20. You know nothing compared to what you will someday.
  21. You still love life with all your heart.

Here we are halfway through that two year mark and while I know those words may have been uttered out of a professionals mouth the words of my creator is what matters most.

Running Marathons

For weeks I have been dreading going to the doctor. Now as someone who is chronically ill, this may make no sense. None. It didn’t to me until it happened to me.

I couldn’t understand why people wouldn’t want to know what was wrong so they could “fix it” but what happens when you realize the fixing isn’t coming.

I forgot. I forgot how I used to fight. How I used to see God above all thing and as the creator of all things. If you see Him at the top, dotors don’t seem all knowing any longer. While I trust, and pray, that God would place me into a set of capable health care providers, where he wants me, I never believed they had the final word. If God can make the entire universe in six days He can heal me if that is in his will.

I forgot that maybe this isn’t God taking away another piece of my health, like so many times before, but maybe He is protecting me in more ways then I am aware of. Maybe the endless test results and normal numbers really do mean that I am healthy in that aspect. I failed to see that God wants me to be healthy just as much as he has a place for me to be sick. It doesn’t have to be one or the other.

As the case with many sick kids I was mandated to see a psychologist. The idea was to asses my mental state and help my adolescent mind deal with the idea of a lifetime of illness.

My psychologists never understood my mentality. I am not textbook and I don’t make sense. When they would  ask what my goals were I would always answer to run a marathon. That was always followed by a conversation about having to readjust to my expectations for my life. They had no concept that from the beginning of time God has had my expectations in mind. He knows what I am capable of and where He wants me. I still believe that one day I will run a marathon, if not in this life then when I meet my maker.

As I walk into that appointment tomorrow it has felt like I have run a marathon to get there.


Fear Is Bigger Then Monsters In Closets

In my life, I have been afraid, of swarms of bees, being stranded on an island, or even high up places. There is one fear though that is bigger. I’m afraid of not living. Yes, that is right, I’m not afraid of dying but the chance to miss out on living.
My health is a mess and each day it sinks in a bit more that I will never be healthy. I have to go through a grieving process that this ideal body that I once longed for isn’t what I have got. This is something I have been struggling with for the past few months. I have a body that is fighting to function. One that is covered in scars from being poked and prodded more than a few times. My body is a canvas for the life that I have lived and each mark has a story; It is there for a reason.
So how do I deal with fear? I avoid those things that scare me. I bottle it up and don’t tell anyone truly how scared I am, and yet I am telling the entirety of the internet. I am afraid to go to the doctor because all I am ever told is how I will never get better. How what I am dealing with they don’t know much about. How they don’t know what exactly is wrong with me except that I am one very sick girl.
I am afraid to tell people because I don’t want to worry them. I don’t want them to feel the depths of my medical woes so I shelter them and filter the information that I think they can handle. Nobody knows about the dark nights in the ER bargaining for my life with God or how I stop breathing frequently in an attempt to control my pain. I mask my symptoms so that I don’t make things hard for others. I never want people I care about to think about me differently or to be overwhelmed by me.


In the past, I have had countless people judge me for my health. I don’t expect people to understand what is happening to me especially since I don’t let people fully in. I have had people tell me that I am faking being sick, that it is a choice, or that it is too hard to handle. It’s ironic that something that I am most scared of is the same thing that I can’t fully hide even if I try my best.
I can’t hide my discoloured limbs, I can’t hide my limp as I wobble along, I can’t hide my episodes of brain fog and mental confusion.
Sometimes the hardest part of being sick is accepting what is happening to you and allowing others in to help you through that process.

Lessons Learned Crying In A Coffee Shop

If you break down in a coffee shop people will care.

The middle aged men’s concern will be shown through their efforts to ensure a safe ride home.

The twenty something year old college student will look away so that you don’t feel bashful for the salt leaking from your eyes.

The barista will make small talk and offer you a free cookie, because who doesn’t need a cookie.

People will mop circles around you, literally and figuratively.

And despite crying to someone who has nothing to say to you;

A room full of people will have things to say to you.

A room full of people will care.

Society cares if you are doing okay, even when it feels like you are a fish in a mighty big pond.

So if you ever forget that you are important, cry in the shelter of a coffee shop because you will see that society isn’t as dark as it is portrayed to be.


Little Lies Have Big Implications


When I was in 11th grade I was apart of an initiative to help young teen girls transition into high school. I worked with eight wonderful girls over the course of a year. First meeting, I asked for three things they liked about themselves. Not one of these beautiful girls could tell me three. I was shocked as in the short amount of time we had known each other I had found so many things I loved about them. I proceeded to tell them five to ten things I liked already.  Their infectious laugh or their witty sense of humour. That moment has stuck with me.

Since then I have watched the Unveiled Campaign Launch.  In 2014 Ainsley Britain started a campaign to help people, although it is mostly aimed at teenage girls, to be able to see their worth. I had the pleasure to speak with Britain about how Unveiled came to be. Britain spoke to me about how “Unveiled began when [she] was struck by a few video ideas in the middle of class during [her] time at Belmont University.”  These video ideas stemmed from the idea that Britain had seen people around her battle issues, such as eating disorders and self harm. Britain “realized that the root of all of these issues isn’t ONLY the lie “I’m alone” but even deeper lies like “I’m not worthy” or “I’m not good enough.”  this prompted Britain to “script  a few videos & that was the birth of Unveiled!”.

The unveiled campaign releases monthly videos that promote healthy relationships with yourself as well as others. Viewers can apply to have their stories shared on the campaign’s website either through video’s or blog posts.

While mental illness can not always be preventable the campaign works to target those times that it can. 10% – 20% of Canadian teenager’s face mental illness making it the single largest group of disorders for the demographic. In fact, 3.2 million Canadian youth are at risk for experiencing depression between the ages of 12 – 19 years old. While the campaign believes “that if we were to love ourselves as God intended, we would be healthier in every aspect of life and more able to pour out that love to other people.” Britain claims that the ultimate goal “is [to] equip teens and young adults to see their worth and in turn, pour out love and confidence in others as well so [to] continue to build each other up and create a positive, healthy environment.”

Britain has grown up with strong woman in her life spreading similar messages to the ones she is today. Britain credits her “mom [as]  a HUGE inspiration. This comes to no surprise as Britain’s mother runs a Hearts of Hope in Lafayette, Louisiana. Hearts of Hope provides support to those affected by assault. Britain also reflects on high school mentors and friends as people who have been “incredible examples … and whom [she] want[s] to be to others.”  

Britain walked me through the process of going from a lightning bolt idea to a fully funded campaign. “Honestly, I still don’t know exactly where to go with Unveiled sometimes. When one has a dream or idea, it’s a multi step process. I usually just pray about what’s next for Unveiled & continue moving forward, one step at a time. I would write down goals, short and long term and then try to fill in the blanks on what you need to get there. Once you visually see them, it’s usually easier to see what’s next in the progression of the dream or what needs to be altered. Then it grows, one step at a time. You have to be willing to work really hard at it.” It is through hard work that Unveiled has grown into what it is today.

When asked about whether Britain felt there was a pivotal moment for the campaign her leadership skills shined through her response. Britain emphasized on how it is the hands of many who are making this a reality. Britain gave credit to the volunteers who work on the campaign;  “the more volunteers [they’ve] gotten, the more it[s]  grow[n] and evolve[ed] into a more beautiful thing. [She] so appreciate[s] every helping hand that has assisted in the growth and continuation of Unveiled, probably more than they know. What started as a few videos became monthly videos, a blog, story sharing & a resource page.”

I ask you, can you name three things you like about yourself?

i am unveiled photo

You can find out more about The Unveiled Campaign at

@unveiledcamp on twitter

@unveiledcampaign on instagram


BAILEY (3)2015 has been a wonderful year. Not to be confused with an easy one. The biggest change I have seen in my life is how radically my faith has grown. I have stepped out on faith and seen myself, more so then ever before, prayerful consider where I am headed. Everyday I am learning more about God. I have learnt that if you give God an inch He will give you a mile. I cannot wait to continue my walk down for many more miles.

To determine my 2016 goals, I used the #GOALsheet from Gennean’s blog to help me work through what I want to achieve this coming year.

Write the vision; make it plain on tablets, so he may run who reads it. For still the vision awaits it’s appointed time; it hastens to the end – it will not lie. If it seems slow, wait for it; it will surely come; it will not delay.

– Habbakuk 2:2-3

I started by spending three minutes writing as many goals as I could. I came up with sixteen.

  1. Follow Jesus
  2. Go to Disneyland
  3. Give more then I take
  4. Keep blogging
  5. Go to university
  6.  Graduate high school with straight A’s
  7. Journal, journal, journal
  8. Start interactive food night again, a night where friends come together and cook. Lots of bonding can be done over a bowl of pasta.
  9. Paint more
  10. Sail
  11. Write for a newspaper
  12. Donate my time and my money
  13. Be happy
  14. Take a roadtrip
  15. Have more coffee dates
  16. Complain less

Next I looked at my list and committed myself to pursuing three dreams, themes, or passions over the next year. surprisingly my three came to me with ease.

  1. Follow Jesus
  2. Continue my education
  3. Invest – in relationships and the community

God wont give you a desire unless he intends to fulfill it. Let your faith rise up & soar away to claim all the land that you discover.

– SA Keen

I was left with a series of questions.

What was “so 2015” that I wanted to leave it behind.

  • Complaining
  • Worry
  • Selfishness
  • Comparison

My focus for this year would be…

  • Jesus
  • Being grateful and thankful
  • Stopping and smelling the roses
  • Writing
  • School
  • Relationships!

Picking up on relationships, I thought about all the people who I am thankful to have in my life in this new year. These are my wishes for these lovelies for this next year. 2016 will be filled with Joyous relationships.

  • Maggie – That she is more at peace with her future.
  • Natalie – That she is still as happy and bubbly.
  • Sarah – That she finds her place in this world through her decisions about school.
  • Emily – That she keeps her kind spirit and doesn’t become jaded by the world.
  • Ali – That she never looses her fire.
  • Laura – That she keeps her adventurous soul and stays grounded with the company of serenity.
  • Sally – That she stays excited over the little things in life.
  • Kristin – That she continues to live her life boldly.
  • Kate – That she continues to thrive and stays very happy.
  • Silvia – That she never lowers her standards and keeps those wide eyed dreams.
  • Lexey – That she is able to figure out what she wants from this life

There are so many more people who I love and want to see accomplish the world in the coming year.

I decided to pick a work to represent 2016 – FOLLOW.

Over the last 3 months I have had to make some hard choices. Choices that I truly felt God was calling me to. I realized for the first time just how loving and merciful our God is. He is so good! I learnt that it is a daily choice to choose God and sometimes that isn’t easy but it is oh so worth it. I have truly never been happier. I have learnt that when I give everything to Jesus that is when I find true peace and happiness. I not only want that for the next year, but all of the ones following.

I want Jesus forever and always.

I want to make a conscious effort to focus on that this year, on Him.

lastly, I divided some more refined goals into six categories. Please note I eliminated the financial section of the #GOALsheets as I am a mere high school student.


  • Continue to blog
  • Write for a news outlet


  • Get some new socks, I can explain this one I promise.
  • Be apart at least one sport at any given time.


  • Invest in my friends.
  • Make sure people know how much I love them.


  • Trust God and follow his guidance.


  • Graduate High School
  • Start university
  • Write letters and postcards
  • Journal more often then not


  • Love abundantly
  • Listen

2016 I have loved getting to know you thus far.