I've Got This Feeling...

My life is complicated. At 12, my medication list is at times longer than those of senior citizens. I have more specialists than there are teachers at my school, or at least close to it. I have seen a doctor or health professional at minimum once a week for the last few years. I spend more time in a waiting room or doctor's office than I do anywhere else. My health prevents me from going to school for extended lengths of time, which does nothing to help build my friendships. This is my life, for better or worse. I am the one who has to live with having severe Crohn's Disease, Ehlers-Danlos Syndrome, Psoriasis, and other conditions. I'm the one who has to live with an ostomy after my colectomy, as well as a feeding tube. This is just the way my life is. 

I had a recent experience which has been on my mind a lot and really bothering me. I had an encounter with a few mental health professionals who had completed an assessment focusing on the way illness has "invaded" my life. Because let's face it, chronic illness is just like an invasion. During the initial assessment meeting, my eyes had started to tear up from the dust or lighting in the room, or else from trying to hide a yawn. One of the mental health professionals was quite quick to point out in front of the group that I started crying when we started talking about a certain subject (I can't remember what it was). He went on to place all of these feeling words on me, and to make sweeping statements that in no way applied to what I was feeling. But I'm one of those kids who won't disagree with adults, at least right away without thinking about things first, so I didn't jump up and say "whoa" even though afterwards I certainly did. 

On our recent follow-up with them to receive the results of their assessment, it left me wondering who the heck they were talking about, because it certainly wasn't me. Another mental health professional said that I was likely internalizing my feelings because I didn't want to burden anyone with how I felt, and that when I started crying during the meeting it was a sign of deep, buried feelings. I think I'm pretty clear with my feelings and have expressed them plenty of times in very public ways such as being published on The Mighty about my experiences being bullied, and living with an ostomy. 

I'm also "too accepting". It is thought that I jump to accepting my health problems too quickly and don't allow myself time to feel the negative. That acceptance is the way that I use to escape from everything that life has thrown at me.  And I jump too quickly to acceptance because I feel "why bother" talking about the negative. Which goes hand-in-hand with me being "too positive", which I also use as an escape route. 

This has been really upsetting for me. I've worked hard to accept that my "old self" is just that, my old self. My life has changed dramatically but it's still a good life. My mom has always said since I was born that I have a choice when it comes to bad things; I can either let it eat away at me and be miserable, or I can find a way to work around it, to adjust. 

Being chronically sick takes a lot of energy out of me. Just to get through a school day right now requires every bit of my super-human strength. Feelings require energy too though, and if I spend all of my energy on focusing on the negative, that's less energy I have for everything else. Don't get me wrong, I still cry, I still get really frustrated and go off on 30 minute rants. But then I move on. I have to. If I don't keep moving on, what good is that going to do? If I chose to stay miserable, to stay in that place of anger and sadness, wouldn't this have more of a negative effect? So I chose to go to my happy place. My happy place is helping others. The feeling I get when someone says "Thanks Jacob, you're a great friend", helps me. It gives me strength to keep going. It inspires and motivates me. It makes me feel like I can accomplish anything. 

What I am having a tough time accepting are the assumptions made about me without really getting to know who I am. Things like "Well a lot of kids your age Jacob feel that....", or "a lot of kids that we see like you feel....", are not predictive of how I'm feeling. I was more than happy to discuss my feelings directly when they were chatting with me. But they also needed to be willing to hear the answers that I was giving them and not put words in my mouth, or tell me what I'm feeling based on the way "most other kids" are.  I am not "most other kids", I am ME. I am Jacob, and I have feelings that I'm not afraid to share. This confuses me. I can't talk about problems I don't have, and because a lot of other kids feel differently than I do, it's a problem? Since I don't have problems with being overly angry, or depressed at my situation, that's also a problem? But then on the flip side, if I only spoke of the negative, wouldn't that also be a sign of problems? And if I deny that I feel this way, than I'm just stuck in denial. And here I thought that the goal of the game was acceptance and adjusting to your new life by using positive coping skills. 

I've decided to stay positive, that there's nothing "wrong" with being me. I like me. I think I'm doing an amazing awesome fantastically superb job coping so far. 

8 Things I Say Instead of "It's Going To Be Alright" as a Parent to a Medically Complex Child

"Don't worry, it's going to be alright".

It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.

I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.

This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".

But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?

My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.

I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.

How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.

I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:

We can get through this.
You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.

A HUGE Thank You to the Ladies of Leaside Curling Club

Kindness. Generosity. Philanthropy. Charity. These are words that matter, words that will make our world a better, more gentle place for everyone. The wonderful, amazing Ladies at Leaside Curling Club have all of these characteristics, and then some.

I was honoured to once again be chosen by these ladies to have Jacob's Healing Rooms be the recipient of their annual end-of-the-season charity golf banquet. Jacob's Healing Rooms is my vision to create a more child-friendly place at Sick Kids Hospital for short-stay treatments, such as regular IV medication infusions. This is my dream and how I want to be remembered, as the person who did something positive to change other people's lives. It may be my dream, but it takes a whole village to make my dreams into a reality. I've heard a lot about how the curling community as a whole loves to help out special causes, and I've been so fortunate enough to experience this with not only Leaside Curling Club, but also the Whitby Curling Club and Oshawa Curling Club too! The response from the curling

community has been so overwhelming, but in a good way!











Our event was held on May 31 at the gorgeous Thornhill Golf and Country Club. The first thing that I immediately noticed was that a lot of the ladies and the staff were wearing my Jacob's Healing Rooms t-shirts! It was so touching to have people believe in my cause so much that they were
wearing t-shirts to promote it. I was so thrilled to be able to speak to the ladies about how Jacob's Healing Rooms will help children to heal and life as a child with a chronic disease. I hope that I was able to inspire at least one other person to go and make their own positive change in this world.

Thank you ladies for once again showing me what kindness can do. Together we raised just over $5000, which will go a LONG way towards making my dreams come true. We still have a bit to go, but you all have reminded me that if you can dream it, you can make it happen with a lot of work.




You can read more about my Jacob's Healing Rooms plans by clicking HERE.

Welcome to the Dark Side

I've been struggling to put these words down on paper. Struggling to get them just right, just perfect, just exact enough to tell a story that you will want to read. With the way my ADHD brain jumps from idea to idea at speeds that make warp speed seem like standing still, combined with my awesome perfectionism (I've mastered the art of feeling the need to be perfect) and my dyslexia, putting words to paper can sometimes be a very slow go. Especially when it's a part of my life that I don't normally share. And especially as talking about all of this brings a flow of tears. This is a post about life on the Dark Side.

Anyone who follows my blog knows that I don't normally share the darker side of my feelings. Why? One easy answer: I care what people think. I want to inspire others. I want to be uplifting. I want to help others see that there is hope, that there is light, at the end of the tunnel. Then I got to thinking about the reasons I blog in the first place; to help other people. Sharing our stories is a way of connecting to others, a way of saying "Hey, you're not alone, look at my story". Our stories, good and bad, are part of our journey and people need to see the good, the bad and the ugly. Life isn't all unicorns and leprechauns. Real life has the good and the bad with it, and sometimes the bad does feel like it overpowers the good.

In another month, I will celebrate an anniversary. It will have been 4 years since the onset of my Crohn's Disease symptoms. In two weeks, I'm going for my 16th trip to the Operating Room. Until that time, I'm trying to avoid my 8th major hospitalization. I can't even tell you the number of pokes, painful tests, painful procedures like rectal ultrasounds and painful treatments that I've had to live through. That seems like a lot but in reality, that's just the physical stuff I have to go through daily. There's also a lot of emotional stuff that goes on in the background.

In 4 years of treatments, I haven't caught a break. I haven't felt any major improvements no matter what combination of drugs the "team" throws at me. In fact, since November I would say that I have physically felt even worse than I did when I was so sick that I needed my bowel out. I have been living every day in constant tear-inducing pain, unable to get quality sleep, having severe problems with nausea and vomiting (I feel like I should carry a bucket with me everywhere I go for emergencies), and oh yeah, did I mention the pain?! Every week brings a new health challenge, and it's hard to know when, or if, it will stop. I get people saying "if it were that serious you'd be in the hospital" or "you must be feeling better since you've been to the doctor". Unfortunately, it doesn't work like that in healthcare. When you are a chronic patient, you get stabilized at the hospital and once things are stable, even if they are stable on the horrible side, you are released and wait for the next step on your medical plan. Going to the doctor doesn't always make things immediately better.

 I've been to see at least 1 doctor every week for so long that I can't remember a week without a doctor's appointment. Every time I see a doctor, I hope beyond hope that this will be the visit that will change everything. I hope for relief, for some type of improvement. I hope to be able to describe perfectly what is going on with my body. I hope for the doctor's to listen and believe me, and to be patient with me when I break down into tears as I'm talking simply because it's overwhelming to talk about every single little problem all at once. I know that my confusing, complex health problems are overwhelming for health care professionals, but they're also overwhelming for me to live with daily.

I know I'm going to live with Crohn's Disease for the rest of my life. There is no current cure for it (and yes, I've tried different diets, supplements, medications, meditations...). I know that I should say that "I haven't let it control my life", but to be honest with you, it sortof does control my life right now. I'm not sure how it couldn't. I've had to give up being a Scout, as it's hard to go out and do physical activity like rowing a canoe, or going on an hours long hike, when it takes all of your energy just to get out of bed. I haven't really been to school yet this year. I can't go into the classroom and throw-up on my classmates, and I fear my tears and yelps in pain would only distract my friends. I've been away from school for so long (most of the last 2 years) that I don't really have any "normal" friendships. My life has become a series of waiting rooms, and waiting for waiting rooms.  And waiting for treatments to work, or more accurately, waiting to find a treatment that does work.

Welcome to my Dark Side.

It's heavy. It's crushing at times. I ask "why?", I ask "what's the point?". I get angry, frustrated, and exhausted. I cry. Nobody wants a dark side, and it's not something that we just go up to a stranger and start talking about. It's definitely not a conversation starter. In fact, most people get uncomfortable when you even come close to talking about the negative side of chronic disease. The socially acceptable answer to "How are you today?" is definitely not "Horrible, thanks, and you?".  Yet that is the honest response. Some days I really don't have much to say that is positive, other than "I'm alive, breathing and with a heart beating". And that truth makes a lot of people uncomfortable. I don't mean to be negative, I just mean to be real. It's always okay to be the real you, and real people have real problems.

How do I combat the Dark Side? Purpose and Belief. There has to be some point to it all. I believe that all of my experiences have had to happen for a greater reason, that there has been a purpose behind the suffering. Jacob's Healing Rooms fundraising project gives me purpose. It lets me take the ugliest of situations, the worst nightmares, the stuff that the Dark Side is made of, and make something beautiful come from it. It's a symbol of my Light Side doing battle against the forces of evil. Doing something to help improve other people's lives is my way of taking back a little sliver of my life. Every positive word someone shares with me, lets me know that what I'm doing is making a difference. In turn, that makes my Light Side glow a bit brighter. That keeps me motivated to keep doing what I'm doing. It's one of the better cycles that I like getting stuck in. The Dark Side might be scary, but it's not the whole picture when it comes to who I am. It's simply a part of me that reminds me of where I come from. It reminds me of the mountains that I've already climbed, and that my scars are symbols of battle wounds. My Dark Side makes my Light Side all that much more brighter.

Why Giving Matters to Me

Just over a year ago, my dream idea was born. After spending several long, boring days in treatment rooms receiving IV medication for my Crohn's Disease, I decided that a change was necessary. I wanted to make a place that encouraged healing, that helped kids feel as relaxed during their treatments and distracted from the reality of having a chronic, incurable illness. I wanted to create a way of changing the treatment experience so that kids that came after me, wouldn't have to dread their hospital trips. When I started out, I had this single picture in mind, a vision that I call Jacob's Healing Rooms. You can click here to read more about the changes I want to make. In the year that I've been fundraising, I've raised a total of $17,000 to create child friendly places of healing. But along the way my vision became something different. 

Through sharing my Crohn's, ostomy, and bullying experiences, I've found that Jacob's Healing Rooms is about so much more than just transforming a space; it's about hope, kindness, friendship, encouragement, and inspiration. My vision has changed into something bigger over time, I want to be able to inspire other people to find their own ways of giving back, whether that's as simple as holding a door open for a stranger, or as big as ... well, as big as you can dream up. It's people that offer the world kindness that change this world for the better. 

One day I won't be here. I've often thought of what I want people to remember about me after I pass, whether that's tomorrow or 90 years from now. I want people to remember me as someone who made a difference. Someone who no matter the personal challenges, never gave up on achieving their dreams. I want other people to see that every single one of us are capable of creating change and making this world a better place for all of us.

I'm 1/3 the way to my fundraising goal of $60,000 but I'll never be done giving back. Creating change is something positive that I can focus all the negative stuff in my life on. It creates a purpose from all the negative medical things in my life. Giving matters because giving feels good. 

Mental Health and Chronic Illness

It's #BellLetsTalk day about mental health, and I've already posted about my experience with depression but I wanted to share more about how my physical health also has a huge impact on me and how I want to make this easier for other kids like me.

It's been almost 4 years since I had my first onset of a Crohns Disease flare. In reality, I'm still on that "first" onset since I've yet to achieve remission status. In 4 years I went from being an active kid who was always wanting to be on the go somewhere, to someone who rarely feels they have the energy to leave the house (at least much of the time). My entire life has changed. I can no longer participate in Scouting activities that I really enjoyed, I rarely have contact with my school friends since I've been too sick to go. I haven't had a birthday party in 3 years, and since I'm not at school, I rarely get invited out with friends. I've spent many of the past 2 years worth of holidays at the hospital. Over such a short time, my life has turned upside-down.

I'm completely aware of my medical situation. I know that I've exhausted my medical options for the moment and that how I'm feeling right now might be as good as it gets. I get angry at the disease, at what it's taken from me, and the treatments that I have go through because of it. I've had tears adjusting to living with tubes and bags hanging off of me. I've asked "Why me?" and go through periods of being jealous of my other "normal" friends at school who are living "normal" lives. I will never live a "normal" life in the sense that most people would consider normal. I've had to accept that my normal involves machines, blenderized meals, and medical equipment like my dancing IV pole partner.

I knew that I couldn't let this disease define me, that I needed to take all the negative that had been thrown at me and create something beautiful from it. When I first walked into the outpatient treatment rooms at the hospital for my first Remicade IV treatment (often an 8 hour day), I was scared and worried that this treatment too would fail. I remember walking into the room and being completely shocked at the emptiness, the lack of color or interesting distractions. I felt like I was walking into more of adult clinic instead of a major children's treatment facility. It was depressing. You felt a heaviness just walking through those doors. Let's face it, medical stuff is scary. As a child when you are looking at the thought of having to do these treatments regularly, it can be downright terrifying.

I decided to do something about this. I know from my time in other parts of the hospital, that having a supportive and engaging environment can make a huge difference in the physical healing and mental health of patients. I decided that the environment for the outpatient treatment rooms needed to change to help give a boost to kids' spirits and help to encourage healing. Jacob's Healing Rooms is going to help update the treatments rooms to make them child-friendly places of healing. I'm going to install tablets at each treatment chair, have the walls painted, distracting sky-panel covers for the lights and a sensory bubble tube machine in each room to distract and liven up the environment. I may not be able to make the disease go away, but I can help to make a difference in the lives of other sick children needing these treatments too. And in turn, that makes me feel like I'm making a difference, that I'm needed.

Today might be #BellLetsTalk day but let's not forget that the struggle that people living with mental health and chronic illness face is very real each and every day.

Mental Health and Me

Today is #BellLetsTalk day, a day to become more aware of the mental health issues people live with every day and how we as a society can make it better. In honor of today, I'm going to post about a very difficult time that I struggled through which is still very difficult for me to talk about.

I am a survivor. At the age of 7-8, I felt like I wanted to die. A person close to me in my life in a position of trust who was supposed to love and care for me, didn't. Every time I did something wrong, I'd be left wondering "What's wrong with me? What more can I do to make them happy?". I began to see, or at least really believed, that I was to blame. I felt like there was something unlovable about me and I felt worthless. I felt like I had nothing of value to say or to contribute. I couldn't make a choice because I'd have to stop and analyze the "consequences" of each choice, whether it could possibly get me into any more trouble. I began to feel so paralyzed by wanting to make others happy and avoiding making any mistakes so that things wouldn't get any worse. I felt that if I were "perfect" that I could make others love me and that by being perfect it was the only way that people would ever possibly even like me. I was lonely, miserable and felt that if I wasn't here on Earth it wouldn't even matter.

It's been a long road back. The problem with mental health "problems" is that they're often complicated to treat and recovery takes time. There's no magic pill out there that's going to make me forget what it felt like to go through this. Reaching out to others, finding "spirit lifters" and focusing on getting to know who I am again have been the biggest key factors in my recovery. Despite the bullying at school that I continued to experience for a year or so after this, I slowly started to see that I had a choice to make: I could either let this experience define me negatively and either give up or turn into a bully myself, or I could use the experience as an example of what not to be. I figure I have a long life ahead of me, so I chose the positive choice.

Since this time, I've also been diagnosed with Post-Traumatic Stress Disorder. Yes, even a child can have PTSD. I can't handle negative confrontations really well without having a flashback. So sometimes when I'm playing multi-player online games and someone starts saying something bad to me, it can trigger the memories. I still feel this need to make my work perfect, but I'm also learning that mistakes are also learning experiences. And, most importantly, I no longer wake up dreading being alive each day. I know that I matter, I make a difference. I know that I'm here for a purpose; to be a change maker.

What would I say to another young person living with depression and thinking about death as an escape? Hold on and don't give up. Right now might be a really dark time, but even though you can't see it there is hope out there. There are kind people out there that are just waiting to meet you. Even when you feel that there is absolutely no one, it's not true; I care. I want you here on Earth because you can make a difference in someone else's life, you can share your story of survival.

The Curling Community and Me

I'll be the first to admit it proudly; I'm brains, not brawn. Not that I'll never be brawn or anything, it's just that 3 years of being extremely sick have led me away from sports. If I can't walk across a field without feeling like my heart is going to explode, I'm pretty sure most sports are going to be crossed off the list...for now.

Something strange has happened though. Something wonderfully, delightfully strange and awesome has happened.

Sports has touched my life in another very unexpected way. It all started because my grandfather, an ice-maker for a curling club likes to brag and tell stories about me. First he told everyone he met how, when I was out of medical options for healing my colon, I donated it to research. Then he would carry on the story of how I've crossed the line into the Operating Rooms 15 times in 3.5 years. He talks about how I'm out of options to treat my severe Crohns disease. My experiences have left him way too many stories to tell.

But the story he shares the most often is how I decided to make a difference. How I decided to take my disease, and all the "crappy" things that go with it (no pun intended!), to change the experience for other kids. It's the story of Jacob's Healing Rooms.



The curling community has given amazing support to Jacob's Healing Rooms. Last June, the Ladies Division of the Leaside Curling Club hosted their annual golf tournament in honour of Jacob's Healing Rooms. They raised a shocking $3600 which was a really great start to getting the project off and running. This was also the start of my public-speaking, and I remember being so worried about what other people would think, or how they would react when they saw me with my NG feeding tube hanging out of my nose. The ladies made me feel at home, and I was able to share with them the importance of an encouraging, supportive environment on healing.

Next, it was time for the Whitby Curling Club to get involved, and through their collections was able to collect $625. I was super-excited to be able to deliver my first "freestyle" speech after forgetting my prepared speech at home. I loved being able to share my experiences so openly with the members, to build some awareness of what kids like me go through. After-all, we could be the next generation of curlers.

Last, but certainly not least, the members of the Oshawa Curling Club, plastered my article around the club and had a donations jar that members were reminded frequently was "available for your spare change". All of this "spare change" together, added up to $711 which was presented to me for my birthday in December! The thing I like most about "spare change" is what it represents; spare change to create positive change. I was able to talk to the members of the Oshawa club this past week all about change and how if we don't do anything, change won't happen. Such an important message that we all can learn from.

The curling community has done so much to help me out, and I can't begin to express what it means to me. As I said, I'm not a curler. I understand the sport but have never played. But what I can tell you from my experiences so far, is that curlers are full of heart. They are full of compassion and acceptance. They have forever earned a spot in my heart.

Jacob's Song of the Day (11/10/2015): "Everything is Everything" by Lauryn Hill

Today's song is about accepting the cards that you've been dealt and moving on. I have picked "Everything is Everything" by Lauryn Hill. Have a listen and read why I chose this song today:

I've been thinking about purpose. I believe that there has to be a purpose why I'm living with Crohn's Disease. That all of my experiences have to mean something. I refuse to believe that there's nothing to be learned from this rollercoaster of a life, that it was all for nothing.

I'm a science kid. I love learning new things about science and talking scientific theories with everyone that I meet. One thought that really sticks with me is the idea that everything in our universe existed from the second that it was created. It's a theory of the universe coming from a point called a singularity, picture it as an infinitely small point containing everything that has been and ever will be, which blows up (The Big Bang) and creates the universe. Everything that has happened historically since that point was already a given possibility because the universe contains everything that there ever will be. Here's the most awesome thing about this theory: If all of the possibilities are already available to us and we just have to find them, then that means cures for chronic diseases and terminal illnesses are out there. That we just have to keep looking and asking questions. We have to keep trying out new theories to explain why things happen the way they do. It means that there is hope out there. Hope for better days, better treatments, and even a cure.

I like to picture this singularity as the tiniest pinpoint of bright light on a completely black surface. To me, this glowing dot represents hope and its purpose is to bring light to that black surface and create something amazing in it. From this tiny pinpoint of light came all of these amazing little twinkling lights in our skies, lighting a path through the darkness. It's hope spreading and bringing comfort for brighter days. The little stars are like the wonderful people I've met and who have supported me on my journey, they've brought light through my dark days. I like to think that my purpose one day will to be a light for others who are going through this and other personal-related challenges. To remind them that no matter how dark the day seems, there's always a little light, a little hope, at the end.