In Honor of Kindness

A few weeks ago, I had the amazing opportunity of attending the Member's Statements Session of the Ontario Legislature at Queen's Park, as a special guest of Member of Provincial Parliament Granville Anderson. After meeting Mr. Anderson at one of my Jacob's Healing Rooms events, I had extended the invitation for him to join me for my Jacob's Birthday Bonanza party back in December to learn more about my Jacob's Healing Rooms project and my plans to help out Sick Kids Hospital by creating child-friendly spaces to receive outpatient IV treatment. Mr. Anderson was quite impressed with what I have done so far in fundraising and inspiring others to make a difference in this world of ours.

You can watch Mr. Anderson's speech via YouTube here:

These amazing words of recognition for my Jacob's Healing Rooms, along with the kind words later shared by other Members meant so very much to me. It's very encouraging to have my efforts recognised and it motivates me to work even harder towards my goals. However while it is nice to be recognised, I also am aware of just how much more I want to do to make a positive change in this world.


During my visit to Queen's Park, I had an awesome time chatting with another one of my local Members of Provincial Parliament, Jennifer French. We were talking about how Ms. French is actually my local MPP, while Mr. Anderson is in the next riding over. Good ol' political geographical boundaries, gotta love them. But the point is a good one - Jacob's Healing Rooms doesn't have a specific "location".  Children come from all over Central and Southern Ontario to be treated at the IBD Centre at Sick Kids Hospital. The impact that I hope to have with Jacob's Healing Rooms will hopefully make a difference for children from all over this province. Yes, I'm working right now to transform the outpatient IV treatment rooms, but I'm also hoping that this is just the beginning of some wonderful things to come.

Jacob's Healing Rooms might be working to create a better treatment area for sick children and their families, but it's about so much more than that at the same time. I've been thinking a lot about this while I've been struggling to find the right words that fit with my thoughts. Yes, I started Jacob's Healing Rooms because of my experiences at Sick Kids Hospital getting IV treatments for several hours a day for my Crohn's Disease but it all came from recognising a huge need, something that was lacking that could make the treatment experience better in this world. And that's exactly what needs to be done by us all.

Regardless of our geographical political boundaries, regardless of our race, age, gender, religion and personal beliefs, we all have one thing in common; we're all capable of change. Each one of us has the ability to take their personal experiences, find something that would make it better, and create positive change. If we do this, if we each make just one positive change in this world, one act of kindness, our world would become that much better for everyone and the future generations. That's what Jacob's Healing Rooms is about. It's about bringing people together to help inspire them and encourage them to always search for the one thing that could make a difference to others. It's about dreaming big and finding ways to achieve those dreams. Kindness, hope and love are three of the greatest gifts that you can give to others. And the best thing about those gifts? They're free to give.

To Premier Kathleen Wynne, Health Minister Dr. Eric Hoskins, Speaker of the House, Dave Levak, Lisa Gretzky, thank you for taking the time out of your busy schedules to share some kind words of encouragement with me.

And Mr. Hoskins, when you asked me if I had any advice for you, we should totally talk because man, do I ever have some suggestions on creating healthier communities!


To learn more about Jacob's Healing Rooms project, please follow along on my blog, Facebook Page, Twitter (@KidWithCrohns) and Instagram (@jacobshealingrooms!

Happy 4th Ostoversary to Me!

"Absolutely not going to happen" - that was my response just over 4 years ago when an ostomy nurse told me that most kids who end up having a surgery to create an ostomy end up not even thinking about the fact that they have a bag attached to them for collecting waste. There was just no way I could ever wrap my mind around the idea of what it would be like to have an ostomy bag, so thinking that I would come to not even think about it at all one day... it seemed impossible.

I have severe Crohn's Disease, a form of Inflammatory Bowel Disease (IBD) for which there is no current cure. At the time I needed to have ostomy surgery, I was only 6 months into my diagnosis and nothing the doctors threw at me was working. I was taking handfuls of pills all with the hope of achieving remission, but I would still be at the hospital weekly due to the heavy bleeding. The doctors thought that I had Ulcerative Colitis at first, another form of IBD, and since the inflammation was limited to my colon and rectum, they felt that having a total colectomy (removal of the colon) with an ileostomy (creation of an opening on the outside of the body using the ileum for waste disposal), would be my best chance for regaining my life outside the hospital. I was ready for the surgery but was it true that I would one day come to accept having an ostomy so completely that I would forget about it aside from times of emptying the contents or changing the bag?

I thought that I would be aware of my ostomy every second of every day. Aware of this bag of poop hanging off of me constantly. Aware of being different and at times looking different. Aware of other people's reactions. When people asked me about it, would they get grossed out and treat me different? Would people not want to be near me in case it suddenly exploded, or because they think I might smell (which I can tell you, other than when I have a "code brown accident" there is no smell)? I'm pretty sure that anyone my age who has had this surgery has had similar questions as well. Most kids would have had no idea what an ostomy was, and what it would mean for their day to day life. And not knowing creates fear and anxiety.

Today marks my 4 year "ostoversary". 4 years ago today, I had my colon removed and donated to research, and started pooping into a bag. I was scared being wheeled in to the operating room, my life was about to forever change. I wanted to feel better, to be back to doing the things I enjoyed, but I was nervous about what it would look and feel like afterwards.

The first time I saw my "stoma", the part of my insides now sewn to my outside, I was grossed out. Those first days and weeks, I worried a lot about the bag suddenly falling off, or stuff getting trapped in my new exit and causing new problems. I worried about it being touched in the cleaning process (it doesn't hurt), and dreaded having to do changes every few days for it.

I don't know if it happened over night, or if it were something in the making, but one day I realized that I wasn't actually thinking about it. When I think about how much time I would spend these days thinking about my ostomy, other than emptying it or changing the bag, I would say that I don't think about it. At all. My ostomy has become my normal, it's something that I will live with for the rest of my life, or until Crohn's is cured, which is ok with me. Yeah, it sucks to sometimes have these giant ostomy fails, like when my bag starts to leak and I have no place to go to change it, but I don't find that I'm worrying about those accidents that much anymore, because they just don't happen as often as you imagine when you first start thinking about it. In fact, most of my fears have been completely for nothing.

My ostomy is my bag of honor, it's a symbol of having gone through a very challenging time and having come out on the other side. It's a symbol of strength, of having overcome some of the hugest hurdles life can throw your way. My bag saved my life and taught me that sometimes you just need to believe that it's all going to turn out ok. Yes, it takes time to adjust, but that's true to most things in life. But life does go on, that I can promise you. My name is Jacob and I am an ostomate.

What Happened When I Thought No One Would Attend My Birthday

My life is anything but normal, or at least what people think of when they think "normal". It always has been, I'm pretty used to to it by now. I've spent the majority of the last two years unable to attend school because of being sick, or in pain, or both. It's really put a huge downer on my ability to make friends at school or elsewhere. In order to make friends, you need to see each other once in awhile. That's something that just doesn't happen all that often for me.

So the topic of my 13th Birthday came up a few weeks ago when my mom asked me what I wanted to do to celebrate entering "Teen-dom". My birthday is December 13. Let me be the first to tell you that it's not a great time of year, because of this other little holiday called "Christmas" being so close. But the real problem for me isn't even competing with Christmas.

I haven't been well enough to have a birthday party since grade 4 (I'm now in grade 8), this year is shaping up to be the same way. Since I haven't been at school to build friendships, I don't think that anyone I invite to come hang out with me would come over. So I had an idea.

Why not host a public birthday party? Invite whoever would like to come out, play some games with me, chill out, have a few laughs, make a few friends, and maybe have a few surprises along the way! Then I came up with the idea that if anyone did want to give me a gift, that I would tie my birthday to Jacob's Healing Rooms project at Sick Kids to raise funds to make my wish of updating the IV infusion treatment rooms come true!

So I'm hosting Jacob's Birthday Bonanza in real life this year!! Please join me on December 10, 2016 from 1-4pm at the Whitby Curling Club, 815 Brock Street North, Whitby.

I am WE!

Last week I had an amazing opportunity suddenly come up, something that has been on my bucket list since I first heard about it: I went to WE Day!

WE Day is totally my thing. It's a day that is held in various cities around the world that brings people together to create positive change. It's a day for sharing ideas, learning from one another, and knowing that you're doing something very special - you're going to help make a difference for other people in this world. Now that should be everyone's thing.

See, we all have the power to make a difference. We all see things all the time that makes us say "whoa, stop, that doesn't seem right", and we come up with a way of seeing things differently. It doesn't matter who/what/where we are, we all have the power to choose to do something to improve this awesome planet of ours. We heard from a man, Joe Roberts, who became homeless in his teens, and because of someone treating him with the humanity he deserves, is now walking across Canada pushing a shopping cart to raise money and awareness for other homeless people (Push for Change). We heard from Rick Hansen, who after suffering a spinal cord injury in his teens, went on to travel Canada in his wheelchair advocating for those with disabilities. I think one of the coolest things I heard all night came from him - "See my abilities and not my disabilities". We heard from the sister of Chanie Wenjack, whose family, despite years of pain inflicted at the hands of our governments of past, still wanted to give us all a beautiful Aboriginal blessing. All of the stories were just incredible.

A few highpoints - seeing Gord Downie perform. Admittedly, this isn't my generation's music, I don't mind The Tragically Hip, particularly the older stuff, but it isn't my first choice. But I've been interested in Gord Downie since learning about his cancer and arranging to go on one final tour. I've been struggling personally to be able to get through what I need to in a day, that I look to people like Gord as a role model to what "really living" is. To be facing the end of your life and still take on incredible projects such as The Gord Downie-Chanie Wenjack Fund to shine a spotlight on the treatment of Aboriginals in our country is incredible. The strength and courage Gord Downie has shown has been nothing short of inspirational.


We heard from Hani Al Moulia, a young Syrian refugee who escaped the current war situation in his home city. When he left, he had nothing but his high-school diploma and the clothes on his back. Hani suffers from an eye condition that has left him legally blind, but yet he has a huge passion for photography. His pictures have even been displayed amongst pictures taken by professional photographers. Hani may have left with nothing, but he has earned himself a full scholarship to Ryerson and become a Youth Council member to the Prime Minister. Hani represents the opportunity that we all have to overcome our challenges. One of his best quotes of the night was "I won't let obstacles stop me, I'll just go around them!"


But We Day isn't about what any one person has done to make this world a better place. It's about how we COME TOGETHER to create positive change. If one person can make a difference, what can 20, 100, or 1000 people do when they come together? This is what the world needs, to come together. We need to see the problems that exist and more than just acknowledge them, take action. Even the best idea that any one person has, needs to have a team to get it into action. As Commander Chris Hadfield told us "From space, there are no borders separating us".

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. 

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.

Jacob's Song of the Day (4/20/2016): "Invincible" by Hedley

So.... last night I went to see one of my favourite bands, Hedley, who I've now seen a total of 3 times, although it really does seem like I've seen them more. Listening to one of their older songs, "Invincible", really jumped out at me and I looked over at my mom and said "that's tomorrow's blog post". So have a listen and read why I chose Invincible as my song of the day:

I had a hard time picking only one part of the lyrics to share with you, the whole song is pretty meaningful to my life, but this is what I ended up choosing:

"This time / I'm a little run down / I've been living out loud / I can beat it, beat it / That's right / 'cause I'm feeling, feeling / Invincible"

The last several months have been among the most difficult of my life. Yes, what I'm going through now feels even worse than at the time that I had my colon taken out because of the severity of damage from Crohn's Disease. My body is simply falling apart, or at least it really feels like that most of the time, and the doctor's are kind of at loose ends grasping for straws that could help me get back on my feet, back being a kid again, and back into the game of life. I'm learning patience during this straw grasping game. What other choice is there? I wait for tests, for more surgeries, for more specialists to get involved, to get answers that MIGHT help. I've learned to hold no expectations, which to some might sound like a very negative thing, as though I'm giving up hope. But rest assured, this has nothing to do with hope. I still cling to that like a lost soul in the Gobi desert. What I mean about holding expectations is that I have no expectations that tomorrow will be better, or that my doctors will come up with the miracle, that researchers will find a cure for my disease. If you hold expectations like that with a chronic illness, you get disappointed real quick. Especially when you have such a severe form of the disease, that there are very few treatment options left. Instead, when something goes right, it's now become a pleasant surprise.

Last night was physically the second-most physically exhausting concert I've attended, right after the Train concert where I was rushed to the hospital before Train even took the stage with a major heart event. Despite having eye pain from suspected uveitis (waiting on the opthamologist appointment), extremely painful joints, my GTube allergy that I'm fighting, a painful hernia in my stomach, and vomiting over 40 times, I managed to stay for the whole concert, even if I wasn't able to get up on feet and dance my heart out.

That just shows people just how invincible this kid is. 

Oh, and how did I like the concert? The music was great but I didn't really get to see much of the performance even if I was only 6 rows back in the stands. Instead, I learned that when I'm sitting at a concert (and I have no choice but to sit right now) that I'm the perfect height for the people in front of me to stick their butts in my face. That's the view I had for all of Hedley's performance. Hopefully the next time around, I might actually be able to see the concert. Or even better, I might be able to actually be on my feet dancing.

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. 

Jacob's Song of the Day (3/23/2016): "Miracles" by Coldplay

Today I have chosen "Miracles" by Coldplay because to me it represents hope. Have a listen and read more about why I chose this song today:

"I've made it this far and refused to give up because all my life I had always finished the race" - Louis Zamperini, WW2 veteran and Japanese POW survivor.

Hope. What a wonderful thing that we incurably sick people cling to. We hope for better days, better treatments, cures. We hope for more understanding, more compassion, more kindness in a world that often just doesn't seem to get it. Hope is what drives us on, what keeps us waking up to each new day that passes. Hope is the exact thing that Miracles are made of.

I try to stay positive even though my health for the past 6 months has been on a downward spiral. In the past 4 years, almost every holiday and vacation has been spent as an inpatient at the hospital. I can no longer participate in Scouting, I haven't been to school for a full day yet this year so all of my friendships have also taken a beating. Even though I'm out of the hospital for now, I still find myself in a medical waiting room at least twice a week. My life has just done several strange trips through various wormholes and become something completely different than what I could ever dream up (or I guess in my case it would be nightmare-up?) I'm just growing more and more tired each day, when there's no real answers. I'm tired of the medical trips, the triple 'p' (pokes, prods and pain), the treatments that create new problems. So what is the one thing that keeps me going and inspires me to inspire others the way I do? 

Hope and miracles. What really keeps me going each day is the hope that I can make a difference. The hope that Jacob's Healing Rooms will help to make the treatment experience for other kids going through this a lot better. It's the hope that I can inspire at least one other person to do their own thing to make a difference in this world. It's hope that one day, we all can have a miracle.

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.

From Bullying to Friendship: A Story of Positive Change

Confession Time: I used to hate school. I'd wake up in the morning dreading going to school for the day. It wasn't the work, I love learning. It was bullying that started to make me dread leaving the house. I'd go to school and try to "walk away", "ignore", and all the other things adults tell us that we should do. I'd start each day telling myself that I could be strong, that I could get through it, but 10 minutes into the day, I'd already be feeling broken-down, lonely and sad. I talked to the teachers about it, but it didn't change anything. I'd still be made fun of, I'd still have tears forming in my eyes, I'd still feel really hurt inside. Each comment was attacking who I was, making me feel like I was wrong for just being me, for just being alive. And then my medical problems started. Soon, instead of just being made fun of because of my learning disability, or my giftedness, I was being made fun of because of the extreme weight gain from the steroids. It was difficult being called names, told that I look like a "fat lady", or have nasty comments about my weight and animal sounds being made. Here I was with a brand-new diagnosis that I'll live with for life, something completely out of my control, and being picked on because of it. I'd come home and cry, and the cycle would continue each day.

But then something happened...

Starting in grade 5, my classmates started to understand that I was really VERY sick and they would write me little notes sometimes to let me know they were thinking of me. I started to have a lot more absences until in grade 6 when I basically missed most of the year. I thought for sure my classmates would forget about me since I wasn't there. My teachers have done a really good job at making sure this didn't happen. In fact, now when I go to school I have so many people saying hi to me at once that it's overwhelming. In a good way. I no longer dread going to school, my classmates have become amazing supporters on my journey. They are eager to learn about my medical condition and the medical appliances I have (ostomy, GTube, sometimes a heart monitor), and love hearing what I've been up to when I've been too sick to go to school.

Today something amazing happened. Aside from the fact that I went to school I mean. Today, my teacher handed me a special folder of cards, drawings, activity booklets and messages that my friends have put together as special encouragement for me. As I sat at home looking through all the material, I had tears in my eyes. The good kind of tears that I'm not used to - Happy tears. On a day that I'm struggling just to be out of bed, this made my day so much better. It was such a simple thing that they might not even know made such a huge difference to me, but it did. It made a world of difference to feel remembered, included and important. The only thing I dread now are the days that I can't go to school to be with them all in person.

Jacob's Song of the Day (12/31/2015): "Great Big Storm" by Nate Ruess

I've been saving today's song for quite some time, and I can't think of a better time now to use it than for New Year's Eve. Today I picked a song that as soon as I heard it, I thought "Did he write that for me/about me?", it's just fits so perfectly. Today's song is "Great Big Storm" by Nate Ruess. Have a listen and read why I chose this song today:

I think this might be one of those songs that really got overlooked by many of the local radio stations, at least the ones I listen to. If you've never heard it before, did you like it as much as I did when I first heard it?

The part that really gets me is the chorus:

"Because we're holding our own in a great big storm / And though we're cutting it close / We won't let go / Oh no I can't believe / Everything falling down around me / But now we're holding our own / And won't let go"

That pretty much sums up 2015 for me, it's been a great big storm. Actually, the last 3 years have been, but this year especially. This year has seen me struggling with daily intense nausea and vomiting, going 4 months without solid food (exclusive tube feedings), starting on my last pharmaceutical option (at the moment) for helping to resolve the inflammation, developing severe and painful psoriasis, having a hypertensive crisis episode at a rock concert, and having an allergic reaction to the materials of my permanent feeding tube causing slight bleeding in my stomach. Yep, it's been a year. One long of a soap opera year. 

But through it on I've held on. I don't know how. I don't know how I keep going when everything around me crumbles to pieces, but I find a way. Isn't that what life is about? Finding a way to face your challenges without being destroyed/dominated by them? 

Two days ago I was rushed into the ER. I had been having a lot of chest pain/tightness, shortness of breath, sweating, dizziness, blurred vision and could feel my heart literally "jump" sideways and start to pound. I went to stand up and almost fell. I could feel myself shaking. I had my loop heart monitor on at the time, but the machine wouldn't let me send it through to the hospital for the cardiologist to read. By the time I got to the hospital, the episode was over except for the extreme exhaustion that follows one of these episodes. And they've been happening more frequently. While my QT rate of my heartbeat was borderline long, they weren't able to find anything that explains why I keep coming so close to collapsing again and again. It's really frustrating, as I'm sure it is for the countless doctors who I keep repeating the same symptoms to. It makes me doubt myself and question whether I should listen to my body. 

But I'm still holding on tight during this nightmare roller coaster. 

2016 oddly enough gives me hope. It's a fresh start, a time to take the lessons learned from the past year and move forward. I've made it through 2015 and maybe like a caterpillar I might be coming out of my chrysalis to spread my new beautiful wings. Because magical transformations can happen like that. 

Happy New Year Everyone! I hope that you find a way to hold your own in great big storms as well. 

New Year's Resolutions

I've been thinking a lot about resolutions. Most people's resolutions come from a place of regrets; not having done something, having done too much of something, etc. When we think about resolutions we tend to think about the things about our own selves that we don't like. Most of the time our wishes are about going along with what society says we "should" be. Like being thinner, looking different - things that would make us fit in with the crowd. We don't tend to see the bigger picture.

This year, 2015, has been one of the worst and best of my life so far. I didn't know it was possible to experience so many things at either end of the goodness spectrum, but here we are, and that's what's happened. In the past year I have been wheeled into the OR about 5 times, spent over a month as an inpatient twice, had at least one day a week at the hospital when not an inpatient, and have met so many different doctors that I need a scorecard to tell me who belongs to what speciality. I've also moved on to one of the last treatment options for my Crohn's. To say that my overall health hasn't improved is an understatement. There's so much that I want to change about that! 

Life is short. I've almost died. A few times now. I had my first epileptic seizure at the age of 3 and went unresponsive in my mom's arms for several hours. I had such severe pneumonia that I have turned grey, unable to speak, and had my heart rate over 200. I collapsed at the Train concert and had an "Exciting" lights and sirens ride from the concert hall to the hospital because of my heart. I've been reminded strongly this year that we need to live. We don't know how long we have here, so we need to look at each day as a very real and true gift. 

But 2015 hasn't been all lights and sirens emergencies. Some really great, awesome, amazing things have happened. I got Jacob's Healing Rooms up and going, and we're SO close to reaching the 25% mark of my overall goal. I thought that I was doing Jacob's Healing Rooms to help other kids who are sick like me. But I've learned that I also get something out of it. I've been inspired by the generosity of so many strangers, friends and family who have helped my wish take flight. I've received so many messages sharing kind words of encouragement that help me more than I can be able to tell you. While I might not be feeling physically better, it gives me an extra boost when I see just how far my messages of hope and courage are going. I want to be remembered when I am no longer here. I want other people to have a lasting inspiration that leads them to do their own acts of kindness. Any act of kindness, no matter how small can make a huge difference. Just like the little pebble that creates a large ripple. When you have a dream nothing is impossible. I've also made some incredible new friends who have made a lasting impression.

So resolutions heading into 2016? Well, I can tell you that it's not about me. It's about raising awareness for Inflammatory Bowel Diseases. It's about inspiring others to make a positive change. It's about pushing for better treatments. It's about helping others to hold on to hope, love, and belief even when it seems impossible.

My resolution for 2016 is to give more. What will your resolution be?

My Letter to Santa - 2015

Dear Santa,

It's me again, your pal Jacob. It's really been quite the year, eh? I'm really struggling with writing a letter to you because I just don't know what to say. Sure I could list off some toys and gadgets, but I don't need any of them or even really, really want to have them. The things I really want can't be made in your toyshop, or in any factory in the world.

Santa, I really want a cure for all of these incurable illnesses. I'm living the best I can with my severe refractory Crohn's Disease and the complications that have come from it. I've seen so many other kids at Sick Kids who also struggle with their illnesses. I want to be able to be a kid again. I want to do what my friends are doing. I want to be able to walk more than 2 minutes without feeling like my heart is going to explode and all of the oxygen has been sucked out of the world. No kid should feel so bad that they just want to go back to bed Christmas morning instead of opening up gifts. Yet, there are a lot of kids like me, who feel that just being able to be out of bed is an awesome Christmas gift. I want for all children who celebrate a holiday at this time of year to be able to enjoy their celebrations without worrying about the medical stuff.

Santa, I've been looking at the news and haven't liked what I have seen. There's too much negativity and hatred in the world. I don't understand how people can be so mean to one another. We only have this life, this moment in time, and to waste it by not spreading kindness is saddening. I want the people in this world to offer one another a hand-up, to try to change the world by doing something kind. It's stories like these that can over-power all that is negative. It's stories like these that give us hope.

Santa, for Christmas I just want the gift of being remembered as the kid who tried to make a difference and inspire others to make their own difference in this world.

I'm sorry that I don't have anything to ask for that is easy to make. The best gift I can think of is the gift of being able to make other sick kids smile.

Thanks Santa.
With love,
Jacob

My Best Birthday Gift

Last week was such a busy week for me with all of the medical appointments that I'm just getting caught up on all of the wonderful birthday messages and love that was shown to me that day! It meant so much to have people all over the world show such thoughtfulness. I'd like to share one special act of kindness that was presented to me on my birthday weekend.

My Papa used to work at The Oshawa Curling Club and made many friendships with people there over the years. When my story made the newspaper, a few of the members of the club had seen it, and reached out to find out how they could help make my wish come true. A few members decided to take it upon themselves to bring attention to Jacob's Healing Rooms. My newspaper story was posted in a few areas of the club, and a big collection jar was placed at the bar. It was such an amazingly nice thing for them to do!

I haven't been able to have a birthday party in 3 years. My grade 5 birthday I had pneumonia and could barely blow out candles let alone host a party. My grade 6 birthday was when the nausea and vomiting started to be a huge problem. This birthday I was recovering from surgery #14 to place a GTube feeding tube, which we have learned I am allergic to and it will need to be replaced on January 7. It was a bummer that I couldn't have an actual birthday party yet again, but I decided to do something awesome with it and see if I could host "Jacob's Online Birthday Bonanza to Benefit Sick Kids". Why not turn a bad situation into something a bit better?

Hearing that it was my birthday, they decided it was the perfect time to give me their awesome present. Together, the Oshawa Curling Club members raised an amazing $711!! My birthday wish goal amount was to see Jacob's Healing Rooms reach $8000, and thanks to the outstanding generosity of the members, I was able to reach my goal, which was the best birthday present I could have asked for!

Thank you for everything that you all have done. This dream of mine can only come true with the kindness and generosity of others. I know that together we will be able to bring some smiles to these kids faces and make treatment days brighter! I can't wait until I can come and thank you all in person next month!

Welcome to Jacob's Online Birthday Bonanza to Benefit Sick Kids!

Welcome to Jacob's Online Birthday Bonanza!

My Birthday Pi Pie (It has a Pi symbol on it)

So, what's this all about you ask? Well, I'm an 11 year old guy celebrating my 12th birthday. A pretty normal thing to do. Except when it's anything but normal! 

So not ready to party

I haven't been able to have a birthday party in three years. In grade 5, while my body was immuno-suppressed, I caught a simple cold. When my birthday came around, I couldn't stop coughing long enough to be able to make a complete sentence. The simple cold lasted 6 months, and ended with me hospitalized on Good Friday with severe pneumonia in both lungs. Then in grade 6, I couldn't stop throwing up. Nothing stops a party faster than that. 

This year, well I woke up with a fever yesterday if that's any indication of how I'm feeling, and I'm in a lot of pain. It was my actual birthday yesterday, and how did I spend it? Trying hard to distract myself from going to the ER with how horrible I'm feeling. I see the medical team tomorrow though, so I'm doing my best to work through it. I'm not alone in being sick on my birthday, when you have an incurable illness, it's just what happens. The positive thing is that I was at home for my birthday which is a lot more than some other sick kids experience. 

Which brings us to the point of today! I wanted to do something to acknowledge my birthday. I decided that I'd invite the world to join me on social media to play a few online games, share a few stories and pictures, and to raise some money for Jacob's Healing Rooms at Sick Kids Hospital!

I've currently raised about $8000, which is an amazing amount, but I need your help to get me closer to my $60,000 goal. Today, I'm hoping that together with your help we can raise my total to $10,000. This money will help to bring smiles to the faces of children spending time in the Medical Short Stay Unit to get IV medication infusions. It will help to distract them from the pain and fear of the medical world. It will help families to connect and brighten the environment for patients, caregivers and staff! I couldn't think of a better birthday present.

These are the treatment rooms that I want to make child-friendly

How can you help?

1) Participate!! I'll be tweeting (@KidWithCrohns) using the hashtags #JacobsHealingRooms and #HappyBDayJacob. I'll also be on my Facebook Page (www.facebook.com/jacobshealingrooms). Share & Retweet my activities, the more people that are made of aware of my project, the easier it will be to get to my goal!

2) Consider making a donation. My hospital fundraising link is: HERE  No donation is too small as it all gets me closer to my goal.

3) Have FUN!!

Jacob's Song Pick of the Day (11/12/2015): "It's Not That Easy Being Green" by Kermit

Oh what a life this is. Today I picked the song "It's Not That Easy Being Green" by Kermit the Frog. Have a listen and read why I chose this song today:

Acceptance. How do you accept that you are who you are, faults and all, when everything seems to go wrong? How do you accept even the most horrible of situations, at the worst possible time of year, when all you want to scream about is how unfair it all can be? 

Surgery #14 to put in the GTube (feeding tube into my stomach) was now 3 weeks ago. What the doctors initially thought was possibly the chicken pox/shingles virus is turning out to be something somewhat nastier - a bad allergic reaction to the feeding tube materials. Each bandage change is showing more and more "damage" around the feeding tube hole, so yesterday my mom decided enough was enough and e-mailed pictures of the situation to the GTube team, who now also thinks that I might be having a significant reaction, and fears what type of reaction might be happening on the inside where we can't see. A very scary thought considering I have a lower immune system thanks to the immuno-suppressing drugs that I'm on. She then sent the pictures and the message along to the pediatrician who became alarmed and decided that I needed to be seen by several specialities (GTube team, general pediatrics team, dermatology team, GI Team). I really wanted to spend my birthday with my sister though, so they've let me stay home until Tuesday. 

But...

If they think that I might need to have a new tube inserted right away, or if an infection happens to develop (I'm at high-risk with an open-wound and this being nasty-infectious season), than it might mean spending Christmas in the hospital this year. I'm trying to stay hopeful but I also know that things can't keep going the way they are and I'm feeling worse and worse by the day. 

I am who I am and my body is what it is. I'd be perfectly justified in throwing an earth-shattering temper tantrum right now and scream about the unfairness of the world. But what would that get me? Yes, I complain. I answer truthfully when someone asks me "how are you?" even though it might not be the acceptable answer of "Fine thanks". I'm not fine. But I'm working on it. I'm holding on the best I can, trying to ignore the worries, the pain, the unhappiness of potentially spending yet another holiday in the hospital. Acceptance of "what is" is the only way to go. It's the only ticket that we have to our "happy ever after" party. 

And trust me, we will one day be having a huge "Happy Ever After" party. There might be no light at the end of the tunnel right now, but I think if we keep going we just might see the smallest glimmer at the end. 

I leave you with my favourite part of the song:

"When green is all there is to be

It could make you wonder why, but why wonder? Why

Wonder, I am green and it'll do fine, it's beautiful!

And I think it's what I want to be"

Jacob's Song Pick of the Day (10/12/2015): "Hello" by Hedley

I hate goodbyes. Which is why today's song is a perfect choice: "Hello" by Hedley. Have a listen and read why I chose this song today:

This song gives me hope. I haven't been able to see my school friends in a very long time because of being sick, and I miss them a lot. When I get e-mail from them, it makes my entire day because then I know that they are thinking of me as much as I am thinking of them. It's about the connections that we build and how those connections can keep going even if time and distance get in the way. Regardless whether it's been a week since you last had contact with someone you care about or years, there's always a way to go back and say "Hello". 

Goodbyes might be right up there with the things that I hate most, right up there with ultrasounds in nasty places that I won't even mention. I have had to say too many goodbyes in my short lifetime. Since I've spent the majority of the last 3.5 years either in the hospital or in a waiting room at the hospital, most of the friends that I have made have been other patients. Sometimes we keep in touch, but a lot of times we just meet up when we're hospitalized together. I've also made a lot of friends with staff and hospital volunteers. Even though there might be several months before we see one another, when we meet again it's as though time hasn't moved on at all and we pick up the conversation where we left off. That's just the way it tends to be with hospital life, but it still... sucks. Some of the friends I have made have gone home to live their "healthy" life, but there have been some that have lost their fight, yet I still remember them and think of them often. The saying of "Some people come into our lives for a short time and quickly go. Some stay for awhile and leave footprints on our hearts. And we are never ever the same" is very much a reality in the world of chronic illness.

But I've also had to say goodbye to my "normal" life. There is nothing normal about having an ostomy, and a feeding tube, but it has become my normal. There is nothing normal about being too sick to go to school or to have a birthday party, yet both of those are my reality. I've had to say goodbye to Scouts, which I really greatly enjoyed, because I can't do the physical activities, even playing a game of tag would be way too much for me. I've pretty much had to say goodbye to a normal childhood.

"Goodbye" to me seems way too final, like I'm never going to see that person again. I like to think of "Goodbyes" as "see ya later", or "until we meet again", that implies that the interaction is going to continue after a pause. So if you ever do meet me in person, don't be offended if I don't say goodbye. It just means that our relationship is going to continue in the future.

As a side note, I'm so excited to be going to see Hedley in the spring for my 3rd time (thanks mom!) that I wanted to share just how excited I am to be seeing them with a few of my Hedley pictures:

 I think I'm just a wee bit of a fan of the band! If you ever get the chance to see them in concert, it's one awesome and amazing experience!