A Million Thank Yous from the Heart

Family. Friends. Community. These things are on my mind as I sit down on my 13th Birthday to write what I hope to be is one awesome thank you letter. These three words are so important. Your
community is your home base, they're all the people who you haven't met yet but are just waiting to become friends. They're like the space around an atom, they're there but they're invisible until you go looking for them. Then you have Friends, who are like the electrons surrounding the nucleus. They help to bring energy and support the nucleus, consistently there even though they might move around a lot. Then you have family, which is like the nucleus. It's tightly compacted, full of possibilities and serves as the heart of the atom. My nucleus, my family, grew huge over the weekend!

This weekend I hosted Jacob's Birthday Bonanza, my drop-in birthday fundraiser for Jacob's Healing Rooms to redo the outpatient treatment rooms (4C) at Sick Kids Hospital. It was a huge success but only because of family, friends and community. Without the help of a lot of people, most of whom were strangers to me, Jacob's Birthday Bonanza would not have been the success that it was. I owe a lot of thank yous. It's this outpouring of generosity that inspires me to keep going, to keep trying to make Jacob's Healing Rooms become a reality, to keep dreaming of changes I can make to help this world be a kinder and more welcoming place. 

To Mayor John Henry, MPP Granville Anderson, and Councillor Willie Woo, thank you all so much for taking the time to come out and take part in my birthday. It means so much to me, and I was happy to be able to share my special day with you all. I can't imagine too many other 13 year old have the honor of saying that they celebrated the day with their local politicians!





To the amazing Durham Regional Police Services - THANK YOU! Your
attendance made me feel pretty extra special on my special day. I don't know too many other 13 year olds who have a whole bunch of officers show up at their birthday parties. It was so overwhelming that you all would take the time out to come and support Jacob's Healing Rooms. I look forward to my tour!


To Pepper the Clown and Bob the Magician - What an amazing surprise for you
both to donate your time to help keep my guests and I entertained. And
entertained you did! Not only are you guys fantastic at what you do, but you're also incredibly warm and generous people. I felt so incredibly lucky to have you both at my party!




To Boston Pizza Oshawa - Wow. Your support of making Jacob's Healing Rooms come true is absolutely amazing. Thank you for going so much above and beyond what anyone could possibly hope for. The pizza donations were a huge hit with everyone (we were only left with 1 slice!), and I love the idea of selling the kids club meal cards with $1 going back to Jacob's Healing Rooms! I can't wait for our Celebrity Serve Night!

To Jack Astors (Whitby) - Incredible. Every now and then you run into extremely special people that

really make a difference. Thank you so much for jumping on board to support Jacob's Healing Rooms from the moment you heard about my project. The outpouring of love from your staff has been so overwhelmingly amazing. The huge tray of cookies was so very thoughtful and yummy! I look forward to working with all of you around the Jacob's Healing Rooms server shirts - I have some ideas! 

To the Whitby Curling Club, thank you for donating the space for a discounted rental price! We were able to transform upstairs into a fun-filled party room quite nicely. Your support of Jacob's Healing Rooms has meant a lot to us! 

To Karen, Marilyn and Ken Easby from Gold Reflections (Bowmanville Mall), thank you for your never ending support. From running around with my mom to ask for donations, to making sure we had everything we need and helping with the set-up, donation table, our special surprises and clean-up, you guys were there to help us out. 

To Jen Doolan, Doug Hamilton, Doug Izard and Robyn Minnikin - Thank you for helping in the set-up and clean-up, and arranging things for us during the party to help avoid crises. It was hugely appreciated! 

To Trisina at Skippy Cakes (Hamilton) - Your cake is a work of art. Not sure if I or my mom told you,
but when I was younger I used to re-read the Lorax all the time, it's one of my Dr. Seuss favorites. Thanks for being so awesome, driving all the way from Hamilton just to come out for my special day. And helping to clean-up afterwards, even though we mostly chatted rather than worked! 

To Jen of Jennifer Rue's Photography, thank you for taking such beautiful pictures of my guests and I.  You have a special talent with that camera. Thanks for being a part of my day. I can't wait for our next photoshoot! 

To Andrea Kirkwood-Look, Emiko Balazik, and Alison Smith (Ali Katz Cookies) - Thank you so much for providing such yummy snacks. Our bellies much appreciated them! 

To all the companies and individuals who donated such amazing prizes - Mandy Rusk, Clare Izard, East Side Mario's Whitby, Party City Whitby, Bev Bradbury, Buffalo Wild Wings Oshawa, Wild Wings Whitby, Melanie Pringles, Putting Edge Whitby, Boston Pizza Oshawa, Billie Jax's Whitby, Mastermind Oshawa, Scholar's Choice Oshawa, Edible Arrangements Whitby, Swiss Chalet North Oshawa - Thank you for being part of my special day. Without the generosity of people like you, it would be so much more difficult to make my dream into a reality. 

To those special people who took the time to come and hang out with me, thank you for making my day so very special. We may have started out as strangers, but you are all now my family. I couldn't be luckier to have such an amazing and supportive team of people cheering me on. I will always treasure the memories that we created. 

Jacob's Birthday Bonanza has raised $3674.65 so far thanks to the kindness that everyone has shown to me. Thanks for sharing in the best birthday I could have asked for! And Thank you for joining my family. 

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.

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.

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. 

With a Little Help From My Friends

Friendship. I have the most amazing friends who go way above and beyond with their kindness and generosity. My classmates for example have become such huge supporters, something that I didn't think would ever happen with my history of being bullied at school. I used to dread going to school each and every day, even though I love learning. Now I just can't wait to get back to school.

My classmates have been following my journey on my blog since I haven't been to school to tell anyone what's been going on. I love being able to share what my experience of being a child with an incurable illness is like. I think that it helps both of us; my classmates learn about the challenges people with disabilities face and I get encouragement from them to continue my long fight.

One of my school friends, Sadie, asked if she could do a special fundraiser this Christmas for Jacob's Healing Rooms. Sadie is a very talented, kind-hearted, 12 year old who I'm lucky enough to call a friend. Sadie decided to put her amazing artistic talents to work to create absolutely stunning Christmas cards that she put a lot of time and effort into making. And then something else great happened.

Sadie's Star

Sadie's Snowman

Sadie's Heart (My Favourite)

Two of Sadie's friends, Nicholas and James, decided that they would also like to help Sadie raise money for Jacob's Healing Rooms. This is such an awesome example of how one kind act can lead to another. Sadie, Nicholas and James are perfect examples of what I hope to do with Jacob's Healing Rooms on a larger scale - to inspire others to do their own acts of kindness. I'd love to create a giant "snowball of kindness".

Together, Sadie, James and Nicholas raised $320!! I want to say a giant thank you to them and everyone who purchased cards from them. This type of generosity is what is making Jacob's Healing Rooms such a success. Never stop with that giving spirit guys, kindness conquers all!

The 3 Ingredients to Life: Hope, Love & Believe

There are three extra-special Christmas ornaments that hang on our tree, Believe, Hope and Love:

Believe. I believe. We all need something to believe in, it's what keeps pushing us to go forward even when we'd rather hide our heads in the sand. It's what helps us from moment to moment, reminding us that even though things might seem dark right now, there's a belief that not all days are going to be like that. I believe that there is something that we can learn from all of our experiences here on Earth, good or bad. It would be such a waste if nothing of value came out of everything I've been through in the past 3.5years. I believe in the power that we all have to make a difference in this world and that when we all work together, nothing is out of reach or impossible. Together I believe that we can bring smiles to the lives of other sick kids. 

This year was tough for believing. As each day passes and I physically feel the same or worse, that belief that things are going to get better seems further and further away. At times, it felt like saying that things were going to improve was about as improbable as pigs flying out of my butt. But belief is one of those human things that we need. If I didn't cling to belief even in my darkest times, then there wouldn't be any hope. If I didn't hold on to belief, then it would be really hard to see a point to all the suffering and want to do something to change it. I wouldn't believe that a 12 year old could make the type of impact on the world that I want to make. 

Love. Love is essential to life. Love creates, inspires, comforts and encourages. It's what overpowers the sadness and let's us know that we're not alone. Love has the power to heal the pain, disappointment and fear. It holds our hands when we are scared, and helps us to believe when we're at at our most full of doubts. Love is something that you can never have too little of. 

This year I have been shown so much love. Jacob's Healing Rooms has brought some new and amazing people into my life, who have shown me such amazing love and support that I could never possibly tell them how much they mean to me. Having spent so much time at the hospital and being sick, it can be very lonely at times. The love that others have shown has made me speechless, brought me to happy tears and been overwhelming at times. It's only with love that all of your dreams become possible, and all of you are showing me exactly what the power of love can do. Thank you from the bottom of my heart. 

Hope. Hope is the most powerful ingredient yet. It's what keeps us looking into the future and knowing that there is a light at the end of the tunnel. It's what we cling to when everything around us seems to be crumbling away. If there were no hope for change, hope for tomorrow and hope for better days, the world would be a very depressing place. Hope is one of the most important values that we can hold on to desperately and whisper our deepest, most secret wishes. Hope is an amazing power. 

It could be so easy to lose my hope. When each treatment option has brought some significant side effects, reactions or just plain didn't work, it's hard to hold on to hope that there's going to be a treatment that does work. It's hard to hold on to the hope that there will be better days ahead when I've felt pretty much the same day-after-day for months, and months before that, and months before that... It's hard to cling on to hope when you have no more treatment options available. But it's necessary. I need to have hope for better days. Without hope there would only be despair, and I won't ever get anything done since there wouldn't be motivation to make positive changes. Without hope, the world turns black and all the colour gets sucked away from life. Hope needs to stay strong, it needs to help us get through each difficult moment so that we can feel that there are chances for a better life out there. Hope. What a wonderful word. 

Being the math geek that I am, I couldn't help but make a special equation for my ornaments: 

To have hope, you need to add belief in the possibilities that are out there with a good helping of the love that encourages you to continue on each day. 

This holiday season, remember to hold on to your hope by sharing belief and love with the world! 

Happy Holidays Everyone!

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 (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!

The Kindness of New Friends

Yesterday was just ... awesomesauce! Yes, it's an official word added to the dictionary last year, so I get to use it! I was invited to speak to the wonderful group of people at the Whitby Curling Club about Jacob's Healing Rooms and my love of the anti-bullying movement, ByStander Revolution. Considering that I forgot my prepared speech at home, I think it all went pretty well. I met some very nice and funny people who loved talking to me about all of my experiences (and science of course!). I even made them laugh, tear up, and smile!

The Whitby Curling Club's Book Club Ladies Division, The Monday & Thursday Day Ladies and the Senior Men had seen my newspaper article about Jacob's Healing Rooms and wanted to do something spectacular to help see my wish come true. Together they raised a total of $625.25 to be donated! This kind of generosity leaves me speechless. I love how so many people are coming together to get behind my special project. And I got to talk about all the special things that are close to my heart like Crohn's disease and Anti-Bullying.

I am so lucky to have so many caring and generous people coming into my life. It's people like this that give me the strength to get through my rough days. They restore my faith in people and remind me that there are great people out there just waiting to help someone out.

So a HUGE thank you to the members of the Whitby Curling Club. You all have done something amazing to help out myself and other sick kids. Can't wait to see you all again!

Jacob's Song of the Day (11/21/2015): "The Rainbow Connection" by Kermit the Frog

Today's song is for all the dreamers out there. Never give up your dreams no matter how far away they might feel or the challenges that you face along the way. Today's song is "The Rainbow Connection" by Kermit the Frog. Have a listen and read why I chose this song today:

I'm a dreamer. I'm a wisher. I'm a thinker, planner and full of hopeful ideas. In this way, I'm a lot like Kermit. I also love rainbows, and still think that there's something so magical about the splitting of light into the many colors streaking across the sky. When I think of a rainbow connection, I cannot help but think of the "magical" connections that I've had the opportunity to make so far in my life. Those connections that have happened on the spur of a moment, but came to mean so much more to me than can be explained. Every time someone shares their kind words of support with me, it motivates me even more to keep going and helps me through the difficult bad days. Complete strangers have become these little fireflies giving me hope and strength. They're magical.

Dreamers and a dose of magic are needed to change the world for the better. Jacob's Healing Rooms is a fantastic dream of mine. It's my wish that other kids can have an encouraging environment when they go to get their treatments at the hospital. When I first started my dream felt so huge that I wasn't sure that it would ever take off. It was really hard to get people to take notice of me, the little kid with the big dream. But I stuck with it, and I'm so glad that I did. I've made awesome connections like with #MyGivingMoment, the ByStander Revolution movement, the Dancing Man, Krista (#TheCheerleaders) from the Amazing Race, Chris from The New Electric, my Houston Texans cheerleading squad... It's been an overwhelming outpouring of support which I couldn't be more grateful for! Thanks to EVERYONE who has supported me so far with my dream. I'm going to reach that end of the rainbow soon and Jacob's Healing Rooms will be that pot of gold!

And as for my fundraising update: I set a goal to hit a total of $6000 raised for Jacob's Healing Rooms for Giving Tuesday. I'm now only $350 away! It's such an awesome day!

*To DONATE to JACOB'S HEALING ROOMS click HERE*

A Thank You to a Special Friend

Every now and then some kind stranger comes into your life and their actions leave you feeling completely stunned, but in a good way. I'm lucky enough to be able to say that I've had this happen quite often lately for me. I'd like to tell you about one of these special people: Colitis Ninja (@ColitisNinja on Twitter). Colitis Ninja does a lot of awareness work in the IBD Community, through blogging her experiences, sharing support on Twitter, and creating fabulous IBD Ninja items. One of the wonderful things about Colitis Ninja is her positivity. Living with a chronic disease is difficult, but staying positive in light of the many challenges that come our way, can at times seem like way too big a job. Through humor and positivity Colitis Ninja shares what she's gone through over the years. You should definitely check out her webpage at: www.colitisninja.com

I want to thank Colitis Ninja for being so thoughtful in sending me a fantastic get-better shirt:

The shirt says "I'm a Crohn's Ninja" and here I am doing my best ninja posing. I love my awesome shirt! I'm proud to be a Crohn's Ninja but I'm prouder to be able to call Colitis Ninja my friend. Thanks for being awesome!