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.

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 (10/15/2015): "Little Victories" by Matt Nathanson

Today's song comes from a great guy to see in concert and someone who doesn't get near the attention in the media that he deserves, Matt Nathanson. Matt likes to interact with his audience during his time on stage, often calling people out for paying more attention to their phone than the artist who is trying to pour his heart out. He's got a wicked sense of humor that helps to make him such an entertaining guy on stage. The song I picked today was "Little Victories", have a listen and read why I chose this song today:

"And I'll learn to get by/On the little victories/And if the world decides to catch up with me/Still little victories"

We are all working to get somewhere, to achieve some type of goal. Sometimes our thoughts can be so focused on getting that end result that we can't see the little achievements that we've made along the way. This is so true for us living with an incurable illness. Sometimes we can only see how far we still have left to go on this journey. We can get so concerned with the "final product" that we can't see that we've already accomplished so much. We need to see these little victories. They are what make up our journey and shape our lives.

Yesterday I was talking with the teacher that the school has hired to follow me around in case I need immediate medical support, about what I've been up to. I told her about donating my hair to make a wig for kids with hair loss, about donating my colon to try to find a cure for Inflammatory Bowel Disease. I told her about being honored with The Jack Cornwell Decoration through Scouts Canada (the highest honor given to Scouts Canada participants who have shown great courage and bravery while undergoing serious personal challenges and still serving their community). Then I mentioned that I was a Sick Kids Hospital Ambassador, a representative of the IBD Clinic for their fundraising media, a proud supporter of the ByStander Revolution to get rid of bullying, and doing my own fundraising campaign, Jacob's Healing Rooms, to help brighten the spirits of other sick kids on treatment days. I think her mouth is still hanging open at all that I have done. But then when I thought about it all, it's almost like it's another person I'm thinking about. I couldn't possibly have done all that, could I? Why does it feel like I still haven't done enough, that there is so much more I could do when I've already done so much? I think it's because there's still so much more that I want to do to help others. This is what my life was meant for, I can feel it in my heart. But I also know that I need to celebrate the little victories more. And my biggest little victory is just getting out of bed each day, so I should celebrate each day that that happens.

The Heart Speaks

It was a BIG day today. The day we've all been waiting so (sometimes) patiently for; the meeting with the cardiologist. Recap: Jacob's had a history of tachycardia (fast heart rate) and has become increasingly dizzy, having heart palpitations and feeling faint. He had a hypertensive episode in June, which revealed that he was having prolonged QT waves of his heart, which isn't good. We've been waiting to find out answers since then, and everything else to do with his health has been pending this appointment.

Jacob and I both LOVED this doctor. Amazingly patient with us as we told our long and complicated story, she took the time to answer our questions and was completely willing to accommodate what we were asking of her, which seemed like a lot! After listening to our medical events, looking at his old ECGs and Echocardiograms she isn't sure what to really make of it without further testing. He has had a few abnormal ECGs in the past, but he's also had a couple of normal ones. So unfortunately, it's not a clear cut definitive case of Long QT Syndrome. She noted that he's on a couple of the meds that can prolong QT, but she is hesitant to change them based upon their value to Jacob's functioning. She is questioning whether some of the symptoms and heart changes can be associated with electrolyte imbalances and low potassium. Given that Jacob still has a very limited number of calories going into him daily, we're waiting on the GI doctor to fix this issue, Jacob might be on the malnourished side, especially if his Crohns is not under control. Given the amount of fluid loss for Jacob daily, he's going to need to be connected constantly to his feeding tube when not at school to replace his fluids. From this you can see how connected everything is, and how quickly treatment becomes so complex in a situation like this. For Crohns patients with an ostomy, it's so difficult to stay hydrated, especially if you have issues with overheating and sweating. Then because of that, the rest of the body starts to have complications pop up.

The BEST news of the day? She is going to call the electrophysiologist at Sick Kids to see if we can be seen any sooner!

Jacob's health has been on a steady decline over the past few weeks. Hopefully now that he has been cleared by cardio for surgery, we can start moving forward in attempts to get the Crohns under better control. He's really struggling with a lot more nausea, vomiting and acid reflux, but the fatigue is just weighing him right down.

Jacob is hoping that he'll be able to start school next week. He's really looking forward to being around other kids his age again. He was ready to go this week, but the school needs to put a medical safety plan in place before he can attend and wanted to have a letter from the cardiologist to declare him well enough to attend. Thankfully the cardiologist agreed to do this for us :)

Jacob also hopes to be able to get the strength and energy to record his next YouTube vlog soon, and get back to working on his dream of Jacob's Healing Rooms.  Thanks everyone for supporting us through all this, and please continue to share Jacob's wish to help other sick children; Jacob's Healing Rooms.

Jacob's Before-I-Die Message

The other day I was out geocaching with my family and I came across a "Before-I-Die" wall. For anyone not familiar with what it is; it's a chalk wall where anyone can leave a message starting with the phrase "Before I die I want to....". Call it a community bucket-list of hopes and dreams. Here's a picture of my sister and I in front of the wall. 

I have always wanted to make a difference; to leave a lasting mark on the world and be remembered for helping others. I have one life and it would be a waste to only think of myself. In the past few weeks, I've been reminded that no one knows how long we will be here for. My illnesses remind me daily of this fact. One of the lasting impacts I want to make is on behalf of other children who, like me, need to spend a lot of time at the hospital receiving day-long medical treatments. 

Jacob's Healing Rooms is about helping the emotional and psychological sides of illness. We intend to take the current outpatient day treatment rooms and make them true holisitic places of healing. Every patient treatment chair will be equipped with a Wi-Fi enabled tablet to provide access to the internet as well as to act as a source of entertainment. The physical environment will be refreshed with fresh paint and relaxing light covers. Sensory machines (machines that produce lots of bubbles with floating fish and soothing lights), will be placed in each treatment room. I believe that these changes will help to make treatment day a much improved experience for everyone who needs to visit and help to promote healing. 

Here's a quick message from me. Many apologies for the sound and picture quality, it was a busy noon-hour when we filmed this!

Before I Die I want to know that I've made a difference, will you help me?

Welcome to my first "vlog". This was a practice run of filming our first video blog for my new fundraising project, Jacob's Healing Rooms.

Please join us on Facebook at: https://www.facebook.com/jacobshealingrooms

To make a donation to Jacob's Healing Rooms, Please Visit: http://my.sickkidsdonations.com/PersonalPage.aspx?registrationID=2773538#.VQWyo-xbIdQ.facebook