Dear Politicians,
Today is World Health Day; a day to help promote healthy communities, and the importance of healthcare worldwide. As a person living with several chronic health conditions, healthcare is absolutely vital to my survival. I fear that the direction that the Ontario government is going with healthcare, may not be supportive or benefit the health of us living with chronic illness.
Seven years ago, I was diagnosed with severe Crohn's disease, a form of Inflammatory Bowel Disease. Despite my doctors best efforts, I have yet to reach remission in those 7 years, which has led to 19 trips to the Operating Room, the surgical removal of my colon, and many long hospitalizations. Prolonged inflammation can lead to cell changes and the development of colo-rectal cancers, which is the second most deadly form of cancer a patient can have. In June 2018, I was diagnosed with rectal cancer at the age of 14. Tomorrow, I will be having my rectum removed for Operating Room trip #20.
Did you know that colo-rectal cancer, when it's caught in the early stages, happens to be one of the most curable cancers to have? I'm among the extremely lucky; because of regular colonoscopies, the doctors caught my cancer in the early stages. If it hadn't been for the frequent monitoring to look for these changes, my cancer story would be very different.
My cancer surgery doesn't scare me as much as the proposed changes to OHIP that allows Ontario residents access to healthcare services. Patients with Inflammatory Bowel Disease can develop intestinal blockages, strictures (narrowing of the intestines) and have an increased risk of intestinal perforation during these procedures. The procedure itself can be painful to those who have significant inflammation in the bottom part of their intestines, and can also lead to increased anxiety. It is my worry that with the increased risks associated with unsedated colonoscopies, heightened anxiety and push to do less frequent scopes, that IBD patients will put off these procedures. Colo-rectal cancer can be quick to develop, I went from inflammatory cells to cancer cells within 6 months. Quite simply, a colonoscopy saved my life.
I am writing in hopes that my government leaders will take a moment to consider how their proposed changes will negatively impact the health of so many. Yes, there is a cost to doing regular, sedated colonoscopies, but there is a higher cost associated with not doing them. The cost of chemotherapy, radiation, diagnostic and monitoring tests for someone with advanced cancer will exceed the costs of regular preventative tests. Promoting the health of all Ontario residents can help to avoid the costs to the economy and ensure that we all can contribute to society.
The province of Ontario has the chance to be a leader in providing great healthcare. My future depends on the decisions that you will make in the near future. Please, reconsider these changes and find ways of promoting the health of everyone.
Sincerely,
Jacob Ralston
Showing posts with label Crohn's Disease. Show all posts
Showing posts with label Crohn's Disease. Show all posts
Sunday, April 7, 2019
Tuesday, November 27, 2018
Giving Tuesday 2018
Giving Tuesday 2018 starts with a picture:
They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?
Now what if I told you that this is an outpatient treatment room at a children's hospital?
Now what if I told you that this is an outpatient treatment room at a children's hospital?
My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.
As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.
This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.
I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.
To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076
As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.
This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.
I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.
To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076
THANK YOU!
Tuesday, May 29, 2018
Mom's Got Guts: My Mom explains why she is walking in Gutsy Walk 2018
As a parent, you have dreams for your kids. You dream that they will find their passion in life, that they will be successful, that they will have lasting happiness. You dream of sports teams, sleepovers and birthday parties. You dream that their life will lead them places you never thought possible. You don't dream of weekly medical appointments, of hearing the words "we're not sure what's going on" in relation to your kid's health, or of what it's like to wait in the Operating Room's Waiting Room. You certainly don't dream of your child's early death.
Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".
This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.
As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.
In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.
With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.
Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".
This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.
As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.
In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.
With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.
Friday, May 11, 2018
What I Would Teach to New Doctors
Dear New Doctor,
Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.
As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.
The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.
Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.
It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients.
Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected.
Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.
To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.
Thanks for reading!
Wishing you the best in your future,
Jacob
Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.
As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.
The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.
Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.
It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients.
Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected.
Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.
To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.
Thanks for reading!
Wishing you the best in your future,
Jacob
Wednesday, April 25, 2018
Education for all? Well... Sort of.
Some things we take for granted. Take education: many of us kids wish and dream for snow days, or extra p.a. days so that we don't have to go to school. Education in Ontario is a guarantee with educational opportunities available free of charge to all kids living in the province up until high-school graduation. Courses are offered at various levels from basic to advanced and gifted depending upon the student's goals: the workforce, college or university. Although we don't often appreciate the homework that comes with school, it's school that opens the door to the future.
For me, the system is broken. I am one of those kids stuck in a limbo between being too sick to attend school with any sort of regularity, but not sick enough to be admitted to the hospital and entered into their hospital-based school. I attempted to get back to attending highschool this year; it was an epic failure that resulted in being hospitalized for almost 2 months and developing intestinal failure as a result of contracting a simple bug. You see, I take immuno-suppressants to combat my Crohn's Disease. This means that any little thing that comes along, I tend to catch it and it tends to develop into something nasty like pneumonia. Preventing this is not as simple as "wash your hands", which does help, but in a school of thousands, when there is a viral outbreak, there is often no real escape.
As a result of developing the pneumonia and intestinal failure this past year, I was unable to complete the two credits I was working towards. Even though I had 90% in grade 9 gifted science, I lost the credit. It was both devastating and angering. I had put so much work and energy into keeping up, and ended up with nothing to show for it. This caused me to really sit down and think about my options.
To be realistic, I am not going to get much better. I have refractory Crohn's Disease, which is a fancy way of saying "nothing works". In 6 years, I haven't had one single period of remission. My current treatment has helped, but it hasn't been the complete answer to put me into remission. I have run out of available treatment options, so now we're on to symptom management. I will likely always have some degree of immune suppression due to my auto-immune illnesses. So in being realistic, I have to look at the past history when I am trying to plan for what might work for my future. And attending a regular highschool doesn't seem to work well for me. I don't want to keep putting in massive amounts of work only to lose it all because I contracted some simple bug. There had to be another solution.
The only other education option available free of charge to me is through the Student Alternative Learning Program. The only courses available however are at a basic learning level. I went from being at the top of my class in the competitive gifted program to doing basic level work. Everyone keeps telling me how "lucky" I am that I get easier work, that I should be able to just fly through it. For me, it is anything but easy. The only way that I can describe the work I am being given is mind-numbingly boring, and even that doesn't quite get at the real feeling.
When I was in grade 1, I refused to do work. Once we initially learned how to do something, I wanted to move on, I didn't feel the need to practice something that came as natural to me as breathing. So I would sit there and cause problems. My mom was encouraged to send me for psycho-educational testing which revealed that I was highly gifted in my analytic and reasoning skills, and my abstract thinking was off the charts. I was also diagnosed with ADHD and dyslexia. Unfortunately, educational options for children who learn similarly to me, didn't start until grade 4. By then I was too sick for school most of the time, but still being given gifted level material to work on.
And then we have this work. Just to give you an example: I learned how to do a bar graph in kindergarten when we all chose our favourite ice cream flavour and we would chart out the numbers. In my grade 9 work, it described to us step-by-painful-step exactly what we needed to do. It felt condescending. It brought tears to my eyes to have gone from work that was much more demanding to this. The work is also full of spelling errors and outdated information, but that's so low on the list of priorities that need to be changed.
I understand that the system isn't designed for kids like me, and that kids like me are unique and don't come along each day. But we are out there. I also understand that they need to make sure that they have resources available for kids who don't learn concepts as easily, so they have to be able to cover most of the population regardless of ability. Yet to have NO options available that would allow us to get to university without being forced to seek education elsewhere? That just doesn't seem right to me.
I sincerely hope that this can change. This needs to change. We all deserve the opportunity to fulfill our dreams, regardless of our state of health. Yet we can only get there if there are programs in place to allow us to successfully get there. Only when the opportunities and supports are there can education truly be available for us all.
For me, the system is broken. I am one of those kids stuck in a limbo between being too sick to attend school with any sort of regularity, but not sick enough to be admitted to the hospital and entered into their hospital-based school. I attempted to get back to attending highschool this year; it was an epic failure that resulted in being hospitalized for almost 2 months and developing intestinal failure as a result of contracting a simple bug. You see, I take immuno-suppressants to combat my Crohn's Disease. This means that any little thing that comes along, I tend to catch it and it tends to develop into something nasty like pneumonia. Preventing this is not as simple as "wash your hands", which does help, but in a school of thousands, when there is a viral outbreak, there is often no real escape.
As a result of developing the pneumonia and intestinal failure this past year, I was unable to complete the two credits I was working towards. Even though I had 90% in grade 9 gifted science, I lost the credit. It was both devastating and angering. I had put so much work and energy into keeping up, and ended up with nothing to show for it. This caused me to really sit down and think about my options.
To be realistic, I am not going to get much better. I have refractory Crohn's Disease, which is a fancy way of saying "nothing works". In 6 years, I haven't had one single period of remission. My current treatment has helped, but it hasn't been the complete answer to put me into remission. I have run out of available treatment options, so now we're on to symptom management. I will likely always have some degree of immune suppression due to my auto-immune illnesses. So in being realistic, I have to look at the past history when I am trying to plan for what might work for my future. And attending a regular highschool doesn't seem to work well for me. I don't want to keep putting in massive amounts of work only to lose it all because I contracted some simple bug. There had to be another solution.
The only other education option available free of charge to me is through the Student Alternative Learning Program. The only courses available however are at a basic learning level. I went from being at the top of my class in the competitive gifted program to doing basic level work. Everyone keeps telling me how "lucky" I am that I get easier work, that I should be able to just fly through it. For me, it is anything but easy. The only way that I can describe the work I am being given is mind-numbingly boring, and even that doesn't quite get at the real feeling.
When I was in grade 1, I refused to do work. Once we initially learned how to do something, I wanted to move on, I didn't feel the need to practice something that came as natural to me as breathing. So I would sit there and cause problems. My mom was encouraged to send me for psycho-educational testing which revealed that I was highly gifted in my analytic and reasoning skills, and my abstract thinking was off the charts. I was also diagnosed with ADHD and dyslexia. Unfortunately, educational options for children who learn similarly to me, didn't start until grade 4. By then I was too sick for school most of the time, but still being given gifted level material to work on.
And then we have this work. Just to give you an example: I learned how to do a bar graph in kindergarten when we all chose our favourite ice cream flavour and we would chart out the numbers. In my grade 9 work, it described to us step-by-painful-step exactly what we needed to do. It felt condescending. It brought tears to my eyes to have gone from work that was much more demanding to this. The work is also full of spelling errors and outdated information, but that's so low on the list of priorities that need to be changed.
I understand that the system isn't designed for kids like me, and that kids like me are unique and don't come along each day. But we are out there. I also understand that they need to make sure that they have resources available for kids who don't learn concepts as easily, so they have to be able to cover most of the population regardless of ability. Yet to have NO options available that would allow us to get to university without being forced to seek education elsewhere? That just doesn't seem right to me.
I sincerely hope that this can change. This needs to change. We all deserve the opportunity to fulfill our dreams, regardless of our state of health. Yet we can only get there if there are programs in place to allow us to successfully get there. Only when the opportunities and supports are there can education truly be available for us all.
Monday, March 26, 2018
Opportunity Knocked, Or Tweeted, and I Answered: My Patient 2 Patient Education Project Experience
Opportunities. Every day we are faced with opportunities; the opportunity for change, to learn, to help make a difference in this world, to make choices. Even just waking up is an opportunity in that you get the chance to do another day. Late last fall, I was given a major opportunity to represent the child-adolescent patient voice at an IBD (Inflammatory Bowel Disease) conference called "Patient 2 Patient Education Project", or P2PEP, for when that name sounds way long! Of course, I immediately grabbed for this amazing opportunity. To be the first pediatric patient that the University of Michigan IBD Program has invited to speak at this event, alongside other well known IBD advocates in the social media world, was a great honor.
Events like P2PEP are so important to our IBD community. These events are a chance for patients to come together to see that they're not alone, that their struggles are often similar to others. Like how my struggles as a 14 year old with Crohn's, can be just as similar to the 60 year old living with the disease. It's an opportunity to look around and see that you truly are not alone on your journey.
P2PEP is a chance to learn from both patients and experienced doctors. No one talks about our disease. It's almost impossible to find what some people call a "socially acceptable time" to discuss our symptoms with our friends, families, strangers in the elevator, etc. Here's how I see that conversation going:
Friend: How's it goin'?
Me: Well last night, I couldn't make it to the toilet and ended up coating the floors with vomit. As if that wasn't enough, my ostomy bag let loose and sent poop everywhere in a massive code brown incident.
Friend: *crickets*
Unfortunately, for a lot of IBD patients, these are common statements. There is no good and acceptable time to talk about what happens with our body functions. Our disease is one of silent suffering when it's not "right" to talk about it. Yet the only way we're going to educate other people, and find a cure for this disease is if we tell our story. If we shout our stories out loud, and keep shouting, awareness will grow. P2PEP gives us an opportunity to come together to give voice to what is important to us as patients, to address the things that might not always get covered in the often-too-quick medical appointments, like partnering with your medical team, how to get the most out of your doctor visits, and more about the other treatments you likely have not heard about.
The great thing about P2PEP is that it's an event for everyone regardless of age. You might not think that's a big thing, but for teens like me, I think we often feel left out of big medical conferences that aren't specific to the pediatric population. The topics discussed are ones that are actually chosen alongside the patients, to hopefully cover what is important to them and what they want to learn. And that means even us pediatric patients. For example, this year I presented with Dr. Neef on the topic of Diet, Growth and Puberty in IBD, and how those things can be particularly challenging for us as patients. Another talk focused on the idea of transitioning from Pediatric to Adult Care, something that sooner or later, us pediatric patients are going to be forced to do. Which is kind of scary when you aren't prepared for it. So P2PEP really does try to touch on it all within a few short, crazy hours, to give a quick "highlights" of what's going on in the IBD world and why this matters to patients.
I had a great time meeting other doctors, fellow health advocates, and patients, it all came to a close way too quickly, like it was just a dream. As exhausting as the day was for me physically, I left feeling inspired by others, and that is always a great feeling to part such awesome company with. It certainly was a dream of an opportunity.
Events like P2PEP are so important to our IBD community. These events are a chance for patients to come together to see that they're not alone, that their struggles are often similar to others. Like how my struggles as a 14 year old with Crohn's, can be just as similar to the 60 year old living with the disease. It's an opportunity to look around and see that you truly are not alone on your journey.
P2PEP is a chance to learn from both patients and experienced doctors. No one talks about our disease. It's almost impossible to find what some people call a "socially acceptable time" to discuss our symptoms with our friends, families, strangers in the elevator, etc. Here's how I see that conversation going:
Friend: How's it goin'?
Me: Well last night, I couldn't make it to the toilet and ended up coating the floors with vomit. As if that wasn't enough, my ostomy bag let loose and sent poop everywhere in a massive code brown incident.
Friend: *crickets*
Unfortunately, for a lot of IBD patients, these are common statements. There is no good and acceptable time to talk about what happens with our body functions. Our disease is one of silent suffering when it's not "right" to talk about it. Yet the only way we're going to educate other people, and find a cure for this disease is if we tell our story. If we shout our stories out loud, and keep shouting, awareness will grow. P2PEP gives us an opportunity to come together to give voice to what is important to us as patients, to address the things that might not always get covered in the often-too-quick medical appointments, like partnering with your medical team, how to get the most out of your doctor visits, and more about the other treatments you likely have not heard about.
The great thing about P2PEP is that it's an event for everyone regardless of age. You might not think that's a big thing, but for teens like me, I think we often feel left out of big medical conferences that aren't specific to the pediatric population. The topics discussed are ones that are actually chosen alongside the patients, to hopefully cover what is important to them and what they want to learn. And that means even us pediatric patients. For example, this year I presented with Dr. Neef on the topic of Diet, Growth and Puberty in IBD, and how those things can be particularly challenging for us as patients. Another talk focused on the idea of transitioning from Pediatric to Adult Care, something that sooner or later, us pediatric patients are going to be forced to do. Which is kind of scary when you aren't prepared for it. So P2PEP really does try to touch on it all within a few short, crazy hours, to give a quick "highlights" of what's going on in the IBD world and why this matters to patients.
I had a great time meeting other doctors, fellow health advocates, and patients, it all came to a close way too quickly, like it was just a dream. As exhausting as the day was for me physically, I left feeling inspired by others, and that is always a great feeling to part such awesome company with. It certainly was a dream of an opportunity.
Friday, June 30, 2017
A Letter About Character
Dear Teachers, Educators and Others in the Educational System;
Thank you. You have taught me a lot over the last 10 years. Yes, you've taught me math, and I've taught you "better" ways of doing that same math. You've taught me science and I've expanded upon your lessons to the university level and beyond. But most importantly, you've taught me about character, and now I'd like to take the chance to talk to you about some of those character traits that have been emphasized so much over the past 10 years, and how I've experienced them on my journey.
You might think of me as one of your "problem students". From grades 4-8 I've missed an insane amount of school. You see, in grade 3, I was diagnosed with severe Crohn's Disease, and would spend a fair amount of the next few years just trying to get that stabilized. While trying to get that figured out, I started having major, tear-inducing pain in my joints leading to a diagnosis of Ehlers-Danlos Syndrome, and potentially arthritis. Simple things that the majority of my classmates do without even hesitating, bring me great pain. Just standing up out of bed in the morning brings enough pain for me to have tears and sometimes scream out. When I walk, I have a tendency for my ankles to pop slightly out of place. Over and over again. Unfortunately, for school, this means that I struggle physically just to be there. I miss a lot of classes, and of course as a teacher you have no idea when I might be coming back so there is no ability to plan for my absences. I can empathize that it must be difficult on the days that I do show up and you need to figure out what to do with me. Remember, it's hard for me too. I leave when you're teaching one unit, and often on my return, we're doing something completely different and I have to find out, once again, where I fit in and how best to get up to speed. We really are in this problem together, so we need to work together to find solutions.
Inclusiveness. I have heard this word so much and I think it's really easy to throw this word around but under the surface it can be hard to actually be inclusive. Inclusiveness is the act of including everyone, to the best of their abilities, regardless of gender, sexual orientation, race, or physical limitations. It's about honoring the fact that every single one of us has something of value to contribute. It's about having policies and programs that represent everyone's needs and allows them to get the best possible education, and to have a positive experience while doing so. Why is Inclusiveness so important? Because we all matter. One of the basic human needs according to Maslow, is the need for belonging. I want to feel that I matter. I want to feel like I am important. The classroom plays a huge role in this because this is where I will spend the majority of my years growing up. This is where I first learn about those differences in a larger setting outside the home. Every day that you have a group of children sitting in front of you, is another day that you have a chance to not only teach inclusiveness but to actually live it. You see that child that is sitting on the sidelines? You can invite him back into the group. You know that someone is really struggling at home? Taking a few seconds to ask if there is anything you can do to make it easier can let a child know you care. You see a child who is physically struggling to hold back tears of pain? Reassure them that you're proud of the effort it takes just to be in class. Find a way of including a child who frequently misses school in group projects, rather than making them do everything on their own. When planning for a class trip, you should give thought to the physical abilities of your students. For example, my grade 8 graduation class trip was to an Outdoor Centre, which I wouldn't have been able to participate in due to accessibility issues. I wasn't well enough to attend anyway, but it would have felt a bit more "inclusive" if they had even considered the known fact that I had physical limitations when they were planning this trip. It hurt a bit. Little things can make a huge difference and make each of us feel included.
Diversity. Each of us students enters the school system bringing with us a whole range of experiences both good and bad. We bring a range of abilities; some of us will be the future Usain Bolts, others of us will do good if we don't trip over our own feet. We all come with different levels of skills at the different subjects and different ways of learning those skills. To value diversity, you need to sometimes think outside the box for new ways of reaching everyone and accepting the different unique talents that come to your class. It's not just the students' skills that are diverse, but also the problems that they bring to the class. Class lessons may benefit from finding a way to work with this diversity. It's a learning opportunity for other classmates to be able to learn how they can combine all of their unique skills together to benefit everyone. Celebrating differences can make people like me, who have quite unique situations, feel valued and included. And we all like to feel that way.
Acceptance. At the most basic we are human, which means that we are all equal. You teach us that we are supposed to accept everyone for what we bring to the table, for who they are and where they are on this wonderful path of life. You teach us that regardless of our differences, we are all part of the same community. Acceptance doesn't mean that you have to like whatever it is you are accepting, instead it means that you accept it as the reality. For almost 3 years, I have vomited daily. I am not trying to be difficult when this happens or when the extreme nausea and the pain take over. This is just my physical reality. I am sick. With a chronic illness. This means that I am going to suddenly stand up and leave class when my best efforts at controlling my symptoms on my own fail. I don't want this to be happening, but this is my reality so I must accept it. Unfortunately, I often felt guilty for disrupting the class, over something that was completely out of my control. Sometimes I don't look sick, which I've often felt has worked against me. It's easy to forget that a person can be seriously struggling personally when there are no visual reminders, and I've found that it frequently leads to a lot of wrong assumptions about my health and abilities. The schools need to accept that they don't often know what the student is personally struggling with, whether it is something at home, something on the playground, or something as serious as their health. No child should feel less of a person because of their personal circumstances.
Respect. You've taught us to wait our turn, to listen to one another's opinion and compromise, to honor our differences and take pride in our and others' accomplishments. Feeling respected is something that we should all expect to feel in our day to day interactions with each other. Respect is more than just a word, it needs to be shown in actions as well as words. Teachers are in a unique situation to be able to model of integrity by not only teaching respect but also embodying it in their everyday interactions. Your words and actions matter. I've had experiences of feeling both respected and disrespected, and feeling disrespected always made everything about the day harder, something I really don't need to have happen since my days are hard enough. Respect is such a simple thing that it should really be the base for all interactions with others.
Lastly, I want to talk about Empathy. I don't want you to feel sorry for me. Instead, I want you to try to put yourself into my shoes and try to understand where I'm coming from each day. Each of us face unique challenges in our lives. I started my grade 4 year at a new school, not knowing anyone, and had just started off my Crohn's journey. In the next 5 years I had 6 major hospitalizations (a month or more), 17 Operating Rooms Trips, and countless medical appointments. This meant that in grade 4 I missed 74 days of school. In grade 5, I missed 76 days. In grade 6, when my daily vomiting started I missed from October onwards. In grades 7 & 8, I only had a handful of days. It impacted my relationships with other kids, and effected every area of my life. I know it's hard to really even imagine being a kid and going through all of that, without having had first-hand experience. Chronic illness is often an uncomfortable subject. It's hard to know what to say to someone who is going through something unimaginable. Just listening and asking questions is all I need to tell me that you are at least trying to understand. You can never go wrong when you come from a place of kindness and compassion. Teaching empathy helps to encourage students to change the world for the benefit of everyone, and is an extremely valuable lesson.
I came to you this small 3 year old child for Junior Kindergarten (my birthday is in December so I'm usually the youngest in the class), and now I leave grade 8, still smaller than my classmates, but with a huge appetite for improving the way this world works. I hope that my reflections on these character traits can help advocate for the needs of other students like me, who don't fit into the typical mold of a student. You as educators have the power to teach and model these important traits, so that others will grow up into responsible young people capable of achieving anything. After all, it was the skills that you taught me that have allowed me to become the young advocate that I am today. Thank you.
Sincerely,
Jacob Ralston
Thank you. You have taught me a lot over the last 10 years. Yes, you've taught me math, and I've taught you "better" ways of doing that same math. You've taught me science and I've expanded upon your lessons to the university level and beyond. But most importantly, you've taught me about character, and now I'd like to take the chance to talk to you about some of those character traits that have been emphasized so much over the past 10 years, and how I've experienced them on my journey.
You might think of me as one of your "problem students". From grades 4-8 I've missed an insane amount of school. You see, in grade 3, I was diagnosed with severe Crohn's Disease, and would spend a fair amount of the next few years just trying to get that stabilized. While trying to get that figured out, I started having major, tear-inducing pain in my joints leading to a diagnosis of Ehlers-Danlos Syndrome, and potentially arthritis. Simple things that the majority of my classmates do without even hesitating, bring me great pain. Just standing up out of bed in the morning brings enough pain for me to have tears and sometimes scream out. When I walk, I have a tendency for my ankles to pop slightly out of place. Over and over again. Unfortunately, for school, this means that I struggle physically just to be there. I miss a lot of classes, and of course as a teacher you have no idea when I might be coming back so there is no ability to plan for my absences. I can empathize that it must be difficult on the days that I do show up and you need to figure out what to do with me. Remember, it's hard for me too. I leave when you're teaching one unit, and often on my return, we're doing something completely different and I have to find out, once again, where I fit in and how best to get up to speed. We really are in this problem together, so we need to work together to find solutions.
Inclusiveness. I have heard this word so much and I think it's really easy to throw this word around but under the surface it can be hard to actually be inclusive. Inclusiveness is the act of including everyone, to the best of their abilities, regardless of gender, sexual orientation, race, or physical limitations. It's about honoring the fact that every single one of us has something of value to contribute. It's about having policies and programs that represent everyone's needs and allows them to get the best possible education, and to have a positive experience while doing so. Why is Inclusiveness so important? Because we all matter. One of the basic human needs according to Maslow, is the need for belonging. I want to feel that I matter. I want to feel like I am important. The classroom plays a huge role in this because this is where I will spend the majority of my years growing up. This is where I first learn about those differences in a larger setting outside the home. Every day that you have a group of children sitting in front of you, is another day that you have a chance to not only teach inclusiveness but to actually live it. You see that child that is sitting on the sidelines? You can invite him back into the group. You know that someone is really struggling at home? Taking a few seconds to ask if there is anything you can do to make it easier can let a child know you care. You see a child who is physically struggling to hold back tears of pain? Reassure them that you're proud of the effort it takes just to be in class. Find a way of including a child who frequently misses school in group projects, rather than making them do everything on their own. When planning for a class trip, you should give thought to the physical abilities of your students. For example, my grade 8 graduation class trip was to an Outdoor Centre, which I wouldn't have been able to participate in due to accessibility issues. I wasn't well enough to attend anyway, but it would have felt a bit more "inclusive" if they had even considered the known fact that I had physical limitations when they were planning this trip. It hurt a bit. Little things can make a huge difference and make each of us feel included.
Diversity. Each of us students enters the school system bringing with us a whole range of experiences both good and bad. We bring a range of abilities; some of us will be the future Usain Bolts, others of us will do good if we don't trip over our own feet. We all come with different levels of skills at the different subjects and different ways of learning those skills. To value diversity, you need to sometimes think outside the box for new ways of reaching everyone and accepting the different unique talents that come to your class. It's not just the students' skills that are diverse, but also the problems that they bring to the class. Class lessons may benefit from finding a way to work with this diversity. It's a learning opportunity for other classmates to be able to learn how they can combine all of their unique skills together to benefit everyone. Celebrating differences can make people like me, who have quite unique situations, feel valued and included. And we all like to feel that way.
Acceptance. At the most basic we are human, which means that we are all equal. You teach us that we are supposed to accept everyone for what we bring to the table, for who they are and where they are on this wonderful path of life. You teach us that regardless of our differences, we are all part of the same community. Acceptance doesn't mean that you have to like whatever it is you are accepting, instead it means that you accept it as the reality. For almost 3 years, I have vomited daily. I am not trying to be difficult when this happens or when the extreme nausea and the pain take over. This is just my physical reality. I am sick. With a chronic illness. This means that I am going to suddenly stand up and leave class when my best efforts at controlling my symptoms on my own fail. I don't want this to be happening, but this is my reality so I must accept it. Unfortunately, I often felt guilty for disrupting the class, over something that was completely out of my control. Sometimes I don't look sick, which I've often felt has worked against me. It's easy to forget that a person can be seriously struggling personally when there are no visual reminders, and I've found that it frequently leads to a lot of wrong assumptions about my health and abilities. The schools need to accept that they don't often know what the student is personally struggling with, whether it is something at home, something on the playground, or something as serious as their health. No child should feel less of a person because of their personal circumstances.
Respect. You've taught us to wait our turn, to listen to one another's opinion and compromise, to honor our differences and take pride in our and others' accomplishments. Feeling respected is something that we should all expect to feel in our day to day interactions with each other. Respect is more than just a word, it needs to be shown in actions as well as words. Teachers are in a unique situation to be able to model of integrity by not only teaching respect but also embodying it in their everyday interactions. Your words and actions matter. I've had experiences of feeling both respected and disrespected, and feeling disrespected always made everything about the day harder, something I really don't need to have happen since my days are hard enough. Respect is such a simple thing that it should really be the base for all interactions with others.
Lastly, I want to talk about Empathy. I don't want you to feel sorry for me. Instead, I want you to try to put yourself into my shoes and try to understand where I'm coming from each day. Each of us face unique challenges in our lives. I started my grade 4 year at a new school, not knowing anyone, and had just started off my Crohn's journey. In the next 5 years I had 6 major hospitalizations (a month or more), 17 Operating Rooms Trips, and countless medical appointments. This meant that in grade 4 I missed 74 days of school. In grade 5, I missed 76 days. In grade 6, when my daily vomiting started I missed from October onwards. In grades 7 & 8, I only had a handful of days. It impacted my relationships with other kids, and effected every area of my life. I know it's hard to really even imagine being a kid and going through all of that, without having had first-hand experience. Chronic illness is often an uncomfortable subject. It's hard to know what to say to someone who is going through something unimaginable. Just listening and asking questions is all I need to tell me that you are at least trying to understand. You can never go wrong when you come from a place of kindness and compassion. Teaching empathy helps to encourage students to change the world for the benefit of everyone, and is an extremely valuable lesson.
I came to you this small 3 year old child for Junior Kindergarten (my birthday is in December so I'm usually the youngest in the class), and now I leave grade 8, still smaller than my classmates, but with a huge appetite for improving the way this world works. I hope that my reflections on these character traits can help advocate for the needs of other students like me, who don't fit into the typical mold of a student. You as educators have the power to teach and model these important traits, so that others will grow up into responsible young people capable of achieving anything. After all, it was the skills that you taught me that have allowed me to become the young advocate that I am today. Thank you.
Sincerely,
Jacob Ralston
Monday, June 12, 2017
Child & Family Centered Care Week at Sick Kids Hospital
Last week I had the incredible opportunity to be a part of a panel discussion on Engaging Patients as part of Child & Family Centered Care Week at Sick Kids Hospital. It was an amazing honor to give a
voice to the other patients in the hospital and their families.
I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)
★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.
My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.
Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.
Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.
Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.
I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.
But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.
Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"
For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"
There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.
Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.
When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.
I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.
I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.
But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.
Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.
The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.
Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★
I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)
★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.
My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.
Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.
Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.
Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.
I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.
But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.
Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"
For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"
There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.
Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.
I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.
I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.
But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.
Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.
The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.
Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★
Tuesday, March 28, 2017
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.
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!
Monday, January 16, 2017
Love, Time and Death - The Trio of Life
Yesterday I saw the movie Collateral Beauty. It's about this guy, Howard, struggling with the grief from losing a child and his search for meaning while trying to put his life back together. In his search, he writes letters to concepts - Love, Death and Time, the three things that connect us all.
It's a movie that makes you think. Can there be beauty through pain, suffering and loss? Can we really take tragedy and see light within the darkness? Is there such a thing as beauty in ugliness?
I think so. Love is within everything. It's the passion, it's the motivation, it's the inspiration. Love is the creative force in this world and everything is created out of love. Love is the main reason for doing what you do. But love is also in the struggles. Love gives us a reason to keep going each day, a reason to get out of bed.
Living with Crohn's Disease is ugly. I've had 15 sets of gastroscopies, colonoscopies/ileoscopies, proctoscopies, all with biopsies. I've had my colon removed and now have an ostomy. I have a permanent/long-term feeding tube. I've had to live through severe side effects caused by Remicade, then Humira, and then allergies to a list of things longer than I am tall. I've had some pretty painful procedures like rectal ultrasounds, skin shavings and skin biopsies. I've had a few nights where I wasn't sure if I'd wake up to a tomorrow, such as when I had my hypertensive crisis episode and collapsed at the Train concert. Or when I had pneumonia and aspirated into my lungs. It's ugly. Yet, there is still love to be found in all of this suffering. Love is what lifts me up to keep me going each day. Love are the complete strangers that reach out with little notes of encouragement. Love are the little rays of light in otherwise very long, dark days.
Time gives us a chance to use our love, to transform the ugly into beauty. Time is the hope for tomorrows, the hope for a better future. Time is an opportunity. No one knows what tomorrow brings, the only time that we have is now. Time and Love give us the opportunity to create a lasting impression on the world. We have this moment to make a difference, we can make this moment matter. I'm very aware that our time here is short, and can be much shorter than any of us could have dreamt of. I want to leave something beautiful behind when I die. I want my life to have meant something. I want to be remembered as the kid who did something positive to make this world a better place.
Death. We fear it. We want to run and hide from it. But death isn't necessarily to be feared. To me, I think of death as the beginning, the point where your old life is going to meet a new life, just possibly in a new form. And that's exciting since it means that there never really is a final "goodbye", that we're connected together even after death. It's the beautiful side of death that is often overshadowed by the grief death creates. Even out of the pain of death, beauty still exists. Proof of this can be found in any of the deceased transplant donors, or in the charities that are created after the death of a loved one.
Everything comes down to acceptance, which also comes over time and with love. You accept that things change. You accept the reality of your situation for what it is. You accept your personal limitations. You accept your life for what it is - a journey filled with possibilities but not without challenges as well. Acceptance is necessary to truly live, if you don't accept the positives and the negatives in your life, you spend so much more energy fighting back against them rather than spending your energy moving forward. I accept that I have multiple illnesses that I will live with for the rest of my life. That doesn't mean that I am happy to have Crohn's Disease or Ehlers-Danlos Syndrome but I have to accept that these will be in my life as part of my path to happiness.
So the next time you're faced with a crisis, stop, breathe, and try to look for the beauty, look for your opportunity to turn the ugly into something beautiful. Make today matter.
It's a movie that makes you think. Can there be beauty through pain, suffering and loss? Can we really take tragedy and see light within the darkness? Is there such a thing as beauty in ugliness?
I think so. Love is within everything. It's the passion, it's the motivation, it's the inspiration. Love is the creative force in this world and everything is created out of love. Love is the main reason for doing what you do. But love is also in the struggles. Love gives us a reason to keep going each day, a reason to get out of bed.
Living with Crohn's Disease is ugly. I've had 15 sets of gastroscopies, colonoscopies/ileoscopies, proctoscopies, all with biopsies. I've had my colon removed and now have an ostomy. I have a permanent/long-term feeding tube. I've had to live through severe side effects caused by Remicade, then Humira, and then allergies to a list of things longer than I am tall. I've had some pretty painful procedures like rectal ultrasounds, skin shavings and skin biopsies. I've had a few nights where I wasn't sure if I'd wake up to a tomorrow, such as when I had my hypertensive crisis episode and collapsed at the Train concert. Or when I had pneumonia and aspirated into my lungs. It's ugly. Yet, there is still love to be found in all of this suffering. Love is what lifts me up to keep me going each day. Love are the complete strangers that reach out with little notes of encouragement. Love are the little rays of light in otherwise very long, dark days.
Time gives us a chance to use our love, to transform the ugly into beauty. Time is the hope for tomorrows, the hope for a better future. Time is an opportunity. No one knows what tomorrow brings, the only time that we have is now. Time and Love give us the opportunity to create a lasting impression on the world. We have this moment to make a difference, we can make this moment matter. I'm very aware that our time here is short, and can be much shorter than any of us could have dreamt of. I want to leave something beautiful behind when I die. I want my life to have meant something. I want to be remembered as the kid who did something positive to make this world a better place.
Death. We fear it. We want to run and hide from it. But death isn't necessarily to be feared. To me, I think of death as the beginning, the point where your old life is going to meet a new life, just possibly in a new form. And that's exciting since it means that there never really is a final "goodbye", that we're connected together even after death. It's the beautiful side of death that is often overshadowed by the grief death creates. Even out of the pain of death, beauty still exists. Proof of this can be found in any of the deceased transplant donors, or in the charities that are created after the death of a loved one.
Everything comes down to acceptance, which also comes over time and with love. You accept that things change. You accept the reality of your situation for what it is. You accept your personal limitations. You accept your life for what it is - a journey filled with possibilities but not without challenges as well. Acceptance is necessary to truly live, if you don't accept the positives and the negatives in your life, you spend so much more energy fighting back against them rather than spending your energy moving forward. I accept that I have multiple illnesses that I will live with for the rest of my life. That doesn't mean that I am happy to have Crohn's Disease or Ehlers-Danlos Syndrome but I have to accept that these will be in my life as part of my path to happiness.
So the next time you're faced with a crisis, stop, breathe, and try to look for the beauty, look for your opportunity to turn the ugly into something beautiful. Make today matter.
Wednesday, December 14, 2016
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 youboth 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.
Monday, November 7, 2016
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.
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.
Monday, September 19, 2016
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.
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 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.
Sunday, September 11, 2016
The Great Return...The School Year Begins
Stop the presses! This week I did something that I haven't really done in the last 2 years, I went to school. Not only did I finally manage to walk through the front doors, but I made it through two complete days!
It was almost like being a rock star. I walked around the corner of the school to gasps, and hearing my name over and over again. My old school friends hadn't forgotten me, which was clear since I was surrounded by people coming up to welcome me back. It's a weird feeling to try to pick up where you left off when it's been 2 years, something worthy of an episode of the Twilight Zone.
Physically, I'm exhausted. I'm in pain. And I'm constantly overheated since the class is not air-conditioned and it's hotter than India here right now. Which also means I'm constantly dehydrated. It's similar to the song about bones, except:
"The overheating is connected to the... dehydration.
The dehydration is connected to the... dizziness.
The dizziness is connected to the vomiting.
And around the loop we go".
Yet I'm still lucky. I, at least, got to experience my first day alongside everyone else. There are some kids who don't get to have this experience because they're in the hospital, or at home too sick to go, or in some type of treatment room. For once I was able to do something so incredibly "normal", that it's often taken for granted by so many of my friends. Two years away from everything has taught me to be a bit more thankful for the "normal" experiences that I do have. I may not be able to run around the school-yard with my friends, join any sports teams, or even participate in some classes with my friends (I am not allowed to do gym, and I haven't had a french class since grade 4), but I'm at least there with them.
Being away from school so much over the last 4 years, also presents it's own challenges. For example, at my school we start learning to play instruments in grade 4. My instrument of choice was the french horn, which my mom went out and bought for me. Now, let's pause and consider my instrument of choice in terms of my health. I am constantly dizzy and nauseated. The french horn, for those who have never played, requires a great deal of air control and extremely strong lip muscles. When I start to play, within minutes my dizziness has me on the floor. Holding a note for an extended length of time....I won't say impossible but certainly difficult. So, because my music teacher has to start me off from scratch, she has given me the option of changing my instrument. Thankfully my mom owns most of the instruments already, so I have the flute, clarinet, alto sax, or piano to choose from. Now to decide what the least physically demanding instrument would be!
Anyway, the big thing is I made it through the first week. It's such a huge accomplishment for me!
It was almost like being a rock star. I walked around the corner of the school to gasps, and hearing my name over and over again. My old school friends hadn't forgotten me, which was clear since I was surrounded by people coming up to welcome me back. It's a weird feeling to try to pick up where you left off when it's been 2 years, something worthy of an episode of the Twilight Zone.Physically, I'm exhausted. I'm in pain. And I'm constantly overheated since the class is not air-conditioned and it's hotter than India here right now. Which also means I'm constantly dehydrated. It's similar to the song about bones, except:
"The overheating is connected to the... dehydration.
The dehydration is connected to the... dizziness.
The dizziness is connected to the vomiting.
And around the loop we go".
Yet I'm still lucky. I, at least, got to experience my first day alongside everyone else. There are some kids who don't get to have this experience because they're in the hospital, or at home too sick to go, or in some type of treatment room. For once I was able to do something so incredibly "normal", that it's often taken for granted by so many of my friends. Two years away from everything has taught me to be a bit more thankful for the "normal" experiences that I do have. I may not be able to run around the school-yard with my friends, join any sports teams, or even participate in some classes with my friends (I am not allowed to do gym, and I haven't had a french class since grade 4), but I'm at least there with them.
Being away from school so much over the last 4 years, also presents it's own challenges. For example, at my school we start learning to play instruments in grade 4. My instrument of choice was the french horn, which my mom went out and bought for me. Now, let's pause and consider my instrument of choice in terms of my health. I am constantly dizzy and nauseated. The french horn, for those who have never played, requires a great deal of air control and extremely strong lip muscles. When I start to play, within minutes my dizziness has me on the floor. Holding a note for an extended length of time....I won't say impossible but certainly difficult. So, because my music teacher has to start me off from scratch, she has given me the option of changing my instrument. Thankfully my mom owns most of the instruments already, so I have the flute, clarinet, alto sax, or piano to choose from. Now to decide what the least physically demanding instrument would be!
Anyway, the big thing is I made it through the first week. It's such a huge accomplishment for me!
Saturday, July 30, 2016
8 Things I Say Instead of "It's Going To Be Alright" as a Parent to a Medically Complex Child
"Don't worry, it's going to be alright".
It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.
I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.
This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".
But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?
My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.
I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.
How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.
I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:
We can get through this.
You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.
It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.
This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".
But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?
My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.
I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.
I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:
We can get through this.You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.
Sunday, July 10, 2016
Four Years Later
Four years. Four years ago, I received a diagnosis that has changed my life. It's taught me a lot about strength, survival, and fighting on even when met with disappointment after disappointment. It's taught me hope, love, friendship, patience. Four years ago, I was diagnosed with severe Crohn's Disease.
Actually, I should correct that. Initially I was diagnosed with severe Ulcerative Colitis. See, Ulcerative Colitis (UC) and Crohn's Disease, are both forms of Inflammatory Bowel Disease (IBD) but can be very difficult to tell apart. Ulcerative Colitis, effects just the colon (large intestine), whereas Crohn's can be anywhere in the digestive tract. In my case, the inflammation that they saw when they did my colonoscopy was limited to my colon, and since I didn't have any non-intestinal symptoms of Crohn's, or granulomas present, they believed that I had Ulcerative Colitis. Unfortunately, 4 years hasn't changed the fact that it's still very difficult to tell the two diseases apart, and many are still misdiagnosed.
In 4 years, I've had so many treatments and procedures that it's overwhelming. I've been to the OR 15 times. At one point I was taking handfuls of 18-19 pills at a time. I had a colectomy (removal of the colon), donated my colon to research and gained a fancy bag out of the deal for collecting poop. Each medication brought new side effects, some of them tolerable, some of them a nightmare, but treatment after treatment failed to control my Crohn's and I kept getting sicker and sicker. Four years, and it's still often trial & error to find the right combo that works for the patient.
After 4 long years, my Crohn's is finally starting to get under control. That doesn't mean that I'm "better" though. I will live with this for the rest of my life, or until there is a cure. Remission is an awesome thing to achieve, but it can so easily take a turn the opposite way. I'm focusing on the fact that at least my Crohn's is now controlled so that we can look at what else is going on with my health (because the answer to that is A LOT). But that's a whole other post...
The main thing I want to share with others is HOPE. After my colectomy, things were looking so bad inside that at one point, the doctors were thinking I might have to have a major part of my small intestine removed. The doctors were stunned at just how bad it was. After the Remicade dramatically failed, leaving me with bleeding psoriasis all over my entire body, I did worry that we'd never find a treatment that worked. I worried about my future and what it would be like. Would I still be able to achieve my dreams of being a scientist (physics, chemistry) if I couldn't regularly get to school because of this? Would I always have to spend the majority of my time with doctors and nurses? The Stelara injections that the doctor started me on were, and still are, quite new to treating IBD, and not always effective. But taking a chance to see if it helped without major side effects was worth the risk compared to doing nothing. A year later and I'm no longer at risk (at the moment) for losing part of my small intestine! In fact, things look almost normal inside! There is HOPE. Sometimes it's the things that you're least confident in doing that will give you the results that you want. Keep trying. Failure is not failure so long as you get up and try a different approach. Keep moving forward. Change is scary, but if you don't make changes, things likely stay similar to the situation you're in now. Keep your head up, it does take time to find the right combo of treatments but when you do, it's a major accomplishment. You CAN do this.
Actually, I should correct that. Initially I was diagnosed with severe Ulcerative Colitis. See, Ulcerative Colitis (UC) and Crohn's Disease, are both forms of Inflammatory Bowel Disease (IBD) but can be very difficult to tell apart. Ulcerative Colitis, effects just the colon (large intestine), whereas Crohn's can be anywhere in the digestive tract. In my case, the inflammation that they saw when they did my colonoscopy was limited to my colon, and since I didn't have any non-intestinal symptoms of Crohn's, or granulomas present, they believed that I had Ulcerative Colitis. Unfortunately, 4 years hasn't changed the fact that it's still very difficult to tell the two diseases apart, and many are still misdiagnosed.
In 4 years, I've had so many treatments and procedures that it's overwhelming. I've been to the OR 15 times. At one point I was taking handfuls of 18-19 pills at a time. I had a colectomy (removal of the colon), donated my colon to research and gained a fancy bag out of the deal for collecting poop. Each medication brought new side effects, some of them tolerable, some of them a nightmare, but treatment after treatment failed to control my Crohn's and I kept getting sicker and sicker. Four years, and it's still often trial & error to find the right combo that works for the patient.
After 4 long years, my Crohn's is finally starting to get under control. That doesn't mean that I'm "better" though. I will live with this for the rest of my life, or until there is a cure. Remission is an awesome thing to achieve, but it can so easily take a turn the opposite way. I'm focusing on the fact that at least my Crohn's is now controlled so that we can look at what else is going on with my health (because the answer to that is A LOT). But that's a whole other post...
The main thing I want to share with others is HOPE. After my colectomy, things were looking so bad inside that at one point, the doctors were thinking I might have to have a major part of my small intestine removed. The doctors were stunned at just how bad it was. After the Remicade dramatically failed, leaving me with bleeding psoriasis all over my entire body, I did worry that we'd never find a treatment that worked. I worried about my future and what it would be like. Would I still be able to achieve my dreams of being a scientist (physics, chemistry) if I couldn't regularly get to school because of this? Would I always have to spend the majority of my time with doctors and nurses? The Stelara injections that the doctor started me on were, and still are, quite new to treating IBD, and not always effective. But taking a chance to see if it helped without major side effects was worth the risk compared to doing nothing. A year later and I'm no longer at risk (at the moment) for losing part of my small intestine! In fact, things look almost normal inside! There is HOPE. Sometimes it's the things that you're least confident in doing that will give you the results that you want. Keep trying. Failure is not failure so long as you get up and try a different approach. Keep moving forward. Change is scary, but if you don't make changes, things likely stay similar to the situation you're in now. Keep your head up, it does take time to find the right combo of treatments but when you do, it's a major accomplishment. You CAN do this.
Thursday, June 23, 2016
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.
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.
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