Russell's Wish....We are Home!

Wow...what a week!

We got home at about 1:00 in the morning last night (or early this morning) after a truly amazing week.  So many experiences and so many memories.  Something about seeing your kids with huge grins on their faces for a whole week makes it all worth while.

I have enough notes and pictures that can keep my busy blogging for many weeks.  I was intending to write some blog posts and journal our week but to be very honest the whole experience was so overwhelming that I wanted to take some time and reflect on our experience.  It was a fabulous time but also a realization about how our lives have changed in 8 years.  Normal families go on vacations.  Normal families go to Disney.  It was a huge emotional barrier to do something "normal" and we have many people to be thankful for giving us the push we needed.

A huge thank you to Children's Wish of Manitoba for organizing this whole trip from Winnipeg.  Also, the staff and army of volunteers at Give Kids the World Village who exceeded everything we could have ever imagined.  I mentioned the volunteers at Kids Village.  This place does not function with an amazing group of volunteers.  There are numerous volunteers who are from the Orlando area but there are also many volunteers, who come from all over, to volunteer at Kids Village.  We were fortunate enough to be at the Village with several groups including a contingent from St Johns University and Oakland University.  In addition, there was a group from Forest Hills Presbyterian Church from Forest Hills, Michigan.  All of these folks and the many others make staying at Kids Village so unique and extra special.  These staff and volunteers truly exemplify the quote which you will see all over Kids Village.

Although our trip is now over we have so many great memories.  Some of which I'll share over the next few days.  From start to finish this was an amazing trip.  Things couldn't have gone better.

#RussellsWish - Children's Wish

2 more sleeps until we are off on Russell's Wish Trip!

This was the subject first thing this morning when Russell got up.  In fact for the past week...sleep has not been one of his highest priorities.  Wednesday morning he got us up at 5:00AM because "he couldn't sleep."  If you think Russell is excited; Nicole is just as excited times 10.

This is a very small price to pay to see the excitement on our little guy's face.

When we were first introduced to the idea that Russell could be granted a wish by Children's Wish, Russell was still very little.  Too little to really understand what was going on.  Our other complication was Susan's health.  We've had setback after setback that put Russell's "wish" on the back burner.  Partly out of necessity and partly out of design.  Because Russell was so little, at the time, we wanted to delay as long as we could because we wanted him to be able to remember his wish and to fully participate and understand what was going on.  Very tough for an infant/toddler to do.  So we dragged our feet filling out the paperwork and getting all our documentation in order.  We really only got serious about this a year ago.  I hope the folks at Children's Wish weren't getting impatient with us as we weren't exactly springing into action.  Sorry about that.

It's been an emotional journey getting to this place.  We've had a lot to overcome physically and mentally.  Getting ready for this trip was something that we had to make a priority.  We had to put aside all of our excuses and just make this happen.  In other words it's time to "get a life."

Honestly, we could make a very good argument for not going.  Susan's health at this point is precarious, and in many ways she probably has no business going...BUT WE"RE GOING!  There have been some very strange phone calls to Susan's Cardiac clinic verifying that Susan is OK to fly and that they are OK with us doing this trip.  So we are taking reasonable precautions and will have to be careful.

We're going to relax and have fun!  This is about our kids having a once in a lifetime experience.  For many years they have been short changed because of our circumstances and that is not happening next week.

For the better part of 8 years we have tried to get to some semblance of "normal."  In some instances with disastrous results.  Does that make me nervous...you bet.  Is that going to stop us ... No Way.

Stay tuned for many fun Twitter, Instagram, and Facebook posts from Florida.  Hope to have time for a blog post...but not making any promises.

For any one interested in where we are staying. Here is a link to Give Kids the World.

https://www.gktw.org/

This should be fun!

Missing the Point on Hospital Parking

I've been involved in patient/caregiver advocacy for about 7 years now.  I get to hear a lot of patient stories and patient experiences.  As a hospital board member I hear a lot about what patients complain about in health care. I've noticed something interesting.

Complaints about things like cost of parking and the quality of food are very common.  Are these real issues?  Most definitely.  These are real issues but are they the most pressing issues in health care.  Not by a long shot.

Are complaints about non-medical issues like parking and food quality a function of growing frustration with health care?

This seems like a fairly innocuous observation but it highlights a bigger problem.  Health care is extremely intimidating for most non-medical people.  If you have a concern about a medical issue, it can be a very difficult process.  You are dealing with a significant power imbalance as it is you against a very technical bureaucracy.  When a subject like the high cost of parking comes up patients and caregivers feel a lot more comfortable complaining about that issue than discussing hospital protocols or treatment strategies.

Many people are frustrated with the state of health care.  Health care is often cited as one of the most important issues facing Canadians.  Although I pay an exorbitant amount on hospital parking, it is not in my top ten of health care concerns.  Wait times have become common place and almost accepted in some jurisdictions.  Lack of equipment, poor communication, and shortages of Doctors and Nurses are far more pressing issues than parking.

Parking is one of those issues that is usually the "straw that breaks the camel's back."  Imagine yourself being called for a follow up appointment following a biopsy.  You are waiting for a result from a test, and deep down you know the test result may not be good news.  Your mind is jumping to all kinds of conclusions and you are on an emotional roller coaster.  All before you even arrive at the appointment.  When you make your way to the appointment you attempt to find a parking spot.  You drive in circles and hunt and hunt.  You can't find one.  Your emotional state has now jumped off the chart.  In desperation you find a meter to park at.  You throw whatever change you have at the meter and hurry to your dreaded appointment, hoping to be back before the meter expires.  You head off to your appointment where you hear the dreaded news.  You have cancer.  The rest of the appointment is a blur as very caring and competent staff explain next steps.  You hear the words but only a few register.  Many of the words you don't even understand.  All you recognize are words like "surgery" and "radiation".  You are dazed.  Because of the diagnosis and the conversations that happen because of the diagnosis.  You end up staying much longer than you had expected.  When you return to your car, dazed from the medical bombardment you have just endured, there it is.  The parking ticket.  It is at this point, alone and confused, with a clenched parking ticket in your fist where all the emotion comes together.  This is the breaking point.  Although the parking ticket is what may set you off...it is everything that lead up to that point that is the "real" issue.

Although the scenario I described above is hypothetical, I've had very similar experiences to this.

The one thing I have had to remind myself over and over is to prioritize.  I need to concentrate on the people I care for and how I support them.  I need to focus on issues that effect their health.  Parking fees are an irritant but they are not what I need to be focused on.  It's not that important.  Ironically, when I discuss issues in health care, the subject of parking usually comes up.  It's an issue people gravitate to again and again.  It's just something that resonates and that anyone can relate too.  We are missing the bigger health care picture.

Together We're Better

Many years ago when I started out in business school I was introduced to the concept of "synergy."  At that time business schools were starting to emphasize the value of effective teams.  We did many projects, case studies, and presentations as part of a team.  It seemed like a logical concept and with minimal life experience it was just something you readily accepted.  I was just there to learn, get course credit, and move on with the intent of applying this somehow in the workplace.  Did I really believe that the "whole was greater than the sum of its parts"?  I am not sure but the concept made sense and it wouldn't be until years later when I really began to understand the concept in an applied form.

Patient and family centred care has embraced the catch-phrase "together we're better."  This is just an easier and a little catchier way of conveying the concept of synergy.  How a group of people working together can achieve much more than if they were to embark on a task by themselves.  For patient families this is especially true, due to the fact that families are outsiders in the health care system.  Access to health care is one of the biggest barriers patients face.  Many of the things I have been able to provide feedback on or where I have been a part of changes has only been done by our medical team accepting us as equal partners.  In the end we have learned from each other and enriched each other.

The past few weeks have been rather rough on a few families we know.  Susan and I attended a funeral a couple weeks back of a young man who passed away recently due to cancer.  Like many who have followed my blog and our care page.  I followed their experience through their blog.  Reading someone else's experience gives you such a feeling of helplessness.

This family was very much on my mind as I spoke to nursing students at Red River College this week.  I was once again given the opportunity to share our story about Russell's transplant and Susan's heart condition.  The whole time I was thinking how through all that we had been through that the 4 of us are still intact.  We have not lost a member of our team.  We're a little battered and bruised, and we have many health challenges ahead but for today we are together.

When you hang out with some of the sickest kids in Western Canada you are taking a significant emotional risk.  Not all of the stories have happy outcomes.  These families have taught us so many lessons.  We are much different people than we were 8 years ago.  It has made the bond between the four of us much stronger.  No matter what the future holds we will go through it together because we know that we're better when we're together.