True Grit

My precious mother passed away on Wednesday May 11th, 2022. I thought about that day many times. Ever since she first started exhibiting signs of what we would later discover was parkinsons disease. 
Mom was sick for many years. It was heartbreaking to see her faculties fail her one by one. When she first passed away I was grateful that her suffering had finally ended. I thought about how happy she would be up there with Charlie, her brothers and her mom and dad. Over the past few days I started collecting pictures for her wake. Thats when all the memories started flooding back and I found myself crying and wishing for another day with her. Mom was so many things, a great daughter, a loving sister, a caring friend and an amazing Momma. There are so many things I could say about her, she was vibrant, she was fun she was voted most popular in high school and was the captain of the cheer leaders. She was absolutely beautiful and people were drawn to her. To me, the most remarkable thing about my mother was her grit and determination. If she put something in her mind, that was it. It was gonna happen no matter what. 
A story that comes to mind is when I was 7 months old and I was diagnosed with Severe Factor 5 Hemophilia. The doctors told her I wouldn't live a normal life and they said I most likely wouldn't live to be 18 years old. Mom took me home and loved me and treated me like I was the best child she could of ever wished for. She gave me courage to live life. 
Another story that comes to mind is when I was 12 years old I had internal bleeding and I was very sick. I was flown air ambulance to the children's hospital. The doctors approached mom and tried to prepare her for the worst. The funny thing is mom wasn't having it. I was gonna survive and everything was gonna be fine and that's just the way it was going to be. She wouldn't even listen to anything else.
Now I only have 1 week of living without my mom and as hard as it has been I know she would want me to be happy and joyful. She would want me to live life the the fullest just like she did.

Bay St. George Sick Children's Foundation

So, it's the 25th Anniversary of the Bay St. George Sick Children's Foundation. This wonderful organization provides financial support to families who have to travel out of the area for medical care. This foundation was formed 25 years ago after a group of volunteers organized a fundraiser for me. 

The fundraiser was held on March 10th, 1997 at the Stephenville High School gym. They raised $4,100.

I was in the Janeway for almost a full year and my mom stayed at hostel across the street. 

I wasn't able to attend the event as I was still in the hospital but someone recorded it for me. I was overwhelmed then and I am now, 25 years later still blown away with the kindness and generosity of people in this area.

When I finally returned home from the Janeway people dropped off food and gifts and cards and some people told me how much they prayed for me. 

I will never forget the love my family and I received from this beautiful little town. 

If you can please donate to the Bay St. George Sick Children's Foundation. 

Upside Down

So life has changed so  much over the past year. This post will just seem like a list of terrible things and while I know its important to focus on the positives I just have to tell you about the part year just to get it out.

Ok it all started in June 2019 our dog Jade had a collapsed trachea we thought we were going to lose her and after three weeks or worrying about her and $2000 later she started to come around. 

In July 2019 our house was broken into while we were asleep. It was so terrible to wake up in the middle of the night and realize that your house has been broken into and some of your most prized possessions were stolen. 

In August 2019 I had to get a blood transfusion and Iron infusion for on going GI bleeding. 

In September Zane was admitted to the hospital with extreme back pain. 

October I was admitted for a blood transfusion and double balloon endoscopy to try to get to the root of the GI bleeding. 

November I was treated with plasma and Iron to try and bring my levels up from all the blood loss. 

December I was again treated with Plasma and Iron to bring my levels up.

In January my precious Nanny had a stroke and was admitted to the hospital. 

In February my angel Nanny passed away. 

In March my best friend was diagnosed with cancer and my father passed away unexpectedly. March also brought lots of cases of Covid, the world shut down and Zane and I were both laid of from our jobs of 13 and 4 years. 

So fast forward to now Zane and I moved to Newfoundland with our two amazing pups. We are surrounded by family and friends and overall much happier. 

Its been a crazy year and things continue to be unsure as Covid has has come to Newfoundland including a new Variant. I pray everyone is happy and healthy and able to find the silver linings! 

Je T'aime Papa

So, when I was in Kindergarten our project for Fathers Day was to make a T Shirt for our Dads. I drew a picture of my Dad and our teacher put it on a white T shirt to bring home. I don't completely remember making the shirt because I was so young but it meant a lot to my Dad.
Years later when I was in the Childrens Hospital my Dad flew down from Alberta to see me. When he walked through my room door he had on his Je T'aime Papa T Shirt on and we all laughed. It was so nice to have him around during such a difficult time and the fact that he hung on to that T Shirt for all those years was so touching.
My Dad passed away suddenly and unexpectedly on March 27th, 2020.
I now have the t shirt in my house and I will always cherish it. It reminds be of my father and his amazing sense of humor.

Love in the time of Covid-19

So, We are in the middle of a global pandemic. There are no way to fully comprehend the amount of pain and grief the world is experiencing right now.
In Canada, we are lucky to have free health care most people are social distancing and settling into a new normal.
In my own home I have been laid off work and Zane is blessed to be able to work from home.
From a chronic illness standpoint I am concerned that if i get a bleed, I will put more stress on an already maxed out health care system. I am also worried about having to go to the hospital in general and being exposed to potential illness there. I am also concerned because my Hemophilia Clinic is currently closed so I am unable to get in contact with anyone there. At the moment I am happy and healthy so I am praying it'll stay that way until this virus passes.
I will say when it comes to a epidemic, people with chronic illness might be the best equipped. For example, dealing with the loss of a job, over the years due to my illness I have been laid off, fired and made to feel so uncomfortable that I just quit. This is not something that is necessarily new for me. I have been where you are, wondering what my next move will be and thankfully have always found something even if it involved mixing paint or having  funeral for a rabbit (long story).
I've also spent a lot of time worrying about my health so if you are in that boat I am right there with you! There have been times in my life where I was sick, where I was near death and times where I thought maybe I just won't make it this time. Worrying is not helpful and it doesn't get you anywhere but sometimes its just impossible not to.
My only recommendation is to grin and bear it. I hate that advice but sometimes we just have to try and be positive until our situation changes.
In the meantime occupy your time with things you enjoy if you can like reading, watching a movie or cooking.
Since this whole thing has started most people have been scared but also so caring and kind. You will notice in the dark times there are always people reaching out asking if you need help or need to talk.
Lean on the people in your life and don't be afraid to ask for help. I learned a long time ago that it takes great strength to ask for help and most people are happy to do it.
In the meantime, if you need me I will be in my kitchen peeling, chopping and freezing bananas as I accidentally ordered 7 bunches of Bananas instead of just 7.
Take care of yourself, your loved ones and hang in there!

Nanny

I breaks my heart to say but my precious Nanny Priddle passed away yesterday. She was 91 and she passed away peacefully in her sleep with her family by her side.
When I first heard that Nanny was sick it broke my heart. I was scared and worried about her and I was worried about how the world would look for all of her family if she died.
However, when I got the call yesterday to say that she has passed I couldn't help but feel blessed and happy and at peace with everything.
You can't help but feel that was when you look back at how many people loved her and how she got to watch her little family grow and grow over the years.
Nanny was about 55 years old by the time I came around. I was a fat, little demanding baby and from the time I was born Nanny was a huge part of my life.
You see when you have a child with a chronic illness it takes a lot of people around to make it work.
Nanny treated me like any other of her grandkids, she didn't act fearful when she babysat me and she never seemed alarmed when she would come and visit me in the hospital. Even when there was probably great cause to be alarmed.
Nanny took me under he wing and seemed to know how to care for me even though my illness was new to the family and rare and severe.
When I would have a bleed she would wrap my ankles up in hot towels to ease my pain. When I couldn't sleep she would sing to me, these old lullabys that I had never heard of but they were so soothing.
We were blessed to all live in the same town and every Christmas, new years, Easter, thanksgiving and milestone birthdays we would all gather at nans house. Everyone was welcome and her and Poppy would cook these large meals. She loved hosting everyone and didn't mind if you brought a friend or neighbor.
The last time I saw Nanny was when we were all home for her 90th birthday. I thought she would live to be 100.
Nanny had a seemingly endless supply of love and care for people. She has 13 grandchildren and Im sure if you asked each one of them they would say they were her favorite! She had a way of making us all feel special just the way were are!
I am sad that I can't see her anymore and I am sad for all of my family as we all loved her so dearly but ultimately I am thankful that we got to have this fantastic woman in our lives for as long as we did.
As most of my family and friends know, Zane and I are in the process of adopting a child. It is a long drawn out, terrible process but thinking of my Nanny gives me strength to carry on and the confidence to know that even if I am 10% of the wife and mother and grandmother she was I'll be doing alright.

Patient Perspective Presentation

So, I had the honor of speaking to the group of nurses today at the South hospital here in Calgary. 

It was so nice to speak to them and share my crazy medical history.

Anyway I had to do a lot of writing and a lot of talking so I thought today I would just show you some pictures of my life along the way!