A little known fact about me – I hate politics…
ANYTHING to do with politics, government going on around me and I tune out.
Should I care – probably.. but it goes back to my high school days (a LONG time ago) ..
short version of events and how I remember it going down. In high school I wanted to either be a doctor or a lawyer. There were prerequisite classes that needed to be done to set me up for entry into university. My school counsellor was of the opinion that I should go into politics and put me into that class and not what I actually wanted to do. I HATED it. I REALLY wanted out – but was not given that option.. It turned me against school and eventually lead me to dropping out of high school.
Yup – I have a rebellious streak and it has lead me into a lifelong dislike for ANYTHING related to politics or government.
SO – when I was asked by our local JDRF Chapter to write a letter to our local Congressman so that the JDRF Government Chair could take it to Washington DC in March – I have to admit I was totally put out of my comfort zone. My first gut reaction was UGH. I just saw the word Government and I went UGH.
Silly – I know… but it was my natural first gut instinct.
Of course, I sucked it up and wrote the letter…
I would do pretty much anything to help find a cure to Type 1 Diabetes for Eden – although I don’t think you will see me personally in Washington DC anytime soon..
below is my letter.. will it make a difference – I really don’t know..?
but I am certainly willing to give it a try.
I love her THAT much .. 💖
Dear Congressman …..,
Currently, my biggest hope, dream and wish for the future is a cure for Type 1 Diabetes (T1D).
Because our life changed forever almost 5 years ago when my daughter Eden (7) was diagnosed with this incurable, sometimes life threatening, misunderstood, auto immune disease.
Why contact you?
Because you have more power than I do to create change and help fight for funding for research to find that cure – and I need your help. Eden needs your help.
Our story is becoming one that I hear all too often. Another child being diagnosed with T1D and being thrown into the world of fear, heartache and anguish as we are forced to act as one of our child’s internal organs to keep them alive 24hrs a day 7 days a week 365 days a year. One wrong calculation can mean the death of your child – now that is immense pressure!
Type 1 Diabetes is an auto immune disease that causes our children to be insulin dependent for LIFE. Living with T1D is a very difficult balancing act as we juggle the physical and emotional burdens that it imposes. There currently is NO CURE and although insulin treatment allows Eden to live – it is only possible by her being subjected to 8-12 finger pricks a day to test her blood sugar, accounting for every single item of food that she eats and trying to maintain blood sugar levels when everything she does makes a difference. A blood sugar too low is immediately dangerous and too high puts her at risk for long term complications creating a very difficult balancing act.
Eden wears an insulin pump that infuses insulin into her body 24 hours a day and a CGM (continuous glucose monitor) to help manage her T1D – but these require insertion via big needles every 3 and 7 days respectively. They are only tools – medical devices – which help sustain her life. Without insulin – Eden will DIE. What we really need and want is a biological CURE so that Eden and all the other people living with Type 1 Diabetes can live a life without needles, being attached to medical devices or having to consider T1D in every single decision they make in their day.
Eden is now at the age (almost 13) where she is needing and wanting to try to manage her disease on her own. It is also a very delicate age where she is trying to find herself, fit in with her peers and doesn’t want to be different. That alone is hard as a pre-teen, let alone factoring in wearing 2 medical devices attached to your body and having to make medical decisions that keep you alive all day long. Decisions that she will never get a break from – EVER.
As her mother, it is incredibly exhausting, frustrating and sometimes scary as I try to teach her about managing a complicated disease where one wrong move can cause death, but also giving her the freedom to live her life without fear and hovering. As Eden grows older the burdens will entirely be on her shoulders – right now I try to ease the burden as much as possible. I wake multiple times during the night to test her blood sugar, I keep an extensive medical plan in place at her school to ensure she is safe, I advocate for her wellbeing and education with teachers and coaches, the costs drain our bank account, I spend hours on the phone with insurance companies, keep track of blood draws, doctors appointments, her prescriptions and of insertion days (for medical devices) and I also inflict the pain on my daughter to keep her alive.
The general population does not understand what living a life with Type 1 Diabetes is truly like. It is a daily roller coaster ride of emotions that we cannot escape. Eden does not let T1D hold her back and we will not allow it to determine what she can and cannot do with her life. We attack this disease as a family and do what needs to be done to allow her to live as good a life as possible. Eden is an amazing daughter, friend, sister, student, athlete and T1D advocate and my biggest hero.
The T1D life is not easy – but for the most part we make it look easy – because right now, we have no other choice than to live with it.
I hope you will join me in my mission, my dream, to help educate the world and find Eden a cure for Type 1 Diabetes. Help me to educate and fight for the funding that is so desperately needed. Not only will a cure make a difference in our lives – but in the lives of future generations that may be diagnosed today, tomorrow or next year.
Thank you in advance for your support.