“At eight yrs old I was diagnosed with what had just killed my mum.”
When I was eight years old my mother passed away unexpectedly. She never even knew she had a disease. She was 33 years old. We found out later that she had Marfan Syndrome. Of her three children, I was the only one who tested positive.
Marfan Syndrome can affect each individual differently. Heart, lungs, eyes and spine are the most common things affected. I was tall and quite skinny with a curved spine, glasses and chronic asthma. I was an easy target for bullies.
My self-esteem was beaten down every day by school peers. There were many times that I didn’t want to live anymore. Not only did I have to deal with the death of my mother and the diagnosis of what she had (and that I would die young as she did) but I also had to endure torture every day from the kids who should have been my friends.
Through a miscommunication, I thought my mum had hated me. It turns out when she looked at me she saw herself and she didn’t like herself much. She didn’t want me to grow up the same. Can you imagine a 10 year old thinking her mother didn’t love her?
Slowly I learned who I was and in turn, I was able to show others who I could be. It was an uphill battle. Not only was I fighting to be seen as myself and prove my abilities but I was also learning how my disease was affecting me and what to prepare for in the future. I always knew that I would have open heart surgery one day. I just didn’t know when. What I did know is that every decision I made impacted when that surgery would be.
As of now, I have had multiple surgeries and 17 scars to show for it. Some days life isn’t easy. I suffer chronic pain in my back from a fused spine. It can be hard to get out of bed. I remember the bad days but I live for the good days. It’s a fine balance of knowing your limits and never giving up on them.
Now when people comment on how skinny I am, I educate them on my disease and how their comments can be detrimental. I won’t put up with that kind of thing. Don’t judge a book by its cover. Some of the best stories have simple plain covers (and the most loved ones are worn and weathered).
I learned to find a silver lining in everything and when things get hard I remember that my mum wanted to live and I will keep strong and live for her. I also made the choice that I needed to know who I am and I needed to continue living. When I’m having a bad day I remember that I worked hard to be where I am and that there are others who are in a worse place than me.
There’re so many advances in the world today. We do not have to suffer like our predecessors. Stay strong. Be informed. Search for answers.
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