Tuesday, March 1, 2016

Rare Disease Day!

So yesterday was rare disease day which I just love because I love thinking of myself and unique and different and since there are only 150 cases of Factor 5 reported world wide I think that qualifies me as being unique!
I was reading an article yesterday about how its important to talk about the IMPACT these conditions have on people.
Hemophilia impacts every day of my life but as I get older I find myself reflecting on how it impacts the other people in my life.
Today when I called to thank my Nanny for a birthday card I realized how much my silly disease has impacted her.
I don't remember exactly what we were talking about but somehow we got on the topic of me worrying her with my illness.
She told me about the time I was in grade 7 and I called Nanny because I was in pain. She came over and I was too weak to walk so she called the ambulance to come and get me. My hemoglobin was around 50 and the people at the hospital were preparing to air lift me into St. John's. 
I was in and out of consciousness but I remember my nanny being right by my side. She was stood up smiling in the room with me in her royal blue coat. She admitted to me today that she couldn't let on how scared she was because she did't want to scare me.
All I can remember is her being there, the smell of her perfume, the comfort of her presence and I remember her taking my hand and saying, look Ryanne, you have a long long lifelong just like grandfather had and you are going to live a long life, don't worry.
I an't tell you how much that helped me when I was a kid.
When I would get into sticky situations I would look down and my hand and trace my lifeline and think of my darling Nanny.
Lately, my Nanny has had some health problems of her own and I worry about her so much. I wish I could comfort her the way she comforted me so many times over the years. Nanny if you are ever sick remember that you are amazing angel ad you deserve to me happy and healthy and I'm sure I inherited my long life line from you!