Today - February 28th - is Rare Disease Day.....a day dedicated to spreading awareness about rare diseases and their effect on individuals' lives. As some of you long-time readers may recall, my sister, Kimberly, was diagnosed a couple of years ago with a progressive, degenerative genetic disease affecting her mobility, balance, coordination and speech.
I wanted to do something special today in recognition of the significance this day holds and in honour of my sister and all of the courageous people out there who live with a debilitating disease day in and day out. Knowing that I couldn't possibly do the subject justice, I invited my sister to share a few thoughts with us on the blog. I'm so honoured that she accepted and would like to introduce her to you now.
Please welcome Kimberly and enjoy her story below (after the photograph). xo, A.
Go ahead and stand out! Being different is beautiful.
WORDS FROM KIMBERLY'S HEART.....
Amy thinks I can write a blog. I don't mean to be self-defeating, but yeah right! Anyway, here's my first attempt. That's a lie, 4th attempt. I have 3 different blogs written for today. I just couldn't decide what "tone" to write in. I didn't want to be super-serious and make everyone cry, but I also didn't want to joke my way through because for people suffering with a rare disease, it's not funny. Yes, making fun of myself might be one way I cope, but I understand that it's not everyone's way. Needless to say, I'll probably insult somebody, so I'll apologize in advance!
Amy thinks I can write a blog. I don't mean to be self-defeating, but yeah right! Anyway, here's my first attempt. That's a lie, 4th attempt. I have 3 different blogs written for today. I just couldn't decide what "tone" to write in. I didn't want to be super-serious and make everyone cry, but I also didn't want to joke my way through because for people suffering with a rare disease, it's not funny. Yes, making fun of myself might be one way I cope, but I understand that it's not everyone's way. Needless to say, I'll probably insult somebody, so I'll apologize in advance!
When I told Amy about the day, she promptly reminded me that February 28th is ironically 2 years since I received a diagnosis of Spinocerebellar Ataxia Type 8 (SCA8). If you feel so inclined, you can read up on what I'm dealing with. I'll summarize it as "my life changed forever". I KNOW this sounds cliche, but in some ways it feels like just yesterday that the neurologist explained my fate, but in other ways, 2 years of my new lifestyle seems FOREVER ago; what "cans" and "cannots" in life are so "common-place" for me now that sometimes I forget that life wasn't always this hard!
I am not writing because I have had a miraculous healing, but hopefully my story, albeit brief, will:
a) provide a bit of hope to people who have recently received a diagnosis
and/or
b) bring awareness to any rare disease (the point of today)
If you have a disease, surround yourself with great friends and supportive family; accept help and open up. These 2 years have been very difficult for me, but I can honestly say that the constant love and support of those around me have made it survivable!
Thank-you also to Amy, who felt I had worthy things to write on this topic. I'm humbled.
[post written by: Kimberly VanDaele | photo credit: Amy Walters]
Kim you're first ever guest-blog rocked! You should sooo begin your own. Amy, love the "visual" illustration of just how delightful "different" can be.
ReplyDeleteI am so proud and hymbled to have such amazing daughters! Love you both.
Thank you Mom. You're so sweet and lovely. I'm so blessed to have you and Kim in my life. xo
DeleteKimberley, you are lucky to have the support of such a lovely sister.
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DeleteThat was perfect, Kimberley. Thanks for sharing your story. I have never heard of SCA8, but I am now going to read a little more about it. You're very fortunate to have so many loving and supportive friends and family around you. Take care!
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DeleteThank you for telling us what you have to live with. You did it with such grace. My hope and best wishes goes out to you and your family with having to live with such a disease. I hope that you do take the help and support when it is offered,as it can be a difficult thing to do. We are fortunate to not have to have your disease to deal with. But I was injured 12 years ago and have chronic pain. I feel so bad for my husband and children for what they have to deal with each and everyday. The look on their faces when it is a "bad day". Sometimes people forget that an illness/disease/injury affects more than the the person that is ill.
ReplyDeleteThank you again for informing us about SCA8. Also I did not know there was a Rare Disease Day.It hopefully informs people about what it happening in our world.
You did a fantastic job at telling us about SCA8. I hope that we get to hear from you again on any topic you want to write about. If I could I would send you a high 5, but I have no idea how to do that. I think you get my idea anyway.Take care.
Thank you for your wonderful feedback Cathy. I'm so grateful that you took the time to visit the blog and leave such an encouraging and thoughtful message.
DeleteThank you for sharing! I will read more on it. I really appreciate reading your reasons for sharing too. my son is on the autism spectrum and I struggle with how much to talk about it. hope and awareness are beautiful things!
ReplyDeleteThat's so beautifully put, Julia. I am sorry to hear about your son. He's very lucky to have such a warm-hearted, sweet Mom, like you!
DeleteThanks to everyone for your thoughts! Cathy- rough days are rough on everyone- wishing you healing! Julia- I was a teacher, so can empathize with you dealing with son with Austism- although it's hard, I hope there are rewards in raising him, as well!
ReplyDeleteLove you, Sister. xo
DeleteThank you for sharing... Amy and Kimberley. The love and support of family and friends can never be trumped, especially when it's so evident as it is between you. I am heading over to learn more about SCA8... xo
ReplyDeleteThank you, Sheila, for your sweet comment.
DeleteThanks for sharing this Kimberley. I hope that you have more and more days where you can throw caution to the wind and "..forget that life is this hard."
ReplyDeleteThank you, Santa.
DeleteThank you so much for sharing this, Kimberly. I admire your strength and you are a lucky girl to have such great family and friends for support :)
ReplyDeletexoxo
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