Wednesday, August 28, 2013

The "Joys" of being a Parkie mom...

Hmm yup I said Joys... and u must be wondering....that i have truly lost all my dopamine cells...but hear me out OK.

Mr. Parkie, the jerk who jerks me around came into my life in the age of 36, prime of my life, just when i was thinking of getting back into the workforce, from which i had taken a sabbatical for a couple of years for the birth of my second son in oldest born in 1999.  I have always been a person who enjoyed working outside the house, cleaning and dusting was not for me, if i did have some spare time would read a book, or learn something new online:) Well I had my plans and life had its and life's plan it was.

The ride from then to now when i am writing this, August 2013, has been a roller coaster ride indeed...biggest of all the searing guilt of getting a chronic condition into my families life ( yup am the first in my family to get it) of becoming a burden.... of not being able to be a good supportive wife and mother.

Parkie has been a part of my life for so long that I have almost forgotten how i was before Parkie...When i look back on my nine years with Parkie, i sometimes wonder how i overcame the dark moments in my life...tears by the bucketful, anxiety by the boatload, fear overwhelming, guilt all encompassing, in an emotional hell hole at the mercy of the condition and the mind altering drugs i am taking me to worlds unknown, so much so, i thought i was losing my marbles...some of my problems directly related and some in directly related to Parkie.......... trying so hard to overcome the black void of depression, almost felt like a physical effort, thoughts of ending my life running rampant...almost a sense of futility, a feeling of being trapped....i think it is god's blessings and sheer willpower that makes me smile and face the world....lets hope i can continue this without falling off... 

I have always encouraged my kids to write about their feelings about Parkinson's and me and every birthday or mother's day, my kids took a printer paper, folded it in half and wrote out personalised messages, that rival any Hallmark card... and I have a collection of those sweet notes from their heart:) They are the reason that makes me get up everyday and face life with a smile:) Now as my little one gets ready to head off to middle school and my oldest getting ready to go to high school I would like to share what they wrote.

This one is written by Ranai, when he was ten, recently turned eleven:)

"Well, the way I describe Parkinsons is a disease which doesn’t express yourself to the fullest, it limits your abilities. This is what you have maa, and I know it is hard to live life. You have us though, and we will help you trough the hard times.

I really don’t like Parkinsons, especially since my maa has it. I remember on our vacation to Duck, maa was feeling bad for most of the trip. I felt so bad that maa didn’t get to enjoy the trip. As I said earlier, Parkinsons doesn’t let you live to the fullest. Maa didn’t live to the fullest on that vacation.

I’m so glad that maa doesn’t have advanced Parkinsons, or she would be shaking all the time. Some of the most famous people, such as Michael J. Fox, and Muhammad Ali, have Advanced Parkinsons. They cannot even walk straight. Even the most infamous people, like Adolf Hitler had Parkinsons. Parkinsons is not an uncommon disease, but I don’t know why it had to happen to maa.

I thank god that Parkinsons is not fatal. I would do anything to get maa out of that disease, even if it meant waling a thousand miles. She is the best mom ever, and she acts so nice and caring around me. I especially like our text conversations. Maa, I love you, and I would do anything in the world for you."

And this writtten by Rishab my 13 year old:)

"A special family member to me is my mom. She was diagnosed with Parkinson’s disease in 2004, so her life is much harder than the rest of us. It is as hard as a fish with no water. Her body can never stay in one place, she is always shaking, and sometimes she can’t even walk. However, she lives it to the fullest. She is really funny, and is always optimistic. That is what I admire about her. However, we do have to help her in parts of the day because she is shaking. This is because of the disease. This really limits her, and this is why we don’t really go on vacations that much. Life is hard, but my mom is really special to me because of the way she handles her disease. I also have to say that my dad is very special also, because despite of all the struggles we are facing as a family, he always keeps his head up and never gives up. That is why I admire my mom and dad and think they are special."

So yes, as my dad said, these two are your treasures, your pillars in life..... while i think why did they have to have a mom, like me, who cannot be fully involved in their lives, then again i think, well atleast i m here to celebrate their milestones, there are many who are not so lucky, that is when i realise the joy of being a Parkie mom:)


Jillian Courcy said...

this brought me to tears....I feel for you and have experienced many of the feelings about motherhood with PD as you expressed. I just haven't been able to put it on paper. Thank you for sharing.

Su Kasib said...

Huggs is not easy, is it? my kids are my motivation. u will do great n are a wunnerful mom:))

DeParkiePoet said...

I have written this post in various forms since I was diagnosed in 2004. Beautifully bittersweet. I pray that you two children somehow get their living life to the fullest mom back soon

Su Kasib said...

DeParkiePoet:)) we were diagnosed the same hoping they find a cure soon too kinda getting tired.

Anonymous said...

What a wonderful family you have. Be proud of them.

Su Kasib said...

Thank u so much:)