“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
― Cassandra Clare

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My sweet Mother, taken from us too soon!

My dear Mom, was my warrior mentor! Born with the genetic markers of Polycystic Kidney Disease, passed to her from her Father. Which is how this disease works, it can only be passed, from parent to child. It lies dormant in the body, until your mid 20’s, when the cysts can then be seen by ultrasound. At this point you know that you have PKD, but there isn’t anything that can be done about it. Other than, do your best to be very careful of what you put in your body, and the effect it could have on your kidneys. The kidneys are the clean up crew for what passes through your body. By making sure what you are eating, drinking, being careful of medications, including OTC, are kidney friendly items. The kidneys get a fighting chance of having more time. There is no cure.

My grandfather passed away at the age of fifty-four from this disease. There were no dialysis machines, no transplant options then. My Mom was ten when he passed, so she remembered quite a bit of what her Father went through. The ugly and ignorant things, said to her Father because he couldn’t work, so her Mother did. He was called fat and lazy, by people who had no idea there was a reason for his weight. Upon his death, his kidneys weighted ten pounds each, from the cysts, that sent him into kidney failure, and caused his death. PKD can cause cysts in other organs in your body, including your brain. 

Mom knew what she was going to face, but she lived life to its fullest, had five children, Lord help her! Made our house a home, no matter where we lived. I can still remember coming home from school everyday, and just feeling safe and content. Sometimes Mom would be in the kitchen and we would have tea and cinnamon toast. We didn’t have a fancy home, far from it, but where Mom was it was a happy place for me.

Mom loved becoming a Grandma, when Nathan was born she was over the moon happy! Then Brandon came along, soon my sister had a son, then my brother added two more grandsons to mix. Mom couldn’t have been more happy. Her second love was cats, which she had loved since she was a girl, you might have noticed the small cat pin on her blouse in her picture! I’ve also seen pictures, of Mom, as a young girl, her cat with a baby bonnet, inside a baby carriage! Mom often fostered kittens for our local Animal Shelter. Her favorite flower was Lilac, we had a Lilac bush in our yard, one day when mowing the yard, Dad mowed it down! Oh my, I thought she might do him bodily harm!! He was in the dog house for a long time after that.

cats

As Mom reached her late forty’s, early fifty’s her kidney functions started to decline, and her Nephrologist told her it was time to start dialysis. First she had to have a shunt placed in her arm, to accommodate the dialysis needles. This was done by a Vascular Surgeon, and then she was off to dialysis three times a week. This is a lengthy process, as you are basically having all of your blood removed, cycled through the dialysis machine, where all the impurities are removed, and then returned back into your body. It was here that Mom ran into her first glitch. Her shunt kept clotting off, making it impossible to use, so she had to be scheduled for surgery, with the Vascular team, to clean out the shunt so she could continue with dialysis. Problem was the shunt kept clotting off, after this happened for about the fifth time. They decided to run some special blood tests, and found that Mom had heparin antibodies. The heparin they were using in the dialysis clinic, to keep her shunt from clotting, was actually having the opposite effect. Through all of this, Mom kept soldiering on, she kept fighting and she didn’t lose hope that sometime very soon, there would be a kidney for her. And all of this pain, hardship, sickness, feeling so weak she didn’t hardly have the strength, to walk from one room to the next, all of this would be worth it, when she got a kidney.

They were getting ready to set Mom up for peritoneal dialysis, which you do at home and is fairly complicated. When she got the CALL, they had a kidney for her! Finally, everything she had hoped for was coming true. A new kidney, no more dialysis, the kind of freedom she had been dreaming of, fighting for! Being a warrior had led her down the right path.


It will be eleven years, this June that Mom passed. She continued to live life to its fullest, while she could. She was a warrior, fighting each new challenge that was thrown in her path. My Mom was a kind and gentle soul, she would never knowingly hurt another person. During the last four to five years of her life, she faced many medical challenges, that were for lack of better word, pure hell. For many of them she was unconscious, due to the nature of the medical condition. Or she would be scared and confused, these were the hardest, the time when roles are reversed. But somehow, someway, she battled her way back, until her body simply gave out. I believe she was a warrior right up until she took her last breath, we don’t know what she was thinking or feeling. But Mom was never a quitter, her warriors heart beat stronger within her, until it was time for her to go. I hope that I have made my Mom proud, and that I’ll be at least half the warrior she was.


“There are three qualities that every individual must have to achieve success: a Monk’s patience, a Warrior’s courage, a Child’s imagination.”
Sharad Vivek Sagar

Live with hope,
Roni

 

 

Addendum: 1/26/2018

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