Monday, March 4, 2013

Diamonds on the soles of her shoes

from ""

One of my worst fears as a mother is that I will pass on my genetic anomalies to my child. I know that we all have health history to deal with, on my husband's side there is Parkinson's, among other things. On my side, me with both a chronic autoimmune disorder and cancer.  A grandfather with heart disease, a grandmother and two great-grandmothers with cancer. Another grandmother with Dementia/Alzheimer's.

Now my father has been diagnosed with early signs of Alzheimer's. He will be 77 in May, and hopefully with medication, we can push the onset back a bit.  His side is very long-lived...most of his aunts, uncles, mother and grandmother lived well into their 90's, most without losing their faculties.  My great-grandmother and grandmother were not in that group.  I remember visiting my great-grandmother in the nursing home on one of our summer visits to California- the one who taught her 5 year old great-granddaughter how to say "kiss my ass" in Portuguese  and smoked in bed with her granddaughter in the 50's.  I remembered a large-bosom-ed woman with all encompassing hugs.  Instead,  I saw a frail, skinny old woman, hair disheveled who did not remember me anymore.

My sister and I spent many summers in California staying with my grandmother, spending time with the aunts, great-aunts, and cousins on both sides of the family.  We played gin rummy and spoons, and laughed at my grandmother when she had the occasional "fluffy" moment...a joke on her fuzzy thoughts as well as her permed curly white hair.  This is how I remember her, because after the dementia became really bad, I did not go and visit her.  I did not want to remember her THAT way, and after all, she didn't remember me.  The end for her was only painful for those she left behind, she had long been lost to the world of the living.

I am hopeful for my father, that medication will help slow down the progression and he will be able to live the remainder of his life with more awareness and less confusion.  Since he lives near me, I will not be able to live in denial of the disease on this go-round.

Additionally, two weeks ago, I took Connor to the Pediatric Rheumatologist.  He was diagnosed with hyper mobility syndrome - something he picked up from me, and undifferentiated spondylopathy - or something close to auto-immune disorder.  Again, something he picked up from me, since auto-immune disorders are genetically transmitted.  In the juvenile stage, this has manifested in his toes swelling, and inflammation in the back of his ankles, front of his knees and stiffness in his spine.  Right now we are treating it with prescription Naprosyn, and hoping for the best.

My husband will say I am wasting the present on a future that has not yet happened, but it's hard not to when I see 3 generations of illness and wonder how each will be impacted. I know that if my son's illness progresses into full blown chronic adult Ankylosing Spondylitis, it will be treatable with the same meds that I use to control mine, and he will have something I didn't have; someone who knows what it's like to deal with a chronic disease and move through it to take control of your body back from the beast- to prove that you are in charge and not the disease.  I can hopefully help him to do this earlier and avoid the deep depression and hopelessness that I endured until I figured out a way to get through it.

Bellydance Grand Rapids - Oriental Choreography Class
In the meantime, I am immersing myself in conditioning my body - Zumba for some rhythm and cardio, and bellydance for the sheer joy it gives me.  I found I can use the common room at the local Y to practice after the scheduled classes are done.  It has a full length mirror and all the room I need to move.  Plus, I've had a few people approach me to ask where I take classes.  Bellydance is still a little strange in West Michigan, it seems.  I'm working on my dance costumes, and hope to perform in the student performances in June at our studio's 3 day 'show-off' weekend, "Tales from the Sultan's Tent".  I have been asked by a few members if I will consider teaching a beginner class there. I'm not sure if I qualify to do that, but will ask the AD there if it's possible.

Next week, we take the whole family + one friend to Orlando for a week.  I plan to do as little as possible, just enjoy my life, the sun, the water and spending time with my family.  After all, this is all we can do.  Live life in the present moment and realize that what the future holds, we will find a way to cope with it.



  1. I am so sorry about your dad and hope that the medicine will help him, My father in law had vascular dementia and the medicine helped him for many years.

    It is good that your son will have you as a resource and guide for his auto immune disorder. I am sorry that he is having health issues.

    It is hard to not look at the family's health history. I have been doing the same thing and it is very scary. But you are right, there is nothing we can do but deal with it when it comes our way.

    I have always wondered if I would enjoy belly dancing. It is something I will put on my bucket list.

    You sound good despite the setbacks in the health of your loved ones. I hope you have a great vacation!!! Enjoy!

    1. Bellydancing...DO IT! It's such a fabulous affirmation of feminine beauty, sensuality and delicious fun! At least my studio is. I tell people, if you rock back and forth when holding a baby, then you can do bellydance! Find a studio you enjoy and go for it! bring a will have a blast! (too bad you aren't closer, I could give you free passes to my studio!) Hope you are well! ~PBA

  2. tracy.rose@healthline.comMay 8, 2013 at 6:07 AM


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    1. send them my way...I'll be happy to post! PBA


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