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.Caregiver of the Month

February 2004

Avalon Bruce M.P.H.

Courage For Caregivers:
An Uncommon Recipe For Lemonade

Sometimes, life hands you so many lemons that the only option left is to open a lemonade stand... or at least perfect your recipe for this drink. A brutalizing relationship with my own mother, widowed in 1949 when I was barely age six, left a bad taste in my mouth for motherhood.... Until I reached my mid-30’s, and the loud ticking of my biological clock gave me second thoughts and first-time regrets that I might never have children of my own. Raped when I was l9, this event supposedly left me incapable of pregnancy.

Then, in my late 30's, after a brief union with a man much my senior, in Las Vegas, NV, we discovered that doctors can be mistaken, and miracles DO happen. Only part of this "miracle" was ending up alone during gestation with questions to address such as: do I rear my only child as a single parent, give the baby up for adoption (with half the rest of the marriages in America ending in divorce) or opt for the abortion her father preferred?

I moved to Albuquerque, NM to do my thinking on this, and opted to keep the child, avoid the potential trauma of divorce court later on for her, and preserve my own integrity and standing against abortion (for me, personally, anyway) and rear her as a single parent. In November, 1982, after being told I was sterile as a brick for l7 years, I gave birth to a beautiful little Botticelli angel -- or so I thought. A few hours after the emergency c-section, the infant was removed to the neonatal ICU, as her very low apgars, hypotonia and inability to suckle aroused great concern in the pediatric staff but despite every test available at the time, no diagnosis was to be had.

Sent home a week later, there was no clue to what her challenge was, or why she was so listless. It was a good ten years later, after much delayed development, years of occupational, speech and physical therapies, that a provisional diagnosis of Prader-Willi Syndrome was made, but not confirmed by high resolution chromosome testing for another six years. This disorder, termed "one of the two worst I've ever seen" by one M.D., has pretty well shaped our lives, now, for 21 years and took us in directions not anticipated.

As the syndrome became more difficult to manage, there were endless temper tantrums, ongoing changes in medications, behavioral problems at school, episodes of running away from home and physical health problems (severe scoliosis and osteoporosis) to be dealt with, along with ever increasing and obvious developmental delays, ongoing and deep depression in the child, and retardation. Still, the I "hung in" and was determined to find something good from the hardship and challenges.

Like the joke about the little boy in a room full of horse droppings, who asked for a shovel, convinced "There must be a pony in here, somewhere", I was inspired to write Courage for Caregivers after years of struggle. When it was completed, there was not only a book of inspiration, humor and caring and sharing, straight from the heart of one who knows what it is to BE a 24/7 Caregiver, but also proof positive of growth in ways never imagined.

Caregivers, "bridge" two worlds -- the "normal" one, because they come across as being normal -- they take care of business. But the other foot is in a world that is demanding, often unreasonable, frustrating, and at times quite insensitive to the Caregiver's needs. Still, life can turn these lemons into a tasty drink.

also went from being a practicing alcoholic, "on the warpath" for a decade and a half, to sobering up before conception of my daughter, and remaining that way, now for almost 22 years. However, as a drunk, I always held good, professional positions in marketing, advertising and public relations. It was quite a jolt, both to my ego and pocketbook to find that, as a sober person but into my early 40's, I was no longer quite as much in demand, i.e. practically unemployable in roles formerly enjoyed.

Still, my role as a mother took first priority, and we've survived without my girl even coming close to being a "latchkey kid", albeit at the very bottom of the food chain in America, income-wise. Even as a practicing alcoholic, I very prudently invested in real estate, and have been able to keep a roof over our heads, rent- and mortgage-free for over two decades. Today, that roof is an old, 1920's-built ranchhouse, 30 miles to the nearest "town" (of 8,000) on almost four acres on the northern edge of the Chihuahuan desert. It is my "dream" to build dome-homes here, of papercrete, for an intentional community comprised of retired women, artists/writers, and one or two more disabled, female adults to form an "extended family" together.

Having a disabled and challenging child can teach many important lessons, if the student is willing. First and foremost, family, friends, and good health are of much more value than "things", prestige or any "job". This is NOT to say I wouldn't like for our income -- just my daughter's social security disability and food stamps, to triple, but our needs are met, along with a few "wants" and I've learned the difference. She has taught me more patience than I ever dreamed possible, unconditional love, and the value of keeping things in perspective. She can tell me in one breath how much she loves me, and in the next hour, sneak or steal any food she can get to -- if I inadvertently leave the fridge unlocked for even three minutes -- so I've had to learn to differentiate between her "instinct" vs. her "intellect" when I am relating to her. And, like her grandmother, she has an overlay of Obsessive Compulsive Disorder, common in guys with Prader-Willi Syndrome.

There was a time when I felt as though I'd been caught in a "time-warp" between two crazy generations -- my mother's depression and O.C.D. and that of my child. But, thanks to both long-term sobriety, being a single parent myself, and moreover, having a disabled child, I came to have great understanding of and compassion for my own mother and what precipitated her harsh treatment of me -- and I have come to appreciate, respect and hold dear my own child who "will never grow up" or be "normal". Today, she is relatively healthy, since her weight has been well-managed, and happy, albeit it lonely at times, but, thanks to good meds, finally, not nearly the loose cannon or as depressed as she had been in times past.

As I concluded in "Courage for Caregivers", perhaps we do live in a time when it is more important to grow in wisdom -- and in the gifts of the Spirit than pursue the gifts of the world. This is made easier when one comes to look at their role of Caregiver as being a gift and a blessing, rather than a curse and a duty. This is not an easy thing to do, and I certainly can't say I've always done it, or even done it well, at times. But I DO know that such growth is possible, for it has been my great gift, in small but evident ways. I would not be the woman I am, today, had my path been different, and for this I give thanks.

*NOTE: Prader-Willi Syndrome most often occurs due to a deletion of some of the father's chromosome material on the l5th chromosome and the "feedback loop" between the belly and the brain is broken so the person with PWS always feels ravenously hungry and will eat themselves, literally to death, if food is not managed, ie locked up.

Avalon Bruce M.P.H.
Email: Avalon

To view more or order Avalon's book, "Courage for Caregivers" please go to: Courage For Caregivers. You may also view her disability blog at: Disability where there are frequent if not daily updates on news and views of note for the disability community. Her more radical blog on disability can be found at: Radical.

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