Light A Lamp

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.


Exquisite writing by another taking the health advocate’s challenge!

considering the lilies

Day Three of my Health Activist Writers Monthly Challenge, and I’m thrilled to be taking part in it with my blogging buddies Marie Ennis O’Connor and Jan Hasak, two compelling writers who are truly inspired and inspiring in all they do.

Day 3: If you had a superpower, what would it be and how would you use it?

I remember the first time I heard about communing with the dead.  I was about 9 years old, and some children at school were talking about how they had received messages from “the other side” via a ouija board. I was both fascinated and frightened by the prospect of them sitting around it in the dark, their fingertips on a glass, nervously waiting for ghosts to spell out the answers to their questions. Superstitious and gullible, I may well have believed that indeed it was the spirits moving the glass…

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Pull Over & Pay Taxes

A couple of days ago, I heard the waaah-waaah-waaah   of an Emergency vehicle. I pulled over. I then watched as other cars passed me, ignoring the Emergency, ignoring the people who were trying to get a victim of an accident or heart attack or whatever, to the hospital in time to save her.  I thought about the EMT that I know who woke me up to the facts of an EMT’s life, especially to the incredibly low pay they receive for their heroics (at least locally).

This is the transcript of a commentary that I heard yesterday on Marketplace.  It’s called ‘I Love Taxes’.   I feel that it should be read and heard by as many people as possible.

Melissa Chadburn: I love taxes. When I pay my taxes I am telling my community I value you.

Kai Ryssdal: Commentator Melissa Chadburn.

Chadburn: I’m talking about the guy who works for Department of Transportation who helped me get to and from school and thousands of job interviews.

I’m talking about my teachers: Ms. Smith who was my high school English teacher and saw something in me. Ms. Marshall, the junior high journalism instructor who saw I was abused and got me into foster care — a long, achy road, but one that perhaps saved my life.

The nurses who tended to me when I was exposed to tuberculosis as a young child. The military that helped so many members of my family escape poverty and discover a nation they believed in so much they’d risk their lives for it.

The firefighters who do the unthinkable, who run into burning buildings for perfect strangers. Firefighters who often had to come out to emergency cold weather shelters, where I worked, in the middle of the night to tend to a homeless person who was scared they were losing their mind. Sometimes all they needed was some attention. I’ll never forget one Christmas working in the shelter. A firefighter bent down in front of a homeless woman smiling and placed a band-aid on her unwounded eblow just to give her a secret joy.

If we are saying “I value you” when we pay our taxes, what are the people and corporations who don’t pay all their taxes saying? Are they saying the opposite? Are they saying that all those people who do so much for us every day don’t matter?

Melissa Chadburn is a writer who lives in Los Angeles. She is the co-author of “Uncommon Service: How to Win by Putting Customers at the Core of Your Business.”

Beginnings and Endings

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my family.  Today I make lemonade by looking at this quote.

My dear uncle died yesterday after almost two years of the debilitation that Alzheimer’s Disease can bring.   He was a wonderful, intelligent and a very funny man.  He was also an over 25 year survivor of a cancer that had metastasized to his pelvic bone and lymph nodes.

My dad, a urologist, found the cancer and enlisted an expert in the Chicago area for his care.  But I know it was my uncle’s indomitable life force which made him the longest survivor of the clinical trial that saved him.  I think he was a little angry at his sister, my mother, for dying of breast cancer, for giving up.

In the end, when he realized that he was losing his mental faculties, he created notebooks to guide my cousin and aunt through the process of losing him…he had all the paperwork they needed in one place…long term care insurance, bill payment, his wishes for end of life care…laid out in these notebooks.  He gave them a great gift and made lemonade from lemons.

He and my mother grew up with a lemon tree in their backyard in Puerto Rico.  When I saw that tree as a child, it was ancient, filled with fruit and the sweet song of the Reina Mora.  Its fruit made the best lemonade I have ever had or ever will have.

So today, I savor the memory of that lemonade as I remember a very special person.  And I wonder at the new beginnings  that this ending may bring…