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Friday, July 24, 2009

Inner Jewel

The human soul longs for warm caresses, deep understanding and tender treading. It should be treated as if a priceless jewel.. to be treasured from whence it came, the weathering and pressurizing it withstood to become so strong and vibrant, never forgetting the delicacy of its nature.

Thursday, July 2, 2009

MishMash

*WARNING* ~ This entry is NOT well-thought-out. It is an unorganized mix of random thoughts, frustrations and exhausted spewing. Turn away now if you hope to find inspiration and sunshiny positivity. You've been warned.

If you're reading me here, you probably came by way of Twitter . If that is, in fact, the case, you probably heard about my 13 year old son, and his newly diagnosed kidney disease.




He insisted I take a picture of his IV - it was his first ever, but, unfortunately, not his last.

Locally, the ordeal included one 5-day hospital stay, multiple mini-emergencies and a second trip to the Emergency Room. Finally, after a week and a half, a proper referral to Children's Hospital of Philadelphia was made. <~~ BEST HOSPITAL ON THE PLANET!

Twice, we had been told we would be transferred by ambulance to CHOP because, to my disbelief, there were no pediatric nephrologists on staff at our local hospital, and my son's condition was not improving. In fact, he was released, not transferred, after 5 days with little improvement, only to go back a day later, in worse shape than when he was first admitted.

I don't live in a rural area. I live 20-30 minutes away from Center City Philadelphia. The nearest associated (i.e., chain hospital - same name/different location) hospital with a pediatric nephrologist had no available bed. We were offered a "regular" nephrologist instead. Since we had gone from zero to sixty in terms of intensity of the situation, an adult nephrologist was better than NO nephrologist, so we relented.

The story just gets longer and more disturbing from there - miscommunication, LACK of physician follow-up, inefficient Pediatric ER doctors and, worse yet, refusal to honor my RIGHT as the patient's parent to speak to the administrative officer I requested. Luckily, his wife teaches in our local school district, and I got in touch with her through those channels. She relayed the entire story to her husband, the C.O.O., and immediately, everyone with a title wanted to speak with me. By this point, complaining, explaining, blaming was pointless. Apologies, after the fact, when one has a very sick child, are meaningless. My son needed action and intervention from moment ONE. Simply, we should have politely declined and gone directly to CHOP. After everything, I feel we are quite fortunate to have the ability to use the phrase "Live and Learn." Indeed, we have.

The experience of discovering that your child, previously thought to be in perfect health, currently has, and permanently will have, a lifelong kidney disease is shocking. Dealing with the fear, and coping with the sense of helplessness brought about by that fact, is only worsened by corporate/hospital politics and the almighty drive for a consumer rating of "Very Good." Perhaps, if they cared more about the patients and less about their regional ranking, provided the necessary level of patient care and familial support, they would stand a chance. "X" Memorial Hospital will never receive that from ME.

So started my second round of single-motherhood - only 11 days in... That subject requires its own entry, I think...

Saturday, May 30, 2009

My Proudest Moment as a Mother....??

The spawn which belongs to me, Alex, plays "Solar Radiation" & "Nitrous Oxide." (The big guy with the loudest mouth and a perverse love of garden hoses...)

Please click the link to share in my motherly pride.....? http://bit.ly/lHhc6

Wednesday, May 13, 2009

U.N.S.E.T.T.L.E.D.

Unsettled.....
Churning, Anxious Gut.....
Waiting... Why?

Sunday, May 10, 2009

The Miracle That Is My Mom: Chapter 1


This is my hero. She is my mom.

My mom is the most amazing woman I have ever known. Here is her story...

Mom married when she was 18, basically, to leave an abusive father. She dropped out of high school, and began her marriage in a tiny second floor apartment.

Two years later, I came along, her first child. Six months after I was born, she suspected that something wasn't quite right with my legs. The pediatrician told her I was fine, attributing her fears to those of a new mother. Mom wasn't satisfied; her intuition being strong. She decided to take me to an orthopedist. Dr. Robbins was his name.

Dr. Robbins was an incredible man. If memory serves, he had been in some sort of electrical accident and lost one of his arms, to his elbow. In its place was a sort-of robotic arm, including fingers. Dr. Robbins continued practicing, and even conducted surgery! This was in 1963!

He discovered that I had congenital hip dysplasia, i.e., I was born without a hip socket on the left side. The only treatment at the time was to place me in a full lower body cast. The cast encompassed my entire left leg, to the ankle, and my right leg to the knee. He cut out an area between my legs to facilitate relative ease in changing diapers. Still, I needed to be recast every 2 weeks for hygienic reasons. This treatment took 18 months, with no guarantee of success.

For those eighteen months, Mom had to hold me, almost constantly. She was encouraged to place me on the floor so I could develop some sort of crawling. My father handmade a tiny seat with a desk-like tabletop so that I could sit up by myself and play - similar to today's baby walkers, only without wheels. This gave my mom some relief from the discomfort of the added weight of my cast.

At age two, my cast was removed, and I had to learn to walk. Every six months for several years, I returned to Dr. Robbins for xrays and a checkup. Finally, at age 10, it was determined that, against all odds, I had developed a normal hip socket. I have never walked with a limp, and now only suffer arthritis - but hey, I'm getting old! Dr. Robbins said it was a miracle - he had always told my mom to expect a severe limp and multiple lifelong problems.

This is only one tiny chapter in The Miracle That Is My Mom.

Happy Mother's Day, Mom! I love you with all my heart!

Friday, May 8, 2009

On Your Mark.. Get Set.. BLOG!

Mimi rounding the corner, folks...

It's been a long time coming, lots of practice, private and public... almost there!

I wonder if I really have anything of value to say.. what should I talk about?.. What if I'm boring?.. Business or pleasure?.. First person or third person?..

Finish line is in sight! Ladies and gentlemen! She's gonna do it.. look at her go! Almost.. just a bit more.. come on, Mimi!

I see it! I can do this! Yes! Woohoo! I made it! Took longer than I expected, but look! Here I am! Aahhh.. finally! I'm blogging!