Month: March 2016

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Although the world is full of suffering,
it is full also of the overcoming of it.
– Helen Keller

 

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Perfect in purple, Angel in the dialysis unit at Tampa General Hospital

 

Background

My niece, Angel, is my sunshine, my inspiration, and one of the smartest and bravest people I know and she is far wiser than her eleven years.  She was born with Vater Association, a group of congenital deformities, among them only one barely working kidney. She had her first major surgery when she was only hours old. From the time she was very little she was on strict dietary restrictions, underwent hundreds of diagnostic tests, several reconstructive and spinal surgeries, long hospitalizations and required a complicated rewp-1458429169699.jpggimen of medicines several times a day.

She began dialysis at age four and was listed for transplant by six.  Angel was on dialysis for eight years when it became medically necessary to move her to the top of the transplant list.  Not too long ago, she underwent a successful kidney transplant and her entire life has changed in ways not many people could imagine.

How things have changed

Angel used to spend at least four hours in the dialysis unit three times a week.  Everything she did revolved around her dialysis schedule and her medical procedures done once an evening at 6:00 pm.  When I asked her how it feels not to have to go to dialysis any more she said it feels “weird and boring.” She finds it hard to fill all that extra time, except for binge watching Netflix. She said food tastes saltier now and she can drink as much as she wants. Her diet is only restricted by raw foods and grapefruits and she is not allowed to eat at buffet restaurants.  She has had chocolate for the first time and found out that she loves peanut butter cups.

Now that she has recovered from the actual transplant surgery, she is feeling much better. She has more energy than she had before and she is looking forward to traveling outside Tampa to amusement parks, fairs and Disney World. She still visits her friends and the nurses in the dialysis unit when she goes to the hospital for labs and for school. Her biggest goal right now is to go to “real school.” She has been going to home-bound school at Tampa General since Kindergarten!wp-1458429212037.jpg

Angel is an inspiration to me every day. She has a bigger heart than anyone I know. In 2010 Angel was a spokesperson for Tampa General Children’s Medical Center for Christmas.

Angel is also past winner of the American Kidney Fund Art Contest and was the was the guest at the Ribbon Cutting Ceremony at the Kidney Walk in Atlanta, GeorgIa in 2012.

Once she recovered from her surgery, the first public gathering she attended was a walk for Colon Cancer at the Al Lopez Park in Tampa.wp-1458448669906.jpg Truly her heart and her love for life  knows no bounds.

When she is out in public and wearing her mask, she wishes no one would ask her any questions.  However, she knows that is not realistic so she has created some helpful hints which you can read about in Part Two.

Looking towards the future

Angel plans to become a doctor in the future.  For now,though, she enjoys watching Grays Anatomy, Super Natural and How I Met Your Mother.  She is busy learning to sew so she can make quilts for the children in the hospital and learning how to play the guitar.  The future is bright and that is no surprise as she remains my only sunshine.

Addendum

Don’t let this article make you believe that this is all a walk in the park. It is a testimonial to Angel’s personality that this all seems so easy. For the second time in as many weeks, Angel again is in Tampa General Hospital, waiting for a sonogram.  Her urine output has been less than expected and she is swollen and a bit uncomfortable. As her mom, Lisa, reminds us, transplant is just another type of treatment, not a cure.

 

 

 

 

 

 

 

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Congratulations!

Blog-Mouth with Lisa

What an honor it was to look at my notifications and see that I was nominated for the Versatile Blogger Award. I received notification from Madhurima all the way from New Zealand, she runs the Nostalgic Lemon Blog. I found her blog one day while just wanting to read about some of the shows I was just about to start Binge watching. I like what I saw and followed her. She writes about different subjects such as TV, Books to Personal Stories she shares. I was so shocked and surprised when I saw her nominate me for the Versatile Blogger award, I thank you and wholeheartedly accept the nomination.

In accepting this award there are a few small rules to follow:

So upon acceptance of the award, here are the official rules:

  • Thank your nominator
  • Share the award on your blog
  • State 7 things about yourself
  • Choose 10 new nominees who…

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You’re driving down the road, listening to the radio. A song comes on. Do you keep listening or do you change the station? Take a chance, roll down the windows, turn up the volume and allow yourself to remember. Music does that. Phantom Phunk has done that. They brought back a moment in time with their newest release, Distant Kaleidoscopes. Vintage without even trying, classic yet brand new, this music is right out of their playbook. This new song will “inhabit your thoughts and meddle with your soul.”

Music is your own experience, your thoughts, your wisdom. If you don’t live it, it won’t come out of your horn. ~Charlie Parker

Walk into the room and take out your favorite vintage record album.  Spread the dry leaves across the top of the cover and hold it out in front of you.  Tap the cover from underneath, gently.  Look around the room, are you still alone?  Watch the seeds come to the top and roll off the album cover and drop to the green shag carpet below your feet. Don’t spill the pot, that wouldn’t be right.

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The lonely piano starts playing, the drums kick in.  By the time the guitar hints at its presence, you are ready to open the door.  Slowly people start showing up; another night, another party. The trumpets sing. There they are, your crazy friends, in various states of dress and sobriety, ready to go again. Bongs get lit, the beer gets passed around and before you know it, crash! A bottle breaks and pills of all colors fall to the carpet.  Someone spins them into a complex pattern of colors and shapes. The music continues to get more complicated.  The pills and the pot get passed around and you are off.

The music demands your concentration, but you on turn the TV, sound all the way down.  The black and white flashes from the screen illuminate the room.  The drums command attention, the trumpet fills your head. The vintage guitar work satisfies your expectations, but you are waiting for that voice. You are expecting to hear Alex sing, but then you realize, you are singing in your head.  You are all alone, watching amazing colors spin right in front of you. That Distant Kaleidoscope is so close that you can almost touch it, yet it is too far to grab. Suddenly you hear a knock at the door.  Hurry, flush the evidence. The music stops abruptly and the night is over. The memory fades into the background of your existence.

This song has it all.  It has that middle of the night beer run kind of groove, that vintage 7-Up can with the flickering light bulb kind of feel, with a fabulous display of Afro hair, dark sunglasses and The Mod Squad all wrapped up into a well-honed digital masterpiece.  Yet, it is new and it is fresh and it is modern.  Distant Kaleidoscopes is all instrumental and beckons to the listener in no uncertain terms, “take a walk with me down memory lane and right into your future.”   Go ahead and listen, see where this song takes you. Drop me a line and let me know. I’d love to hear your story.