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Gardenias, my mother’s favorite flower

After a heart attack, mitral valve damage, a second myocardial infarction and ICD implant, my mother was finally transferred from a smaller hospital in Clearwater, Florida to Tampa General Hospital. I remember waiting in the ICU waiting room for the helicopter to land and have my mom settled into a room where she would receive the advanced care she needed.  Unfortunately,  my mother’s condition deteriorated rapidly, something I could never have predicted. Her only chance of long term survival was a heart transplant.

 

It was August of 2000 when this happened. Dr. C from the transplant team came into the room to interview my mom.  I have known him since 1989.  I can’t remember if my sisters or my dad were in the room with me.  Memories are like that, some parts of a story are vivid and some are not.

“Dolores, has anything stressful happened to you in the last year?” he asked.

“Yes, my mother died,” she said.

“Mom, what are you talking about? That happened a year ago,” I said, words that have haunted me every since, words that can never be taken back and words that were not only insensitive but incredibly naïve.

I can no longer remember the exact time line of what happened in the next twelve hours.  My mother coded, and luckily my boss and best friend was the cardiologist in the room with her.  She survived and we were all able to go into the room to see her before the surgeon on call was going to perform urgent mitral valve replacement.  She wasn’t really awake, but the doctor was able to rouse her long enough to ask her if she recognized who was in the room with her.

“Yes, Fleischman,” she said. She often called him by our last name.

There were other things said before the code, but I only remember very few.  She said she had to get home to take care of something, but we never found out what it was. She also said she didn’t want to die on my nieces birthday.

I said, “Mom, you aren’t going to die.”

I didn’t say, “I love you.” I didn’t tell her all the things I should have been telling her since I had become a parent and realized that my mother must have loved me as much as I loved my son.  To be fair, we were not a very demonstrative family. We never kissed our parents good night or held hands.

She was wheeled into surgery and we were absolutely sure she would survive.  Hours into the night we waited.  My mother did survive the initial valve replacement, but as they were closing her, she began to bleed. They did another valve replacement, but my mother was not strong enough to survive.  We never got to talk to her again.

Seventeen years have gone by. My child is grown and is a parent now.  My nieces and nephews are grown.  Angel never got to meet her and neither did my granddaughter.

Not a day goes by that I don’t think about her. Every time I am with my sisters a mommy story is told.  Mostly we talk about her like we saw her yesterday.  She visits me in my dreams and we can often feel her presence in my dad’s house.

Almost everything in my dad’s house is the way my mom left it.  When I am there I am comforted by the fact that my dad knows we love him and he knows we loved her, even if we didn’t show it and often didn’t act like it.

I often think about how she lost her father when she was only 19.  She married shortly after and raised a family without her dad.  We didn’t talk about it much.  After I lost her I realized she must have thought about him every day.  She carried on with strength and dignity and so do I.  Crying is left for the shower or long solo car rides.  I bet that is what she did, too.

So tomorrow is Mother’s Day again.  We don’t really celebrate because we don’t have our mom anymore.  Even though I am a mother and grandmother, the holiday was never about me. It was about my mom.

She lost her mother a year ago, she said. Yes, mom, you were right and I am so sorry I didn’t know.

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Back to the place she knows so well, and welcomed by those who are dedicated to help, but have become family. Tampa General Hospital, where everybody knows her name. It was a simple gesture, saying welcome back on the board in Angel’s room. To a casual observer it may not even be noticed. To me, as aunt of one of the most amazing people I know, that gesture was symbolic of the many years of love, heartache, triumph and hope that we have all shared in the amazing 12 years of Angel’s life.

Angel came into the world  at St. Joseph’s Women’s Hospital, but soon found a second home at Tampa General. She was born with Vater Syndrome, a relatively rare set of congenital anomalies requiring life saving and life preserving surgeries, medications, an amazing and dedicated set of physicians, ARNP’s, nurses, hospital employees and the super hero (thank you for the words my beautiful friend across the pond) mom whose dedication and love help Angel thrive in ways no one could have predicted.

Back in the hospital after only a few days home, I had time again to reflect on how lucky a chronically ill child is to have an envelope of love and dedication surround him or her in an environment that us foreign to most people.

After just a few minutes in the room, it was time for shift change. A nurse that had never met Angel came in. This is rare. Meanwhile a nurse from The IV  team came in put a new sonogram guided IV into her left arm because the one in her right arm was no longer useful. That nurse had cared for Angel in the ICU  many times before. Another nurse stopped by to sit on the bed, hug Angel a few times, talk with the new nurse and reminisce. Even though she
had cared for Angel only a few days before she said, “I remember when you used to make me call you Princess Fiona.”

I had forgotten Angel’s Shrek period, but it did remind me of the day that Angel was dressed in a beautiful dress for her hospital wedding to Diego, a cartoon character she loved so well. 

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So then began the trip down memory lane. Remember when Angel had the sign on her hospital door saying that all who enter must put money in her bank? Remember when we used to spend every Saturday snuggled on the big blue chair watching movies till we fell asleep?  Remember when Angel would say, “be right back,” and walk to the other side of her crib to pretend she was going to the potty?”

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How about all the Halloween parades and the Christmas parties? Or what about last month when the cashier in the cafeteria told Angel she was sorry they didn’t have donuts anymore? Or the time we sat for hours watching her sleep after the takedown of her colostomy or when she sat in her doorway crying, “water” when she was on fluid restrictions and none of the nurses wanted to walk by her room?

Most people can go their whole lives not entering a hospital. Some go occasionally and don’t give it much thought. For some, hospital is a home with extended family who come to know and love each other, know spouses, children, uncles, aunts, cousins and grandparents. For those people, I hope they have a place to go to like TGH. A place where doctors and nurses stay, and care, and keep giving.

“Be glad there’s one place in the world
Where everybody knows your name,
And they’re always glad you came;
You want to go where people know,
People are all the same;
You want to go where everybody knows your name.”

source: http://www.lyricsondemand.com/tvthemes/cheerslyrics.html

Welcome back, welcome back, welcome back.

Love you, Angel.

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