|"Mom, tell me about my Dad."
That was my daughter's wish for her Christmas present. Only one request, without cost or colorful wrapping. The emotional payment could hurt her and she has had enough of that. Of course, Noni has been treading rough waters since birth. Many in the medical field doubted she would reach fifteen.
The years roll back to the beginning of this incredible journey my daughter and I have been on. Noni's father and I were in a terrible head on crash. Steven's air bag didn't inflate. He was crushed to death immediately. The impact and stress caused me to go into premature labor. There was no time to stop contractions in the ambulance. At the Emergency entrance, our Noni was crowning at seven months gestation with a congenital heart defect.
Her baby kitten's cry was soft and hesitant but Noni amazed doctors. She refused to die despite tremendous obstacles. Before I could hold her, she was surrounded by white coats, like geese picking for seeds. They were speaking a foreign language and arguing.
"Should we intubate?"
"Monitor oxygen intake, protect her retinas and see if she pinks up more. Her scores are fair... considering trauma. We can always tube later."
Then all was soft white snow as someone sedated me. I drifted in another land for unknown hours. When I came to, I still had to wait hours to see Noni.
What an unforgettable moment to gaze at her beautiful face. She had her Dad's dimpled chin. We bonded right away. She was in the Neonatal Intensive Care Unit for weeks.
She ended up with a stent put in which would have to be changed as she grew. She graduated from an intubation tube to oxygen prongs quickly. Her eyes were full of wonder at the world about her. The nurses adored her.
I finally got to bring her home on portable Oxygen as needed and a monitor for both her heart rate and oxygen levels. She was on medication.
I was told that her condition was grave and that she was fragile. I should enjoy her because most children with her problems had short life spans.
As she began to pull up, her body said 'Stop' and she had to. Her face turned beet red with blue lips.
As a toddler she was unable to have a temper tantrum without gasping for air.
Then when she tried to play with other children she couldn't keep up.
"Mommy, it isn't fair!"
If I had a dollar for every time she said that one, I would be Midas.
She consumed books and was an excellent student. Noni never went to public school. She had a great tutor and was above average on all standardized tests.
She could carry on conversations with adults. I remember a very serious Noni, at the age of eight, announcing she understood Quantum Physics. She might have.
She read Harry Potter but also was interested in how everything in the Universe worked.
I worried that she was missing social interaction with healthy children. Scanning the Internet, I found chat rooms and support groups.
Soon Noni had a circle of five children with heart defects that she could play with. They would watch out for each other.
Their conversations were unlike ones found at public school recess.
Her best friend, Beka, would get excited and then become dusky around the mouth. Noni was right there.
"Squat down, Beka," she would remind her.
The pink color of life would return within moments of calm reassurance.
I am a Ph.D, working on Movement Disorders with stem cell research. I knew what Noni and I might be facing.
For the next fourteen years of her life, she would study and know more about her condition than her specialists.
She would spend a lot of time in the hospital. Her immune system couldn't keep up with the bacteria she would catch.
There wasn't any way I could keep her in a bubble.
Her physicians had to stay on their toes. She just delighted in throwing out a medical question and making them sweat.
She knew all her medications and used the Internet to look up anything new. She would question her physicians about new studies.
There were many times she caught people, either the lab or nursing stuff, doing something wrong and she let them have it.
One RN didn't glove when using the PICC line. It goes in through the arm and then is threaded into the heart.
Noni grabbed her hand and said, "Do you know what bacteria can do to my heart? ... kill me! I may not have a long time but I ... want it!"
She had the roar of a lioness, quick wit of a comic and wisdom beyond her years. She was close to the staff and knew the housekeepers by name,
gave everyone a card for birthdays and asked about their families. Most of them adored her except the few that resented her taste for knowledge.
She didn't understand that.
This time when we came into the Cardiac Unit, she was in severe heart failure. She was drowning in her own secretions. She refused to have the tube put into her airway and hook her to a ventilater. So, the staff put a suction catheter through a tiny tube in her nose that guided them into her lungs each time she needed suctioning.
Noni ran her own show. This way she could talk. She was in pain and requested a sedative. Asleep, she looked tranquil. I kissed her sweet cheek, whispering my love.
I looked into the deep pool of Noni's familar copper eyes. The skin underneath them was dark.
She requested to come home and her team agreed if she had an RN came in twice a day.
Last night she knew the hourglass was running out. She had a serenity about it all.
"Mommy, I am so tired but I don't want to leave you."
"I am going to be fine, my love," I promised.
She was having a hard time breathing and sounded moist. She refused to go to the hospital.
Noni coughed and there was blood, a tablespoon full.
It frightened me but she wasn't upset. Instead she smiled.
"Let's have a Bon Voyage party, ok?"
We watched 'Clueless'. Then 'Dr Zhivago' and 'Annie Hall.'
Then I insisted on a nap.
I ate a salad and she had her hi protein mixture through her gastrostomy tube that goes into her stomach.
She fell asleep again. I turned her oxygen tank down some and propped her with pillows.
I made a bed on the other sofa and watched my beautiful baby all night.
The next morning she had a 105 degree fever and couldn't lift her head off the pillow. Fearing a seizure, she agreed with my demand to go to the hospital.
A week ago, she asked me about sex. I hadn't realized she had kissed a boy that also had a fatal cardiac defect. She believes she might miss out on sex and she has heard it is so wonderful.
"But, Mom, I won't get to have that tingling, stars in the sky, explosive feeling."
I laughed so hard I almost wet my pants.
"If there is a man that can do that for you, don't ever tell any of your friends, baby."
Noni and I have talked about everything, even my love affair with her Dad. Everything except who he was. She wanted to know why we never saw his parents
or heard from them. It was the same way with my own family.
I told her that no one wanted her Dad and I to marry. I reassured her that it had nothing to do with her.
"The love we shared was the real thing," I said.
"A man that is your very best friend is the answer for a great relationship. He gets up for the two am feedings so you can sleep. Of course, a Mom always hears her child. But you pretend and watch the two people you adore cuddling."
Our great conversations are all in my memory book. It is full.
I tell her my memories about the accident as I see Steven lying in a pool of blood. How I was rushed to Mass General hospital where she was born prematurely.
Her handicaps began at birth then new ones presented themselves over the years. She knows we have lived at hospitals. Instead of amusement parks and beaches, I tell her stories and memories from my life and her own as a baby and toddler.
Noni knows her Dad was driving and he died immediately. She knows he was excited about her birth and had painted her room. He chose lavender, then finished with her sacred mural of swan lovers on a pond for one wall. It all remains with deco art, filled book shelves and her own artistic creations around it. It all fits beautifully as if he knew.
Skeletons in closets are not a good thing. Noni doesn't know her father was my twin brother. I had no idea that he was my twin but it was eerie that we were so close. We completed each other's sentences, liked identical foods, mirrored taste in decorating and clothes, no need to speak just looks from the beginning. It is true what they say about twins.
The chance that Steven and I would meet someday was very slim. But, it happened, in a way only angels, wizards, and fairies work through ways we know not. I believe God orchestrated our meeting. Identical eyes met in a crowd and a mystical energy path was created.
My Mom had an affair with a married man when she was sixteen and when twins were born, my Mom kept me and Steven's family took him.
Then Mom married a great family friend that was twelve years older. Pop was my Dad. He was a Decorated Marine Corporal who had retired. He was a wonderful Dad.
All was well with my parents until they met Steven. Mom knew right away. I could not see the resemblance. I was so in love, walking on air and why would anyone not be happy for us? We thought we were soul mates. You read about people so in love they "complete each other".
Something was terribly wrong and she wouldn't tell me what. Steven and I went to meet his parents and I am sure my parents had called them. They were visibly upset also. Believing we would use protection, my parents told me and his broke the news to him.
I was already pregnant, so the damage was done. We hadn't told anyone.
They were afraid and it is true where people intermarry and have children, they have a higher risk of health issues. I refused an abortion, this baby was a gift. Then we discovered from the sonogram about her heart. Of course, we were so young and believed in miracles. Noni would be one for the journals and we three would live long and happily.
Then the accident happened. Still somehow, I believed Steven would protect us from a galaxy far away.
Noni was constantly in the hospital, and neither sets of grandparents embraced that precious child. I could have used some support. Lies caused this: Steven and Noni were truth.
I am running late for the medical conference meeting. My hands shaking, I spill my Starbucks Caramel Latte from the gourmet food cart. As I walk the hospital halls, I feel helpless. This time I won't bring her home. I feel her desire to slip this skin, let go of this broken body; discover a softer journey. My sweet girl has fought like Rocky and I sense she is ready to truly meet her Dad.
I look out the windows as I walk. Winter's coat covers the parking lot. Noni loves the holidays and she has a private room with a big window. Thanksgiving is next week. I am thankful for my special daughter, my health and being a scientist where I can contribute. I am frightened that this time the holidays will be different.
I was supposed to bring some papers to this meeting. It is our "see where we stand and what is next." I love that they include me. My input will be different this time, I do speak for my daughter. Noni and I signed the Durable Power of Attorney and Do not Resuscitate papers this time. I remembered those.
I enter the consultation room and apologize for being late. Each specialist voices their opinions and what it came down to was Noni's heart had lasted much longer then any would have thought. It is paper thin now and any more procedures would destroy it.
I give them the papers and Dr. Sanders, the Chief of Cardiology, said he wants to talk about this. Then his pager went off at the same time two of the others did. It was Noni. In ICU, a code is not called over the hospital intercom. They have a protocol.
I follow the docs up to ICU and they were standing around her bed. The R.N.'s had already started code procedure but it was a flat line on the monitor.
I felt Noni leave like a butterfly gently lifts from a leaf. There was no pain.
My parents' rejections have made me strong but bitter. Some things you have to take a stand on. I had Steven for a while and that was special. Noni might have had congenital health problems anyway. What a treasure our parents missed. Some people have long ordinary lives. Noni and I knew each minute counted.
She received her Christmas gift. I believe he was there to carry her home. What makes me the happiest is that she can do anything now. She is healthy, strong and whole. I am quite sure she has her Dad to tell her the rest of the story.