"Who was my Father?"

"Mom, who was my Father?"

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.

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 do not judge her. Noni amazed doctors at every turn, refusing 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?"

"But don't they become dependent so fast?"

"Let's just monitor oxygen intake, pulse oxys, protect her retinas and see if she pinks up more. Her Apgar scores are fair considering the 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 and touch my baby. What an unforgettable moment to gaze at her beautiful face. I could see her sweet Dad with their identical dimpled chins.

We bonded right away, Noni and I. Her eyes, even as a baby, were full of wonder at the world about her. She tried to do everything sooner than other children her age. Almost seventy-five percent of the time, her body said 'Stop' and she had to. Then she was beet red, angry with blue lips, unable to have a temper tantrum without gasping for air.

"Mommy, it isn't fair!"

If I had a dollar for every time she said that one, I would be King Midas.

She consumed books and was an excellent student. Noni never went to public school. She had a great tutor and Noni was above average on all standardized tests. I remember Noni, at the age of eight, announcing she understood Quantum Physics. She might have.

She missed social interaction with healthy children but I don't know if she realized it. 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.

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.
Her physicians had to stay on their toes. She just delighted in throwing out a medical question and making them sweat.

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.

This time 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 am running late for the medical conference meeting. My hands shaking, I spill my Starbucks Caramel Latte from the gourmet food cart for parents. 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. For the first time I am truly frightened to lose her.

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 had looked into the deep pool of Noni's familiar copper eyes last night. The skin underneath them was very dark now. This was before I brought her to the ER.

She said, "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 she sounded moist with each breath. She refused to go to the hospital. Noni coughed and there was blood, a tablespoon full.

She wasn't upset.
"Let's have a Bon Voyage party, ok?"

We watched ' Beaches'. Sad, but Noni loves it. Then we watched 'Dr Zhivago' and 'Annie Hall.' After all that, we played Truth or Dare.

I ate a salad and she had her magic 'Harry Potter' mixture through her gastrostomy tube.

She fell asleep, 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.

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. However, she was still in charge. I was asked to follow the ambulance in my car. I was thinking good thoughts.

A week ago, she asked me about sex; she had kissed one boy. She thinks she has been cheated. She might miss sex and she has heard it is so wonderful.

"But, Mom, I won't get 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."

You know Noni and I 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 is the kind that covers two am feedings so you can sleep. But see, you aren't really asleep, 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.

Winter's coat covers the parking lot. Noni loves the holidays and she has a private room with a big window. But her eyes are closed. Thanksgiving is next week. I am thankful for my special daughter, my health and being a scientist where I can contribute.
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Suddenly, I hear sirens. The memories flood back as I see Steven lying in a pool of blood. I was rushed to Mass General hospital where Noni was born prematurely. Her handicaps began at birth then new ones presented themselves over the years.

We have lived at hospitals. Instead of parks and games, I told 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 choose 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.

Here is where Steven's name comes in. Skeletons in closets are not a good thing. He was my twin brother. We were so close from completing each other's thoughts, loving identical foods, mirroring taste in decorating and clothes, no need to speak just looks from the beginning. It is true what they say about twins. There is a union that joins the two twins forever.

The chance that Steven and I would meet someday were very slim. But, it happened, in a way only angels, wizards, fairies and others 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. My Mom married a great family friend that was twelve years older. That was when I was just a baby so 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?

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.

A little late, I was 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 a hug too. Lies caused this: Steven and Noni were truth.

I enter the consultation room and apologize for being late. Each specialist gave their opinion 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 procedure would destroy it.

I give them the papers and Dr. Sanders, the cardiologist, 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. 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 know we had said our good-byes. I had felt Noni leave like a butterfly gently lifts from a leaf.

My parents' rejections have made me stronger 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.