Thursday, September 11, 2014

Happy Birthday Nuri

I wrote this in 2014 just after my husband's birthday.  I'm sharing it again this year because I can't emphasize enough what he means to me and our children. I also think it is important to counter the accepted stereotypes about marriage and autism resurging in social media. Autism, even where an autistic family member has intense support needs, is not the cause of ending marriages. Either both parties are committed to their marriage vows or they aren't. Blaming disabled children for divorce is not only unacceptable, it makes that child a target for all the emotional baggage other family members want to scapegoat them with. If siblings aren't getting enough attention, they are not participating in including the autistic sibling in the family and that is on the parents. I'm not saying it is easy. It isn't. Trust me I know. What I'm saying is that if the entire family is united, it is more than possible. It is wonderful. Here is my essay in honor of my best friend, love, the father of my children. Peace.

Interesting fact about my husband. The name Nuri comes from the root "Nur" which means light. Yesterday was his birthday, and just as he was ending a late night of working Tuesday he was closing browser windows and I noticed his Chrome browser looked like this:

Image description: the word Google spelled in cake and cupcakes with candles on them against a white background. A small white pointer shaped like a tiny white hand is hovering over the word and under the hand is displayed the words "Happy Birthday Nuri!" in gray print on a white rectangular background bordered in gray.

Nuri holds his son in the NICU,
December 7, 2002
It was a perfect, subtle, and geeky way to start a day of remembrance for his light, and celebration of the gift he is to us. Of course most of you don't know Nuri so I will only say that I know very few fathers like him. When you choose to love someone, you rarely stop and say "now what kind of a father would he make?" You only feel intensely, and if you are like me, you sit in daily amazement of your luck. It certainly wasn't something I expected. If a fortune teller had said to me when I was young that I would marry anyone I would have laughed myself to tears. That was not really the plan. If I had been told that I would find someone so devoted to his spouse and children I would have shaken my head in serious doubt. That sort of thing is a bit of a relationship miracle. Relationships take hard work, and that is not helped along by life. To help you feel contextually what I mean, let me relate a real life example of two marriages.

I met two Turkish sisters, one two years older than the other, halfway around the world. These two pretty sisters had met two American military men in a nightclub and they each married those men. The younger one happily married an army sergeant and they raised two lovely daughters. The older sister married a dashing officer and they moved back to the U.S. She thought she was living a dream life with a fairy tale ending in Texas.  One day she and her husband were driving back from a trip when another vehicle T-boned theirs. She woke up two weeks later in a hospital room unable to move. Her husband had been released from the hospital a week earlier with minor injuries and was standing in her room. A team of doctors was discussing what kind of quality of life she would have. They told him one leg would be shorter than the other. She would require several more surgeries. She  would need to learn to walk again. They did not know what her brain function would be. Certainly, the internal damage combined with a shattered hip meant she could never bear children. She heard it all of course. She was in traction but awake. Her hearing was working perfectly. Her lead surgeon said that she would need her husband to support her through the next 2 years of physical and occupational therapy. They told him he could speak to her but only briefly. He walked to her bedside and told her he "couldn't handle this". Her dashing officer walked out of her room, the hospital, and her life. She was left to face two years of grueling recovery work on her own, in a foreign country, with no family around her.

First Father-Son road trip, Pentagon City,
February 2003
Life is like that. Things happen. It is not about what happens, it is whether the person you choose to walk through life with will be there and stand by you through those challenges. My dear friend, who I'll call Leila, fought through surgeries and PT and OT, she called her sister and her American brother in law who were by then stationed in Germany and told them what happened, and that she was alone. They tried to help as much as they could. She learned to use her rebuilt, shorter leg, a walker, her metal hip. She went back to school, got a GED, and didn't stop until she had a Masters degree. She studied until she became a naturalized U.S. citizen. She met a man, an American who was an African American Ph.D. and both faculty at a university and consultant for the U.N. When I last saw her she was incredibly happy and they were moving to London. He had never met her before her life changed. He knew her as she was and loved her as she was. She told me she finally realized that her first husband had never accepted her. She just hadn't realized who she really was until she acquired a disabled label.

Father and son, Mu is about age 3 here
So now back to the light, and my Nuri, and his birthday. When I met him, I was losing my sight again but didn't know why. I later learned there was what appeared to be a tumor under my forebrain. I was in Panama at the time with my birth father. What Nuri said to me was to come home, meaning come back to Turkey. He would find the best damn neurosurgeon in the world but I wasn't going to give up we were in this together. So I stood there, in my quarters at my birth father's estate remembering Leila and the story of her life. I went back to Turkey. Nuri insisted on keeping me linked to life. We married quietly and beautifully against my protestations that this was a brain tumor, and I would be a burden on him in the end. He said we would live a lovely life in Istanbul and laugh and I would wake up hearing the sea every day. He built a database of the information that I needed to access in order to manage daily work and home tasks and added a text to speech widget on my computer. We lived in Istanbul and were very happy until September 11, 2001.

Nuri and Musti enter the UMD pool
for a swim class
On Mu's diagnosis day Nuri hugged our son. He was overwhelmed. Time marched on. There was no discussion of  "not handling it". There was only "how can we work together for Mu's future?" "Our son, "Nuri said, "should have a future. He should be happy." He watched his son, whose middle name is also light, make progress they said was impossible and he slowly moved us into life again.

 Yesterday, Mu was doing an occupy protest in our bedroom in order to avoid bedtime. He was on his back on our carpet absently blowing notes on his harmonica. Nuri saw him as he was walking past our room to his home office.

"Hey son!" he called, smiling.
"Hey dude!" Mustafa answered.
Shock. We were in shock.
We are never sure when he has these moments of verbal speech that we aren't hearing things. Nuri ran into our room. Mu smiled and gestured that this might be a good time for his father to tickle him.

What a gift he chose for his father's birthday. That young man knows when and how to blow us away.

Sometimes I feel the joy a person feels when the sun is on their face and it shines so bright and warmly tears stream down.

Light upon light, glowing infinitely.

Happy Birthday, Nuri, my heart. How lucky am I?
Nuri years ago, playing guitar at his old home office


  1. Love you all! You know what your name sounds like in the Arabic, right? When Light marries Generosity - we get The Chosen One. What a family!!!

  2. Thank you for your beautiful stories of your wondrous family - and extended family. You are a blessing.

  3. What a beautiful tribute to an obviously wonderful man. Thank you for sharing.