Day of Remembrance – Stanford, September 27, 2015
Every year, Stanford holds a solemn service to remember and say the names of those children lost under the care of this hospital. Mia and Laine were remembered that way last year, and will again every year going forward. There names are said alongside many many others. This year I had the honor of speaking, and telling this part of the world something about Laine and Mia, and about our feelings, raw that they are. Here is what I said:
Lament, gratitude and hope
These three emotions Lament, Gratitude and Hope swirl, churn and whirl in the days, weeks, months and years following the loss of one’s child. As you all know so well. One emotion can dominate for some time, morph into another and surge back at unexpected times. What I have to say to you today is structured similarly – a swirl of emotions – it’s messy, but it’s what you all and my wife and I feel. It’s our reality.
Two of my three children have died. Each one is and was precious to me:
Mathew, is now 14 and is currently in the 9th grade. Mia died 5 years ago at six years old, and Laine died last February also aged six. The life, well being and happiness of each one of them was and is more important than my own life, well being and happiness. My wife and I had expected, somewhat naively in retrospect a more idyllic life. We had wanted several children, boys and girls. We imagined teaching them well so that they would be strong and kind and happy adults with their own families in time.
Mathew was born on a special day – the first Christmas in the new millennium, December 25, 2000. He was also born in the year of the gold dragon, which happens once every 60 years. And he was born with such intelligent eyes and an engaging face. Then came Mia on July 11, 2004. She too had a kind face. But we imagined she had more trouble engaging with us even as an infant. It was our imaginations, we were sure. We spoke of how Mia was probably going to go through a tough period – when we said tough, we meant door slamming, eye rolling, talking back and the craziness of the teenage years. We did not imagine the storm that was coming.
Lament:
It turned out that Mia was sick. Quite sick, and became especially sick every time we fed her. We worked with the good doctors at Lucille Packard to try and figure out food for poor Mia, but ultimately failed. We set up a make-shift ICU of sorts in her bedroom. Anna and I, Anna more than I, handled all her medical needs 24 hours a day. It was very tough and involved not sleeping very much. But we loved her more than life itself and wanted to do our best for her. We managed to take Mia and Mathew to Disneyland with all her medicines and pumps. Mia loved Mr Toad’s wild ride and Dumbo the best. While Mia never spoke, she laughed out loud on Dumbo while Anna held her. Although we did not realize it at the time, we were mourning Mia’s death every day, a little at a time, because she was so sick.
Gratitude:
From deep within the chaos at home, new life was sparked and Laine was born on August 17, 2007- three years after Mia was born. Laine was literally like an angel on a mission. She slept with Mia, as we had no choice. She hugged Mia at night. And her presence during Mia’s painful and nauseating TPN infusion was more helpful to Mia than was her morphine. Laine grew closer and closer to Mia. She was deeply empathetic, knowing Mia and knowing all the people around her. We were grateful for our angel Laine.
Lament:
Mia died on June 24, 2010 at nearly six years old. Why did this have to be? This was not fair, we thought. We were not supposed to be burying a daughter. We fought hard to not turn bitter. It would have been easy to just get angrier and angrier, with ourselves, with each other, with family and friends, with God, and with life. Young Laine was a very important part of why we did not spiral. Her empathy was tremendously valuable, therapeutic even. She helped us as she had helped Mia.
Gratitude:
Laine was a special little girl. She loved people, and people loved her. She prioritized connections with others more than anything else. Deep connections. She could look into someone’s eyes, and truly see their souls. Her singing filled our house every day. And she was funny. Laine told us that she got married when she was four years old. Her husband was called Prince….of course. Prince was 8 years old. She had nine (imaginary) children, and she kept a calendar on which she recorded their birthdays and various scheduled activities. One day when I was driving with her down El Camino near Café Barrone, Laine was making strange noises in her car seat. Oh.. Ahh. I said “Laine, what is wrong!”. She replied “Daddy – I just had a baby!” Now she had 10 children.
Laine demonstrated profound warmth for someone so young, perhaps because of her sister Mia. For example, during the first day of kindergarten, Laine knew that anyone new would be nervous and even scared. There were new girls entering her class. As each one came in, she left her friends, went to them, gave each a hug, took them warmly by their hands, and led them to her friends. We felt gratitude for having a girl that had so much empathy and warmth. She never denied her sister Mia, constantly talking about her to friends and strangers. She would introduce the topic of Mia to everyone – the baristas at Starbucks knew all about Mia through Laine. When with Mathew at the park, Laine would jump into conversations with adult strangers, starting with the line “Hi! My name is Laine. I have a sister. Her name is Mia. She died and she’s in heaven. I have a brother named Mathew. He’s twelve. I don’t have any other brothers or sisters because my mommy doesn’t like to wipe butts any more”. She certainly managed to get across a lot of information in one go. The adult strangers would not know how to respond, and would often just back away, very slowly….
Lament:
But then things went badly. In the middle of February last year, Laine had a stomach ache. It became worse with time and we were in and out of the PAMF and Stanford Emergency Rooms three times. Almost unbelievably, Laine died on Feb 24th of appendicitis. It was as if space just shimmered, and she was not there. The angel that had saved us from so much had died. We were devoid of bodies. We were empty. This made absolutely no sense and was highly unfair. We were made of stone. Once was bad enough. We had somehow survived Mia’s death. Laine was life. She was life in its fullest. She picked the flowers that we took every week to where Mia was buried at our church St Bede’s. We buried Laine next to Mia. And we were not sure who was supposed to pick the flowers now. Swirl, churn and whirl.
Hope:
Now it has been 19 months and 3 days since Laine died. We try hard to understand why God would want our daughters back so soon. Perhaps their souls were intertwined. Perhaps they were part of the same being somehow. They could not be apart. Mathew did say after Laine died that it was quite miraculous that God was able to take Laine with such precision. If she had something more readily diagnosed, she would have been saved by those around her. If she had something protracted, she would have suffered for a long time. If she had been killed when hit by a car when biking, then the person that hit her would have felt guilty for a lifetime. So — it must therefore be he Hand of God. Personally, I honestly don’t know.
Lament:
But these feelings of hope are often short lived. We then cry and are angry again. Then we are sad. Profoundly sad. A sadness that you all know – where the primary characteristic is emptiness, a quiet hollow sadness. Our son Mathew is now an only child. This was not supposed to be. We miss the noise at home, the laughter, the singing and the crying. We miss what would have been the future. Mia should have lived a full life. But that was not to be. Laine was going to be a very special adult. But that is not to be.
Gratitude:
We are grateful that we were able to give our daughters everything it was in our power to give during the six years we had with each. We have no regrets, and for that we are grateful. We saw the impact they had on us and on many around them, and were feel a gratitude, strangely, that we were witnesses to two such miraculous girls. We feel gratitude for Mathew. I feel the depth of the connections with other human beings in a way I have not felt before. I sense a story that has not ended. And for all that, I feel gratitude.
Hope:
I’d like to end with excerpts from an essay written by my son Mathew – he was 13 when he wrote this essay, intended for school but in reality far more than an assignment. It represents his processing of the tragedies that have befallen our family, and was a critically important message to my wife and I at the time we first read it, interestingly at a parent teacher meeting. It recently appeared in the quarterly edition of Connections:
Mathew writes: “Over the past year, the very foundation of my life has been shaken. With that earthquake in my life, I became enlightened on the meaning and importance of hope and how it can help me live a full and proper life. Five years ago, I thought of hope as nothing more than a superficial attribute that some people possess. Hope did not give anything real or lasting. All it would do is fill people with an empty and temporary happiness that would soon fade away. Now, I feel like hope is fundamental to all humans, and it is the driving force for why we live our lives in a world that can often be quite unfair.”
Mathew then goes on to describe his feelings starting with the birth of Mia through the birth of Laine through the death of Mia. Resuming to his essay now:
“On February 24, 2014, Laine died from appendicitis. She died when she was six years old, just like Mia. I could not comprehend the overwhelming grief and sadness. Life had dropped not one, but two atomic bombs. Gradually, my senses came back, but that sense of life being pointless would not cease. I could not see the light at the end of the tunnel, and I started questioning life altogether. Is life worth living? Why should I live just to go through all of this? What has happened to me as to even be asking these questions? Slowly but surely, some answers came. I could never change the fact that I lost both of my sisters at such young ages. However, I realized that all I needed was simply one thing: hope. Hope was a trait I had seriously devalued, and I realized I needed it in order to keep going on in life. Everyone has hope. They just don’t realize that. If a student has a very stressful day, there is a hope that tomorrow will be better. Hope gives people the power to push on even when times are dark. Life for most people in this modern world is filled with more negative times than positive times. Combined with school, work, relationships, death, and much more, many people would find it hard to live without the hope that good times will soon come around. As for me, I hope that my future will be brighter, I hope that I will be happier, and most of all, I hope that I will see my sisters again.”
Thank you for listening to our story