Ben loved tennis, even at the young age of three.  While in the hospital in the summer of 2008 we watched Wimbledon together as a family and after that he was hooked!  He asked his grandfather for a racket and off he went.  Ball after ball after ball, Penns and Wilsons – inside, outside, wherever – he practiced. Ben was insistent in his final month of life that he learn to serve overhand, “just like Roger Federer.” When he could no longer stand or maintain his balance, Jeff, Uncle Brian, Uncle Steve and Aunt Kristen played for him – virtual tennis on X-Box. Ben would sit on the couch, pick out what the players were going to wear, and what court they would play on. He involved himself in the video game as intensely as he did watching a real tennis tournament.  

By Christmas of 2008 Ben was mostly in bed, not able or interested in coming downstairs anymore. Aunt Deborah thoughtfully gave him a copy of Wimbledon 2008 (Men’s Finals) on Christmas Day. Immediately after opening it he put it in his DVD player where it played on loop all day and night for four days – until his death on December 30th. He listened to the match over and over with his eyes closed. And if ever I thought he was sleeping and turned it off, he would quietly insist, “Mom, turn the Roger Federer movie back on.” Something about listening to tennis was a comfort to him.

I wonder now, looking back what Ben was really hearing. I wonder if he was hearing the cheers of that audience, watching an epic tennis match, or the cheers of those on the other side calling him home. Or both. Perhaps he was between both worlds for those few days. The only smile that crossed Ben’s face in his last conscious 72 hours was seeing Rafael Nadal hold up that trophy. I wonder (or hope) if in that moment he could see himself. Almost there. Almost done.  

The US Open began yesterday. Last year Jeff and I had the privilege of attending for the first time – thanks to the generosity of some kind friends. It felt like a pilgrimage we needed to take. To see in live time and space the men and women who had inspired Ben’s love of tennis and the two men who had walked alongside us in his death, not even knowing so. As Mr. Federer came onto the court to the thunderous applause of the evening crowd we both sobbed. I’m sure the people next to us thought we were crazy. We looked to the purple sky and wondered if Ben could see us there rooting him on.  It was an amazing and bittersweet experience.

It is impossible for us to separate tennis from Ben now. The last loves of his life are what we are left with and what we will remember.  So as the tournament begins again this week I am missing Ben acutely and all his passions. I just want to sit with him on the couch and hear his commentary.  To hear him say, “Dad, did you see him smack that tennis ball?” or “Come on Roger!” or “Yaaaaah Rafa!”  And I rue the day when his favorite players will retire – for in watching them play, I feel comforted and closer to my son. But there will be a day soon when those guys and girls will no longer be on the tour. It will be another marking of time without him. Perhaps at that point I will just play the Wimbledon 2008 Final on loop myself.  But in the meantime, I am thankful that this tournament has arrived again.  And I look forward to the day when we can take Ryan with us to our first Wimbledon!

I miss you champ.

There have been many times since Ben’s death that I have pondered what it means to stay together. I sadly understand the statistics behind couples divorcing after the death of a child. How much grief can one house hold? How much strain can one marriage take?  How can you sustain a relationship when no one has anything left to give? In our darkest moments following Ben’s death I think both of us were ready to walk – for it seemed we couldn’t take anything else on top of our grief. But somehow, probably due to Ryan, we seemed to recover. We continue to recover. I don’t pretend to be righteous about this, or hold it above couples who have parted ways. But by grace, it seems somehow we are still here together. And today we have been married for 15 years. 

A lot has happened since August 26, 1995. First and foremost, my hair has gotten a lot better – thanks to Aveda and the Chi. Furthermore, my brows no longer look like I was part of the cast in Mystic Pizza or St. Elmo’s Fire. But it is obvious we are not the same people we were back then. And who we were prior to Ben’s death is not who we are now, nor who we will become. How exactly we have been changed will become clearer as we go forward. But there is no getting over this, through this, around this or under this. Our new life is not what either of us wanted – nor do either of us have the power to change it. This wasn’t in the cards. This isn’t a honeymoon. We are not in a Nicholas Sparks novel. But what we are is a witness.

Susan Sarandon in the movie Shall We Dance says, “We need a witness to our lives. There’s a billion people on the planet… I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything. The good things, the bad things, the terrible things, the mundane things… all of it, all of the time, every day. You’re saying, ‘Your life will not go unnoticed because I will notice it. Your life will not go un-witnessed because I will be your witness’.”

Jeff has been my witness.   And I have been his. Without his eyes my journey of loving and losing Ben fully would be unaccounted for. He is the only person at the end of the day who knows what this is like. Who knows how much has been lost. Who feels the void of Ben as much as I do. Only him. And for that I am thankful and less alone. I can say that when I look across the room – this man is my witness. This man saw Ben cut from my body, this man watched me learn to be a mother, and this man pulled me off the floor when Ben received his death sentence.

I did not see one person from the funeral home, nor did I ever go there. That was Jeff’s final gift to me in caring for Ben. He handled it all – to the point of carrying Ben out of our house – so that could be my final image. I know that was the single hardest thing Jeff has ever done. The tears streaming down his face told me he was sorry. He leaned over me, lifted Ben out of my arms and carried his body away. And that was the last time I saw my baby. White, stiff and in his father’s arms. I’m guessing this is not what most people have in mind when they are registering at Pottery Barn.

There will be no champagne or roses tonight – this isn’t the Bachelorette unfortunately (they say love it don’t come eeeeaasy…yah, tell me about that Wes). There will probably be no words spoken at all. Just a nod, a deep breath, and perhaps some tears – for the unspeakable journey that we have been on together. I am grateful for this witness – I am. I just wish he was witnessing a different story.

Thank you Jeff.  For loving me and our sons. 

I have a neighbor named Susan. She is neither Desperate nor a Housewife. I met her briefly when we moved into our house during the summer of 2007 – then a short time later Ben was diagnosed. Needless to say I didn’t see much of her thereafter, as our life was thrown into complete and utter chaos. Ben never knew her. Nor she Ben. There simply wasn’t time. 

Fast forward three years. Ben is gone. And Ryan is very much living. In fact, he would prefer to live at Susan’s house with her boys. Susan and her family have been an unexpected surprise on the other side of Ben’s life here. She is my first friend who didn’t know him. At first that was strange for me. How could I interact with anyone who didn’t know him? What would we talk about? And how could we possibly become friends?

As it turns out, you can be friends when you are brave. Susan is the one being brave. It would be easy for her to not answer the door, to avoid seeing us through the window, to pretend she didn’t hear Ryan’s feet running in her front yard. But not only has she not ignored him, quite the opposite – she has engaged us all – including Ben – with her compassion and generosity. While some people are afraid of us and wouldn’t utter his name out of their own fears, Susan asks. She asks about Ben, she is interested in learning about our life with him. During the first year of his absence when I would see her she would usually ask, “How are you today?” In asking, she knew she might get anything for an answer. Yet she asked. And so strangely, I answered – and thus began our friendship.

We are privileged to have their family as neighbors. She has yet to ask me for an egg, or anything from my kitchen – as she knows I probably won’t have one. But it has been fun for all of us to get to know her talented and sweet boys. And she is getting to know mine – both of them. So we can be friends. Because as it turns out, you didn’t need to live in the same time and space to get to know someone. You just have to be interested, kind and brave. Like Susan.

We are officially a month out from our Launch Celebration! I am feeling a mixture of excitement and nervousness. It is a bit like planning a wedding, only knowing ahead of time that the groom won’t show. I can tell I am having some anxiety because last night I dreamt I was at the event and a number of things went wrong. First, during our program there was a video montage playing of Tiger Woods and all his mistresses. Secondly, my front tooth had chipped. Then I remembered I had left something at home, so I borrowed a car to go get it. By the time I returned most people had left, so I sat down at a table with my friend Morna’s husband who proceeded to give me pointers on how to conduct telephone surveys. As Sasha Baron Cohen would say, “Great success!” Needless to say, in my dream the evening was a complete bust. 

Based on the guest list though I am pretty sure that won’t happen. There are so many fun, fabulous and smart people joining us – thank you to everyone who registered! It will be amazing and strange to have such a large crowd, one that both honors our son and embraces our new direction. And yet, the only person I really want to be there cannot be present – at least in a physical way. I remember sitting in the front row at Ben’s memorial and thinking, “What? This is for my son? Why is his picture on this program? I think I will go home and see him now.” A combination of shock and complete insanity. There is no way for your mind and body to process such a separation at that point. It is still hard to comprehend it now, so I suspect on September 10th it will feel very surreal. But there is an excitement. At times I am sitting in meetings and I feel like Ally McBeal – hearing a soundtrack that no one else can hear. But in one month the speakers will be turned on! There is a lot to do between now and then – hopefully my teeth will remain un-chipped. And if Tiger Woods wants to come we will welcome him, mistresses and all. They can have their own table! It could be a great way to rebuild his image right?

Looking forward to seeing you there…

I have spent a lot of my life at the beach. Our family has a cabin that I have had the privilege of spending my summers at. Three years ago, I spent the summer there with Ben. He was two, he was healthy – or so I thought. We spent hours, days, and weeks playing, throwing rocks and walking the shore. I had no idea that two weeks after our return to Seattle we would be checking into Children’s Hospital. Fast forward to 2010. I am spending many of my days on the same beach with a different two year old. We are throwing rocks, looking for crabs and wading into the same water that is now his brother’s grave. It is an irresolvable tension.

Ryan, in his two year old way, has been having a difficult time “controlling” the water. The other day the waves kept coming and he wanted the water to be still. He stood on the shore shouting, “Stop waves!  Stop! Don’t do that!” Then he turned to me and said, “Mom, make the waves stop!” I laughed and then sighed…“Ryan, Mom wishes she could make the waves stop.” Oooooh how I wish I could make them stop.

Like the tides at our cabin, there are waves to grief as well. In those first days, weeks, months and year of Ben’s absence they were so powerful, so forceful, that they would literally knock me off of my feet. They came in succession – one after the next – like being caught in the breakers in Hawaii, unable to get back to the shore. Each time I would come up gasping for air, only to be pulled back under again. They were terrifying. It was like being in purgatory – you felt like you were dying, and yet you didn’t – as if you were having cardiac arrest over and over. You cry, you shake, you try to breathe, you beg for your child, for release from this pain. I would lay in a fetal position and just cry, “Beeeeeeeeeen” – my only prayer. I thought I was literally going crazy. The worst ones for me could only be quieted with valium. 

I still experience the swells of grief, but they seem different now – they aren’t always as volatile. Perhaps the biggest difference is that the waves themselves don’t scare me anymore. They are not shocking to my system. I don’t fight them, nor panic when I feel them coming. You don’t always know what will set them off – a picture, an event, something insensitive someone says, a little boy wearing Lightning McQueen shoes or just because. But it seems I am getting more accustomed to their ways. I simply let them come as they will and ride them out. Like the natural tide system after the crash the waves get smaller. And eventually they return to lapping – the sadness ever present, even if I am experiencing a reprieve on the shore. For the stages of grief are not linear, as Elisabeth Kübler-Ross led us to believe. They are circular. One after the other, sometimes all at once, each one repeating itself over and over, never fully resolving. It is the pattern of the ocean – rise and fall, in and out – it is the pattern of grief. The rocks can tell you. So can any parent whose child has been taken from them. 

As Ryan gets older he will learn that the sea has a mind of its own, you cannot control it. I am learning this too about the Sea of Grief. I am learning just to be thankful for the moments when the waters are calm and this new life seems manageable. How I long for the day when my grief and longing for Ben will no longer exist. When the waves will forever be stilled.  When I can walk hand in hand with both my boys on the shores of heaven. But that is a long way off it seems. 

Until then, Ryan runs. He smashes shells violently, as only a boy can. He heaves a log into the water, thus creating his own waves. And we continue down the beach…