How can we thank the multitudes that came to help us this week? We are shocked and astounded by the level of support and comfort we have been given this week by all of our communities: family, friends, religious, my work and Benjy's, Sam's school and those that we came to know since Sam's diagnosis. We are filled with gratitude for those who sent us letters or called us with condolences, came to Sam's funeral and then flooded our home for the past week. Friends from across the country walked into our lives this week as if not a day has passed since we'd last seen them. This week was so difficult but so important. We have learned many valuable lessons that we will carry with us forever. I will not be posting again and am so grateful to the many who joined us on our journey through this blog. It was a powerful tool to connect us with those we love who I could not talk with each day as well as those who somehow came to read this and kept us in their prayers and thoughts.
There is no way to capture what this past week has been for us. The details are written in my mind and I cannot share them here. I would not share the details or sensations of this week for many reasons and I thank you for holding our privacy and the intensity of this time in a safe place.
I would feel remiss if I did not say that the horror of childhood cancer is so steep that most of us never pause to consider it or face that we have in our own cities hospitals in whose halls wander mothers like me, in whose rooms live children like Sam. No one likes to talk about cancer and kids or kids and cancer or all of the wretched and wonderful details of the lives of the families who are living as ours did and will. There are beacons of hope on the horizon of pediatric cancer care which require further development through research and trials. Sam felt it so important to have good games on hand so that in the brief moments that children feel good they will have the best games to choose from for play. We thank the many of you who have donated to Children's Hospital Teen Center on his behalf . In addition to this, I have to hope that many of us will find a way to support pediatric cancer research financially and these families emotionally and with hot fresh healthy meals or offers to do laundry or take siblings shoe shopping when they need it. A couple of years ago Julia and I baked cinnamon rolls and cookies for the families at the Ronald McDonald house and there were several weeks where Julia, Sam, and Jeffrey carried in trays of them on Sunday mornings. I was so afraid when we walked through those doors of intruding into a world that seemed so far away from anything I could understand. But it didn’t matter that we didn’t really get it. We trusted the young woman who had encouraged Julia to do this and we did it anyway. And now I know how much the appearance of people from outside that little world means to those of us in it. It is no small thing to feel noticed and cared for. I pray that children in the future will be cured by medicines which are gentle and work against cancer at the same time. I pray that families in the future will find many offers of support or warm meals that they can get nourishment from. I pray that somehow we will find a way to acknowledge the reality of pediatric cancer in a way which bolsters the resources available for research and practice.
My hope is that all who have shared our journey with us will hold Sam and our family in your hearts as you make your way forward, and that you should never experience such a week as this was for us. The quantity and quality of support we have received every day since Sam’s diagnosis is immeasurable. This past week has been a hum of hundreds of people in the house offering words of comfort and sweet memories of our boy, meals, and solace. It has been wonderful and exhausting all at once and we thank all of you from the bottom of our hearts. May we all find comfort and solace and see each other in the future on happy occasions.
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Dear Sam,
Love. My love. I have on my nightstand the last thing you created with your own hands. A little tiny toy lunar space ship that was inside the cereal box. You and Jeffrey built them together when you were home and feeling well before your transplant. You played space ship and pretended to attack the duck that you put together from the other box. You flew it around the house with a cracker jack grin on your face and except for the fact that you were over 5 feet tall and dripping with humor, you could have been four again with little Jeffrey toddling behind you, imitating your every move and revering you for the hero he saw you as. I laughed so hard and I remember your bright eyes as we looked at each other and you tried to keep a straight face while continuing to make space-ship noises to increase my laughter.
This week has been a week of hell but it does not deduct from the slice of heaven that mothering you was to me. On the day you were born I screamed you into this world from the depths of my soul. The noise that came out of my mouth as I pushed you out was something that I thought could never be recreated, it was so primal and forceful my throat felt scratchy for a week. And here I am again, having screamed you out of this world, I am left with that same scratchy throat. It is a physical proof for me of the intensity of our relationship. The vessel that held all that we know about who you are is left in the earth without you. I loved that body of yours. I loved your belly and your legs and the face you always made for me when I put your suntan lotion on. I will never forget how you felt in my arms as a baby, a toddler, a child, and I will never forget your generous embraces in your 12th year. I am sorry that your body could not keep up with you. Your daddy and I hold you here in our hearts. Julia and Jeffrey will keep you with them. One of our last extended conversations was about Rookie. How you looked forward to him sitting on you again when you got home. We are taking good care of each other and good care of your dog too. We are making choices each moment to stay on the path which brings us towards life and the living.
When you were born you made me a mother in a thousand new ways even though I was already one. And throughout your life you showed me the value of thoughtfulness and honesty between a parent and child. When you were eight years old we had the most beautiful talk in my room one night. We were speaking about emotional flooding and the hormones of anger and calm. I drew you a diagram on a yellow pad of paper. You learned so much about yourself that night and you were never the same person. You opened in a new way. And so did I. I am sorry you had to work so hard to become who you were but I am so grateful that you were up to the task and that something inside of me pushed me to have that discussion with you and so many more over the years. We have spoken over the past 8 months about all of the greatest stories of my life and yours. I thirsted to know you. Your thoughts, your desires, your opinions on the world around you. While other boys closed up when their mothers came into the room as is the natural teen thing to do, you opened up to me and let me in to see the corners of your mind and heart. I couldn’t wait for you to return to that space where your peers would receive your insights and your mother would watch from afar. But oh how I treasured being your confidant. I celebrated your future every day with you and saw only what you saw—health and long life, even as I came to accept recently that we might not make it there. I sought peace and comfort for you like an obsessed woman in your last weeks, convinced that if we could support you well enough you would come back to us. I had faith in G-d and faith in your ability to heal and take care of your body. You never let me down, you taught me a lot about what it means to work for something, endurance and honesty. Mostly you gave me a new understanding of what it means to love. I had always done it, I just came to define it more clearly through our experiences with each other, your sister and brother, and your father.
My love. How I’ve loved you. How I love you still. How I always will.
We sat in the synagogue for your funeral when we should have gathered together for your Bar Mitzvah with all those who would have come to celebrate with us. There have been dozens of people in our house every day since who have come to comfort us and share their stories of you. Daddy and I wish that you were here. The scene downstairs is just your favorite and I can see you sitting there in the middle of the pile of your friends. Your friends are so sad but I know that they will take you with them in their lives and remember you with a dull, foggy pain and true love. All of your flaws seem forgotten and daddy and I remind each other of them because they were a true part of who you were. We are hearing about all of the lessons people have learned through your illness and death and everything that is new in the world because of how you inspired them. It is a wretched cost but it is very real and we accept that so many people found a bit of you gave them something new to aim for.
Your little cousins are everywhere. I know that during your illness one of the huge things you missed was the hours you were used to spending with them and here they are, tackling us and hugging us and saying funny things or being so sweet. We love being Aunty and Uncle and a huge part of that was watching you interact with our nieces and nephews. Julia and Jeffrey are eating them up and we are too.
Sam. My sweet boy. A boy among boys, a man among men. I used to say if you looked up “boy” in the dictionary there would be a picture of you. You showed me how the world looked through your lens. And I tried very hard to capture it all. Every photo I took of you and your siblings I took with the awareness for the feelings of love or humor or pride I felt in that moment. And now when I look at pictures from our family’s life together I am filled with those feelings once again. You continue to bring me joy and I will never look at your image with anything but joy in my heart for the wonderful time we were having in that captured moment. I miss kissing your sweet cheeks with all my mushymommykisses. I have kissed your cheeks thousands of wonderful times and I feel all of those kisses on my lips still. Your dad, Julz and Jeffrey and I must straddle three worlds: our life with you, the time we spent with you during your illness, and our future without you. This is quite a task we face. Yet we are determined to build ourselves a future in the same way we built wonderful moments and a real life with you during your illness and long before.
Life is Real, Life is Earnest,
and the Grave is not the goal.
“Dust thou art, to dust returnest”
was not spoken of the soul.
Not enjoyment, and not sorrow,
Is our destined end or way ;
But to act, that each to-morrow
Find us farther than to-day.
That’s right, I am still getting insight and comfort from my old friend Longfellow who I’ve "entertained" (read: tortured) you with before. How he sees with clarity the detail of my struggle and helps me frame and understand it, just as he gave us lessons to talk about when we considered his take on life and struggle. And so we shall. Live and struggle. And enjoy and rejoice. And we will look to Psalms, prayer, family and friends (and Longfellow) for strength and comfort as we have throughout your illness. And we will find a way to feel joy without feeling we are betraying you because I trust that we are not here to live as broken people but instead we are here to meet the challenge of healing and living with you in our hearts and minds.
For eight long months we have grieved the potential loss we now face. We have grappled with the unthinkable and expressed our anger and terror at your disease and all it took from us. We juggled our lives with pleasure at the thought we would return once again to health and wholeness in our home. Even as your disease attempted to suck us dry, we have been filled to the brim with everything your illness gave us. This has been a surprise. Cancer took and took and took from us, but it also gave and gave and gave. Those blessings keep tumbling in and will bolster us in our sorrow and confusion. And I am betting on many many days where we just follow your example and put our noses to the ground and one foot in front of the other until we get to where we are supposed to be.
Sammy. My love. I trust that you are well and in the care of those we trust and know and love. I feel how you are free of pain and tension, desire and unmet needs. I see you blonde and smiling, sparkling eyes filled with laughter. I visualize you playing first base, or up to bat with daddy umping behind you. I see that look of determination and will. I remember you coming out of your corner to box and how you worked through that match and so many more you faced in life. I grieve for all of the kids you have stuck up for or invited in who lost their champion. I will miss seeing you work through tough times and I will especially miss the changes that would have come over you as you successfully navigated them and come out the other side. I am steeped in gratitude for seeing you face a very difficult personal challenge just before your diagnosis and how you found people and resources and inner strength to work your way through. I know what you were made of.
Sammy. My Sam. Soy de me Soy. You are of me and I of you, tangled forever together in the intimate dance of mother and child. I shall never extract myself and you will always be mine as are Julia and Jeffrey. The whole earth could crumble under my feet as it did this week a thousand times over and I will never let go. The strength of my mama love was not enough to keep you here but it is enough to hold you close and carry all that is contained within it forward. And I will live fully and thoughtfully, well and hard, present and grateful.
I close with the words I wrote hundreds of times on napkins I stuck into your (and your siblings!) lunch box, it was all I hoped for you to do each day and I used to imagine you reading them and then trying to do these things in the confines of a classroom and blended with learning and interacting with the teacher and other students. Somehow I know you were successful.
Sammy:
Take Chances, Make Mistakes, and Get Messy.
All of my love,
Mommy
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