I stopped writing months ago. We were home. We were always together. There wasn't a rotation of who was caring for Sam so there wasn't a rotation of the keyboard. I never stopped writing in my head, I just had enough strength to focus my attention on caring for Sam and the rest of the family. I knew Phyllis could say it for us all. I trusted her words to speak for me too. The weeks and months were challenging, all living in Milwaukee and all living at home. So many people made it possible to breathe.
Between the fluids and all the pills and the level of attention that was needed I wasn't sure I could keep it all straight (I am not a medical professional for some very strong reasons).
So I stopped writing. Time was incremental. The end of the day when all the kids were tucked in for a night was a time when the entire care team at home would just crumble onto the couch, watch a lot of television and pray that everyone slept well through the night. Sometimes our prayers were answered, sometimes not so much. I barely had strength to think let alone take a turn typing.
This is what I wrote Sunday night and wanted to say if I had stood up yesterday and spoke at Sam's funeral. I trusted Rabbi Lowenstein to say it all. I felt Phyllis and my kids needed me more.
For 18 months I feared that my hands were never clean enough to be near Sam, that my runny nose wasn't just allergies, but was something that would force me to stay away from my Sam for an unforgivable week or more. I feared every bath, that I hadn't prepared him well enough, that dirty water would reach his central or picc line and complicate matters beyond our control. I feared that his chemotherapy would kill him, taking out his heart, a kidney or his liver. When he was microwaved, like leftover mac-n-cheese, for three days in a row in preparation for his bone marrow transplant, I watched and dreaded the cataracts the radiation would have caused if he had reached sixteen. For 18 months I lived in fear that I would somehow contribute to the cause of Sam's death.
I breathe can breathe a lot easier now. I cry a lot, but I no longer fear that my care won't be enough. The worst has happened. Somehow beyond our wildest dreams we did everything right and yet Sam still died. And yet he is no longer in pain, he is no longer furious at the world and thinking that God hates him. He is gone, hopefully at peace, knowing how much we all loved him and will always love him.
I cry for all I miss. I cry for all Sam will miss. I cry for the loss my other children have suffered. I cry for the hole in my wife's spirit. I cry for the insanity, the injustice. I cry for all the things I can remember and all the things I can't remember. I laugh at who Sam used to be and the short films or pictures this friend or that friend bring to me and share with me. I laugh at private jokes David and I have been collecting for the last several months. I laugh when Solomon says something way above his pay grade and age and when Yael is being silly. I may not always have tears because often they are flowing on the inside.
Sam was an amazing child. He was the best baby in the world. So much so that Yael was born 16 months later so that someone could share in how amazing a baby Sam was. Sam's smile always lit up any room he was in. Sam's laughter was contagious and caught anyone present up in the fun he was having. Everyone who knew Sam loved Sam no matter whether he was having a good day or a bad day. Sam embodied love even if he hated being kissed all the time, hugged all the time or touched often. And yet the secret was if you let Sam approach you he was the most huggy, kissy, affectionate child around. He just wanted it all on his terms. The deeper secret is that Sam let me hug and kiss him whenever I wanted. I was his person. I spent six of his eight years staying home and taking care of him and then Yael and him together.
Of course during his terrible threes and furious fours we nearly killed each other. There were days I wasn't sure either of us would make it through them. But somehow no matter how much we yelled or fought, at the end of the day I wanted to convey to Sam how much I loved him and would always love him no matter what. I wanted each day to end with a moment of peace and an "I love you" on our lips. So at the end of each day I would lay in bed with Sam pressed tightly against me. I began making up stories without reading from books so that he could rest in my arms without them being occupied. I made up several songs with him as the central character in the song so that he could hear his name sang lovingly in my voice at the end of each day. We ended each day peacefully snuggled gently against each other so that he always knew I loved him. And when we finished I would always try to give him close to a hundred kisses on the top of his head so he knew I never really wanted to stop kissing him. My secret goal was to someday have planted ten thousands kisses on his little head.
For 18 months I only ever kissed Sam on his head fearful of what my germs would do to his compromised system. Even up to the end I would only plant kisses on his cute, little bald head when I put him to bed. He said to David last Wednesday or Thursday night: "David, Dad's kisses on a bald head are the best. You gotta try this sometime."
Sam was always an amazing kid. He hated being in the middle. His four-letter word was "fair" because life wasn't fair. But he was always an amazing kid who taught us something every day he was alive. He will be missed by everyone who knew him and even those who never got the chance. He was like a Sabra (Hebrew for Prickly Pear), warm soft love embodied in the center of the prickliest fruit.
I will miss hime forever. May his name always be a blessing.
HaMakom yinachem etchem.... Thinking of you from here in Israel.ReplyDelete
Beautiful Michael! You are always left knowing that you and your entire team around the world did everything possible. I can't even imagine how many prayers Hashem heard from everyone asking for Sam to get well. You couldn't have done anything better. Sam will live on strongly in all of our hearts forever.ReplyDelete
Sam's name will never be forgotten. With your help, he moved mountains in his short life. His was and always will be a blessing.ReplyDelete
You did an amazingly great job of taking care of Sam and making the life he had outstanding. Reading about Sam has been inspirational - his kindness, good nature, and love for others while facing the unfairness of cancer was remarkable. I'm so sorry that Sam is no longer here, but grateful he was with such a wonderful family. Everything you did for Sam made his life better and he was so lucky to have such a wonderful family. I want to thank you for taking the time to share Sam's life with us , you allowed his loving heart to reach out and touch so many others. We will never forget Superman Sam!ReplyDelete
Just from the photos on the blog, it's clear that Sam was a delightful kid. He will always have a special place in the hearts of all your readers. Hamakom yenachem etchem.ReplyDelete
So beautifully written. The love you and Phyllis gave Sam not only touched his life, but so many more of us. Thank you. Sending love and light to your whole family.ReplyDelete
Sending you and your family boundless love. BDE.ReplyDelete
Just beautifully written. Sending all of our love and support to everyone of you. He was an amazing boy.ReplyDelete
Your words....Michael, you and Phyllis are amazing parents. You made so many of Sam's wishes come true. They are memories that you and your family will cherish forever. We learned so much from you and Phyllis about childhood cancer, facts I think many of us did not know. Sammy's name will be on our lips from this day forward. His memory IS a blessing. ♥ReplyDelete
Michael and Phyllis, thank you for sharing the intimate details of your journey with Sam. He sounds like such an amazing boy. It is very apparent he deeply loved, and was deeply loved by, his family.ReplyDelete
I do not know you and your family, but I feel the loss you suffer now through your words and those of others. Many thoughts and hearts hold you and yours. Thank you for sharing your baby with us all.ReplyDelete
Wonderful, Beautiful, clearly written and expressed. I see why Phyllis chose you as her spouse. You see things in shades of each other, complementing each other. From strength you have strength. Your love is amazing,ReplyDelete
Amazing parents = amazing children. Superman Sam was amazing...a true-blue superhero. I will shower our eight year old son with extra, extra kisses and think of Sam. You remain in our hearts, thoughts and prayers. With much love from Boston. B'shalom.ReplyDelete
I'm not sure how I didn't know about this amazing boy, but after reading in the Chicago Tribune of his passing, I clicked on the link to your blog. With tears in my eyes I read the last few entries, and marveled at the courage of this young man. I was then compelled to go to the beginning and read every posting. I'm not finished reading, but each day I learn more and more about your wonderful son and your awesome family. Thank you for sharing this heartbreaking journey. May God give you peace as you reflect on Sam's life. I will be forever touched by his story. And each night as I put my 4-year-old son, Alexander to bed, I am giving him extra kisses now on his head... and thinking about Sam.ReplyDelete
Michael, I know Phyllis did most of the writing, and in so doing, she brought us close in to a story the rest of us could only, thank God, imagine. But I often wondered about you. I know as a Mom, I related to Phyllis, but as a parent, I sometimes wanted to hear your voice, and I imagined my husband's pain and agony as a father in this situation. thank you for writing this. I'm sorry you can breathe in this way again, sorry it took Sam's death for you to exhale. It's exhausting, holding your breath for so long. The cosmic exhale, the one that brings sobs and silence both...I really hope that all of us supporting and loving you makes it easier. Frankly, I can't imagine that it would, but I sure hope it does.ReplyDelete
I cry along with you and your family. Words can never articulate my feelings and thoughts. Thank you for sharing this with us...ReplyDelete
So touching. Thank you for your loving thoughts and eulogy for your remarkable young son. May his life be a blessed memory.ReplyDelete
Oh Michael. How lucky Sam was to have you, Phyllis David Yael Solly are to have you. How lucky we your virtual community are to have you to teach us, even from the depths of grief. Rabbi Lowenstein did indeed do a beautiful job yesterday speaking for your family. But these, YOUR words, teach us all how to be better parents, better people. Thank you for sharing. May the fabric of your family continue to be strengthened and be woven with stories anew, even as some of the colors are missing. -Max HandelmanReplyDelete
Dear Phyllis & Michael, I am absolutely heartbroken for you and your children and your entire family. The pain you have endured is unspeakable and unfair. I hope that all the people who love you will carry you and your family from this terribly sad time to whatever life will be without Sam.ReplyDelete
The world is so fortunate that the two of you are raising human beings and though Sam was unable to go on and make a life for himself, his life will continue to matter in so many ways because you were capable and generous enough to share his story. So few people have the courage and the ability to look at death straight in the eye the way the two of you have and your ability to articulate your ordeal with the kind of humility and honesty that you have is so very rare.
We will all love our children more and better because of Sam. We will all parent with the knowledge of what a privilege it is to do so because of Sam. We whisper shema to our children an extra time for Sam and for the family that loved him so well through so much.
I am deeply sorry for your pain and grateful for the gifts of your story and for the boy who inspired it. I hope that you will find comfort in the arms of the many people who love you and your family in the days to come.
With deepest sympathy and love,
Rabbi Laura Sheinkopf
Phyllis, Michael, and the entire Sommer family.....While I do not know your family, I was a congregant at Am Shalon for a couple of years and have followed your blog with complete awe at your incredible grace through the unthinkable. As someone who has dealt with and continues to deal with the illness of a loved one, I often found myself identifying with the stories shared......I want to personally thank you for teaching me (and I am sure many others) how to be a better parent.....never will I be too busy to play a game that the kids want to play, never will I be too tired to read them a book....I will be present for my children always and I will never take my time with them for granted....thank you and your son for reminding us of what is really important......please know that your son and your family's story have made a real difference.......please accept my family's condolences......we wish you peace and love........Aaron Brooks and family.....ReplyDelete
We must have been thousands from the four corners of the world that followed your beautiful and wise blog. Sometimes we were weeping, sometimes laughing and always in awe of Sam and his wonderful siblings. What a lesson you have taught us, we will never forget these deeply moving moments you shared with us. May you, Phyllis and Michael and your lovely children now find peace and strenght to move forward.ReplyDelete
Kristina D from Switzerland
A beautifully written tribute to a much loved child. Sending condolences from Croatia to you and your family. Sam is already a blessing and source of inspiration to all of us who mourn his loss with you.ReplyDelete
Michael, Phyllis and your entire family: Words cannot express my deep respect for you and your family. You have shared with us some of the most intimate details of your life without hesitation. It is clear to me that your desire was not only to support your family but also to help the rest of us in the world know how much you loved each other. Your story certainly helped me to realize how precious and important every detail is. Thank you for sharing your story. If there was any way I could help to relieve your pain, you know I would. Nonetheless, I pray for the peace of your family and for your entire family to surround each other with the love you share and bask in the many wonderful memories you have of SupermanSam. Zichrono Livracha...may his memory be for a blessing.ReplyDelete
Michael, thank you so much for sharing this ... I was always afraid of trying to come visit -- either I was sick, or one of the kids I taught on Sunday was sick, or someone at Hebrew school might have used my phone to call home when they had the sniffles, or ... or ... or. But I love you all, I pray for your daily, and I will never again look at a picture of a frog or a turtle or a lizard or a dragon -- especially a dragon -- that I won't think of Sam and smile, even if it's through tears. Forever and always, his memory will be a blessing.ReplyDelete
Beautiful. Just beautiful. May his memory always be a blessing, forever and ever.ReplyDelete
I wish I got to know you and your family through different circumstances.
It is no wonder you and your amazing wife are rabbis. You have inspired and uplifted so many through your beautiful words, your love, your children, and your daily life/actions. There is an aura of true good around you all.
There are no words that can bring any comfort. But something my grandfather said to me when I lost my beautiful mother (and he, his only daughter) at 50 to ovarian cancer made a true difference: "The living must go on living. Honor her life and her name with everything you do. MAKE her name a blessing."
May the Source of peace send peace to all who mourn and comfort to all who are bereaved
Oh, yes, a blessing forever! And I ask if, inspired by Sam, I can be a blessing to others, too. Maybe not by accident is your own name Micha-el, the great angel of God, "like God," filling Sam's life with God's own kisses.ReplyDelete
My heart still breaks across the miles. My prayers are with you and your family. Thank you for your words. Love, NealReplyDelete
Our hearts are all aching with yours.ReplyDelete
Sam lost his fight against cancer. His bravery and spirit won the hearts of people all over the world. His name is a blessing. His memory is a blessing.
Thank you for picking up the keyboard to share your thoughts. You and Phyllis and your care team and Sam are heroes to so many people beyond what you can imagine. His name and memory are blessings. I hope you can feel even a fraction of the love that surrounds you.ReplyDelete
May Sam's memories, memories of Sam be a blessing.
May your family be blessed with good health, smachot and continuing love.
This blog, the posts by you and Phyllis, not only served as an example of courage in the face of unspeakable challenge, but also to the potential for good in the world of social media. Although we have never met, I feel blessed to have been able to travel this path with you. Sam's memory, Sam's life, will always be a blessingReplyDelete
I believe with all my heart that your sweet son's name IS a blessing, and that the residue of his soul upon the hearts of you and his mother and siblings, and the many people he, you have all touched blesses us all too.ReplyDelete
I have never met you or your family yet my heart breaks for you. It is unthinkable all that you have been through. Your steadfast love and your stories about Sam are a blessing to all. Sam sounds like an amazing kid.ReplyDelete
Thank you, MIchael, for sharing these thoughts. What amazing parents you both have been to each of your children. Heartbroken for your loss - heart shrieking, as Julie Pelc Adler said. Just stood across from you during maariv just now, I hope you felt all the love and support flowing toward you from every direction.ReplyDelete
HaMakom ynachem etchem
I'm one of the thousands who has been reading this blog religiously. I don't know your family (we have common friends), but just like everyone else here, I wish I did. The honesty, openness, affection, humor, frustration that you have shared allowed for the creation, growth and continuation of Sammy's eternal community. This past Saturday, I did my daily check-in of Superman Sam's blog and let out a gasp. My sister who was right next to me asked "did he die?" She's never read this blog, she didn't even know I was checking your site. But I've shared the story and the amazingness that is your family and she just knew what the gasp meant. You all have touched and will continue to touch each and everyone who reads this blog. The impact will continue to spiral out of control (in a good way!). Parents will love more, people will be less inclined to take things for granted, trivial worries will seem less significant, people will tackle illness differently....all because you shared realness. Real love. Real worries. Real decisions. Real emotion. Real community. Thank you. Sammy sure did leave a lot of happy memories to look back on and I hope the laughter that you all were able to keep up over the last 18 months will continue to fill your home. Thinking of you all!ReplyDelete
I agree with Sam- life is not fair!!!! Thank you for sharing your amazing little boy with all of us! Sending love, hugs and prayers.ReplyDelete
You, Phyllis, and I were at HUC in Cincinnati together for a bit. I remember you as a smart couple in love. You both have shared Sam, and your other children, with us with such openness, grace, and light. Every time some one else discovers the magical and beautiful boy that was your Sammy, a part of him is created again. His memory will truly be a blessing. Superman is lucky to have him on his side. Sending peace and comfort, Rabbi Lauren CohnReplyDelete
So beautiful. So much love. What a wonderful blessing, to have so many kisses. How I wish you could still be kissing him now. Much love coming to you from another parent who has also lost a child to cancer, and who also wants to scream how unfair it is. Sam's memory will be a blessing to us all.ReplyDelete
About a year and s hslf ago I lost my 17 year old daughter. Msy you memories of Sam bring smiles to your soul. HaMakom inachem eschem.ReplyDelete
Thank you for your courage, for being such a loving parent, and for sharing Sam with us. Yours and Rabbi Phyllis' devotion has opened the eyes and hearts of the world.ReplyDelete
I am crying with you because Sam was right about Life not being fair. You and Phylls are so incredible; your strength and love has touched us all.ReplyDelete
Oh, Michael, I was so glad to see your post. I remember back in the days when we had your class and you caught us up on Sammy's exploits and how he was faring that week. We were all so full of hope. Because of you and Phyllis sharing Sam with us, we have had the honor of getting to know him and love him. I love that boy as if he were my own. I grieve for your anguish and pain but I know that Sammy will be with you forever. I feel that he'll be with me forever. Thank you, Michael. Thank you Phyllis. I pray that your darling children will bring you some solace.ReplyDelete
With much love,
Simply beautiful Michael.ReplyDelete
thank you for sharing your writtings with us. yhei zichro baruch. may hashem comfort you and your family amongst the mourners of jerusalem.ReplyDelete
Michael and Phyllis, Thank you for sharing your thoughts and deepest inner feelings. We are all forever changed by Sam, and your experience. I was a child who lost a parent. These things make no sense. Life is not fair. It was certainly was not fair to Sam, or your family. Your experience has given us something we would not have had, and someone to cherish we may not have known as well. There are no words, just questions. We have been brought closer together through your writings and I am grateful for that and to know you. Our hearts are with you.ReplyDelete
You are the most amazing family. I have read every single post on this blog. I am a funeral director and a widow...your words of love, hope, sorrow and grief are a gift to the world. PEACE to the Sommer Family.ReplyDelete
I am so touched by your posts. I do not know your family, but I cry and greive with you. I am currently a participant with Team in Training, I think of your sweet son every time I jump in the pool, pedal my bike and put my running shoes on. Please know that down here in Georgia Sam is remembered. May his memory be for a blessing.ReplyDelete
You don't know me either, but I feel the ache in your family's heart. I have had two immediate family members affected by leukemia. One is no longer with us, and my only sister continues to fight the long battle ahead of her. I too am a member of Team In Training and I will most certainly put Sam's Super Man strength in my legs and heart when I run mile upon mile. My thoughts and prayers are with you during this time! ((Hugs))ReplyDelete
You have moved me. My sons are 9 and 3 months. I cannot imagine. May God bless your family and Sam's soul and may you find peace in carrying on. God bless you.ReplyDelete
I have gotten to know your family and Sam for the past few months. I am grieving with you. What an amazing boy; he was lucky to have you as parents! I'm crying and crying. What a sweet and brave boy!ReplyDelete
I'm thinking about him all the time and hugging my kids tighter.
Because of Sam, I am donating more money to childhood cancer research. Sam has made difference for the future of childhood cancer research. I am so sorry for your tremendous loss. May your family be comforted among the morners of Zion.
So many beautiful comments that already say what is in my heart about Sam's battle with cancer, your family's struggles and loss, and your heartfelt and moving blog entries of the journey. I can't thank you and Phyllis enough for your bravery to share it all with so many strangers around the world who have adopted your entire family into their hearts and lives. We read your words, we absorb the emotions, we cry for your family, ourselves and a world which is lessened without Sam in it and celebrate the good work against childhood cancer that the fundraising efforts in memory and honor of Superman Sam will bring. Thank you.ReplyDelete
You probably don't remember me, but I will always remember your family. I saw you in the ER right before he was diagnosed. As soon as I walked into the room, I knew that Sam's symptoms were worrisome and I was amazed at how well you were handling everything! You were so good with him, so comforting and he was such a delightful little boy! I was very sad to hear of his diagnosis and even sadder to hear about everything else that you went through. I have seen many sick kids in my career, but your family really stood out for being so wondeful in spite of the cards that you were dealt. I wish you and your family all the very best and am thinking of you during this difficult time.ReplyDelete