Saturday, December 14, 2013

What I'm Missing

On Friday morning, Sam woke up with a headache and nausea. He was vomiting a little, and we weren't quite sure what the dark spots in his vomit were. But I had a terrible feeling.

We were scheduled for a trip to the clinic, and, frankly, we weren't ready to imagine what it would be like without that trip. Giving up that trip, to me, meant we were ready to admit how very close we were to the end. Giving up that trip wasn't really an option. Even Sam wanted to go.

So we made the drive. (It's an hour and 15 minutes.)

About 15 minutes out from the hospital, he started to vomit…it was dark and bloody.

He never really spoke to us again. 

The incredible sensitivity and efficiency of the clinic staff was remarkable. I felt as though we were the only patients in the place. Did anyone else get any attention at all yesterday? The care and love were palpable. They knew what this meant.

"Our goal today is to get you home."
Dr. M spoke those words and I nearly collapsed inside.
How would we manage this? What were we doing? How could it be?

But they were patient and kind. They were quiet and gentle. They spoke about comfort and care and how to make him feel no pain.

Sammy received platelets, a palliative measure. He received a fluid-reduction medicine to alleviate the pressure on his heart. A little oxygen. A little morphine. Some of our favorite hospital staff members stopped by, knocked quietly, and gave us hugs. They whispered their love to our sleeping boy.

An ambulance ride was arranged to bring us home. He was comfortable and peaceful on the ride. I can only imagine what a car trip would have been like. I am so grateful we were spared that fear and anxiety. I am truly grateful we made the trip on Friday. It allowed our beautiful team to help us give our son the most peaceful final hours we could arrange.

We arrived home in the late afternoon and began as many calm and quiet palliative measures as we could. A morphine drip. An oxygen tank. His most purposeful movement was to pull off the mask as soon as we put it on him. So we turned up the force and set it next to him. "Blow-by," they called it. A little comfort. He was breathing and resting easily.

The house filled up with family and loved ones. Sam slept quietly through it all.
Our kiddush wine was salty with tears.

The hour grew late…the house emptied out.

Around midnight, the last ones left. I took the first shift and sent Michael up to sleep.
I quietly sat down next to him and very very very softly sang his bedtime prayers.

Shelter us beneath thy wings….guard us from all harmful things.

He was always terribly impatient with me when I would cry during these prayers.
So I made sure not to cry.

Shema Yisrael Adonai Eloheinu Adonai Echad...

I whispered in his ear….I love you.

And then I settled down beside him on the couch, my hand on his back. Only a few minutes went by.

His breathing began to change. There were long pauses between the breaths. I caught myself holding my breath and the nurse and I exchanged a momentarily-frightened glance. We turned on the lights, we got Michael from upstairs.

We held our child close.

He took one final breath…

Sam was not alone for a single moment of his life.
He died peacefully and calmly and quietly at 12:33am.
He was not in fear or in pain.
And for that I am eternally grateful.

For the first 10,543 days of my life, I was not Sammy's mother.

And then I had 2,959 days of Sam.

Now I face thousands of days without him.

I once lived 10,543 days without him.

But I didn't know what I was missing.


(With gratitude to Martha Abelson for the beautiful photographs, 
taken just a few days after Sam's relapse.)

For sweet words and funeral information, see this post from our dear friend Rebecca.

218 comments:

  1. Baruch Dayan Ha'Emes. No other words.

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    1. came across this by chance on msn. Living in Israel I dont see news in the US too much. My heart breaks for you and your family
      Baruch dayan haemet.

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  2. My heart is broken for you. I will keep you all in my prayers and always remember seeing your beautiful boys smile and shine through photos. May his memory be a blessing.

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  3. Thank you, Phyllis, for sharing this last part of Sammy with all of us. Your generosity is & has been overwhelming. Samuel Asher, of all our blessed memories, will never be forgotten. He has changed lives. Sammy made a difference. I wish there was something to say that could bring you a moment of solace.........

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  4. Baruch dayan ha emet. May Sam's memory be a blessing and may you all be comforted amidst the mourners of Zion and Jerusalem.

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  5. We played Debbie's Shechina (sp?) for our daughter every night before bed until she was out of her crib...I'll never hear it the same way again. We'll think of Sam every time. Take comfort in knowing that the last thing he heard was your singing voice. Thank you for sharing your story.

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  6. I'm crying with you and your family. And I have nothing to say.

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  7. Baruch dayan ha emet. May Sam's memory be a blessing and may you all be comforted amidst the mourners of Zion and Jerusalem.
    If I could send hugs through the internet I would.

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  8. Baruch Dayan Ha'emet. May his memory be a blessing to you and your family. Sending thoughts and prayers your way. Thank you for sharing him with us. It sounds like he was very inspirational.

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  9. I'm so sorry. This world was lucky to have Sam in it and I know his story will not be forgotten.

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  10. המקום ינחם אתכם בתוך שאר אבלי ציון וירושלים

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  11. Our thoughts and prayers are with you. May his memories and spirit comfort you. Love, the Siegels

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  12. המקום ינחם אתכם בתוך שאר אבלי ציון וירושלים ולא תדעו צער ודאבה עוד לעולם

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  13. זכרונו לברכה. ברוך דין האמת
    Holding you all in my heart, prayers and tears. <3

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  14. There are no words. My thoughts are with you all. Thank you for sharing Sam with us.

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  15. baruch dayan ha emet.
    thank you for sharing sam with us.
    peace and love to you all.

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  16. Michael, Phyllis and the rest of the Sommer family. ..I can't stop my tears from falling..my heart is heavy and crushed...I'm praying that God comforts your hearts...I love you all..♥Ms.Moeneick♥ God Bless.

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  17. Prayers, love and condolences to your family. I cannot wrap my mind around this but can wrap my heart around you with love and say how very very sorry I am that Sammy lost his battle and the world just got a bit darker. May God Bless and give you the strength.

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  18. מן השמים תנחומו
    For me that means that not only will God try to comfort you from the heavens but that also Sam will try to comfort you from Heaven as well

    My heart is broken for you and your family.

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  19. Phyllis, I know all of us out here wish we could bring comfort to you, and Michael, and your beautiful family. Impossible, of course. Rebecca's post today addressed that so well. And yet here you are as always bringing comfort to us by sharing your words so generously--by sharing your story. I'm thinking about you constantly, my friend.

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  20. Phyllis, I do not know you personally, yet we do have friends in common. I have been following your story over the past months and my heart has rejoiced with all the highs and broken with all the lows. I can't fathom this journey you have all endured. but, as a woman, mother and distant "friend", I wish you strength and love to get through this difficult time. Sammy was so incredibly lucky to have you as his mom, and your whole family as his love and support. God speed to you all, may he truly now get to rest in peace.

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  21. Dear Phyllis and Michael - along with your entire rabbinic family Michele and I grieve with you all. May your memories of these 2959 days with Sam be filled with love, warmth and strength. Baruch Dayan HaEmet.

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  22. I am weeping. Sam's memory will be a blessing to you and your family forever.

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  23. Phyllis - I never met you or Sam, but yet I feel like I know you. I have been amazed all these months of your strength as you shared your family's roller coaster journey. I pray that the love of all your family and friends offers some comfort to you and the rest of the Sommer Family.

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  24. We have no words - only tears. You and your family remain in our hearts and prayers. Betsy, Bryan, Jordyn and Gillian

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  25. I am so glad I got to "know" Sam and you all through reading your blog. Thank you for sharing him with us. I wish I had words of comfort, but I am speechless. Love, hugs, and Peace.

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  26. My heart has been with you each and every day. I have read all of your posts and I marvel at your strength and courage. There is no way I can even compete with your poetic way with words but to say that Superman Sam is soaring through the skies continuing to be hero he has and always will be. He will continue to live on in our lives forever............He has left a legacy.......He will forever be remembered in our family ......."Mrs. M"

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  27. Baruch Dayan HaEmet. My heart is broken for your family. I am so so sorry, so sorry. I am comforted to know that he died peacefully, surrounded by his parents' love, and that you were able to pray with him and tell him you love him. Know that love is pouring your way from around the globe. I know that none of that replaces your superman, Sam. May his memory be a blessing. <3.

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    1. and I just want to add, that my heart breaks even more because I so relate to this: "Now I face thousands of days without him." That is the pain I feel for my Caleb. I don't know how it can be.

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  28. I have no words, just love for you and the entire family. Please know that a world of hearts are broken for Sammy's loss.

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  29. Baruch Dayan emet. I am so very sorry.

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  30. I am so sorry for your loss. I don't know the family personally, but I feel so connected to you. I have been following superman Sam's journey and prayed for miracles. Again, my condolences to you and your family.

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  31. Please accept our whole families deepest sympathies for the loss of your son Sam. Your collective strength and dedication to his life is an inspiration which will bring strength to other families in the future - strength very few people posses.

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  32. Baruch Dayan Ha Emet, may he who comforts the morners of zion comfort you & all your family and friends....there are no words .

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  33. I share in your tears and your sorrow. May his memory be a blessing

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  34. I cannot thank you enough for your generosity in sharing this with us through your unspeakable pain. May God comfort you and Michael, David, Yael and Solly. Sammy will always be in my heart. I share your sorrow. Much love to you.

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  35. if only we could take away pain and sadness by sharing it.

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  36. So beautifully said, as always. I am shedding a tear for your loss and pain. Z"l

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  37. My prayers and condolences to you and your family.

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  39. Baruch Dayan HaEmet. I am so sorry for your loss, and my heart is broken for you. I wish you and your family much peace and strength. May his memory be a blessing.

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  40. I am so sorry to read this. I have never posted but I have read and thought about you so much. You have touched my heart, both your writing and your beautiful boy. I will hug my children extra close. Thank you for sharing your heartbreaking journey. I wish you love and peace as you move on to the next phase of your journey as a family.

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  42. May his memory be a blessing to all who love him. Thank you for sharing a bit of his beauty

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  43. SupermanSam Silent speaks, at three or four o'clock in the morning when all sleep silent is worshiping G-D'S Majesty, ever asked why sleep is so comforting,like Sponge Bob comforters? When all creation is resting by the seventh day counting sheeps, sleep is by silent side in comfort they recite worships to G-D'S Majesty. Everything worships The L-RD'S Majesty day and night seven days without end, eight years old strong as steel now eternally brighter than gold Superman Sam sleeps in Majesty in G-D's arms, G-D sings "Superman Sam go to Sleep,when you wake majesty awaits amen amen I say I say Superman Sam in Majesty".

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  44. I was introduced to your blog about Sam through a friend on Facebook a few nights ago. I went back to the beginning and followed the rollercoaster of emotions your family has experienced. I still have more to read, which I will. Please know that I have had Sam and your family in my thoughts and prayers, and will continue to do so. Sam was a bright light that shined on our world, and will never be extinguished because you shared him selflessly with us. ~Cassandra~

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  45. Thank you for sharing Sam with us. May his memory be a blessing. He will live on with all he has touched so deeply. so much love to you, Michael.and your beautiful children.

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  46. I am so sorry for your loss.
    המקום ינחם אתכם בתוך שער אבלי ציון וירושלים

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  47. Hugs and prayers being sent to you at this time.

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  48. I am so sorry. I've been reading Sam's story for a few weeks, and this just breaks my heart. I will be keeping you in prayer, and thank you for sharing Sam with us.

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  49. Baruch Dayan Ha Emet. Sammy touched more people than you will ever know. I have been following his struggle and wish him loving peace. May He who comforts the mourners of Zion comfort you and your family. He taught all of us what is truly important in this life. LOVE. He united the fragmented Jewish Communities. May his memory be for a Blessing.

    Dennis Wasko - Evanston Orthodox Community

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  50. On June 24, 2012, you wrote that your lives would never be the same. So many people who know you only from the blog feel that our lives have also been changed through your sad and brave journey. Our hearts are with you - hamakom yenachem.

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  51. It sounds like, indeed, his time had arrived to leave us. Bless Sam and his gift to us. He will live on in your heart, and perhaps even in a small way, to a casual blog reader like me. I am taking a moment now to contemplate the blessing of my children.

    Bless you for sharing your journey and your heart with us.

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  52. I will never forget Sam. Prayers for you and your family.

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  53. Sammy will never be forgotten…he and your family have found a home in so many of our hearts. Sending your family so much love and support. Thank you for sharing, truly. Much love and gratitude and peace for you all, you are in my prayers.

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  54. אני משתתפת בצערכם על סאם..
    שלא תדעו עוד צער

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  56. I am heartbroken for you and your family. And amazed by the courage you have shown and the love you have given Sammy, your family, and all of us who have followed your words. Thank you for reminding us how precious every moment we have with our children is. May Hashem comfort you. And may Sammy's memory be for a blessing.

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  57. My love to you and to your family. We have said Mi Shebeirach for him at every service. He was a gift, even to people he never met. And you have given a gift to all of us in sharing this story of love. We will say Kaddish with you now. All my love.

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  58. It's been said that it takes a village to raise a child. Superman Sam had a global village and we all weep because we were not able to raise him beyond the very tender age of eight. There is no doubt that he would've continued to make all of you so very, very proud...as a son, brother, grandson, nephew, cousin, friend, and eventually a husband and father. This village surrounds you with love and continues to grieve with you and pray with you. May our prayers help share the unbearable sorrow and help comfort you in the days ahead. There are tears...so many tears. And love. Just so, so much love. May sweet Sam's memory be for a blessing. xoxoxo

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  59. boruch dayan haemet. I am so sorry for your loss of your precious son. hamakom yenachem etchem btoch shaar evlei tzion v'yerushalayim.

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  60. Thank you so much for sharing. You are in my prayers. שלא תדעו עוד צער.. מאד מאד עצוב!!!

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  61. Inna lillahi wa inna ilayhı rajioon (which means in Arabic: we belong to Allah and we return to Him, it is usually said after the death of a person, as a condolence to the family of the deceased and as a reminder to ourselves). I hope Allah gives you patience and has mercy on Sam. He will be in paradise, in the best place.

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  62. Thank you for sharing Sam, his story and your life through this horrible, horrible situation with all of us. I am forever changed. And forever grateful to you and your family for that gift you've all given to me. Prayers for many blessings and peace in the hard days to come.

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  63. From Japan, paper cranes to wish peace on Sam, and on you and your family. I have only recently come to your blog, but your story has touched me deeply. May his memory be for a blessing.

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  64. My heart breaks for you and your family. You are in my prayers

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  65. Thank you for sharing your Sam with all of us. I will simply never forget him. And I will never forget your generosity of words, allowing us all a glimpse into your painful journey. May his memory forever be a blessing.

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  66. I will always remember Sammy. May his memory be a blessing to you and your family.

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  67. Oh, Phyllis, Michael, I am so sorry. I am so impossibly sorry for what y'all have gone through, and for this unimaginable loss. I am holding you and your family in my prayers. I know that Sam's ascent to whatever comes after this life has been swift. May God shelter him, and y'all, beneath the wings of Shekhinah.

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  69. You don't know me, although we met briefly at a biennial years ago. I feel like I know you though,  because I read both your blogs, and because I am also a mom with a child who has cancer. I heard about Sam's passing yesterday morning shortly before Shabbat services at this year's biennial.   A few moments later I looked down and there by my feet was a "Superman Sam" ribbon just lying on the floor.  I picked it up and affixed it to my badge, just as I have added you and your whole family into my heart.  

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  70. So many prayers for you and your family.

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  71. I don't know you, but I have been following your family's story through your blog (lovingly shared by many mutual friends). I am so so sorry for your loss. I am sitting here, crying my eyes out. You are not alone. Sending my love.

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  72. Condolences to your entire family. I am so sorry for your loss.

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  73. Yit'gadal v'yit'kadash sh'mei raba. May his soul forever rest among those that loved him. Adonai echad.

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  74. Such love to you and yours, and sorrow for your loss. Peace for Sam -- always peace.

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  75. I am so very, very sorry, המקום ינחם אתכם בתוך שער אבלי ציון וירושלים

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  76. My heart is going out to you and my tears are joining yours. I too do not know you, but I have followed your blog and journey as a family. You are an amazing and loving family. I am a 69 year old cancer patient undergoing chemo, with a fulfilled life, and would have traded place in a heartbeat with Sammy. May you find comfort in the love that surrounds you.

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  77. thank you for sharing your heart, your son, your family's journey with such love and grace… may Sam's memory bless you all in unexpected moments, exactly when you need to feel his soul kissing you the most. Shalom, Salaam, Peace.

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  78. Baruch Dayan Ha'Emes. May his memory be a blessing. Thank you with sharing him with us.

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  79. Sam was so lucky to have such a wonderful family, you were so fortunate to have a sweet boy. I know his short life has taught you countless lessons. I hope your pain subsides a little with each passing day. I hold you all in my thoughts and prayers. My heart goes out to you as you mourn your baby boy.

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  80. I am so sorry for your loss - I do not know Sam or your family, but through another friend I was introduced to his story and I am overwhelmed with grief and sadness. I truly am amazed at how strong your family is and it's such a beautiful thing that you kept up this live journal of Sam's life and your families activities. God bless each and every one of you. Sam's memories will never fade. I continue to organize group dinners and fundraisers for our local Ronald McDonald House's in the Chicago area and this gives me such inspiration to continue in memory of Sam. The next event I will place a photo of Sam on the dinner table just like he would have been there with us. He is an amazing little guy! I am so blessed to have read and learned about him. THANK YOU!

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  81. Sam's memory will continue to be a blessing to so many. Zichrono lebracha. Everyone at Lutz holds all of you deep in our hearts and at the top of our prayers. Sam was such a special person from such an incredible family...surrounded by love and hope and meaning.. Thank you Sam, Phyllis, Michael, David, Yael and Solly for teaching us about love and devotion and how to live our lives to their fullest. Ha'makom yenahem etkhem betokh she'ar avelei Tziyon vi'Yerushalayim.

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  82. We learned of Superman Sam from our rabbi -- Rabbi Michael Latz. What an amazing boy -- and so lucky to have loving parents like you. I can't even imagine the depth of your loss. Our thoughts and prayers are with you.

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  83. We are sending love to you and your family and especially to Sam, whose brave life touched so many. We wish you peace and will always remember this strong and beautiful young man who we never knew and will never forget.

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  84. I was heartbroken to read the latest news about Superman Sam. I thank my daughter Judi for letting me know what a wonderful inspiration Sam has been for all children going through the agonies of illness. To all of you moms like Superman Sam's mom, Judi and my sister, I cry such tears in recognizing the incredible strength courage love,caring and humor you have shown. All of you mom's are truly what motherhood is about, but you have surpassed all standards. God be with you as you fight to keep your children well. Goodbye Superman Sam. We all love you so much😍 Grandma Joan.

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  85. Heart is broken, so so very sorry I am for your tremendous loss.

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  86. I don't believe that there is another parent on the face of this earth who wouldn't be in tears reading this. I am so so very sorry for your loss. My heart is breaking for your family. You have done such a beautiful job of chronicling Sam's journey. He will be remembered by so many many people who didn't even have the gift of meeting him.

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  87. I am so sorry for your loss. I have been following your journey almost since the beginning (and read Ima on the Bima before that). This is not how I or anyone wanted this journey to end. מן השמים תנוחמו.

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  88. I'm so sorry. I have no other words.

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  89. broken hearts, tears, unfathomable
    Sending love to wrap around all of you

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  90. I am so terribly sorry for your heartbreaking loss.

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  91. just love from our family to yours

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  92. I'm so sorry. My heart breaks for you.

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  93. Praying for you and your family... and your angel may you all find peace and love in the midst of this... God Bless you all.

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  94. My heart goes out to you both on the loss of your wonderful Superman Son. I am envious that you were with him at the end. My dear departed Rabbi/Cantor Sam and I lost our Ari in 1968, suddenly in an accident and buried him Erev Yom Kippur. Sam died almost exactly 10 years later, again I was not able to say goodbye.

    May your Sam's memories sustain you in your grief, he was a hero.
    Thank you, also for sharing. My most sincere condolence and love from me to you and your family.

    Dale Berman, Ocala FL

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  95. Baruch Dayan HaEmet...Ha'makom yenahem etkhem betokh she'ar avelei Tziyon vi'Yerushalayim. Warm and happy memories will bring you comfort and Sam's memory will be for a blessing forever thanks to you and your family and the strength you showed in sharing your story.

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  96. המקום ינחם אתכם בתוך שאר אבלי ציון וירושלים

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  97. I've been thinking about Superman Sam non-stop, as if I was a close friend, since I was introduced to your blog, and yet I don't even know you... My heart is truly broken for you and your family and I've shed many tears for all of you and sent many prayers your way. Saying, I'm sorry for your loss, just doesn't seem to have enough meaning behind it...
    I will continue to send prayers, and positive healing energy your way to help you through this tragic time. Life will never be the same and Sam will always be missed and never forgotten. Soon you will start to see his spirit appear in your everyday lives-he will always be with you.
    Thank you so much for sharing his story.

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  98. HaMakom yenachem, May G-d give you comfort.
    You did everything possible with love and devotion. May that love last forever.

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  99. What a gift you all gave Sammy, being able to pass away quietly, peacefully at home. I don't think it's a coincidence that his soul waited to hear the Shema before departing this Earth. He knew he was loved until the very last moments of his life here, and his soul carries that knowledge with it.

    His memory is already a blessing, not just for those who followed his story, but for all the tzedakah for cancer research being raised in his name.

    HaMakom yenachem. I am so very sorry.

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  100. I don't know your family and I only heard a little of Sam's story. But your latest post had me in tears before I could get through the first little bit of it. Thinking of your family in this hard time and praying you find comfort. You had him for a short 2,959 days but he will live in your heart the rest of your days.

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  101. This is so wrong. I am so sorry. His memory is now and will always be a blessing.

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  102. I never met your wonderful son Sam but I feel as if I knew him. What an inspiration for us all. I am so sorry for your loss....my heart is heavy.

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  103. You have recorded this moment, when the world stops, so utterly in exact detail. YES, that momentarily frightened exchange of glances, when you wonder, "Is this what we've been waiting for? Watching for?" My heart goes out to you, and I am so happy he passed to the next life, while in your arms. what a treasure, though the cost is dear. We lost our mother, in much the same way... the morphine... the labored breathing... giving way, surrendering to the last two long pauses, and then gone. I am so very sorry, this loss is beyond human words. I am so sorry.

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  104. I do not know you, but I wanted to share this verse with you.
    For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.” (Zephaniah 3:17 NLT)

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  105. wow I am so touched by your words and grace in the very toughest of times. thank you for still sharing through such a tough time. It is beautiful.

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  106. Prayers, love, condolences. Nothing anyone says will change this except - there are angels among us and often, if we believe, we can hear the flutter of their wings as they hover, waiting for us to speak. They will hold us when we need and strengthen us....and guide us all - God speed such a beautiful boy.

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  107. I am sad and sorry for your loss. I will be remembering your family in prayers. Thank you for sharing your journey and faith. We know your superman Sam is in the presence of the most high God and is with Jesus celebrating. I pray for your peace and comfort. You have been and are an inspiration to many. God bless you all with peace.

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  108. Baruch Dayan Ha'Emet. May he shelter in the shadow of G-d's wings. My love, deepest condolences, thoughts and prayers are with all of you and all who loved and now mourn Sam. xx

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  109. There are many of us here who don't know you personally and have never had the chance to meet Sammy. And yet we feel as though we know you and your family and we are grieving with you now. We may not be there in Chicago in person for tomorrow's funeral, but we will be there in spirit, sending our love. Baruch Dayan HaRmet.

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  110. I only had a few weeks with Sam, and at a distance, but now it's OK for all of us to cry. I will miss him so much; and I can only thank you for sharing him with us from moment to moment. Anything else you are able to say, I will treat it with the same reverence as those words from the Scriptures! If you find more solace in silence, I will "hear" that, too.

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  111. You don't know me, but I am an Orthodox Christian from Seattle. When a beloved one passes, we say "May their memory be eternal." It's the equivalent of "May God remember you like Noah." Memory eternal, dear Sam, and may God hold you all in the palm of His hand.

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  112. התפילות שלי איתך ועם משפחתך.

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  113. I only learned about Sam and your family this week, after seeing a Today show write-up on their website. I am truly sorry for your loss. There is nothing I, or any other stranger, can say, except: May his memory be a blessing to you. Baruch Dayan Ha Emet.

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  115. Phyllis, I am so sorry. I hope if there is ever anything I can do for you, that you will reach out to me. I know miles and years have separated us, but you and your family are in my heart.

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  116. How beautifully and gracefully you have shared Sam's life through your pain. I wish I had some words of comfort to add, other than saying that my heart and prayers go out to you.

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  117. Baruch Dayan HaEmet. I am so, so, so very sorry for your loss. May you be comforted among the mourners of Zion and Jerusalem, and may your Superman Sam's memory be only for a blessing. Sending you love, light, and peace.

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  118. I do not know you- but I hope you know that Sam and your family are loved and lifted up in prayer. You are and will always be in my heart and in my prayers. You're son- and you- are amazing beautiful souls.

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  119. Well, one thing is for sure. Young Sam lived an extraordinary life, if only for the deep, saturating devotion his parents had for him. Not all children enjoy that kind of bond. As a stranger to you I'm left with questions like "WHY!!??" - questions you have gracefully put on the back burner while Sammy eased his way out of your world. As you revisit them, let one answer be "Don't ask why - just know how your unending love enriched him while he was here."

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  120. You are so brave. So full of love and kindness. Your Son knew this. And for that your should be proud.
    My heart aches for you, although this post is honestly the first I've read of your journey. It stirs up sorrowful memories of the loss of my Son..and I honestly wish I could carry the weigh of this loss for you..as I'd never wish it upon anyone.
    Continue to allow joy and love to surround you. Be patient. Breathe. There is no right way to handle the new path that lies ahead of you.
    You and your family with be in my family's prayers. Bless you.

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  121. I have not read your full stoy as I am at work and learned about Sam through the Denver Post and went to your blog. Your post brought me to tears, and it makes me feel so small inside to ever want for anything again when there are families going through such unimaginable grief. It sounds ridiculous to say that you and your family are in my thoughts, even though you are- it's really just a lack of words I can express to you right now. My children and I will be doing something to send to the Childrens Hospital of Wisconsin, Superman themed to honor Sam.

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  122. I am so very sorry, and filled with much sadness. Words are so inadequate...

    Baruch Dayan Ha Emet.

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  123. I continue to cry many tears. This story that you have shared has touched so many so deeply. Sam was so lucky to be loved in such am awesome and true way by you. And he knew this. And he left this world, far too young, but in peace and not in pain and with a last touch and whisper of "I love you" from his wonderful loving mother.

    I truly hope that this will not be your last blog post. I really hope that we - all of these people who have followed you on this sad journey - will get to hear more from you in the not-too-distant future...I want to hear that you and your family soon experience moments - and then days - filled with joy and light; that you and your children are able to smile and laugh and enjoy life, even without the bright light of "Sam" physically present in it.
    His spirit lives on and on.
    May his memory be only a blessing. A blessing that leads to a cure for this horrible disease.
    hugs and peace and love.

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    1. My words were poorly chosen. I'm sorry. What I intended to say was:
      "I hope one day, whenever and if ever you are ready, you will continue to share with us."
      Your family is loved by so many.
      Baruch Dayan Ha Emet.

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    2. Gayle I apologize if my comment below added any further distress to your heart on this sad day. Perhaps I myself should have chosen my words differently. I am thankful for your comment in that it brought to light in my own mind something I felt was important to share. <3.

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  125. Psalm 23

    A psalm of David.

    1 The Lord is my shepherd, I lack nothing.
    2 He makes me lie down in green pastures,
    he leads me beside quiet waters,
    3 he refreshes my soul.
    He guides me along the right paths
    for his name’s sake.
    4 Even though I walk
    through the darkest valley,
    I will fear no evil,
    for you are with me;
    your rod and your staff,
    they comfort me.
    5 You prepare a table before me
    in the presence of my enemies.
    You anoint my head with oil;
    my cup overflows.
    6 Surely your goodness and love will follow me
    all the days of my life,
    and I will dwell in the house of the Lord
    forever.

    I am so sorry for your loss - my mom (Fran Kapp) spoke frequently about Sam and how much you and Michael love him. I pray you are both comforted in your sorrow.

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  126. I can only hope that the love and support of your family and friends (and followers) from around the world can bring you some comfort. Baruch Dayan Ha'Emet.

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  127. Baruch Dayan HaEmet. My heart is so heavy with your loss.

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  128. I am so sorry that you are suffering the pain that every parent fears. My heart is full of love and eyes full of tears for you and yours. I rest knowing that there is another guardian angel in heaven and hope that with every sunrise and sunset that the light of Sam's smile shines down from heaven.

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  129. I am one of the many people sending you love and keeping you and your family in my prayers.

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  130. May his memory be a blessing. Vai com Deus Sam (Go with God).

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  131. Dear Phyllis, I am heartbroken for your family and continue to shed tears of true sadness. Thank you for allowing me in to your life during the hardest and most painful times. Sam will be remembered as a true hero. May his memory be for a blessing. Sending love.

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  132. Thank you so much for your beautiful words, both Phyllis and Michael, sharing Sam and your family with us. You have been so eloquent and open, we feel that we know you, Sam and your family. I am so sad to read of Sam's death, your words were so eloquent describing his last day with you. Following Sam's blog has been a blessing in my life, and I wish you all peace. You have been extraordinary parents and caregivers and I know Hashem will give you the strength to continue and to help your family heal. I will be thinking of you during the memorial service and funeral and say Kaddish for Sam. Your family will be in my prayers.

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  133. I just wanted to add my voice to the scores of others who have read this via someone they know (Leah Caruso in my case). You are so not alone in your mourning, and it has been a privilege to follow Superman Sam's journey. Thank you for sharing with us, and even though I don't know you personally, I send you much love from Ohio. <3

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  134. I have thought of you all day today and pray for peace for your family.

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  135. What a brave young man Superman Sam was. Thank you for sharing your blog, there are no words of comfort when you lose a child. May your family find your way through this with God.

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  136. Baruch Dayan HaEmet

    We do not know each other, but a rabbi has followed your family's story and shared this link with his congregants. Wishing you peace. - Meghan

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  137. I'm so very sorry. Sending love to your family.

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  138. Forgive me for the multiple comments. One of the other comments posted made me realize I wanted/needed to add this....

    Your posts here, chronicling Sam's journey and that of the whole family, have brought the light of Sam to many and have given many an avenue through which to support you with love, prayers, and simply bearing witness; this blog can continue to be a source of expression and support as you as a family make your way forward. Yes, of course there will be moments of joy and all will be blessed to share those with you - but that is not something we ask or expect of you now or under any particular timeline. Know that this blog can also be a place to continue to share your experience of the pain, of the thoughts and feelings and experiences you have as you move through shiva, shloshim, and on and on, as much as you need/want it to be. As I used to update the world on my son Caleb, I find it continues to be helpful - to me and to those who want to support me - to write and to share my thoughts and my pain and my process as I walk through this world without him by my side.

    My thoughts will be with you tomorrow as you bury your sweet Sam. Much love to you.

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  139. We are all of us, crying along with you, and also buoyed by your beautiful words. Much love from NYC

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  140. Praying for you and your family.

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  141. I'm so very sorry for your loss, My heart goes out to your family. May his memory be for a blessing.

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  142. Sad to hear about your loss. I pray for peace in your families heart during these days with out Sam.

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  143. Memory eternal. Memory eternal. Memory eternal!

    May his memory be eternal....

    Thank you for having the strength and courage to share this with us. So many prayers have lifted up for you. Love surrounds you. I will remember Samuel Asher when I pray for the departed, and I will pray for your family when I pray for those who still walk this earth in love and strength.

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  144. ברוך דיין אמת.
    המקום ינחם אתכם....
    I happened to stumble across your family's story several hours ago, and am deeply moved by your pain and strength... Like so many others, I too am profoundly grateful to you for granting me the opportunity to (perhaps) carry a tiny part of the immense pain you are experiencing.
    The journey you and your family travelled with Sam has touched so many people. The way in which you, as indivduals and collectively, rode the ups and downs of the emotional rollercoast your lives resembled, and especially the manner in which you faced the terrible end, is truly an inspiration. Perhaps there will come a time when thinking about how many of us were affected by the story you so generously shared, will give you some comfort.

    We carry you in our hearts

    With much love

    A father and his girls

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  145. I would like to offer my sincere condolensces. I am a complete stranger from europe and I stumbled across your story by chance and was deeply touched.

    May his soul be blessed, and May the good God give you and your family patience and strength to deal with your loss. My heart goes out to you and you will be in my prayer.

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  146. I am so very sorry. Our thoughts and prayers are with you.

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  147. Wishing your family the abundance of God's love during your time of loss...may your angel in heaven always be with you within your hearts and souls...

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  148. Your dear friend said it best, Sam is not in a better place because how could there be any place better than in his parents’ embrace? Your sweet family is a magnificent work of art of the heart. May your abundant love and loving get each of you through this new life without the beloved Superman Samxoxoxofrom Maine

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  149. The courage and strength of your family is beyond anything I've ever seen. There are no words for this. I am truly sorry. My daughter goes to Northwood with your son. We talked about Sam this morning. Her heart was broken for Sam and his brother and my heart was suddenly broken for her too! The look on her face was something I've never seen. Sympathy? Fear? Your openness has made this easier to talk about with the kids and that's amazing. You have all touched so many people and I hope you will find some peace with this though I can imagine it will be a long time.

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  150. I know that I don't know your family but I came across your blog I think because someone mentioned it on Facebook. My heart breaks for you and for Sam. I simply cannot stop thinking about everything. Please know that there are so many people supporting you and sending prayers.

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  151. "So it makes the pain even worse to learn of Phyllis Sommer’s loss of Superman Sam. Of the world‘s loss of Superman Sam. Phyllis, you have shared your life with us on line, and you have shared your families struggle and pain. And now we share your pain, too. Phyllis and I have never met, nor do we have that much in common. But through her blog her heartache hurts me too; her Sam has touched my heart, her loss is shared, and her tears are mine." - www.ima2seven.com....

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  152. You write so poetically at a time when you can only be feeling acute choking loss. This American family is crying for you tonight in Thailand.

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  153. My heart breaks as i read your blog, but i am amazed at how strong you are. I thank God that you had the time with your son, knowing that he is no longer in pain should carry you through the rest of your life. You will always be Sammy's mom. Peace.

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  154. I'm so sorry for your loss. I've read several of your posts, crying the whole way through. God bless you and your family. Thank you for sharing Superman Sam with us.

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  155. I've been reading your blog (the other one) since before Sam got sick, and when he got sick I began to read this one faithfully. I never knew what to say; I didn't know if it would help to hear from yet another stranger, given that you already knew that strangers all over the world were reading and thinking of you. I'm not Jewish or American, but I'm a mother and my heart has been breaking slowly all these months. You are such a beautiful and amazing family; you and Sam truly deserved each other, but none of you deserved this huge loss. Today I put my name on my national bone marrow registry, and I plan to make a yearly donation to childhood cancer research. Though I never knew him in life, Sam will be with me for the rest of my days. His light was so bright I could feel it halfway across the world and through this imperfect medium. I'll never forget your sweet boy.

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  156. You are all my hero's. I cannot imagine what you went through. God Bless.

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  157. My heart goes out to your and your family. May his memory be for a blessing...

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  158. He will never be forgotten. You are all in our hearts and prayers. May Grace hold you up at this heartbreaking time. I'm glad the end was peaceful and pain free--may it be that was for us all.

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  159. Condolences to the family. Sammie has surely earned his wings in Heaven as have you. He will be forever young in our hearts.

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  160. So very sorry to read this. I was shocked and saddened to see this post. So glad your little boy had a loving, supportive family around him until the end.

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  163. My heart is with you today as you prepare to bury your beloved Sammy. I can see how this writing has carried you through this time, and thank you for all the strength that you mustered to write what has been in your heart. May this gift and so may more blessings now give you comfort in your family's darkest hour. May G-d give you and Michael the courage to be clear in what you all need at this time. I wish I could have known Sammy, but I feel that have been given that opportunity through all your words.
    Thank you for that, Phyllis & Michael. You have given a whole scaffolding of support to the many parents and children who have or will experience the loss of a child including your own children. May that knowledge steer through to a path of comfort.
    with a heavy heart, Jan Mahler

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  164. Sam's story has touched me so deeply. I am so sorry for your loss and my prayers are with you and your family. You've gained such an amazing angel.

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  165. this little boy has touched people on every continent ...through the Web his smile will remain eternal ... May HaMakom---- who fills every place, even the Shvurei Lev , the broken hearts, grant you peace ... his memory will never fade, here's hoping the pain will...

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  166. Prayers are with you all at this most difficult hour. Thank you for your eloquence in sharing your experiences and emotions throughout this unthinkable ordeal. May you find comfort and peace in the sharing of your grief and pain.

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  167. I know there are no words right now, I am so sorry for your loss, it is a heartbreaking loss..I lost my little boy after 3.5 months with me...but please remember, this you will always be Sammy's Mom...Blessings to you all!

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  168. I send my heartfelt sympathy for your tremendous loss. I came across your blog post this morning here in Croatia where I currently live. I read with a tight throat and streaming eyes. What a lovely young boy he was. I pray that faith, family and friends will comfort you as you mourn and that in time you will smile as you remember Samuel.

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  169. Your sweet boy will never be forgotten by so many people around the world. I send you love and peace- both terribly inadequate right now, I know.

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  170. This touched my life, I have a niece with pediatric cancer, thanks for this story

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  171. Thinking of you all today as I have been for days upon weeks upon months. I will continue to pray.

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  172. We are so, so broken. Thank you for sharing your Superman with us. We are holding you all in our hearts. Zichrono L'vracha.

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  173. How courageous of you to share Sam's story and your innermost thoughts. There are no words of comfort...just knowing you have spurred purposeful action will, I pray, be of some help.

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  174. My mom took the photos, and I'm glad that she did. It made our family share a little bit of Sammy, that I know that you all miss so much. I never met Sam, but I'm sure that we would have been buddies. I really am sorry for your loss.

    -Lizzie A.

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  175. I am a colleague in Pennsylvania. I have two grandchildren, 7 and 8. My heart is breaking for you, and in awe at your strength, your truth, your willingness to show your pain. I have no words, none that would do justice to you or your precious Sam.

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  176. Like many, we do not know each other. But, we do have many friends in common some of which include my extended family members. Your son sounds like an amazing young man whose memory will live on strong indefinitely. Like you, I am a mother and I am so very heart achingly sorry for your loss. There are no words. I pray for the continued strength, courage and love that you and your family have and continue to express in your eloquent words that you have shared with all of us. My thoughts and prayers are with you and your family.

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  177. I am a mother of three young children and for that I am so grateful everyday. I wish I could take your pain away. You are an incredibly strong woman and Sam was the luckiest boy in the world to have you as his mom. My 9 year old son lost a friend August 21, 2013 to lukemia. It was an absolutely horrible 8 year battle. You show incredible strength and you are a wonderful person. Sam was and is absolutely adorable. You now have the best angel EVER looking out for you. God Bless you and your family at this most difficult time in you life.

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  178. I was introduced to your blog by a friend. Thank you for sharing Sam with us. You and your family are in our hearts and in our thoughts.

    "Say not in grief 'he is no more' but in thankfulness that he was..."

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  179. Sending peace , love and strength from Boston. There are no right words- may his memory be eternal.
    Fly high Superman Sam

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  180. Unspeakably sad and heartbroken at the death of your wondeful little Sam.
    Hamakom y'nacheim, may the Eternal One walk with you through this valley of the the shadow of death.
    Josee

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  181. I too have followed your blog although we have not ever met. My heart goes out to you and your family. But I also want to add that my true admiration goes out to Sammy, who handled this awful illness and finality wiht the utmost of bravery and grace. How many of us even those of much much older could do the same? This says so much for his caring family. Sammy really was the "real superman" .

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  182. I only had the chance to follow your journey through Sam's illness for a couple of months, but it through those couple of months Sam captured a special place in my heart. He will always hold that spot. When i.heard of his deatj my heart was shattered. Sam was an incrediable 8 yr old who's legagcy will not be forgotten. I wish peace, strength, and love in the coming days and years.

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  183. I'm awestruck at the global reach that Superman Sam and this blog achieved. His life has captivated so many. I heard about Sam from Rabbi Jason in Tampa, as he shared Sam's story in our school's newsletter. While nothing will erase the pain your family is feeling, I truly hope that the love, support, empathy, and warm wishes surrounding your family from all over the world will bring you some measure of comfort. Sam will never be forgotten: his memory will live on for thousands around the world.

    Baruch Dayan Ha'Emet. May Sam's memory be for a blessing, and may you all be comforted among the mourners of Zion and Jerusalem.

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  184. Like many, I was led to your blog long ago, although we haven't met. I have checked it every day since then and I am crushed by his death. I was still hoping that somehow a miracle would happen. I know you have an amazing support network, but I am amazed by your strength and honesty in your writing. I signed up on the bone marrow donor registry many years ago and always wondered if I would have the strength to donate if I was called. After reading about Sam, I now know that I will not hesitate. I will do it with the hope that it could help someone like Sam. I don't know what else to say except I am sad with you.

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  185. I'm so incredibly sorry for your loss. I hope the the words, thoughts and prayers of so many bring you some comfort and strength. Thank you for sharing Sammy and his story with the world. May his memory be a blessing.

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