Wednesday, December 11, 2013

How Are You

I get this question a lot.

How are you?

How can I be?
How should I be?
How do I answer?

It isn't that I want people to stop asking. I'm not telling people to go away. 

I just don't know how to answer this question. It is impossible. 

I am breathtakingly, heartbreakingly sad. I'm not even that angry right now...I'm simply sad. Desperately sad. 

I'm watching my son fade away. 
He's sleeping a lot. 
He can barely walk to the bathroom or upstairs. He hardly leaves the couch. He mostly rests his head on the pillow. He eats just a few bites at a time. 
He had some plans. He had ideas. Things he's come up with since he learned he is going to die.

He wants to record himself reading a book for Solly. 
He wants to design a t-shirt ("and make lots of money for tzedakah, mom, just like you!")
He wants to "write little notes and leave them all over the house for David and Yael and Solly to find. They will say things like 'I love you' and 'I miss you'."
He wants to write a book. 

Today he had a few moments of awakeful time and it was quiet in the house. I reminded him of this list. I offered to help with any of those items. Or none of them. 

He told me that he still wants to do those things. "But now I'm going to sleep, I'm so tired." 

We all leave behind a list of unfinished things. Books unread. Movies not seen. Tasks we haven't accomplished. Goals not met. Even a long and fully lived life is mourned as it comes to an end. 

But this? I can't even begin to enumerate what isn't done. I don't know how.

Tonight at bedtime he told me that he still wants to talk about the notes. He wants me to hide them around the house since he can't get around so well. "Let's talk about it in the afternoon, maybe I'll be more awake," he said.

But even with all of this…he is pulling away. He doesn't want to be around anyone. He's not really chatting, he doesn't like a lot of noise or a big crowd. Our normally busy and full house is almost too much for him. I'd like to imagine sweet long talks between Sam and his siblings but the truth is that he is pulling away from them, retreating into himself…so "normal" but so horribly, terribly, gut-wrenchingly painful to be a part of.

How am I?
I just don't know.

Today Sam had a playmate. Sam watched his friend play for a bit, there was a little talking, and then they sat together and watched a movie. They both loved it.
I keep scrolling back through old pictures. This is from June of 2009…4 year old Sammy.

84 comments:

  1. I guess the answer is that you're "saying goodbye."
    Sad and disappointed. Enjoy every second.

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  2. Dear Phyllis, I have been a reader of your "Ima on the Bima" blog for many years. We have many mutual friends and colleagues but we've not met. I have never commented on Sam's blog, but I have been reading it off and on over the past two years--reading more closely as of late. I can't sit anymore without commenting. May G-d grant you lots of strength and comfort as you navigate this difficult time. Though many of us are only part of your virtual community, we're still walking with you through this. You and your family are demonstrating amazing strength, vulnerability, and wisdom through your sharing of your story. I can't even imagine what this must be like as a mother to go through this, and I sense that your story will light the way for others somehow. Even in this darkest place, there is a tiny light that seems to be glowing. I am sending many prayers for all of you.

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  3. I don't have any good advice, or anything wise to say. I just want you to know that I'm thinking of you.

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  4. Oh sweetheart. No words, just tears, and much, much love to all of you.

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  5. I read about your story on Today.com. I can't imagine your heartbreak. I lost my younger brother in a car accident at 18. I still hear my parents weeping now 19 years later. All I can say is give yourself time to enjoy each moment with your son. These moments never leave you. Kramar från Sverige. Hugs from Sweden.

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  6. Sending love as always to all of you.

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  7. I've got nothing. My heart breaks for all of you. There are no right answers, no right ways to get through this. This I know: Sam is well loved. So, so well-loved and cared for both in real life and virtually. Blessings, hugs and prayers to you all.

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  8. Sam's story breaks my heart. The way you capture it all with words brings me to tears each time I read what you've written. There is such beauty in your turns of phrase...that unfortunately are being used to describe your family's wrenching pain.

    May Hashem give you all strength...and may you continue to feel the warm embrace of your family, friends, community and worldwide virtual community.

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  9. this is sam, always thinking of the next person.my heart is crying with you to read such love and giving. much love and warmth.

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  10. I don't think you have to know. I'm so sad for you, with you. Thinking of you often.

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  11. How you are is incredibly insightful. About Sam and what he needs. About how you 'are' one moment, and how drastically that can change the next. Prayers, hugs, love.

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  12. Sending you virtual hugs and love.

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  13. My heart is with you as y'all navigate these terrible waters.

    Four year old Sammy --! Oh, goodness. My own son (only child) is four now. I can see my son in that picture of Sam at four.

    I love that he wants to leave love notes. I hate that he's pulling away. And I hate that you have to endure this.

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  14. You and your family are strength and light. You bring peace and immeasurable love. I hope you feel the same outpouring of strength, love and peace from you family, friends and unknown allies like myself.

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  15. My wife died of breast cancer at 39. As she was fading away, mostly delirious, there was one evening when she came back to herself, talked to me and ate a bit. It was one of the happiest moments in my life. Later, I read that this is common with people who are dying. I hope that you get to experience the same thing with Sam, that he will come back to you for a little while. It's heartbreaking, but there is at least some small reassurance in knowing that even death is something that the human mind can adjust to and accept, given time.

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  16. How like his mama that even in the midst of his own crisis he is thinking of others. I hope he knows that by the gift of your writing all of these stories, David, Yael and Solly will always know how much he loves them, with or without the notes. I often think of Steven's story about taking his mom to select bar mitzvah gifts for the boys, knowing she wouldn't live long enough to be there. I had a little daydream about showing Sammy a bunch of different yads and having him pick some out so he could be a part of their big days. But as you say, he may need to just be in his Sam space and so that is exactly the right answer. When Julia died, Ellie was so distraught because she never got to say goodbye. I told her that I was standing there holding Julia's hand when she passed and you never say goodbye...you just say "I love you" and that is exactly the right answer. As always, you are the embodiment of love and in return you, Michael, David, Sammy, Yael and Solly are loved beyond measure. Love,
    Marissa

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  17. Unimaginable. My heart is breaking. All my love and well wishes to the Sommer family as you need to somehow pick up the pieces and go on.

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  18. I wish I had words to comfort. My heart to Sam and all of you who love him and to all of us who struggle to understand how this can happen.

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  20. Keep loving one another and doing the best you can to take care of each other. Your compassion is inspiring. We continue to keep you in our hearts and prayers hoping that you may continue to find the strength and love you need in each moment. Sammy has touched so many many lives and will continue to do so.

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  21. I think about all of you every day. Sending love from Milwaukee.
    -Jeanette Joseph

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  22. Nothing to say. Just want you to know I am thinking about you all and "listening."

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  23. I have been following your blog for a while now. I wish I had words that could comfort you. Sammy is here to teach us all about love, giving, strength, compassion and selflessness. Sammy is always thinking of the other person, about his siblings, about his parents. That's selflessness! we can all learn these lessons.
    Just know that when the time comes, Hashem will be holding Sammy's hand and your hand as he guides Sammy on to bigger things and find strength in Hashem as he will continues to help you and your family through these tough times. Never say goodbye, just say "I Love you"

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  24. Please tell your sweet Sammy that there are people out here who do not know him personally, but we are amazed by the things he says and does, by his bravery and by the kindness in his heart. Thank you for sharing your journey. I wish for you continued strength and love. There is a vast community out here thinking of you and praying for you. Please also tell Sammy that we are among those 500 people who say his name out loud at Shabbat services when it's time for Mi Shebeirach. We pray for comfort and peace for Sammy and all of his family.

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  25. Phyllis, I'm a complete stranger and I want to hug you and make you a miracle. I lost my beautiful mother to ovarian cancer when she was 50, and people asked me that question too. It's a nonsense question, how are you, but I took it as exactly that - that everyone who asked wanted to give me my miracle. I am praying for your miracle. Where there is life, there is hope.

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  26. Yes. How you are is sad. So sad. How else could one be? Sam's thinking of others and how he can continue to show his love for you all is beautiful, even if he doesn't end up making those things happen.

    Mostly I am just sending love from a stranger, and saying I am here, thinking of you and thinking of Sam and bearing witness to your sorrow.

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  27. Thank you for this. For sharing what you have left right now with the world. I've never been so brave or giving. Both of my parents were gone by the time I was 30. And I was sad and inward and angry and felt alone. Your vulnerability and sadness is a gift. Sharing Sam with others as he is fading is amazing and appreciated and inspired me to write today. Thank you for the reminder to reach out. To be human and to be alive in your pain. Thank you.

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  28. I have no idea what you're feeling but I know how you've made me feel; deeply touched. Your words are beautiful and eloquent, and you and your amazing son are wonderful people. All you can do is as you have done and that will have to be enough. Best to you and your whole family.

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  29. I'm so sorry. This has to be a complete nightmare. I wish I could take the pain away from your family.

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  31. My mother died of breast cancer when I was 15. While the circumstances are certainly different and I can't really offer advice on coping with the impending inevitable that's made itself so prevalent in your life, know that there are others who've gone through the same thing. Yes, death is different– case by case, family by family, life by life– none are the same, just like a given novel doesn't end in the same manner as the one sitting next to it on the shelf. But there are, indeed, individuals and families that have gone through similar situations– even though it may not seem it at this unfortunate moment in time. There is a network of strong people that have experienced death standing firmly behind you– to catch you when life seems unconquerable, to tell you that what may seem the end is truly just the beginning.

    I think there's a reason behind everything. Even though this may seem counterintuitive, there is a means to His method. Although I'll never see my mother again or hear her voice telling me to "get up, you're going to be late for school," I feel a stronger connection with her than I have with any living individual. While this chapter of Sam's existence seems to be coming to a close, expand your mind to allow yourself to connect with him in a greater way– he clearly has already.

    Sammy knows, like you do. Just as my mother will be with me throughout the pivotal moments of my life– marriage, the gift of children, age, and, eventually, whenever my time comes– Sam isn't going anywhere. He has unfinished business to take care of in his family, friends, and extended loved ones.

    There's a old saying in my family whenever we visit the cemetery where our family members are buried. "The human body is a shell– it stands as the barrier between our soul and the world. When we die, the shell is left behind while our soul forever lives immaculately through the memories of those that loved us."

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  32. I think about you every day, too, and I - like others here - don't even know you. And I am sad, so very sad, too. My husband and I just donated to St. Baldrick's in honor of Superman Sam - turns out our rabbi, who is shaving her head, overlapped with you in rabbinic school. We chatted about Sam this weekend before a study group. There's nothing to say except that you and your family are in so many prayers.

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  33. As I sit & read daily, I know that G-d has his plan. My dad was taken from my Mom, sister & myself. He was 34. I didn't remember his voice or anything. I smile when I see photos of me on his lap. My Mom raised my sister & myself. Cherish the times. We all pray for your wonderful family.
    Lovingly, Adrienne Rosenblatt

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  34. Oh, Sammy. My heart aches for you and your family. You've touched so many lives and I will hug my precious son a little tighter every single day, in honor of you.

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  35. You say so much, even when you cannot say anything more, so no questions are necessary. I don't even know how you have the kindness to reach out to us, just to share these moments, each time seemingly fewer to share together. Sam is OUR plan now.

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  36. I've been so touched by your sharing of this heartbreaking story. My heart aches for you and your family.

    Wishing you as much peace and happy moments as are possible in this most difficult of times. You are doing an amazing job harboring this beautiful little boy.

    Holding you and your family in the Light.

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  37. Sending you and your family and especially Sammy prayers and wishes for strength and love through these days.

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  38. Dear Phyllis,
    I have been watching from a distance, admiring you and your family and your special Sam. You are one beautiful soul, your words touch me in a place I cannot describe. I have no words to share with you, each Shabbat,as I say Superman Sam my rabbis reach out to me with sad smiles. You and your son are shining examples of strength and beauty. I watched more closely as Sam's grandfather of blessed memory walked the same walk and I know he is waiting patiently to welcome Sammy.
    I will continue my prayers.

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  39. Tonight as I was driving and thinking of you, I saw a shooting star. I haven't seen a shooting star in a very, very long time. It was beautiful. Goodnight sweet Sam. Holding you and your family in my heart, thoughts and prayers. Love from Boston.

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  40. I've been reading but not commenting. I don't know you at all, but I just want you to know that I am so, so horribly, unbearably, awfully, sorry. I don't know if that means anything at all, but just in case these words coming through the void bring you even one millisecond of peace or love or light, I wanted to send them.

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  41. Phyllis..As many others have written, I do not know you, but your wonderful husband married our children, Michael and Amanda this summer. They love you and your family so much and have asked us all to keep Sam and the rest of your beautiful family in our prayers. I read your updates and admire your strength and so saddened by your sadness. We are all thinking of you.

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  42. I read of your story through my friend Kathy who's little girl I believe is a friend of Sam's. Sorry doesn't suffice for the depth of what I feel for your family. I hold you up in prayer daily for the strength, wisdom, and togetherness you need as you go through these days.

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  43. Phyllis,

    Your honesty and heartbreaking message are moving beyond words. Thank you for sharing. I, along with so many others, are praying for strength, comfort, and love for you, Sam, and your entire family. You are doing the impossible they very best way possible.

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  44. Rabbi Sommer-
    I am so sorry about Sam. I have twin boys, just a year older than Sam. I had a nephew who passed away when he was just 2 (that was 8 years ago). I can only hope that you and your family can find strength in your own way. I am sending my best possible wishes to Sam.

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  45. Phyllis,
    It's weird how sometimes someone else's story hits you in the gut like a ton a bricks...or 10 ton basket of bricks. Your husband is an old college pal of mine...I always enjoyed his ready smile and sense of humor.
    So miles away from you...an entire congregation of kids age 5-14 will being saying a prayer for Superman Sam and his family. A prayer of peace, love and calm support. I teach at a Catholic school (tho not Catholic myself.) I have never put in a prayer request. We don't do them often. But Sister Mary Karen didn't hesitate or look at me oddly (an odd request from non-Catholic me to include anything in a full school service.) I have talked about Sam to some of my classes about even when you fight, God doesn't always let you win...the reasons are unreachable.
    But a big wave of love will come your way on Thursday in the am. I know it isn't much...but it's there.
    From one mom to another...
    Sincerely,
    Laurie Genet Preston

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  46. Hi Phyllis,

    I haven't any other words to share than I am sorry and I am listening. I hope Sam and the rest of you do as well or better than can be expected during this time.

    -J

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  47. Like so many who read this blog, we don't know each other--but each post touches me so deeply and I hurt for you and your beautiful son. Sending love to you and yours as you continue this sad journey--
    Stefanie in Milwaukee

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  48. I have never felt so sad. I'm so sorry for you and your whole family. There are just no words.

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  49. Oh Michael, Phyllis, and family. I just heard. I am so very sorry for your loss. I have no words but I hurt with you. Sammy was special. May G-d grant you the strength and courage.

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  50. Like so many, I was brought to this blog through a shared post on Facebook and, as a father of 3 in nearby Northbrook, I find your and Sam's words simply amazing as you went through this unimaginable journey. As I grieve for you and your family, this prayer fills my head:

    May the Lord bless you and keep you.

    May the Lord make his face to shine upon you,
    and be gracious to you.

    May the Lord lift up his countenance upon you,
    and give you peace.

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  51. My prayer for you and your family is that G_D will bring bring you comfort, strength,love and healing.

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  52. I just read what happened. I am so sorry for you and your entire family, and I wish you so much strength at this horrible time.

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  53. I am so very sorry for your loss, and so very sad for you and your family.

    Words seem inadequate...just know you are all in my prayers.

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  54. May the Lord wrap his arms around you and your family. Prayers for all of you. I am so sad.

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  55. I am so terribly sorry for your loss. Prayers for Sammy and your family.

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  56. There are no words .... We are beyond sad.... We just wanted to send you, Michael, David, Yael & Solly our love and prayers.

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  57. Wishing you all love and peace. Baruch Dayan HaEmet.

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  58. So so so sorry to hear of your loss. Thank you for letting us get to know Sammy through your posts. We will all miss him. Baruch dayan haemet.

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  59. There are no words, only tears. I grieve with you.

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  60. I have no words. My heart physically hurt when I heard the news today in a cab driving from Modi'in to Tel Aviv. I wish I could be at the funeral more than in spirit, but I'll say a prayer in Jerusalem this week. Much love.

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  61. We are so sorry for your loss.

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  62. so sad. how quickly it all happened. thinking of you all from Israel.

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  63. I am a friend of Lorra Rudman's. I have been following the blog for a few months and as most will acknowledge, there are no words. Perhaps it is a blessing that you have poured out your pain in these pages so that it can eventually be diluted with the love & support of others. It will also someday be diluted by the succession of joys to come as you carry on without Sam. But for now, for today, there is nothing but the terrible loss and the terrible sadness. Sam is at peace today - and you and your family are in my prayers. Thanks again for sharing this journey with us and bless you.

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  64. Healing, strength, courage, love.

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  65. Sending you so much love, my heart breaking for your loss.

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  66. I am so very sorry to hear of Sammy's passing. Wishing peace and strength for you and your family.

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  67. At a loss for words to console, my resolve to work toward accelerating a cure for blood cancers is strengthened by the love, courage, humility and strength of your family. May you feel the love and support of all those who have been holding you up in prayer throughout this journey.

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  68. I am so sorry. The example Sam and your family have set over the past two years inspires me every day. May you be comforted in this difficult time.

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  69. I just heard. So many tears for all of you, and for Sam, the mensch the world got to know and love. Thank you for so graciously sharing him and your journey with all of us. Although we have never met, just know that we are here for you…holding you up in our hearts, thoughts and prayers. I know that Sam's memory will be for a blessing and shine as brightly and as beautiful as that spectacular shooting star I witnessed the other evening. Truly a sign from the Heavens. With all our prayers for comfort, peace and little bits of light in the days ahead. And love…just an abundance of love.

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  70. Wishing you healing, strength and love. We will always remember the light Sammy shined and all the lives he has touched.

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  71. Please accept my deepest sympathies on your overwhelming loss. So many hearts are broken today.

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  72. I am so very sorry. Heartbreaking. Prayers to you and your whole family.

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  73. My heart is so heavy for you all, having learned after Shabbos about your grievous loss. May Sam be a melitz yosher for you and your family, and may he find his place in Gan Eden.
    HaMakom yenachem etchem b'toch she'ar avelei Tzion v'Yerushalayim.

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  74. I came across this blog from a friend on FB and spent all night reading it. I have no words to express how heartbroken I am for all of you. Love, hugs and prayers to you all from me in BG.

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  75. To understand the impact that Sam had on so many I just have to look at my facebook page - so many people from so many different areas of my life, with a very wide background, are posting about him tonight, all crying and mourning the loss of this special boy. Our hearts are crying for all of you who knew and loved Sammy.

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  76. I, like many others, found your blog via Facebook. I am very, very sorry for your loss. Please know that tonight my heart aches for you and your family.

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  77. I wish I had the immense privilege of knowing you and your precious Sam. I have also lost a child. There are never, ever adequate words. There is only love and faith, both of which last forever.

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  78. Hi family of Sam,

    Sam sounds like he is and was a wonderful incredible boy. A college friend forwarded your story to me (thank you Stephanie Gertz) and I've read about the last months of Sam's life and how full of love and comfort they were. What an amazing gift you give to the world by sharing his story with all of us. Thank you. It is the holiday season for many people now regardless of religion and sometimes what's truly important is lost in all the commercial culture. You have reminded me of that today and I am extremely grateful. Sam will live on in everyone that loved him and his family and in all of us that are lucky enough to learn about his too short life. Know that this mom of four boys is thinking of you in McLean, VA and wishes I could do more for you. A very close friend of mine died from breast cancer in 2009 and she reminded me daily to "keep on living". Another young woman I was fortunate enough to know that passed away this April from breast cancer at only 29 was most afraid of being forgotten.

    Sam achieved more in his eight short years than many of us do in a lifetime. He will never be forgotten. Keep on living.

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  79. This brought me to tears i saw the story when he was superman. My God bless you and the rest of your family and keep you in his arms. Words can not express enough to comfort you durning your loss. But you and Sammy will be in my prays. For now your angel is watching over your family and will forever be by your side.����

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  80. I am so sorry for your loss. I can not imagine the pain of losing a child. As a child, I remember the death of a sister and a brother. My mother was a pillar of strength, even helping my dad. It wasn't until I became a mom myself that I realized how amazing she truly was. As I read your blog, I am once again amazed by another mother's courage and strength. Bless you and your family.

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