Saturday, November 16, 2013

Nothing is Easy

I called AT&T to do whatever I needed to get my iPhone to let me talk to Dr M from Israel.
(Oh yes, we are headed to Israel. Have I mentioned that?)
I reached Brian, a cheerful man with a lovely Southern accent.

"Where y'all goin'?" he asked me.

"Israel," I answered, thinking the answer might have something to do with the long distance stuff.

"Well that's an interesting destination! Business or pleasure?" he asked, conversationally.

Is it pleasure? Is this a trip of pleasant delights? What do you call it when you are taking your dying child on a trip-of-a-brief-lifetime?

"Pleasure," I answered. It was just easier. 

But sweet, clueless, cheerful Brian wasn't done.
Clearly he had some time to kill while he pulled up my account.

"What made you choose that?" he asked.

My sweet dying son cried out in anguish that he would never go to Israel. That's why we picked it. 

"Well, my husband and I met there so our kids have always heard a lot about it," I answered slowly, breathing shallowly and choosing my words carefully, holding back the tears.

"So romantic!" he said.

Will I ever be able to revisit my beloved Israel, place of so many good and sweet memories, without the pain of this trip? Will the good memories that we are determined to create win out? What will they remember of this beautiful holy place? Will they remember Sam's pain or will they remember how the sunlight glints on the Jerusalem stone? Will they remember the bittersweet taste of his moment or will they remember the sweetness of Marzipan rugelach and pop-rock chocolate and Milky cups? 

"Yes," I said. "Yes, it is."

Every interaction, every conversation, I weigh out what to share and what to talk about and how to say it and how to take it and how to breathe....

#samsbucketlist update

Learn to drive:

Other things are in the works. Your generosity astounds me and leaves me filled with tears of blessing. The outpouring of love and care is truly amazing and we are so touched. 

Sam is anxious and angry, he is emotional and cries easily. He's in some pain and I'm worrying over a spot on his ankle that's particularly bothering him. He's very excited for the trip and when he gets emotionally overwrought I can bring him around by talking about what we will see and do in Eretz Yisrael. It always gets a smile. The other kids are excited to go. Solly wanted to get on a plane tonight and didn't want to go to bed.

I suppose I should go and pack....

41 comments:

  1. If I can help on the Israel side...if you need anything here, please contact me. Not sure what this ID will show, so - I'm A Soldier's Mother/Paula Stern. You can reach me at prs at writepoint.com or 02 571 6668. If I can help at all. Safe travels and sendingf love and prayers (and my office is right near Marzipan)

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  2. Travel safely & enjoy every minute viewing Israel through Sam's eyes for the first time.

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  3. May the city of peace, bring you peace! Nesiah Tovah.

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  4. I have followed Superman Sam's journey over this past year and like so many others, while I have never met you - my heart is breaking. May this trip be magical. I wish for you safe and smooth travels - and send you love.

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  5. If there is anything this Mom in Jerusalem can do, from personally conducted tours to home-cooked food, PLEASEPLEASEPLEASE call me. 054-250-7324 or email rabbiswife AT Gmail DOT com

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  6. Phyllis and Michael, I've already contacted Rabbi L (he's also got my numbers) to offer to help in any way I possibly can and will do anything and everything possible to help you all create more beautiful memories together while you're here. And cookies. I'm dang good at cookies. And brownies. And even not-as-good-as-yours-but-I'm-offering mac n cheese. Anything you need my friends. And love. Always love.

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  7. You don't know me and I don't know you, but several of my friends on Facebook have shared your blog posts and I've been following your family's story and crying along with you. It's amazing what you are doing for Sam and the memories you are creating for his siblings.

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  8. We are excited for your decision to embrace adventure and go to Isreal. We went with Heather to Vegas and we'll nevet regret it. Go and have fun.

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  9. Safe Travels and much love to you and your family from the Buzil's. Thinking and praying for you daily. Have Sam take lots of pictures so you will always have his view of Israel. A wonderful gift you will have forever, a cherished first time visit.

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  10. I am following your story through my friend Amy. You are models for embracing each moment. May you create beautiful moments together in Eretz Yisrael.

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  11. Have a beautiful trip over loaded with incredible, warm loving memories.

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  12. A hero does great things. A superhero is so amazing that we, as humans, are so astounded and we can only hope to get a glimpse of that greatness.

    You, Sam, and your whole family, are sharing your superpowers with such bravery and strength. I, for one, think you are all the most amazing superheroes.

    We are connected through many mutual people, and while we don't know one another, your powers have far-reaching and amazing effects.

    We can only hope to lift you with as much strength as you've shared.

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  13. You are love warriors. I am so moved.

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  14. May the love you originally found in Israel be magnified many times over.

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  15. May this trip bring blessings to all of you. May the sweet outweigh the bitter.

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  16. Israel is the perfect place! My sister Tybee Allen and brother in law Pesach Allen live in harnof and have been davoning since I sent them Sam's name! Words never come out right as everyone worries and tries to say the right things... Just know your family is in everyone's thoughts and prayers. From highland park to Israel... We are with you with strong arms for support and comfort! Make beautiful memories!!

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  17. I just started following Sam's story, as a friend has been sharing your blog on facebook. I would love to help make Sam's life meaningful; if there are any wishes to which I can donate my time or money, please let me know at jptess@hotmail.com. I send any strength I have and prayers to you and your family.

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  18. Kislev.... The month of Miracles. Enjoy Israel, Daven your hearts out at the Kotel, Make memories and see that every day is a miracle... May you merit a true miracle this kislev.

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  19. I am praying for you and your family. You are all in the hearts and minds of so many. I pray for peace and love and holiness cover you through your days. Have a wonderful trip and thank you for being examples of strength, love and gratitude to this world.

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  20. Sending love and prayers of safety for your journey.

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  21. I'm praying for Superman Sam to lead you into peace and holiness in Yisrael. I'm praying for blessings and good times for all of you. I think about you all the time and pray for you. I hope Sam and the kids revel in fun and wonder, and that you, Phyllis and Michael, receive joy from this.
    Love,
    Fran

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  22. Have a wonderful trip. I hope it is healing and precious for all of you. Have you thought about contacting Make-a-Wish to see if they can do anything to make it extra easy, or set up anything extra-special?

    Much love,
    Jane

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  23. Although we don't know each other to well, I have followed your journey and I am so grateful to get the opportunity to see and feel the love and kindness your family exudes. May your trip to Isreal be filled with safe travels, as well as love and light through Superman Sam's eyes. Sending you love and hugs. The Dickson Family (Robbins, too!)

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  24. sammy, I am very happy you and your family are coming to Israel. we are praying for you.

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  25. No one can know what you are going through and feeling. I do empathize about the phone call though. Years ago, my brother and sister-in-law had a baby who appeared fine when he was born -- but it turned out his lungs didn't develop correctly. They had Joel in their arms for one day and in NICU for a month. When it became clear that there was no cure, I took photos of them with the baby so they would have some tangible memories. When I went to Hallmark to buy an album and photo box for the pictures, the truly sweet young girl behind the counter said, "Have a nice day." And I thought, "We're taking a baby off life support today. This is not a nice day." But her remark was as appropriate as it was horrendous. None of us know what the other is feeling, dealing with, etc. And we can't approach everyone and everyday assuming the worst -- that's no way to live. So one of my lessons learned from Joel's brief life was to simply be as kind as possible, as often as possible.

    Social media wasn't the norm back then. I am glad the prayers and support of people who have connected online with you and your wonderful family bring some comfort. And if Superman Sam needs anything from Kansas City to fulfill a bucket list request, he's got it!

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  26. Phyllis, my son drew Sam as a superhero and wrote him a letter. Is the Wisconsin address still correct? God bless all of you right now. We will be carrying you with us.

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  27. Israel always makes me feel whole, I hope it will help Sam as well. Take him to the biblical garden if you can, it will connect him to our ancestors in a way no other place can. http://www.neot-kedumim.org.il/ I hope you can find him a Superman shirt with a shin on it, I had one as a kid and I don't know if they are still around. We haven't met, but I am friends with Alden Solovy and I send my prayers.

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  28. I just returned from three years living in Israel as a journalist's wife. I haven't followed your journey but read of it on my cousin's friend Jane's blog today... What an amazing son you have ––that this is his biggest concern at this time. I'm in awe of his beautiful spirit.
    I'll be sending prayers your way as you travel in such a difficult time to that wonderful, crazy, stunning country. In my three years there, I treasured the way the culture there treated my children in particular. May your son find that he is loved there even more than he even knew. שלום...

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  29. I hope the trip brings all of you some kind of peace.

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  30. Coming to Israel is the best decision you could ever make. It has great everything from kodesh to chol, fun treats to medical care.
    Seize the day and enjoy every second.

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  31. al ha d'vash v'al ha oketz...al ha mar, v'ha matok...
    in this most imperfect of times, you have made the decision to be in the perfect place.
    n'siya tova - i can't wait to hear about your adventures!

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  32. Although you do not know me personally, I have blogging friends who you know. I live in the Golan and would love to help you plan a memorable trip to this area if its on your itinerary. Please contact me if there is any way I can be of assistance.

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    1. Unknown - you need to leave contact info, no?

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    2. I think she can see my e-mail address but just in case: Tziona 052-7455935.

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  33. Michael and Pesah - I doubt that there is anything practical that I can do. Maybe I and my kids could entertain your other kids while you take care of Sam? Bring over some soup? If so, call me 0545-277-814.

    What I can do is think about how lucky I am and to tell my kids that I love them. Hope that helps!

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  34. www.ctcicenter.com
    Dr. Shimon Slavin in Tel Aviv.
    He chaired the Danny Cunniff Leukemia Research center at Hadassah Hospital in Ein Kerem. He now has his own facility and he has been doing amazing things with Donor Lymphocyte Infusions. We funded his work for years while he was at Hadassah and I believe that if you are going to Israel it is worth a visit with him. You need to call him beforehand as he travels the world lecturing. Please google Dr. Shimon Slavin to see what he has done and hopefully he can help Sam.. You can reach me at dannyteam@aol.com
    I rarely use gmail.

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  35. I live in Jerusalem - if there's anything I can do to help....pls contact me personally - I know many people and love to make things happen. Even MORE so in the case of Special Superman Sam - sending AHAVA and CHIBUKIM x ladidah2000 at gmail

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