Wednesday, November 20, 2013

Reality Check

You know how you've heard about a place for your whole life...and you imagine how it's going to be...and you have expectations of what you're going to get...

And then it isn't quite that?

So that's what happened to Sammy. 

Israel. 
His whole life he's heard about it. 
Imagined our family trip. 
Was told that he would study there someday. 

When we told him that his leukemia had returned, one of the first things he said was, "I will never go to Israel."

So we made it happen. 
Israel. 
I was very honest with him. 
It won't be like home. 
The food will be different. 
Things might smell funny.
It's a long plane ride. 

Yes, he said. I want to go. 

Each day I would repeat this refrain. 
Each day he said, yes. I want to go. 

I offered to cancel. He didn't feel well. Even on the day of departure. No, he said. I want to go. 

On the plane ride to Israel, he was uncomfortable. It was hot. He developed a rash. But then we got off the plane and he smiled. 

Israel. 

But things weren't quite as he imagined. And he started to feel worse and worse. The rash got worse. He was itchy. He was tired. Things weren't like home. 

I reminded him that I had warned him. 
He didn't care. 

Jet lag has been hard. 

We've tried to make the best of it, feeding him the peanut butter and Oreo cookies we brought. But the food isn't what he had in mind. 

He's tired and uncomfortable. 
Things aren't what he imagined they would be. 

Late last night (or early this morning, I guess), I had a powwow with Dr M and our palliative care nurse to figure out how to salvage this experience for him and help him feel better. We changed the meds. We talked strategy. 

Operation Salvage and Distract was enacted today. We changed the itinerary and added the Jerusalem Zoo. Sam loved it. 

We fed the elephants and the giraffes. We met the zebras and the rhinos. 
He was tired but enjoyed it. 
But it all came crashing back down when it was too cold to swim. (The pool is heated but the air was cold.) Disappointed doesn't even begin to describe it. 

Up and down. 
His mood, his sense of well-being. 
How do you live with the knowledge that you're going to die from the disease in your body? How do you enjoy these moments when you just feel like it's not what you expected?

He's only 8 years old. I couldn't expect him to want the same things two days in a row if he were a healthy child. But this has amplified and exacerbated all the negatives.  

I hate God, he says to me. 
I hate everything. 

There is no manual. There is nothing to tell us what to say to him in these moments of terrible emotional pain. 

Even in Israel. 
We want magic. 
We want big beautiful grand moments. 

But it doesn't always work out the way we hope. 

We have a couple more days in Israel. 
Hopefully in each day we will be able to find a blessing...

39 comments:

  1. To Sam and all the Sommers - Our family sends love and wishes for peace and moments of great beauty over the next couple of days in Israel. We are holding you in our hearts.

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  2. I was going to suggest the Ramat Gan safari for Friday since you drive through the first part.

    Would an outdoor hot tub compensate for no swimming? If he can go in one I've got one to offer, with room enough for all his siblings to come in with. (And parents too for that matter, it's stupidly big.)

    If not, I can also offer Israel's best ice cream - our personal family favorite is Dr. Lek's in Jaffa, the original branch.

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  3. Hm. Did the blog just eat my comment? Apologies if I'm posting it twice.

    I hear y'all, and I understand. Of course he's heard about it all his life. Of course it can't measure up to all of those expectations... especially with his prognosis on top of everything else, coloring everything else, for him and for you.

    I can't tell you how often I've heard a sick and angry adult say that they hate God. (I'm sure you have, too.) What I usually tell them is: it's okay. It's okay for you to hate God. God can take it -- God can handle all the anger you need to pour out.

    I hope there can be blessings for you in the days to come.

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  4. Perhaps you can concentrate on kid-friendly activities, even if they're not particularly 'Israel', just to make sure he has a great time? My kids have always loved the AMAZING Herzliya park, if you head in that direction.
    I hope that the good moments outweigh the bad and that you can make the best of it. Any adult would find it hard to cope after the news he's had.

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  5. I think I speak for the vast majority of your friends and followers when I say that if I thought there was anything I could do I'd be there in a heartbeat, but I have no idea what that would be.

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  6. My son is currently being treated at Schneider for ALL. Down the street from the hospital is Mercaz Oranit, which is a center for cancer kids and families -- they have a petting zoo that is safe for kids w cancer, art and music rooms, tons of volunteers, etc. If you want phone numbers, etc, pls let me know. If you want a tour of the Elite Chocolate Factory in Nazteret Ilit, let me know that, too, my BIL works there. If you want to come meet another cancer family, pls feel free. You are in our thoughts and prayers. abbi at perets dot net.

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  7. I facebook messaged you info for the Israel Museum. It has been totally revamped. I have protexia there for you.

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  8. you're doing the best you can with the tools you have....and you're doing a great job! You're amazing parents and people! Wishing you peace and joy!

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  9. You are indeed an amazing, loving, and strong family. My heart goes out to all of you -- my prayers continue along with wishes for new and refreshing blessings and enjoyable experiences for the rest of your time in Israel.

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  10. Phyllis, you and Michael are so strong, loving and wonderful and our hearts go out to all of you!! All you can do is love Sam and try to enjoy the experience the best that you can. Continuing to send prayers, positive thoughts and lots of love to all of you. God bless! Danny Murov and Robyn Kaplan

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  11. I don't know you, but I want to hug all of you. Just thinking about you and wishing you peace.

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  12. Phyllis, you continue to amaze me so I shouldn't be surprised when it happens all over again. You write beautifully and I feel blessed that you have chosen to share this horrendous journey with all of us. You have knocked me sideways again with the raw realities you face every day but do not back down from. Love, hugs, and strength to all of you.

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  13. My neighborhood has lots of American products if food is an issue - you can even get wacky mac here if you want details devorastrauss at gmail dot com

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  14. We habe been on 2 wish trips that were not the fantasy but harsh reality. Don't doubt yourself for s moment. You will be comforted in the knowledge that you did everything you could. Sammy knows it in his heart. Take the medicsl ss it comes and know you are giving all of youselves this time to build memories. All our love, Heather Rose's parents

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  15. I am continually in awe that you are able to post such poignantly beautiful posts while living this reality. I think about all of you all the time.

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  16. Have I mentioned what awesome parents you guys are? Yes, for taking the trip, but even more so for your kindness and honesty with Sam and yourselves... and your willingness to adapt the plan to bring joy, and to accept that there will also be sadness. Sending lots of love, Erica

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  17. Keep on loving your boy; surrounding him with the love of you and everyone on the trip with him who cares about him. It's not going to solve anything at all, but sometimes, it's what you can do. High hopes are hard to meet under normal circumstances. Praying for strength and the ability to receive and see lots of blessings in the days to come.

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  18. I hope you can find things that will make each of his days there special. Sounds like your friends have some good suggestions. Hope some of them will work for you.

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  19. sending you hugs and warmth. maybe he isn't up to going around too much but maybe for short walks thru the parks like the rose garden by the kenesset. or gan sacher. you can take lovely pics there and just enjoy time being with each other. if the other kids need to get out more maybe they can go out with your husband. so sorry this is hard. much bracha and streghnth.

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  20. big hugs. you are such an amazing mama, phyllis. xo

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  21. What Debbie said. What Dan said. What Robyn said. What everyone's said. Just checking in to be with you the only way I know right now, holding you all in my heart.

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  22. You write so beautifully and honestly. Are you aware of the Kibbutz Ramat Rachel swimming pool in Jerusalem, right next to Talpiot? They have a great heated indoor pool and great views of Jerusalem and Bethlehem.
    We have not met but you are all in my heart and prayers.

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  23. Hi Phyllis. I've been following your blog for a while, I am so, so sorry for what's happening to Sam and your family. I live in Israel (originally from Chicago), and I wanted to recommend that you try the Bloomfield Children's Science Museum in Givat Ram, Jerusalem. It's a wonderful hands-on experience that kids (and adults!) love. You can go for a little while or for an entire day. Here's the link: http://www.mada.org.il/en. Refuah shlaima and bsorot tovot.

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  24. May I recommend Mini Israel? It's near the tank museum, name of place is escaping me (between Tel Aviv and Jerusalem somewhere). It's easy, fun for everyone, and he can see "the whole country" in a few hours. I'm so sorry that every minute is not as you/he hoped but in retrospect I think he will still feel fulfilled. We had much complaining on our trip from three healthy kids but they look back on the whole thing as amazing.

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  25. Traveling is hard on even the healthiest adult. I am sorry the trip didn't live up to Sam's expectations. At least you are all together.

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  26. You are an incredible mom! I wish I could give you a huge hug! Sam and your whole family are so lucky to have you! I am sending you all so much love!

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  27. What you all are dealing with, especially Sam, is unfathomable. Sometimes it's hard to see the sliver of light when so much is dark, especially for an amazing 8-year old boy. Hopefully Sam will find whatever he needs during this journey to enjoy moments of this experience with his incredible family. Our love to you as you work through each moment together.

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  28. Sammy - so angry with God. Of course he is. You and Michael are the best parents you could possibly be, trying so hard to pick him up and help him find enjoyment and peace. I admire you so much. As always, I'm holding you in my thoughts and prayers.

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  29. This is such a complicated time that I imagine nothing will feel quite right, no where will feel quite right - if you hadn't gone to Israel, that would have felt disappointing in its own way. That Sam has the freedom and support from his family to feel the full range of his emotions, in all their intensity and volatility, is its own blessing. I'm wishing patience and fortitude for those of you who are closest to Sam and accompanying him (and his siblings) during this difficult time. Love from the Millers.

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  30. Can he swim in a natural body of water? If so, take him to the Sachne! The water is a warm 82 degrees all year round and its not yet cold in the Jordan Valley. Then he'll have a real tiyul experience and the swim (and magic) that he craves. And, as an added bonus, there is a kangaroo zoo next door.

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  31. Here is a web site with activities for kids in Israel. http://israelkids.co.il/ I take my daughter swimming at Olam Hamayim in Ir Yamim/Poleg/Netanya. It's super heated and kids with diverse needs there. Just be persistent with the phone. I am so sorry for you and your son. He should be angry. I'm angry for him. But I hope there is peace after the anger.

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  32. If you are still here, hope you all have a good shabat in israel! shabat shalom!

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  33. Tonight as I light the Shabbat candles you and your family will be in my heart, thoughts and prayers. As always. Much love from Boston. xoxo

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  34. Wishing you, Sam, and the whole family a Shabbat Shalom. Praying that a bit of wholeness can find you when all seems broken. Lots of love from Charlie, Adena, Leah and Michal

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  35. You are an amazing mother and an amazing person. Is there a more powerful word than "amazing"? If so, you are it.

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  36. If you are still in Israel and in jerusalem, you can get Pizza hut at malcha mall, or subaru pizza or burger king, on ben yehuda street.

    Its understandable that he is having a hard time, and that doesn't mean he isn't having a good time, he is just coping with a lot more then we can imagine. You are such a strong mom that I can't even fathom what you are going through!!

    I said a special pray for sam and your family when I lit the shabbat candles this week. I hope your family finds comfort and I hope you all have a warm and happy chanukah making memories together.

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