Tuesday, September 24, 2013

Sam, Sunshine & Family BMT +28

Sam just keeps improving as the days go by. We enjoyed a great day with Nurse M keeping us company and even granting Sam's greatest wish: shrinking his IV pole down once again...
Uncle Harry, Bubbe, Zayde, Mommy & David all came to visit today. Sam didn't know what to do with himself. At this point he believes his parents are Clark Kent and Superman and can never be seen in the same place at the same time (clearly Phyllis is Superman/woman considering all she manages to accomplish in a single 16 hour period of being awake). It isn't often you have both of us in Sam's room without all the other kidlets bouncing around us and making us nervous (ok, really only Solly makes us nervous. We are waiting for him to pull the wrong cord or press the wrong button).  Sammy even asked for AND ATE spaghetti and sauce! You could have knocked us all over with a feather.
We tried to take this picture from afar so as not to disturb the EATING.
Sam was really himself today. He took his meds without a hitch. He sees the goal in front of him, so close he can touch it. He wants out. (Really he wants out by Friday because Cloudy with a Chance of Meatballs 2 is coming out.) He walked a mile with pluck and verve. He keeps me hopping as I have to distract him with stories of my sordid youth while he takes his pills. Really I mostly go through old comedy routines of Eddie Murphy, Bill Cosby and Jerry Seinfeld (minus Eddie's colorful vocabulary of course). Usually I just jump to the punchlines because Sam is getting that good at taking pills that I only have time for 2-3 sentences before he is done. 

David brought dinner and Sam's best medicine in himself. The two sat head to head talking, playing on the iPad, eating and watching some tv. They talked games, books, movies and television. Family is really the best medicine we can ever offer. Sammy eats up the time and the company as if it were his best meal of the day. It is a blessing to watch them together. 

The horizon always looks so close and yet so far away. Yet twice a day the colors are the most magnificent ever shown to our human eyes. I can see our outpost on the horizon, so close I can almost touch it. It looks beautiful and yet full of daily challenges and expectations. We will meet them all head on with courage and strength. Sammy can see the horizon. He is running towards it. He can taste it, smell it, feel it in his heart and in his lungs. He can sense how close he is to shedding these four walls (ok it isn't exactly a square room, and has six walls if we were all to count, and yet I digress). He has his goals and knows the expectations of his medical team. He is up to the challenges if it means living across the street, eventually living in his own room once again. One day at a time. One beautiful day, with our beautiful boy, and our beautiful kids, and our beautiful family at a time. We will all cross that finish line together. 

6 comments:

  1. G-dspeed as you cross that finish line.

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  2. I do not believe that Phyllis manages to sleep 8 hours a day and do everything she does -- again, wonderwoman proof!
    Keep those spirits up -- you sound wonderful

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  3. Cheering for Sam and his wonderful family!

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  4. "The horizon always looks so close and yet so far away. Yet twice a day the colors are the most magnificent ever shown to our human eyes. I can see our outpost on the horizon, so close I can almost touch it. It looks beautiful and yet full of daily challenges and expectations. We will meet them all head on with courage and strength." Indeed you do, and have. (And made me cry AGAIN in the process.) I imagine it's not always delightful to be constantly told how amazing your family is, because the subtext is that you're dealing with a pretty scary and uncertain situation, and being told you have so much grace is like "uh, and the other option is...?" But your humor and juggling and love for each other and ability to express yourselves to each other and to us are all amazing, on a zillion levels. Thank you so much for sharing this experience here.

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  5. Dear Sammy,
    You are doing such a great job doing all the things that you need to do to get well. You are a great role model for other kids. Keep up the GREAT work Sam.

    Hugs,

    Rose

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