In the middle of the game we got a visit and the title for this blog post when Rabbi Steve showed up bearing a seasonal Shofar (a traditional ram's horn blown during the High Holy Days coming up in a little over a week for those of you watching your calendars closely) for Sam. The lung work is great for Sam, and he's had a "blast" blowing his new Shofar (I swear my kids get new ones every year from Rabbi Steve and my wife must hide them all. There must be a secret closet in our house with at least 20 Shofarot piled to the ceiling).
While Sam kept asking if we could continue our heated game of Monopoly Rabbi Steve peppered Sam with questions about our trip to Disney that he and his secret elves made possible. Sam gave him the highlights, but it was like pulling teeth at moments to get him to admit how much fun he had and what rides were his favorite. Then Sam countered with a request for a trip like that to Disney every year (his Monopoly negotiation skills are clearly improving). Rabbi Steve negotiated Sam down to one more trip for when he is healed down the road. Sam agreed. I said Rabbi Steve had to come with us this time.
Sam and Rabbi Steve loved continuing their battle of hospital volleyball after seeing who could blow up the largest surgical glove.
Finally Rabbi Steve had to leave, but not without one final Shofar Sho Good Blast for a healthy and blessed Shabbat Shalom.
I left for a few hours during the day and came back to Sam's artistic talents executed upon his own head. Not only had Sam given himself his own haircut with parental consent, but he'd used his own body as an ink pad and then pressed paper to his limbs to create his art.
If he loves it then I guess I can live with it. I gave my brother a hair cut once...just once.
Shabbat was blessed surrounded by family and friends. Together we said the blessing over our up-to-code electric Shabbat candles and blessed the Challah brought directly form Chicago (where Sam believes all good food comes from. "I love Chicago Food!! he yells on occasion). With that the younger siblings departed as David stayed until visiting hours were over. Together we watched Pirates of the Caribbean since that was one of the water rides Sam couldn't experience during our trip to Disney.
Shabbat was relaxing. We hung out, talked, and just let the day wash over us. The baths continue, we play with the anti-nausea meds to try and make sure Sam is comfortable and vomit-free. I even had a few minutes to talk with a friend on the floor and meet another parent I hadn't met before. We spent a few minutes making each other laugh, and forgetting that when we close the doors to our children's rooms we feel like we are on different continents, not just 100 feet down the hall from each other. It was a glorious moment stolen in the halls of the HOT unit.
This is surely (don't call me Shirley) its own little world. Each family fights its own battle often isolated from each other and the outside world. Together we remember our similarities those few moments we steal in conversation. Closed away in our rooms we create our own world of art, music, beauty, conversation and a broad selection of films that never seems broad enough. It is like our own Salon of healing as people must come to us to engage us in conversation since we can't go to them. And Sam does his best to love the minutes he can when he feels well or when his meds make him feel as if he is once again on top of the world. It is the giddy Sam that reminds us of all the sunshine that fills his incredible soul. The grumpy Sam comes when the counts are low or his sleep is disturbed once more to check vitals at the darkest hours of the night. That Sam curses the intrusions, curses the indecency, curses the necessity to check his life signs over and over when all he wants to do is sleep and dream far away from his now. These moments are few. Some nights are better than others. These are the moments when we all hold our breath until the sun breaks and Sam rises like a ray of sunshine at 8:30 am or 9:00 am (none of my other children have the decency to sleep past 7:00 am unless it is a school day!!!). Each morning Sam is my ray of sunshine as he smiles at me, wakes me with a request for his urinal and awaits the adventures to come.
Shabbat Shalom & Shavuah Tov! May you have a good week, may your week be fine, may it be as sweet as the Sabbath wine.