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Posts Tagged ‘tzitzit’

I believe that every day is a gift, not to be taken for granted.

Eight years ago next month, my son Aryeh suffered his first debilitating headache. From that first headache until now, life was forever altered.  In the days, weeks, months, and years that followed, I learned that life as I knew it could end in a moment’s notice. The good news for us was that while life drastically evolved, my son thrived in ways that can described as a miracle.

I AM ALIVE!

I AM ALIVE!

At 13 years old, the doctors found 6.5 centimeter arachnoid cyst wrapped around my son Aryeh’s brain.  For over three years, Aryeh suffered from horrific pain, life and death struggles, and deep sadness; we all suffered from loss.  For anyone that has experienced the serious illness of a child or any loved one, you know how quickly life changes after a serious diagnosis.

For years, Aryeh couldn’t handle bright or flashing lights, loud or sudden noises, kinetic energy or any movement.  Our very active household was silenced both physically and metaphorically.  Dovi, Aryeh’s little brother, was the most impacted.  My once very kinetic child was forced to quiet his body and spirit.  And with the silence came the fears that mounted with each passing month. Would Aryeh survive the hell that was taking over our lives?  Would the two brain surgeries save his life? Would his pain ever end? So many questions, so few answers. . .

Every one that knew Aryeh watched in horror as his pain could not be managed. To help us through this journey, we learned to find the gifts – some spiritual and some tangible. One precious gift was both. A group of friends and staff members from Fairhaven School tie-dyed a queen set of sheets for Aryeh. The sheets arrived days before Aryeh and I were to leave Washington, DC to go to Los Angeles for Aryeh’s second brain surgery. Those sheets stayed with Aryeh from the moment they came into our house through the many years of Ayeh’s illness, and beyond.

As a mother, I can’t even begin to explain how impactful the gift was not only to Aryeh, but to his whole family too. Aryeh’s friends knew that he absolutely loved and still loves tie-dye. At 13 years old, Aryeh surrounded his bedroom walls with tie dye wall hangings and wore only tie dye shirts.  🙂 While this might have made his grandparents a little nuts, it put a huge smile on my face!!!  Tie-dye t-shirts are still one of Aryeh’s favorite pieces of clothing (and for that matter Dovi’s too).

The good news is that we were fortunate to have amazing friends who made and sold their wares at Milky Wave Tie-Dye; Aryeh was also lucky to have friends that knew him so well!

The sheets became a comforting treasure very quickly.  The fitted sheets and pillow cases were immediately put on Aryeh bed and pillows.  Aryeh only stopped using them recently when they became threadbare. And when we went to California for his surgery the flat sheet came with us.  In fact, while he was in an induced coma, his father and I wrapped him in the sheet and just made sure the sheet was always on him. On one such day, a nurse came in and told us that the sheet was in his way and we needed to move it. During that particular conversation, the nurse enlightened us by telling us that he didn’t need the sheet nor would he know if it was on him or not.  Needless to say, the sheet stayed, but the nurse was asked not to return.

Once we came home, Aryeh reunited with his pillow cases and fitted sheet; the flat sheet however was placed in a drawer under his bed for safekeeping.

A few years after Aryeh’s brain surgeries, I was learning a chant that lifted my spirit and moved my soul. As I prepared the chant for a service I was leading, Aryeh walked into my room and said, “I’d like the words of the first line to be on my tallit* (prayer shawl) one day.” The words were poignant and perfect for Aryeh.  The Hebrew/English chant written by Rabbi David Zeller (of blessed memory) was:

I am alive. (x4)
And who is this aliveness I am? (x3)
I
s it not the holy blessed ONE.

http://davidzeller.org/aliveness/ – You can hear a snippet of the song from the first track of the CD on the website.

Once Aryeh decided that he wanted the words ‘I am alive’ (in Hebrew) to be on his tallit, then it only seemed natural to use his tie-dye flat sheet. Unfortunately, it took Aryeh and me years to make it happen for him, but last week we did it!!! With the help of our good friend Laurie Dietz, we were able to have the words I am alive (in Hebrew) embroidered for the tie dye tallit. And then I tied the tzitzit, fringes, for his beloved ritual garmet.

Aryeh in his amazing new tallit.

Aryeh in his amazing new tallit.

Full Circle
While the creation of the tallit began with illness, the tie-dye ultimately became a symbol of living and thriving.  Aryeh is very much alive and loving his new tallit too!

*tallit – A shawl-like garment worn during morning services, with tzitzit (long fringes) attached to the corners as a reminder of the commandments. Sometimes called a prayer shawl.

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