This week my blog is dedicated to one of the bravest girls I know, who managed to influence hundreds of adults, even from the confines of a wheelchair, and with only a bare ability to speak; and who, after 18 years, needed to return her soul and leave us. Ruchama Chaya Tova, of blessed memory, passed away yesterday, a few months after her 18th birthday. She is an example of the struggle, triumph, and heartbreak that those families who raise children who are born with serious illnesses must face.
The doctors, in the beginning, were not optimistic. When she was only a few months old, her parents were told that they shouldn’t waste their time sending her to therapies and rehab, because she was most likely just going to be a ‘vegetable.’ Ruchama graduated with honors in a regular track from an elite girls’ high school. The doctors warned the parents early on that she would never speak or communicate effectively. I’ve had many conversations with her over the years. The doctors said that most likely Ruchama wouldn’t live to adolescence; she made it to the cusp of adulthood.
To say that this road was straightforward and clear would contradict what we know to be true. Her parents’ dedication to give their daughter a ‘normal life’ despite the wheelchair, the endless hospital visits and hospitalizations, the financial loss, the emotional hardship, came at the sacrifice of a myriad of life’s other possibilities.
Year after year, Ruchama’s mother again had to declare to well-meaning professionals that she would not put her daughter in an institution, ever. I am sure it is that dedication that extended Ruchama’s life.
I would like to end this post with pithy, helpful suggestions to those parents who face the extraordinary task of raising a child with special needs. I want to leave with you all with good advice, and perhaps, on another day, I will. But today, I can’t think that far ahead. Even though I’ve been prepared for this moment for 18 years, I keep thinking about her smile, and how every time we saw her, my husband made that same silly joke, and she would give him that big silly grin. I see her on her special bike that her parents bought her at the expense of other items that they needed. I see her excited about watching her favorite shows on TV and showing me her new hospital bed.
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