HAPPY BIRTHDAY TO LARA AND MY MOMMY TOO
HAPPY BIRTHDAY TO LARA
AND MY MOMMY TOO
By Murray B. Schneps
May 23, 2017
I have been thinking about my daughter, Lara, a great deal lately. Actually, one of the great blessings to me was the fact that I was researching and writing my book several years prior to the publication and it gave me the opportunity to think about and talk to my sweet girlie on an almost daily basis. I used to call her “Bunny.” She did not seem to mind. Actually, at the beginning of every May since her death on February 21, 1986, I become sad, somewhat depressed and more difficult to get along with. Some people who have noticed this automatic turn give me a wide path in the middle of February and the end of my May. I figure it out between February 21 and May 23 but I am not certain if that reality alters my behavior. My ever mourning of Lara is mine although others share with similar feelings.
I love you, Lara, and seem to have missed you for what must be an eternity.
Lara was the most handicapped person I ever knew. But she was just my daughter. She never looked funny or different to me; quite normal to me, actually. She was just my Lara, my beautiful daughter and oh so sweet. Lara could not sit or stand or walk or sit without support or hold her head upright or speak or chew or crawl or turn over from front or back or see or understand. As my friend, Linda Glenn, would say that people like my Lara were locked within her bodies and minds. Linda was always aware of that belief and spoke with them with awareness, gentleness and appropriateness to all developmentally disabled people. Not everyone can be like Linda Glenn but we can try harder.
While Lara lacked so many skills and abilities, she seemed to know a great deal about love. For me, it seemed impossible to believe that any person will not love her and see and understand her humanity.
Many mourned Lara’s death and sent condolences to her mother and I. Many others paid additional respects by attending her funeral and during the Shiva period. In spite of the fact that Lara could not do any of the things I listed, a large crowd of family, friends, parents and those in the field of the developmentally disabled attended the funeral and Shiva. Most those attending understood and accepted that Lara was one who inspired others and received and dispensed love. She was recognized as a force of energy that drove others to tremendous success from 1975 through 2005.
Lara was mourned because many had a sense that their own humanity was diminished at the moment of Lara’s passing. She was simply a member of the class of human beings.
Since Lara’s birth I have wrestled endlessly grappling with G-d. Why? Why was my darling daughter sacrificed by G-d to lead and be the face for a new strategy and sacrifice her for the cause? If Lara was part of a plan or scheme arranged by G-d then was his mother and I selected to march hand and hand with Lara and our other children. If so, we were a perfect pair to be considered. Was it fate, a plan or plain happenstance? I have no idea but cannot reject either possibility.
My late wonderful mother, Hannah Kandel Schneps, changed her birthday to May 23rd in order to share her birthday with Lara. My mother was so affected by Lara’s birth that she decided to stay as close to her as possible and shared Lara’s birthday with her. In the meantime, “Happy Mother’s Day and Happy Birthday to You Mom.” I love you. I hope that you and Lara are waiting for me.
With my mind roaming free, I conjured up thoughts of a family I met at Willowbrook. The parents had three or four children and felt that each child was a blessing not a burden in spite of the fact that all of their children were severely or profoundly developmentally disabled; two of their children resided in Willowbrook and the other, or others, lived at the family home. The father was an orthodox Rabbi who wrote an article about his experiences and beliefs regarding his faith and children. In truth, I could never have written such a beautiful and loving article as the Rabbi wrote.
The Rabbi told me that he and his wife were happy and honored for having several developmentally disabled children. Both the Rabbi and his wife were carriers of a gene that affected each of their children. Initially, I thought that they were fanatics who intentionally disregarded the truth and facts and were ready and willing to accept all of the risks. To them, however, their children were not risks but blessed souls, souls closer to G-d than any other people in the world. Neither Lara nor the Rabbi’s children would ever hurt or attack anyone, hurt anyone’s feelings, be mean to anyone. They would simply emit and absorb love. None of those children possessed or thought a hateful, anger, jealous or mean idea in their minds. In time, I have come to understand their thoughts, reasons and faith.
An old friend of mine who is an Orthodox Rabbi informed me that the Talmud (the written law is an elaboration or interpretation of the written law). The written law is the Torah. The Talmud delineates three entities that are pure, to wit: G-d, His Angels and the soul of man. The Talmud re-elaborates of a special purity described as a child in utero having an unsullied soul. It is my belief (and that of both Rabbis) that like the child in utero every developmentally disabled person possesses an unsullied soul.
If every parent of a developmentally disabled child believes its child is entitled to which it needs and requires, rather than feel discouraged, diminished expectations and underestimating their children, certainly they would feel stronger, demand more loudly and refuse to accept less, saying, “no.” That is a winning strategy so long as you do not back-off.
In Chapter 37 of by book, “I SEE YOUR FACE BEFORE ME,” I offer, A Few Words To New Parent, at number “11.” as follows:
11. The fight will never end as long as your child is alive,
no matter how excellent things may be at any one time.
Changes in the economy and the political atmosphere
Can easily diminish services and support networks.
Please remember my daughter, Lara, with sweet thoughts of love and the happiest birthdays. And be strengthened for you and your children through Lara.
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My next column will appear on June 13, 2017