Two years after Leta was born, and many sleepless nights later, we arrived in Philadelphia with a partial diagnosis of Leta’s special needs and we started trying to imagine what it was going to mean to raise a special needs child.  We knew by now that she had Pervasive Developmental Delay, lung disease, was non -verbal and had moderate retardation.  But none of that told us what the journey of loving and caring for our special little girl was going to look like .

One day, she was due to go in for a hospital procedure that required her being put under anesthesia, and we were told that because of her lung disease the procedure could be quite risky.  I was terrified and went in search of a massage to calm my already shot nerves.

I found a place in Chestnut Hill and asked if  they had any last minute cancellations which they did. So I was led back to a room and met my therapist whose name was Beth.  She asked me the typical questions and told me to lie down on the table.  I took a deep breath of relief.  A few minutes later, she walked in and gently  began massaging  two pressure points on either side of my ears.  But then she abruptly stopped.  And she asked me a question:  ” I don’t normally interfere, but someone wants you to know that it is not your fault.”…..and she repeated herself. .” I’m supposed to tell you that it’s not your fault.”  This may seem strange, but I knew immediately what she was talking about and I burst into tears.    I cried like a baby for ten minutes and then thanked her and left.  I didn’t even get a massage that day, but I felt I was  spiritually healed.

For those two years since Leta’s birth, I had held on to tremendous guilt that I had done something wrong during my pregnancy that caused Leta to be sick and not have a healthy chance at life. Maybe I ate bad food, or caught a virus, or drank a glass of wine, early in my pregnancy,that I shouldn’t have.  My guilt was overwhelming…. I carried this child, she was part of me, and I had failed her.   But in this strange encounter, with an American Shaman in Philadelphia, of all places, I was  released from my belief that I had somehow caused Leta’s special needs….

Was this some kind of divine intervention?  Beth explained to me that she had a gift for reading people and she was studying with North American Indian shamans who channel the spirit world .  She explained that she had been forbidden from sharing her visions during this period of study,  but she felt she was channeling something too important not to share it with me.  Was there a greater destiny for Leta that I didn’t understand yet?  I like to think so, because without it, I would not have had the strength to go on and give her the care and love that she deserved.That day, I finally began my journey of  accepting and loving Leta.   I was never going to get an explanation of why my child was given these unfair handicaps.  Leta was clearly going to be my teacher in this life and give me other answers to more important questions.  And even though she has needed me to feed and care for her medically, she  has  nourished my soul for 16 years.Leta can not talk but she offers unconditional love.

Leta can not live without the care of doctors and her daily medicine but she lives within every single person she meets.  She is unforgettable.
Leta is curious and will walk up to anyone that interests her.  The shallow shun from her, the enlightened embrace her.
Leta runs with her heart, her feet sometimes slowly follow.
Leta is willful and tiring but she is also funny and engaging.
Leta is loyal.  She will always be your friend.
Leta is smart, she just has fewer opportunities to show it.
Leta couldn’t walk until she was 3 years old, but she was able to say “I love you mommy”, much earlier.
Leta reminds me  what a real friend looks like.

When Leta turned 8, we discovered Camphill Special School and we were invited into a world that we never thought possible for our little girl.  It was a place that embraced all that Leta offered.  It was not easy sending Leta away to school.  We had so many questions about the quality of her care and if she would be given the love she received at home.  But the truth is, Leta thrives at Camphill because her life is simpler, healthier, less frenetic, more predictable and more attuned to Leta’s needs.

Time marches on at Leta’s pace at Camphill. It is unhurried and manageable. And Leta has fun.  She goes for long walks, enjoys lots of music ,dance and art.  But she also has learned to be a responsible member of a community.  She is given jobs to do, like mucking out the horse stalls or setting the dinner table every night.  Whether it is a big or small job, Leta has  learned to take pride in her work.  At home, she is babied and indulged;  At school, she is forced to find her purpose.  And finally, Leta is loved…no, I mean, she is really loved at Camphill.  And what more could a parent want for their child.  She has found her special place in the world where she is able to create meaning every single day.  I often feel that my other kids would benefit from a life structured more like the life that Leta now has at Camphill.  They love spending time running around the school, visiting the newborn pigs , or just taking long walks with their sister, at her unhurried pace.  There is an energy that surrounds the place, that my other kids really respond to.  We may not talk about it, but it is there.

A few years ago I re-read one of my favorite books by W. Somerset Maughn.  “The Painted Veil”  In it there is one quote, that was lost on me when I read it in my twenties. “Remember that it is nothing to do your duty. That is demanded of you and is no more meritorious than to wash your hands when they are dirty.   The only thing that counts is the love of duty; when love and duty are one, then grace is in you and you will enjoy a happiness which passes all understanding.”In my care of Leta, I have had fleeting moments where I can say I have experienced  grace, but the teachers and co-workers  of Camphill live grace, and breath grace every single day.  They are unfaltering, as far as I can tell.  I am in awe, but grateful that I can know what this looks like even if i haven’t  reached it myself.

As the years go on, and the doctors continue to take care of Leta’s medical needs, I realize that each day that she is still alive, she is not being saved but doing the saving.  Leta is my teacher.  And so is Camphill.