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Archive for May, 2011

Aryeh’s graduation rocked my world and brought joy to my soul.  Not only did my son graduate high school this weekend, but he is also a thriving human being in every way.  There are very few things in life that are a given; no one knows what tomorrow will bring. The good news for Aryeh is that while his life has had many periods of drama and health challenges, he has always found the endurance to forge forward and persevere in every way.

For seven years, my son went to a democratic school called Fairhaven School in Upper Marlboro, Maryland.  The school nourished his spirit and made him hungry to live actively in the world around him.  The entire school environment empowered Aryeh and his fellow students to thrive as individuals.  There are quite literally no words that can accurately describe the gratitude I feel for the Fairhaven community and the remarkable staff that has touched Aryeh’s life through the years.

Miracles happen at every turn; hopefully we are blessed to see the miracles even as we deal with the trials and tribulations of life.

Aryeh’s existence was filled with emotional drama from the beginning; our son’s survival was not a given.  He was born with 12,000 platelets per microliter of blood, but the number quickly dropped to 3,000 platelets per microliter of blood.  If my memory is correct, most of us are born with 150,000 -250,000 platelets per microliter of blood at birth.  With a low platelet count, he also suffered from severe bruising throughout his body including his brain. The monitors that covered his body only marked the tedious passing of time; they would have never saved him.

Doctors studied Aryeh for well over a year before they discovered that no other child had ever survived the specifics of his birth condition.  And not only did Aryeh survive, but, he thrived in every way!!!  This has been a reoccurring theme of his from the very beginning.

For many years, Aryeh life appeared to move in a healthy, normal trajectory. And then as a young child, something occurred in Aryeh’s development and he failed to thrive as educators, neurologists, etc. thought he should.  A leading neuropsychologist told us that Aryeh was wired differently and we should never expect him to thrive as a self-sufficient adult.  Well without going into too many details, I am so happy to know that the doctor was WRONG!!!!! Everything he told about our son’s development was WRONG.  (For more info, read part 1 of this blog http://wp.me/pthnB-5v)

Raising Aryeh was not always easy, but once we got through a few really challenging years, life worked well.  Since Aryeh could articulate his thoughts easily, as a family we were always able to get through the hard stuff.  BTW, the neuropsychologist also told us that Aryeh wouldn’t be able to communicate as others.  The good news is the doc was WRONG!!!  Michael and I always believed in Aryeh and his ability to thrive.  As parents, we didn’t know what it would look like, but our job was to keep on moving forward!!! So we did!!!

Aryeh was delayed in some ways, while he soared in others!! I loved watching his mind work and his world reach new heights until hell struck again.  At 13 years old, in March 2006, our world spiraled out of control.  Aryeh’s world was engulfed in pain, he couldn’t function, sometimes he couldn’t walk, he had trouble physically (mechanically) getting dressed, and his entire body was absorbed with pain.  Over the next 5 months, we consulted with many doctors, each telling us to do something different.  In order for Aryeh to survive, brain surgery was a given, but we had so many opinions to navigate.  Meanwhile, we weren’t sure that Aryeh would survive this challenge, a 6.5 cm cyst in his brain.

The next three years were filled with darkness and fear at every turn.  Aryeh was suffering every step of the way.  Two brain surgeries and multiple complications brought him little reprieve from pain.  At 15 years old, we found a doctor that brought life back into our son’s world.  We finally found a doctor who knew what Aryeh needed and gave it to him.  The results took six months to start working, but at least we had glimmers of light during this part of his journey.

The time-line during the three years of Aryeh’s illness is a blur; I guess timing doesn’t matter so much.  We were filled with so many gifts through this journey.  We had amazing friends, Fairhaven School Community, and Adat Shalom Reconstructionist Congregation.  We were surrounded by love, but we were still very much alone.  Unfortunately that is the reality of serious illness or at least it was for us.  The good news is that we made it through the rain, the horrible torrential rain that lasted for so many years.  Today we can easily celebrate life, all of our lives.

Aryeh’s life is a gift in every way!!! I can’t believe how lucky we are to have Aryeh in our lives and how he helps many who know them become more thoughtful individuals.  Whether he is keeping the news in the forefront of our minds or perhaps the individual rights of modern day slaves, Aryeh cares about the world around him.  In school, Aryeh became an extraordinary member of the community.  As tribal death clerk, he cared for the dead animals that were found on campus; and as the Assembly president, he showed his love for the entire school community.

Aryeh was an eloquent speaker during his graduation!  He was thoughtful and prepared with each and every word he spoke.  He prepared his speeches, crafting each and every word. (I wish his neuropsychologist could have seen him.)  When he spoke about his friend Isaiah, every person in the room saw Isaiah’s beauty!  When he acknowledged others for helping him move on his journey, it was easy to feel the gratitude through Aryeh’s eyes.  One of the most touching moments happened when Aryeh thanked his little brother Dovi for putting up with him during the years of illness, many had to wipe their eyes when he ended his remarks with “I love you Dovi”.

For each of us learning takes a different shape.  I am not sure where Aryeh’s journey will take him, but I am so profoundly grateful and happy to admire my ‘little’ boy as I do.  He is amazing as a person who never forgets that he is part of a larger world!!!  May Aryeh be blessed with time to make the world better because of all that he has done, continues to do, and will do in the future.

Aryeh has taught through example that though we don’t always have a choice on what life brings us, we always have a choice of how we travel on that path.

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He’s My Son – part 1

(Note: This was originally written in August, 2000, a very important sequel to this will be posted later today or early tomorrow.  Aryeh has given me permission to post his story.)

“Your child is wired differently.”  Those were the words spoken to me by our son’s neuro-psychologist.  What does that mean to me as a mother?  Does it mean that I struggle to be a good parent? Yes, it does.  I struggle with how to love my child when he tries to hurt me, I struggle with how to hold him when he is being destructive, and I struggle on how to talk to him when he speaks with hateful words.

I practiced and still practice attachment parenting.  I nursed my son for longer than most in our American society, I had my child in the family bed until he left on his own, and I kept him close to me until he wanted some freedom.  All in all, I practiced non-coercive parenting, which means that I didn’t push my child to be any thing he wasn’t able to be.  I listened to his vibes and found out that he was an easy child until one day I woke up and realized my child had changed.

Did he grow resentful when our nursing relationship stopped? Did I not love him enough?  Should he have been the center of my world forever?  Did I make a mistake when I had another child?  What did I do to hurt his little soul?  I can only imagine what is going through his little mind when my now 7 year old struggles with how to live an emotionally sound life.  Could I have done something differently?  I don’t know, but I do know that he deserves the best care and love that I can give him.

Aryeh’s life is a complete miracle; he was born with barely enough platelets to keep him alive.  He survived and after six weeks of life started to manufacture his own platelets.  As a first time mother, I found it overwhelming.  I felt frightened and alone.  He was my angel, but I didn’t know what kind of life he would lead.  As he grew, I was astounded at how normal and healthy he was.  He did things all during the normal period of time and he was happy.   I couldn’t believe I could be so lucky to have such an easy and beautiful child.

Today, Aryeh isn’t so lucky.  He struggles how to learn and how to control his emotions.  At the same time, Aryeh is an incredibly insightful person with a fantastic imagination.  He teaches his friends how to improvise and use their imagination.  Fortunately, he has many more good moments than difficult moments.  But when the difficult moments come, there is nothing that can calm him down until his body is able to relax and return to a gentle place.  It is so tough to stand by and watch him come to terms with his anger.  I want to hug him, love him, and show him how to free himself of his pain.  But it isn’t so easy.

When did he change?  At about 3 ½ years old, his motor skills stopped progressing like his peers.  At about 5 years old, I noticed that I had to prepare him for everything.  But I always believed that Aryeh marched to a different drummer than those of his peers.  That was OK, I did too.  I let Aryeh guide me on my parenting and he did a great job.

Looking back is difficult, but somewhere between 5 years old and 7 years old, my baby changed.  I wasn’t able to comfort Aryeh with a simple cuddle; I wasn’t able to speak soothing words that warmed his heart.  I couldn’t give Aryeh what he needed to be happy.  A mother’s love wasn’t enough. I wasn’t enough.  My little boy with the angel eyes needed more than I could give him. That realization has left me with a painful pit in my stomach and emptiness in my soul, but it has also empowered me to ask for help.  I had no choice.

In the beginning I began using alternative methods of healthcare such as chiropractic and homeopathy to help keep Aryeh focused.  I still believe in alternative methods of health care, but I also believe that the alternatives can’t give him everything he needs.  Both alternatives that I used have helped Aryeh tremendously, but I still need more help and he needs more help.

Today, I am learning how to use the systems that stand before me.  I am trying to learn from the experiences of other parents and professionals.  At the same time, I’m fighting my innate fear of bureaucratic systems.  I think out of the box and strive to keep my baby from perpetuating in the box.  But my angel has needs and I have to help him meet those needs and retain his spirit.

I now look forward to meeting the new professionals in his life: special educators, speech/language therapists, social workers, psychologists, and who ever else needs to join us for our ride.  He was already in the world of occupational and physical therapy, so now he will have even more folks to watch over him.  My previously homeschooled child will now become a student in the very technical world of special education.  I pray that he will learn to smile in the world of IEP (Individual Education Plan).  I quietly wonder whether these professionals will be able to keep his essence in mind or will they stand behind their prejudices and their realities.

The majority of our culture doesn’t have a clue how attachment parenting really works.  They believe it is a sign of weakness and abnormality in a dysfunctional family.  But if those same professionals saw our family flourish and grow, they would have their mouths hanging open in awe.  The neuro-psychologist looked as though nursing Aryeh for a long time was a real issue when in reality it probably helped Aryeh to live as a self assured little guy when the odds were stacked against him.

How do I reconcile all the issues of my parenting style with that of the technical world of special education?  I am not sure if I ever will.  The one thing I know is that I am my child’s advocate and I am the only one who truly keeps his interests at heart.  I also need to remember that everyone wants to help Aryeh succeed, no one wants him to hurt.  To an extent, I will need to let other people into our world; I have no choice it is for Aryeh.  He comes first.

 

 

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Sunset near Pupukea Hawaii; Photo coutesy of  Kathleen Kendle

Sunset near Pupukea Hawaii; Photo coutesy of Kathleen Kendle

Note:

I am not a poet, but sometimes I try.

I love the people in my life intensely.  My prayer is that I have been unquestionably clear about my feelings.  I am intense, but not necessarily melodramatic.  So when this poem came to me, the words felt a bit surreal.  The words initially came pouring out to my sons, but upon reflection, I realized that they were meant for anyone that has been a strong part of my life, for anyone I love.

Sometimes life ends without warning; often words are left unsaid.

Many of us have lost people unexpectedly; it happens and it sucks the wind right out of you.  My hope is that if my time ever comes unexpectedly that those I love will feel it even when I am gone.

Below are the words that come from my heart.  Gd willing I should live for many years to come, but when the time comes that I take my last breath, this is what I want my loved ones to know.

Sometimes life gives you no tomorrows

Know that I love you wherever I may be.
Always treasure that reality.
Life comes and goes.
And sometimes it goes without warning.

Cry the tears that a broken heart leaves.
Scream out your sadness to the world, the universe or Gd
But never question the love that was part of our every interaction
I am always in your heart.

Sometimes life gives us no tomorrows
Allow yourself the room to mourn
Move forward knowing I am always with you.
What we had can never be taken away even in death

Some tomorrows never come
Don’t forget the good that I did
Learn from the less than perfect attributes of my essence
And become the best you that you can be.

I have always loved you
I love people just for being who they are
Finding light in the darkest of moments has kept me thriving as I have.
Chanting, writing, dancing, and praying made me into the person I was.

Don’t be afraid to tread when you can’t really swim
Dance in the rain and find the rainbows when darkness prevails
Find the good in every challenge that crosses your path
And always soar and reach for your best.

Know that my life is with you no matter where I stand.
Sometimes life gives you no tomorrows
But I will still always be where you are now.
I love you.

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Life has taught me so many lessons.  With each experience, I find myself looking at both the gifts and the challenges.  When I am really self-aware, I know that growth comes from both sides of the spectrum.

In Judaism, we have a tool for marking sacred moments or what I call shehechiyanu moments.    The shehechiyanu is a blessing that is said to mark:

  • The beginning of a holiday
  • When a ritual is observed for the first time during a year, or for the first time in a person’s life
  • When something happens for the first time (for instance, when the first snow falls in a season)
  • When food is enjoyed for the first time in a season (for instance, when fruit comes into season)
  • When you wear a piece of clothing for the first time.

I also choose to say the shehechiyanu, when I note something precious or sacred happening and when I experience something I don’t frequently note. Rainbows bring tears to my eyes; double rainbows make my heart sing.  A beautiful piece of artwork touches me deeply and a gift of nature leaves me speechless.  Yesterday, I saw the branches of a tree in a unique pattern, for that I recited shehechiyanu.

Lately, I have found myself saying shehechiyanu when I hear a beautiful song or see children playing.  Each and every moment counts and it is my hope that I treasure each moment and mark many of them with the blessing.

Blessed are You, Lord our God, Spirit of the universe, who has kept us alive, and sustained us, and enabled us to reach this moment.

Within the last couple of weeks, I found myself struggling through darkness in one area of my life.  The stress brought me down and I had a hard time embracing the challenge and finding beauty anywhere within my realm.  When I realized that I needed to find a chant that would propel me in a healthier direction, I asked one of my holy chant sisters if she could suggest one.  I knew that chant could be used as a tool or medicine to guide me through this challenging doorway.  She gave me the most precious gift when she said that she would think about it; within a very short period of time she suggested the Shehechiyanu chant by our teacher Rabbi Shefa Gold.  The power of the chant helped me to again find balance within and notice the world around me too.  The link to Rabbi Shefa’s Gold is:

http://www.rabbishefagold.com/Shehechiyanu.html

Shehechiyanu reminds me to receive the gifts of life.   Regardless of what is happening, sacred moments can be found.

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