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Posts Tagged ‘brain surgery’

Note: I will be Counting the Omer for a total of 49 days, from Passover to Shavuot or from Slavery to Freedom. For many, this is simply the Counting the Omer; for others, it is a tool for exploring the kabbalistic teachings in an organized way. For me, it is a time to actively reflect on my Journey Towards Wholeness. The more I am whole, the more free I will become.  [http://t.co/dBPYjDxSGj . . . .]

Accepting Our Scars

A Personal Story:

In January, one of my dogs bit the tip of the other dog’s ear off; nothing like a dogfight  to alter what is.  Unfortunately there are a lot of wounds from that day, but I want to focus not on ‘the wounds’, but on some lessons learned post dog trauma.

Since that dark day in January, I have found myself worried about Maddie and her spirit, much more than necessary. For a time I mourned Maddie’s ear. At first, it was because it was bloody and sore; later it was healing and sensitive; and then one day it was fine. Maddie stopped responding to the injury (or is it the chomping?); I could touch her ear without receiving a pain response. Yay!

On the day that I first noticed this, I turned to Aryeh, my older son, and lamented that her ear will always be missing a part of it.  With that he looked at me sort of cockeyed and ask, do you mind my scar? I have to share that the question made me squirm not because I was guilty of feeling uncomfortable with Aryeh’s scar following brain surgery, but because I thought he was ludicrous.  I love Aryeh’s scar; it is a symbol of his fight for life and his ultimate thriving. His scar symbolizes one of the most profound gifts I have ever received. My son’s health restored and survival after years of critical health.

Aryeh and Dovi - imperfections together for blog

Since the day of that conversation in early February, I have looked at both of the creatures above with such immense gratitude for them being exactly how they are.

The conversation also forced me to look inward. How do I perceive physical wounds, body disfigurement, emotional challenges? How do I see the reality that surrounds me? How do I perceive my own blemishes or imperfections? The last question I will delve in tomorrow for my Omer Reflections.

So here’s the truth, I generally accept all people for where they are. Dogs too! But I must have a quiet voice inside of me that was challenged that day. It is important to note it and quiet it. And it is always important to watch my thoughts and what I actually say at any given moment. Words do matter and they have a chance to impact how we think and how we make others feel.

What a blessing to have both Maddie and Aryeh in my lfe!

May we all have a chance to find the beauty in each and every person, wherever they stand.

With love, light, and blessings,
Chava

Aryeh and Maddie on bed May 2015 Aryeh and Maddie in Snow Winter 2015

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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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“There are things known and there are things unknown, and in between are the doors of perception.”
Quote by Aldous Huxley

I am an optimist.

By nature, I find the good in bad and strive to rise above whatever shit comes my way.  I also notice the rainbows after the storms – both metaphorically and figuratively.  I love life and I tend to make the best out it.

I don’t usually kvetch, whine, about human nature, but tonight I will.

So many well-meaning people feel inclined to tell people how to feel or how despondent they should be when difficult situations occur.  And guess what, none of them enlightenment; they need to be given room to feel exactly how they feel. That goes for me too! 🙂

Years ago, my seriously ill son was heading into his second brain surgery when he had a reaction to the lights and sounds of pre-op.  The lights and sounds physically and desperately caused him pain; in fact, his pain was beyond anything anyone expected for the then 14 year old Aryeh.   At one point, after unexpected hours of trying to prep my son for surgery, a doctor turned to Aryeh and said, “I need to give you a shot, but I promise you it won’t hurt.  Really.  I promise.”  At that, Aryeh started screaming, “Don’t tell me what I will or won’t feel; you don’t know.” To my amazement, the doctor responded beautifully when he said, “No, I don’t know. And I have no right to ever tell anyone how they will feel.”  Instantly, Aryeh calmed down and allowed the doctor to again explain what would happen while sharing how he may or may not feel, but not how he would feel.  And with each word, the doctor spoke with integrity and in the end, Aryeh told him how it felt.

From that very real life experience, I learned never to tell someone how they feel.  When I meet someone who has lost someone they loved or has been sick or whatever, I do not make any assumptions. Each and every one of us handles pain and sadness in our own unique ways.

At this point you may be wondering why am I sharing this now?

Many of you know that the last year has been often overwhelming and sometimes just down-right painful.  Under-employment, Unemployment, loss, and . . . .  well I am sure each person who knows me will have an opinion of what my year must have felt like.   But, I want everyone to stop telling me what I must feel or how hard it is or was.   Instead, take a moment and listen.  If you want to know how I feel, let me share it with you.

In my heart I know that nearly every person who is telling me how they think I am is actually sharing their empathy and how much they care.  But my challenges are my challenges; your challenges are your challenges.  Let us both listen to each other and share what is in our hearts.

While I know that I have been having some hard times; I have also found sparks of light in the darkness.  At any given moment, I may feel anxious or peaceful, sad or happy, joyous or frustrated.  I don’t need someone to enlighten me on how I should or do feel.

Each of us navigate life in the best way we know how; we all see those realities through our own lens.

Someone obviously thought this was a congested area; I saw it as an oasis of solitude.

Someone obviously thought this was a congested area;  I saw it as an oasis of solitude.

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RIP Zach Lederer. RIP Superman Sam.  RIP Liv Wise.   RIP So Many More. . . . 

In the last few months, amazing young people with so much life in front of them lost their struggle for life.  Brain cancer took their last breath away.  (Correction: Sammy died of refractory acute myeloid leukemia another form of cancer.)

Remembering. . . .

While I did not know any of these beautiful souls; my heart crumbles with each and every loss.  My entire being feels the loss and then remembers how much our family once suffered as we fought for Aryeh’s life.  Yes he not only thrived, but survived in spite of losing most of his teenage years to illness, a very large (6.5 cm all around) arachnoid cyst on the right temporal lobe of his brain.  Many sleepless nights, everlasting tears, intense pain, and two brain surgeries later, I still never go a day without remembering what happened.

Aryeh at the Kotel Summer 2012 - Seeing this photo touched me deeply.  At one time, the possibility of Aryeh thriving would have been a dream. . .. .

Aryeh at the Kotel Summer 2012 – Seeing this photo touched me deeply. At one time, the possibility of Aryeh thriving would have been a dream. . .. .

As a mother, I recall the sleepless nights, the fear of loss, the stress on our family, the financial realities, and the agony my son faced every moment of his life for over 3.5 years.  I never questioned why him, but I did always pray for his pain to cease in any way it could.  I hated seeing Aryeh in pain; it nearly destroyed me.  There was nothing I could do; sometimes it felt like no one could help. Eventually one special doctor made all the difference.Any time a loved one has to watch a child suffer is profoundly horrible.

There are no words to express the darkness that looms with each breath.  Even as you hope all will be ok, fear of hoping can be paralyzing too.  Each of us that have faced serious illnesses knows that sometimes there are no tomorrows.  Since March 2007, I see the world through different eyes.  I fear loss, but almost never forget to live fully.  While there is no such thing as a given, nearly every moment in life is precious.

Each of the losses above have flooded me with memories of Aryeh’s journey.  The journey to health from serious illness sucks and yet we still get to choose (mostly) how we navigate our journeys. All I can say is wow as the tears run down my face. My hope is that brain cancer and all serious illnesses find a cure. No one should have to endure this pain and/or this loss.

Remembering. . .

My heart goes out to Lederer, Sommer, and Wise families and to every family that has ever had to navigate a health journey.   Losing  is the worst.  May the souls of their loved ones be at peace; may their memories be a blessing for good.

For more information on the amazing young people mentioned above:

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Life happens.

One day you are working and the next day you working half-time or sometimes not at all.  For those of us that live in financially challenging times, we might be blessed with what we need, but with no extra.  Some of us are blessed with financial cushions and some of us might be cushioned with a tight budget and  little or no savings.  These scenarios here are good ones; there are many others who really do not have what they need in life.

Melodramatic?  Nah. . . .

Today, I am facing a new reality.  Effective January 20th, I am working half-time and will therefore lose my family’s health insurance.  The good news is that I will have a half-time job; the bad news is that I will not have enough to support what I have previously considered to be essential.  Health insurance will become a luxury item.  Not even the Affordable Healthcare Act can help.  As long as I don’t have the money, I can’t afford the insurance.

photo (1)

The membership at my institution has declined and enrollment in my school has been affected accordingly.  With that in mind, my employer is making choices on how to manage their tightening budget.  Life happens.  So starting next month, my family will not have health insurance until I find a way to afford it.

This weekend, the reality of no health insurance slammed into me like a ton of bricks.  

  • Dovi  woke with viral conjunctivitis and ached all over.
  • Aryeh pulled out his back.

Fortunately, everyone will be fine, but what if Aryeh needed another brain surgery or Dovi became unable to walk again?  If those things happened, our family would become a statistic.  We would be one of “those people” that have caused the American people to cover our medical costs.  And my guess is that if the need arose, we wouldn’t be able to demand the care that ultimately saved Aryeh’s life.  No second opinions . . . no third opinions. . . . We would at the mercy of those that cared for the uninsured patient.

As someone who is still paying for some medical expenses that are a result of my older son’s health crisis, I am acutely aware of how quickly our health can be lost.  Sometimes we see sickness coming; sometimes we don’t.  The bottom-line is that few of us have the means to handle what our family was forced to handle when my son Aryeh needed two brain surgeries during his teenage years followed by countless days, months, and even years in bed.  The blessing is that our friends and community created a fund to help cover many of the costs that insurance did not.

So, as I sit here this morning feeling anxious about the impending lack of health insurance coverage over the coming weeks or months, I am also aware that if luck will have it, my family will find a way to manage with whatever happens.  Already, friends are trying to help me find a way to supplement and replace the the lost income – all ideas are welcome!

My hope and prayer is that all will ultimately be good for my family and that a day will come when health insurance isn’t a luxury for any human being.

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Sabino Canyon's Road to Blessings

Sabino Canyon’s Road:        One Step at a Time

In the last third of 2007, my son Aryeh needed to have two brain surgeries in order to live.  The years that followed were some of the worst years of all of our lives.  There is no way I can describe accurately what we faced or how we were able to sustain ourselves, but we did.  We survived and ultimately after over three years of hell, we thrived.

In the months, prior to Aryeh’s surgery, he suffered with horribly debilitating headaches, inability to undress himself easily, and a very poor sense of his body.  Daily tasks took the wind out of him and he often lacked the ability to take care of himself as a 13-year-old boy should.

His illness came quite literally out of nowhere.  He was a well-adjusted teen, loving his school, and thriving emotionally.  At the moment, we thought Aryeh was the happiest he had ever been, our lives crumbled and his life was not a given.  Nothing in life was ever to be a given again.

The good news is that nothing surprises me, but sometimes the wind takes down my sails for a few minutes, days, or weeks.

About a month ago, Aryeh had an earache; it has never gone away.  And then his head started hurting at first mildly and then excruciatingly.  At that moment, I literally became paralyzed with fear.  How could my son hurt again? How could he face more headaches, just as he is getting ready to begin Community College?  In truth, I didn’t know what to do.  Last time, we went through hell, it was a dark time of our lives and we had to advocate at every turn.  Doctors seemed almost clueless about what to do to save our son; some even were stupid.  In the end, two surgeries later, a 6.5 cm + arachnoid cyst was removed from his brain in a painfully long surgery.  He survived.

And over the last three weeks, Aryeh started to be plagued with some of his previous neurological symptoms (although they have lessened significantly in recent days).  Sigh.  While he is allowing me to blog about this, I will refrain from sharing details.  The good news is that an MRI was fairly good; although the doctor was perplexed by what the right side of his brain looks like.  Two brain surgeries and a filler to replace the location of the cyst, makes for a funny looking brain.

With each passing symptom, my heart dropped and I found myself unable to function outside of work.  Work allowed me to function somewhat, but fear kept me from eating, sleeping, or even connecting with people in any meaningful way.  I had to go to a silent place.

Today, I am more hopeful, but still scared.  Fear can’t guide this journey.  While all health journeys feel daunting, there is one lesson that crosses all boundaries:  You can only navigate this journey by taking one step at a time.

Isn’t this the truth for everything we do?

If you pray or vision, please keep Aryeh Yaakov ben Chava in your thoughts and prayers.

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Being in Tucson has been great for my spirit.  I notice the sunrises and the sunsets; the moon calls to me each and every evening; the mountains bring tears to my eyes.  I am home.  And reality still beckons me; I am in a new place with amazing people and still I feel alone.  It takes time to build relationships and to feel safe when you work for a community with people that are also becoming your friends.

Fortunately, I am blessed with a spirit that makes friends wherever I stand.  So I am never completely alone, but sometimes I feel that way.  How can someone who doesn’t know me understand my heart?  How can people understand the pain of my past or even the beauty that exists inside of me nearly at every moment?  I am unknown.  No one really knows my soul in Tucson, but they will if they watch me long enough.

Well yesterday, I became crushed and that pain stayed with me for over 24 hours with lingering pain that has absorbed me throughout the day.  Rational I am not, pain surrounds me on an cell level. I am in mourning and it goes against every grain of my being.  The good news is that in this moment the darkness is NOT penetrating me in this moment.

For those of you that know my loving and happy demeanor, I am sure you are wondering what caused my meltdown, what  caused my heart to feel like it is shattering.

Yesterday, I realized that my sukkah was gone.  To many of you , you might be wondering what’s the big deal.  I am so not materialistic; simplistic living is a practice I hold so dear.  But our sukkah, that was a sign of hope for our entire family when we were struggling with Aryeh’s life.

Five years ago, Aryeh needed to have his second brain surgery and we really weren’t certain that life exist beyond the corner.  We had hope, but only because we had no alternative.  No one wants to face the loss of a child and yet it was a possibility for us.  My son was faced with a life and death struggle that was crippling for our family.

We had little money, yet we decided to splurge for a beautiful new sukkah for all of us.  Our hope was that Aryeh would live, but in all honesty if this was his last Sukkot holiday, we would give him the most precious Sukkot holiday we could.  Shortly after the first days of the holiday, I traveled across the country with him for the surgery that ultimately saved his life.

Losing our sukkah in the move has devastated me.  And yet, it makes no sense to me because I now have my son and I am not materialist, but life doesn’t always make sense and  that has to be OK for now.

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