Words of Wisdom For Our College Bound Children (and Kindergardeners)

My fingers are running over the computer keys, wondering where to begin. 

I can hear Aron our 18 year old and Jacob our 12 year old murmuring together. Their words are not clear, but the filtering sounds are upbeat and conversational as they rise and fall in sync and at times are spotted with laughter. The two boys are inseparable at the moment, playing Minecraft together, strategizing, building, challenging, but mostly enjoying each other's company.

This scenario is particularly heartwarming, because in a few days Aron is going to college and Jacob will be home alone. (No other siblings to divert parental attention anymore.) 

Each of us is dealing with this impending separation differently.....

Our Family's Journey With Trigeminal Neuralgia - What YOU Need to Know.

Thank you Rebecca Thorpe.

Trigeminal neuralgia is a chronic illness my husband (J) was diagnosed with 6 years ago. 

Here are 3 Things I want you to know:- 

1. Trigeminal Neuralgia  is a brutal, relentless, unpredictable disease with no permanent cure.

What is trigeminal neuralgia (TN)?

Source: Trigeminal Neuralgia Association UK  

      TN is an excruciatingly painful and debilitating condition, known as "the suicide disease."

     
 It is regarded as the most painful condition that is known in the medical world. It is more painful than kidney stones, giving birth or a heart attack.

     
 It is a disorder of the trigeminal nerve in the face which results in its overreaction to everyday stimuli, such as talking, eating and light touch.

      
TN triggers a violent, electric shock-like pain which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months.

     
 The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced.

     
 Normal painkillers, even morphine, have no effect and initial treatment with anti-convulsant drugs can have very unpleasant side-effects.

      
When these medications cease to be effective, or the side-effects become intolerable, various types of surgical procedures are carried out but to date there is no known cure.

     
 Although uncommon, children and babies can also have TN.

2. My husband is still living with a form of this disease. 

He had brain surgery 3 years ago to put an end to  his TN which was no longer responding to strong drugs of any kind.  I wrote in my updates at that time, that the surgery had successfully taken away the brutal stabbing, electrical pain that he was experiencing in his face 24/7 without a break before the surgery. Thank goodness that still holds true and we are extremely grateful for that outcome.

However TN is a dark enemy....

6 Unexpected Lessons For Life, Learned From Drying Hydrangeas!

Hydrangeas in my garden in June

I am trying to dry hydrangeas. (Bear with me! I promise to move on from flower drying.) 

 I am on my third attempt. 

The first time I thought I knew best and surmised it was just like drying herbs or roses so I hung them up side down, bound together,  on a hook from the ceiling. Not a bad idea I thought.  I imagined they would keep their shape, their color would fade a little but the individual flowers would remain open and beautiful, if a little dulled.

 It was a disaster..........

How to Meditate When You Can't Sit Still: The Ultimate Guide

Rachel Ducker Wire Sculpture

             Today, I inadvertently came up with a way to relax my brain and release myself from all my racing thoughts for 30 minutes. 

Have you ever tried to clear your head for half an hour and breathe deeply? 

Have you ever tried to stop the thoughts pounding your brain, problems encroaching your clarity and the to-do list preventing you from slowing your breathing?


 I have tried. Many times. Only to have one of three things happen......

The Guide to Thriving Beyond the Crises in your Life: 4 Effective Steps

It's not just tea that revives you

As a spouse, parent and caregiver I have been on hyper-alert for 5 years.

Why?

It’s because my family is very good at having serious medical conditions with unpronounceable names.

My husband was first diagnosed with trigeminal neuralgia in 2008. And if trigeminal neuralgia wasn’t difficult enough to say and remember, in 2009, our oldest son Benjy won the prize. 

He was diagnosed with a heart condition called Wolff Parkinson White with supraventricular tachycardia. (Try saying that a few times, very quickly.) This condition is sometimes connected with sudden death. Benjy's version of this syndrome meant that he needed two heart surgeries, between January and April  2010. 

My husband had invasive brain surgery ( MVD) for his trigeminal neuralgia in 2011. You can see why I might live on high alert!

Living on hyper-alert puts you in survival mode. You are either waiting for a symptom to show itself, in the midst of an attack, or recovering from the fallout:

Why The Duchess of Cambridge (Kate) Would Find Treatment Diaries Comforting.

How many of you keep or have in the past, kept a private written record of your thoughts and feelings?

How many of you would feel comfortable publishing your emotions and having hundreds or even thousands of people read them?

During my teens I often expressed my teenage angst in a diary that is so well hidden I have no idea where it is now!

So given my preference for privacy you might be wondering how I came to be writing a blog, especially one that expresses a myriad of emotions.( I often wonder this myself!)

5 Rewarding Reasons to Take a Risk-Why It's Worth Getting Your Feet Wet.

Here's a secret you didn't know about me. 

I really don't like walking barefoot. I know some of you hate wearing shoes but I don't like to be without them.

I wear my shoes from the moment I get out of bed until I get back in again. Yes I do take them off to shower and to put on socks, but even if it is flip-flops, I always have something on my feet. 

I don't like the feeling of crumbs (and in our house they feel as though they are everywhere)  or kitchen tile in-between or under my toes and my feet are often cold so shoes of some kind, off-set that. 

And here's another secret......

Moving from Hurt to Healing: How 1 Step Back Can Take You 2 Steps Forward

The Lily we planted has bloomed!

This morning, like every morning as I went out to the car in my driveway, I glanced at the lily. Aida and I had planted it in memory of her sister, who had died suddenly back at the beginning of May.

During difficult times, it is often hard to picture life any other way. In the heart of a crisis, serious illness, medical emergency, divorce, bereavement or job loss it is difficult to imagine that things will ever be different or better. Looking out into the future is frightening particularly if what you imagine is more of what you are living through or dare I say it, worse. Sometimes things do get worse, before they get better. 

Rarely do they stay the same. 

The Secret to Anger Management

.....without using it's turn signal

Have you ever tried to look on the bright side of a challenging situation, only to have it backfire, with you feeling more angry, resentful or frustrated?

Have you ever held anger inside you, only to channel it at some poor innocent bystander or your kids or your mom or your spouse?

Has there ever been a time when anger languished in your mind, festered and grew whilst you tried to see the positive in a difficult situation, only to find it come back to the surface when you met that situation or person again?

The first of these three scenarios happened to me just last week.

How Amazon.com is Bringing Me Comfort!

Amazon.com is having a party!      
Why? 
Because they know I am SO behind in packing my 12 year old for 4 weeks of sleep away camp that they are going to get lots of business from me in the next 36 hours! 

Sunshine and Rain-How To Live With Both.

Glancing out the window as I write, I notice the sun is glinting on the rain soaked leaves. It has been that kind of day: torrential rain splattered with bursts of humid, misty sunshine.

And it has been that kind of week in our school and synagogue community. 

With celebrations of the highest order and tragedy so deep, we cannot find words to express emotions.

6 Ways to Build Certainty in an Uncertain World.

Last week I talked about how routine brings comfort. Routines are regular procedures we create to give us structure and rhythm in our day.

This week's post explores the value of certainty in our lives. Unlike routines it brings comfort by existing outside of our life structure.


Benjamin Franklin famously said, "Certainty? But in the world nothing can be said to be certain except death and taxes.”

 I like to think there is more certainty than that in the world.......

Why Routine Brings Comfort

We had a particularly challenging week, a few years ago when my husband's parents were staying with us. 

My mother-in-law knocked on our door at 3.00 am because a pipe that had burst from the basement toilet, emitted tens of gallons of water directly into the basement bedroom where my parents-in-law were sleeping. My father-in-law in trying to wade into the bathroom and turn off the water, slipped and hurt his arm and the basement was floating in debris. 

How to Win The Productive Aging Award.

A few weeks ago I finally had to admit defeat and buy a pair of reading glasses. I did not plan to celebrate this milestone, thinking of it as the beginning of my physical demise. Then I recalled my grandmother's remarkable life.

My late grandmother of tea-making fame started to lose her hearing at the age of 28. She lived in the UK and had just given birth to my mother at the beginning of WWII. After The War, my grandfather travelled for 6 months of the year trading in precious watch parts and my grandmother was essentially a single parent for much of my mother's childhood. She dealt with her hearing problems by learning to lipread and donning hearing aids without a second thought...........

When There's Trouble Brewing... Do This.

As a Brit, a cup of tea, evokes many things: my childhood, my Dad and maternal grandmother, celebration, commiseration and friendship. But mostly it is connected with the emotions associated  with love, care and comfort.



As a child my father made and brought my mother a cup of tea to her bedside every morning. Tea was the mainstay of family food gatherings and I can picture my mother's teapots and delicious date and walnut or almond cake that always went with them in our light filled living room.

Growing up, I relished the tea my Grandmother made for me.  For a long time, I could not work out why it always tasted so special...

5 Ways to Bring Comfort in Times of Illness or Distress.

  

Aida

We all want to help people in times of illness or distress. Often it is very difficult to know WHAT to do in these situations, even though we would love to bring comfort to people we care about.

Twelve years ago when we came from Hong Kong to live in the USA, we were very lucky that Aida our Filipino housekeeper came with us.

The Astonishing Truth About Your Potential

As my boys have grown up, they have often plied me with pleading questions such as,

"Can I have an iphone?" Followed by the refrain,

"Everyone has one."


When I have questioned my kids  as to  who "Everyone" is and suggested calling round to find out, it is often only one or two friends and not the whole grade, that they are thinking about.

At times, we have all been influenced by peers, school expectations, the media and familial relationships and dynamics, for good and for bad.


As we get into our teens and young adulthood, the social perception of what "Everyone" thinks can take on larger than life proportions that can influence us positively or negatively.


The critical voices in our heads may have great bearing on our decisions. Our self-perception can be altered, according to how much store we have set by how we think others perceive us. 

WIN A BOOK and SHARE YOUR LOVE FOR READING (Competition ends April 26)

Do you love books and want to find a way of sharing that passion with others, through giving them a work of fiction for FREE?

Do you wish you had the time/motivation/ money to own and read more books, but in reality read rarely or not at all?


As you may know I am passionate about books. I wrote about how that came about in 10 Books I have Loved

How To Keep Relationships Real in a Virtual World

Last week I spoke about the power and comfort of old friends. This week I want to introduce you to Marin (Miriam), a new friend. 

We first met 2 years ago. I remembered her clearly, but she couldn't place me when I came across her again on my most recent vacation.  Her graciousness and warmth reminded me why my previous experience meeting her had been so positive.....

Jennifer Aniston's Guide to Friendship: Keep It Old

You will not be surprised to discover, if you are a regular reader of my blog or know my family, that whilst we were on vacation, someone was unwell. 

This time it was Jacob's turn      (our 12yr old). A week into the trip he developed a raging fever, that lasted five days. After blood tests, he was diagnosed with bacterial pneumonia and put swiftly on antibiotics.

As I stood in the pharmacy on that sunny Sunday afternoon, with my friend Ofra by my side straining to understand  the pharmacist's directions in Hebrew, I suddenly felt tears well in my eyes. 

I Wouldn't Choose This Lens, But It Has Sharpened The Image. Here's Why.

We are vacationing in Israel. Today we visited Machane Yehudah, the food market in Jerusalem. If you've ever stepped inside you might be wondering why on earth we would venture there on the eve of Passover, when we didn't need to shop. 

But it was precisely the chaos of it that drew us into the fray...... 

Why We Need to Stop to Admire the View.

( Please note this was previously published on my blog, when it was just a month old in April 2012 and Jonny's health details relate to that time- the message however, I think is timeless!)

As we approach Passover, I have been thinking about the story of the Exodus from Egypt, which we are going to retell next week at our Passover table. These slaves from Egypt were to spend 40 years journeying in the desert. Their goal was to reach Israel. But for many of them, the trip through the desert would take their whole lives and I wondered if  any of them ever stopped  for a minute to admire the view.

Her Majesty's School of Stress Management.

On my window sill in the kitchen stands The Queen. Grey haired, tiara in place, with a fixed smile day and night. You might be surprised that I display something that kitsch there and amused to know that she waves. 
          All day! 
Yes, my Queen is solar powered. On her handbag (purse) is a solar strip, that keeps her going longer than the Ever Ready Bunny. 
And why is she there in perpetuity?

10 Essential Thoughts to Help Us Understand How to Help Children with Special Needs: Josh's Story - Part 2

The Rubin family

Last week I posted part one of a talk by Nancy mother of Josh, a child with medical and emotional issues, and learning disabilities. She spoke to our synagogue community  about what it is like to be Josh and how his lack of a social life is one of the most challenging pieces of his world to navigate. She explained, 
Most children's weekends are packed with birthday parties, play dates and sleepovers.  Children with disabilities have very few of these.  I can count on one hand the number of birthday parties, play dates and sleepovers combined that Josh has been invited to in the last several years.  

Nancy  also talked about how parents have to be resilient when these painful situations arise. 

 ...rather than wallow in our pain, we as parents of children with special needs, stand up, brush ourselves off, and think about what we can do to make our child's life as happy as it can be.  

At the end of last week's  post Nancy posed a crucial question.

So what can we do to be sure all of our kids feel part of our community?

In this week's post, Nancy suggests 10 ways we and our children can be involved in making the world for children with special needs a little bit easier and a little bit happier.

7 Ways to Help a Child Deal with a Parent Being Seriously Sick

My 12 year old son Jacob, has been inspired to start his own blog. This is a post he wrote for it, without help of any kind. He wants adults to know how they can help children like him, who suddenly find themselves in a situation where someone they love very much is very sick and has to have major surgery. 

He also wants to bring comfort to other children by letting them know they are not alone in having these feelings. 

If you would like more information about Jacob's blog, please email me at gilly@bringingbooksofcomfort.org or leave a message for him below! -Gilly

About a year ago, my dad had something called Trigeminal Neuralgia. He had something going on with a nerve in his face, and had to have brain surgery. 

As an 11 year old child, I was scared. 

I couldn’t handle it on my own. I needed some things to help me feel better:

"Josh's Story"- A Mother's Brave Account of Her Son's Challenges, Growing Up with Special Needs

Josh on Vacation

A few months ago I wrote a post called Do you feel that  life's unfair? I received a beautiful email from Nancy telling me about the 12 years of challenges and joy her family has had raising Josh, a child with special needs. 

February is Jewish Disabilities Awareness month. This year in our synagogue (Shul) Nancy spoke to the community about what it is like for their family and what we as individuals and as a community as a whole can do to be more inclusive. 

I will be publishing it in two parts. This post tells the compelling story of Josh's life so far. In the next post I'll share Nancy's ten practical suggestions for actions we can all take to help children with special needs feel more included in our communities.

Here is her powerful story.

Breaking News: Why it's not all Black and White

This morning I watched a grey squirrel scamper, spreadeagled, headfirst down the thick magnolia tree trunk outside our dining room window. My first thought was how incredible it was that he was able to do this so effortlessly. My second was that the squirrel was just doing what squirrels are meant to do. 

For the squirrel this feat was no big deal. I am sure he did not reflect on his actions for one second, let alone the amount of time you have just spent reading about him. 

But this got me thinking about our lives and how the hum drum stuff we do without a second thought would look to the squirrel.

Parent Alert: Your Mother was Right

It's a particularly grey, bleak London day here in Potomac Maryland. The dirty white sky and naked tree branches set off against it, look mournful and resigned. 

The streets are empty and I am curled up in our living room trying to write a blog post. 

There are many things I could tell you about.

What a Crisis Can Teach Us About Celebrating.

About six years ago I was sitting at a red light muttering to myself.  

No, I did not need to be referred to an asylum. But I had been getting myself very worked up about an upcoming birthday party for my almost 6 year old. (Jacob)

The endless to do list was swirling in my head as I remonstrated with myself  about planning a party for 18 kindergarteners in my house in a particularly snowy December. As I pulled up to those traffic lights, I was stressing about the weather and the games, party gifts, food and home made birthday cake.

And while that nagging voice continued, I suddenly had an epiphany.........

A Note of Appreciation -The Ultimate Gift

My first morning of a new school year, in my first job as a qualified teacher, is a day I will never forget. 

As I was plastering the pin-boards with encouraging posters, a parent stood looming in the doorway. I don't remember the whole conversation but her final sentence is permanently etched in my memory. Having told me that she was a member of the school board and that her daughter Naomi would be in my class, she concluded sternly…

Rings of Comfort- Tokens For Remembering What's Important.

A few weeks before winter break I received an email from Cameron, my guest blogger this week. He had found my blog and identified with many of the posts, because he has been a caregiver for  his wife Heather  since 2005. Heather was diagnosed with Mesothelioma* cancer at the age of 36, after having  given birth to their only child just three months earlier. She was given tough treatment choices and after surgery and chemotherapy, went on to beat all the odds. 

Heather's story is remarkable, as is her zest for living and her determination to love the life she has. 

But so is Cameron's..... 

Snow - How to Find a New Perspective on an Old Problem.

Snowy Elstree, UK by Sara E via FB

I want to introduce you to my friend Jo who lives in England. Jo's husband is in his 70s and has had trigeminal neuralgia* for 7 years.  Jo and I 'met' when she stumbled upon my blog. We have emailed back and forth and I have certainly gained strength, insight and tremendous support from my new pen pal and our growing virtual friendship. 

One of the things we have discussed a number of times,

It's Time to Take Care of Yourself - Here's How.

Have you ever felt weary, so weary that your limbs feel heavy, your bones ache and your brain is tired of thinking so hard? 

You don't know where that feeling came from or when it began. 

You know it has been lurking, sending you subtle messages that you are so damn tired you need to stop.

But you didn't listen....

Confessions From a Hospital Waiting Room

I am sitting in a hospital waiting room (again) waiting for my son Benjy to come out of surgery (again). This is the 8th time in the last 4 years that I have waited for my husband or one of my sons to come out of a general anaesthetic, from procedures as routine as wisdom teeth removal to complicated heart and brain surgery. 

You'd think it would be easier each time. 

But no. It is not.

The Secret To Achieving More In The New Year

 

Have you wondered if this year, you have been running round in circles? 

Not really moving forward in your life metaphorically, spiritually, emotionally, professionally, academically, actually?

I ask myself these questions at the end of every year. They became particularly poignant during my husband's long illness and recovery. In this post I suggest a route forward.

What makes a "good" kind of love?

I am on holiday this week with my family, but I wanted to share this wonderful piece of writing with you, for two reasons, as many of you gather with your family for the festive season. 

Finding Inspiration in the Every Day - 7

It has been a long, life changing week here in the USA. Violence and evil crossed a line in Newtown CT, by killing many small children and their devoted teachers and school staff. We have been shaken to our core and now we are trying to find ways to move forward....

A Perspective On School Crises From the Wife of a Head Of School

In light of the horrific tragedy in Newtown Connecticut, it is hard to think about anything else. 

created by George Asencio

And yet at the same time there has already been so much written and spoken about the many tragic and burning issues surrounding it, I wondered if there was anything new to say.....

But then it occurred to me that there were some special people I did want to reflect on and they were the school staff at Sandy Hook Elementary School.

What Would You Do if You Knew You Could Not Fail?

This photo is mine. Please ask before copying

Well ........What WOULD you do if you knew you could not fail? 

Sometimes the challenges and changes we are faced with seem insurmountable. We want to do something new or change our lives in some way.

But we feel very small in the face of much larger egos, obstacles and organizations. These feelings of being unable to take on the giant, looming large, can stop us in our tracks, root us to the spot and paralyze our thinking and behavior.

Finding Inspiration In The Every Day - 6

All photos are mine-please ask before using 

There are a lot of intangible things we wish for in our lives.
Hope
Strength
Faith
Joy
Love
and
Peace                 are a few examples.

And these things become more prominent when we are faced with a life challenge that involves a loss.

Thoughtful Gifts Don't Always Have To Be Expensive.

As we said goodbyes to Thanksgiving, we said hello to good buys for Hanukah and Christmas.

Where ever you are in the world, (except perhaps on a desert island or at the top of Mount Everest), I think it is difficult to remain immune to the messages around us to buy big, buy now and buy more... Every kind of media has been hijacked by buying fever.

Finding Inspiration In The Every Day- 5

From birth we learn to respond to feedback and encouragement. From first smiles to first steps, from riding a bicycle to driving a car, we learn and gain confidence from the compliments and constructive feedback we receive for our efforts.

As adults I think it's safe to say we all appreciate a thoughtful word, comment  or thank you in a harried day.

Do You Ever Feel That Life's Unfair?

Eight years ago, my very close friend was diagnosed with stage IIIC breast cancer at the age of 39. Her 3 daughters were all under the age of 7 at the time. She went to a support group for breast cancer survivors. Expecting unqualified support and upbeat messages at the first meeting, she was very surprised by what the facilitator had to say. Her message that day, and I paraphrase, was this:-

"How the Turkey Ran Away From This Thanksgiving Day"-An Expat's GuideTo Choosing How to Celebrate Thanksgiving

Our first Thanksgiving meal experience was in Hong Kong, seventeen years ago, when we were allowed, as the only Brits to join a truly Hong Kong- American celebration.

During our 5 years in Hong Kong, we learned to make turkeys out of socks. Jonny wrote a poem about the challenge of finding a kosher turkey, when the only kosher store in Hong Kong did not have one. And we discovered that football does not always involve kicking a ball around a pitch with your feet.

Finding Inspiration In The Everyday - 4

You couldn't make this up! This is an inspirational, true story about intersecting lives.

An Expat's View - If I Can Move, So Can You! Some Tips For Success

As the world gets smaller we find ourselves with bigger opportunities in faraway places. 

Over the weekend, we met up with a British family who had just moved into the Washington DC area. They came for tea    (what else?)  and as I listened to their week of firsts in a new country: first visit to the grocery store, hunting for a rental, finding a school, buying coats for the kids etc,  it brought me back to the beginnings of each of our moves to new homes in countries around the world.....

Finding Inspiration In The Every Day-3

Last week someone suggested a book I should read.
Nothing unusual about that. As many of you know, I am a bookaholic and always looking for recommendations, as I know you are.

What was different about this situation was the person who recommended it - my 11 year old son and the book he had chosen - a children's book he thought I would enjoy.

A Patient's Top Ten Tips For Surviving A Long Hospital Stay

Many of you will remember that my husband Jonny was rushed to hospital this time last year. He had been suffering a resurgence of an extremely painful facial nerve condition called **trigeminal neuralgia that had spiraled out of control. His medications had stopped working.

The internist couldn't find new meds to control the pain.

The neurologist was out of ideas for treating it. 

And  Carol the Physician's Assistant to one of the finest neurosurgeons in the world at Johns' Hopkins Trigeminal Neuralgia center was at her wits end. 

Finding Inspiration In The Every Day-2

Even though we had days of warning about Hurricane Sandy and were as prepared for it as we could be, for millions this mighty storm took away basic things we rely on and take for granted -electricity, running water and connectivity. It damaged homes and cars and brought the trains to a standstill. 

We live less than 4 hours drive away from New York. If the winds had blown differently, we could have been the ones without power and water as we were last summer. 

Warning: Hurricane Coming! How to deal with this and the storms of growing up

From CBS evening News

With Hurricane Sandy descending on the East coast of the USA over the next 24 hours, we have been busy preparing for the "perfect storm". 

In our house it is colliding with the deadline for the first round of college applications. (Nov 1- aaagh!).  It is also Halloween and unless you have taken a trip to another planet you probably know it is the last week of campaigning before the US election. At least the 24/7 news shows have something other than the election to talk about....