The Brave Little Soul
By: John Alessi
Not too long ago
in Heaven there was a little soul who took wonder in observing the
world. She especially enjoyed the love she saw there and often
expressed this joy with God. One day however, the little soul was
sad, for on this day she saw suffering in the world. She approached
God and sadly asked, "Why do bad things happen, why is there
suffering in the world?".
for a moment and replied, "Little soul, do not be sad, for the
suffering you see, unlocks the love in peoples hearts". The little
soul was confused. "What do you mean", she asked. God replied, "Have
you not noticed the goodness and love that is the offspring of that
suffering? Look at how people come together, drop their differences,
and show their love and compassion for those who suffer. All their
other motivations disappear and they become motivated by love
The little soul began to
understand and listened attentively as God continued, "The
suffering soul unlocks the love in people's hearts much like the sun
and rain unlock the flower within the seed. I created everyone with
endless love in their heart, but unfortunately most people keep
it locked up and hardly share it with anyone. They are afraid to let
their love shine freely, because they are afraid of being hurt. But
a suffering soul unlocks that love. I tell you this-it is the
greatest miracle of all. Many souls have bravely chosen to go into
the world and suffer-to unlock this love-to create this miracle-for
the good of all humanity.
Just then the little
soul got a wonderful idea and could hardly contain herself. With her
wings fluttering, bouncing up and down, the little soul
excitedly replied, "I am brave; let me go! I would like to go into
this world and suffer so that I can unlock the goodness and love in
people's hearts! I want to create that miracle!
smiled and said, "You are a brave soul I know, and thus I will grant
your request. But even though you are very brave you will not be
able to do this alone. I have known since the beginning of time that
you would ask for this and so I have carefully selected many souls
to care for you on your journey. Those souls will help you create
your miracle; however they will also share in your suffering. Two of
these souls are most special and will care for you, help you and
suffer along with you, far beyond the others. They have already
chosen a name for you.
the brave little soul shared a smile, and then embraced. In parting,
God said, "Do not forget little soul that I will be with you always.
Although you have agreed to bear the pain, you will do so through my
strength. And if the time should come when you feel that you have
suffered enough, just say the word, think the thought, and you will
at that moment the brave little soul was born into the world, and
through her suffering and God's strength she unlocked the goodness
and love in people's hearts. For so many people dropped their
differences and came together to show their love. Priorities
became properly aligned. People gave from their hearts. Those that
were always too busy found time. Many began new spiritual
journeys-some regained lost faith-many came back to God.
Parents hugged their children tighter. Friends and family grew
closer. Old friends got together and new friendships were made.
Distant family reunited, and every family spent more time together.
Everyone prayed. Peace and love reigned. Lives were changed forever.
It was good. The world was a better place. The miracle had happened.
God was pleased."
in God's promises . . .
" . . .For
I am the LORD who heals you."
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched
you out every day. I've looked for you on the internet, on
playgrounds and in grocery stores.
I've become an expert at
identifying you. You are well worn. You are stronger than you ever
wanted to be. Your words ring with experience, experience you culled
with your very heart and soul. You are compassionate beyond the
expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were
chosen to be members. Some of us were invited to join immediately,
some not for months or even years. Some of us even tried to refuse
membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We
were pregnant, or we had just given birth, or we were nursing our
newborn, or we were playing with our toddler. Yes, one minute
everything was fine. Then, whether it happened in an instant, as it
often does, or over the course of a few weeks or months, our entire
lives changed. Something wasn't quite right. Then we found ourselves
mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy.
Some need respirators and ventilators. Some are unable to talk, some
are unable to walk. Some eat through feeding tubes. Some live in a
different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know "the"
degenerative and progressive diseases and we hold our breath while
our children are tested for them. Without formal education, we could
become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish. We have
prevailed upon the State to include augmentative communication
devices in special education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove to insurance
companies the medical necessity of gait trainers and other adaptive
equipment for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they
could receive education and evaluation commensurate with their
We have learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in supermarkets
during "tantrums" and gritted our teeth while discipline was
advocated by the person behind us in line. We have tolerated inane
suggestions and home remedies from well-meaning strangers. We have
tolerated mothers of children without special needs complaining
about chicken pox and ear infections. We have learned that many of
our closest friends can't understand what it's like to be in our
sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them by
our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our
physically handicapped children to the neighbors' front doors on
Halloween, and we have found ways to help our deaf children form the
words, "trick or treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on Christmas. We
have painted a canvas of lights and a blazing yule log with our
words for our blind children. We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter. And all the
while, we have tried to create a festive atmosphere for the rest of
We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.
We've mourned the fact that we never got to relax and sip red wine
in Italy. We've mourned the fact that our trip to Holland has
required much more baggage than we ever imagined when we first
visited the travel agent. And we've mourned because we left for the
airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they
will achieve in life knows no bounds. We dream of them scoring
touchdowns and extra points and home runs. We visualize them running
sprints and marathons. We dream of them planting vegetable seeds,
riding horses and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes smeared with
watercolors, and their fingers flying over ivory keys in a concert
hall. We are amazed at the grace of their pirouettes. We never,
never stop believing in all they will accomplish as they pass
through this world.
But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars
by Sharon Harris
You weren't like other
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"
Sometimes when I see you look up at the sky
It's as though you see angels, fluttering by.
You smile and you laugh with your eyes all aglow,
Do you have your own secret that none of us know?
Do you see the angels sent from above?
Are they here to remind us of God's true love?
I'll never forget that cold winter day
When they said you would never walk, run or play.
Little hope for a cure existed they said.
But you took our hand, down this path we were led.
Do you see the angels guiding our way?
Do they know we are thankful for each precious day?
Some people search their whole lives and
What is my purpose, my reason, my task?
But when you are given an angel on earth
The mission is clear, it defines your self-worth.
Do you see the angels lighting the night?
Do they give you the strength to go on with this fight?
The things you have taught us are endless
The love that we feel just continues to grow.
We are lucky and blessed to have every day,
An angel from heaven to show us the way.
Do you see the angels sent from above?
Do they know that you taught us the meaning of love?
The ache that I feel in my heart every day
Is from knowing that someday you'll be taken away.
To know you and love you is worth all the pain,
And if given the chance, do it over again.
Do you see the angels leading the way?
To God's kingdom, where we'll hold you someday.
By Debby St. Onge, dedicated to Veronica with
so much love.
By Brad Fisher, Daddy to Shira
is an article written by the daddy of a little girl who has
SMA. I know him through the SMA Support chat group I belong
DON'T GRIEVE FOR ME
UNTIL I'M GONE
Almost all of us go
through our daily lives thinking or experiencing death from a
distance. We talk with our friends about this person that is ill
or those people that were unfortunate to have recently lost
someone close to them, did you hear about so and so their child
has.........and on and on. Rarely do we look into our own
child's eyes and think about what we would do or how we would
feel if they were to die instantly or from some terminal
illness. When we do we can't think about it for long because it
is too horrific a place to go to. Well I have the unfortunate
luck to have become a parent of a child with a recently
diagnosed terminal disorder. I won't get to descriptive about
the disorder because what I really want to talk about is grief,
living, dying and death. My beautiful daughter Shira has SMA or
Spinal Muscular Atrophy type 1 (http://www.smasupport.com/,
. The prognosis is a 30% chance of living past 1 and a 15%
chance of living past 2 and after that it is any ones guess but
most of these kids die very, very, young.
What is it like to look into a beautiful 2 year old baby girl's
eyes that are gleaming with past, future and present and know
that her time on earth is going to be short? Devastating,
catastrophic, horrific, apocalyptic are not strong enough words
to describe my breaking heart. When your own flesh and blood
start heading down that long lonely road to eternity you feel
like your soul is being ever so gently jolted from your body.
The world has taken on an entirely new dimension for me. All I
want to do is spend every last second with my daughter, loving
her, holding her, memorizing her smell, her stare, her caress.
There are moments when I cry uncontrollably, there are moments
when I look towards heaven and thank Hashem for giving me this
child and the chance to love her. As I sit in her bedroom and
watch her sleep with the equipment humming in the background,
the breathing apparatus strapped to her face, the oxymeter
displaying her oxygen levels and heart rate, I have to pinch
myself and ask, "What am I doing here?" "I didn't ask for this
I now feel the wind, rain and sunshine like it was the first
time. I pray more. I listen more intently. I judge less. I cry
more. I feel helpless and small a lot of the time. I often feel
like I can't relate to people the way I used to. We all know
there was a tsunami in Asia and saw thousands upon thousands of
people from all walks of life suffer greatly but we can never
feel what they feel unless we experience what they have
experienced. That is how I feel, like I'm in a distant land
among strangers even though I know friends and family care for
me deeply. There is camaraderie with those that have lost
children. Not much has to be said when you meet up with these
people as this type of knowledge and knowing travels easily
between grieving souls with a glance or a hug.
Do I grieve? Yes. Do I think about my baby girl's imminent
death? Yes. When you look for information about dealing with
death from a pre death perspective all you can find are books on
dealing with grief after loss. But how do we deal with death as
we go through the process? What do we tell friends? What do we
want from our friends? Who should we tell? How should we tell
them? What role does everyone in my life have in this horrible
I recently began a heartfelt and enthusiastic journey back into
Judaism. Through my religion and my religious community I have
come back to a centre, a place where I view death as a process
that gives life meaning. I no longer avoid death or look at it
so negatively, in fact now I embrace death as I do life. After
all, doesn't life and death walk hand in hand? To not think of
death daily is like not thinking about life daily which most of
us are to busy to do. I know more than ever that this journey
called life is short. Whether a life is 83 years or 18 months,
compared to recorded history or eternity it is short. Shira has
taught me that life must be lived with purpose or it is wasted.
When we live our life with purpose then death is only the end of
our physical life. Just think about those that have passed that
touched your life in both positive and even negative ways. These
souls are still touching you with memories because I trust that
memories are soul. I have come to really understand and believe
that what we take from this world is based on what we leave in
I feel so lonely and sad when I think of my daughter leaving me.
I read some beautiful words taken from a Hasidic Sefer (from
a book titled Wrestling With The Angel Published by Schoken)
recently that gave me comfort, peace and hope. "How will we
recognize those we loved when we meet them after 120 years in
the world-to-come? If they died young, will they have grown old?
If they were hurt or wounded, will they have healed? How will we
know them, how will they know us if we have changed or aged? The
answer is that we will know them, we will recognize them because
they will be clothed and cloaked in the mitzvahs we do in their
My daughter's death and funeral does cross my mind though I try
to cherish each moment, hour and day with her. I have talked
about the ritual ceremony with all of my Rabbi's, how much it
costs, how fast it takes place after she dies, where the plot is
etc. This too is a gut wrenching experience. Now I travel the
long lonely road carrying my daughter towards her imminent death
holding hands with my wife and my 4 and a half year old son.
If there is any advice I can give to onlookers who care, it is
to reach out to people that are living with the diagnosis of
loosing a loved one. Don't be afraid as you can't catch what you
already have; but being with us in this journey holds up a
mirror where you too must face your mortality. Lend a hand to
those going through this difficult time, listen, take them food
and just be there to go through the experience with them.
Recently I spoke with a relative of my wife Rabbi Tennenhause to
thank him for taking food to my 90 year old great aunt in
Hollywood Florida after the latest hurricane. The Rabbi informed
me that in Judaism there is a saying that goes," May you always
be on the giving end." To be on the giving end is a mitzvah.
Beautiful princess with the fierce red hair,
And eyes like an angel, so rare and unique.
Even without the ability to move or speak
She lights up any place that she is in with flair.
She means so much to all of us.
She is special in so many ways.
Its hard not to make a big fuss,
For the little princess that can light up even the
With a personality that doesn't need words to speak
Princess Courtney became embedded to our hearts and
She may look fragile but she is anything but weak,
It is an honor to know her, for someone so amazing is a
blessing to find.
Unable to move, her smile alone warms our hearts,
Even when she is sick and her pain becomes severe,
With her smile she makes it seem like everything is
I would do anything to have her well and near.
With tears in my eyes, pouring out like rain
I am writing this poem to let her know
That I love her and admire her courage and strenght
And I wish there was something I could do to ease her
I love the princess with the beautiful blue eyes
Always facing pain with a smile on her face.
Valiant little princess,
she is an angel in disguise.
By: Tania Elizalde
IF THEY WOULD
If they would find a cure when I'm a kid...
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I am a teenager...
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I'm a young adult...
I could travel around the world and teach peace, and
I could marry and have children of my own.
If they would find a cure when I'm grown old...
I could visit exotic places and appreciate culture, and
I could proudly share pictures of my grandchildren.
If they could find a cure when I'm alive...
I could live every day without pain and machines, and
I could celebrate the biggest thank you of life ever.
If they would find a cure when I'm buried into Heaven,
I could still celebrate with my brothers and sister
I could still be happy knowing that I was part of the
By: Mattie Stepanik (1990-2004)