Songs & Poems!



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?".

God paused 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 alone.

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!

God 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.

God and 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 be healed.

Thus 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."

Believing in God's promises . . .
" . . .For I am the LORD who heals you."
Exodus 15:26


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 diagnosis.

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 our family.

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


Special Child

by Sharon Harris

You weren't like other children,
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 they ask,
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 you know.
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.


This 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 to. 


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 (, . 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 job!"
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 experience?
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 it.
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 name."
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. Baruch Hashem

By Brad Fisher, Daddy to Shira



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 darkest days.

With a personality that doesn't need words to speak
Princess Courtney became embedded to our hearts and minds.
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 alright.
 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 pain.

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 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 there, and
I could still be happy knowing that I was part of the effort.

By: Mattie Stepanik (1990-2004)