Thank-you....

Thank-you to my family for helping us bring toys and baked goods to the families at Ronald MacDonald House and McMaster Hospital today. Thank-you to everyone who has given us toys and baked goods to take with us we cannot tell you how much that means to us. Melanie, Jason and Emersyn xoxoxoxoxoxo

Holidays.....

The pain and sorrow that bereaved parents live with every day is unbearable. This pain is even more intense during the holidays. Our "intact" family has a huge hole in it. Jason and I hurt beyond description for us and for all bereaved parents this Christmas and every day. There are no words to articulate how much we miss Emersyn and ache to have her here with us. We don't want to be strong or brave right now we want to just "be" where we are in our grief. We miss her! We are broken hearted! Of course we are! And we are not fine or ok or hanging in there, that is what we say to people to make the conversation bearable we hurt all the time, and that is the simple and painful truth.

Although Christmas can be a joyful time of year for many and that is truly ( and I mean this) a wonderful thing, it can also be an extremely painful time of year for others who are suffering for all sorts of different reasons. To all of the angels that I have had the honour to know, thank-you for the gifts that you have given us, we miss you and we love you.

"The Myth of Getting Over It" by Steven Kalas

When our first child is born, a loud voice says,"Runners, take your marks!" We hear the starting gun and the race begins. It's a race we must win at all cost. We have to win. The competitionis called "I'll race you to the grave." I'm currently racing three sons. I really want to win. Not everyone wins. I'm soon going on stage to speak before acrowd of parents and loved ones impacted by the death of a child. My address is titled, "The Myth of Getting Over it." It's my attempt to answer the driving questions of grieving parents:When will I get over this? How do I get over this?You don't get over it. Getting over it is an inappropriate goal. An unreasonable hope.The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.You don't want to get over it. Don't act surprised. As awful a burden as grief is,you know intuitively that it matters, that it is profoundly important to be grieving.Your grief plays a crucial part in staying connected to your child's life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you'd fight me to keep it. Your grief is awful, but it is also holy. And somewhere inside you, you know that.The goal is not to get over it. The goal is to get on with it.Profound grief is like being in a stage play where in suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, yourblocking, your ability to interact with the other players. You keep banging into it,surprised each time that it's still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.The piano changes everything. The entireplay must be rewritten around it. But over time the piano is pushed to stage left.Then to upper stage left. You are the playwright, And slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story.You learn to play that piano. You're surprised to find that you want to play, that it's meaningful,even peaceful to play it.
By Steven Kalas

Reliving The Bomb.......

Exactly one year ago today we were at McMaster with Emersyn in the neurologists office. Emersyn was three months old at this point. Could you imagine having your three month old baby in a neurologists office? We were the only ones with a baby in the waiting room. We had never heard of SMA and it was on this day last year that an EMG test was done on Emersyn which was so painful for her that she passed out in my arms when it was done. During the EMG she was so brave and Jason held her hand while I sang to her and basically covered her face with mine. Auntie Catherine had to help work the EMG machine as the nurse was unavailable. That was extremely traumatizing for Catherine to have to do but she did it for Emersyn. We had no idea he was even going to test her for anything that day, we thought it was just a verbal consult.We were blown away that he was even performing any tests that day. Emersyn was a hero. Most adults could not have tolerated how painful the EMG was.

The neurologist kept commenting on how social and bright she was and as he was doing the EMG he was saying "come on Emersyn please pass this test sweet heart"! He was rooting for her muscles to respond strongly. It was after she failed to pass the EMG test that the neurologist looked at us and said "I am 60% sure that she has SMA, but we will need a genetic blood test to confirm it". We had never heard of SMA and when he told us that if she had it she would most likely die within a year we basically went into shock. Three days after the EMG was her blood test for SMA to confirm his clinical diagnosis. Then the 6 week wait over Christmas began.....

Decorating Emersyn's Special Spot......

Thanks for helping to decorate Emersyn's spot Auntie Cafrin, even in the rain you pulled through with us! This past Sunday we decorated Emersyn's resting place with two small Christmas trees and garland that wraps around her bench, and beside her remembrance wreath that sits on her stone stands a solar glass snow flake that lights up at night and changes colour. It was an extremely difficult thing for us to do, but with the help of our family we decorated Emersyn's special place. We hope it brings comfort to other families who visit The Garden of Angels. The Garden of Angels is a beautiful spot in the cemetary where only children are buried. We do not feel able to put up our "big tree" this year at home so we have put up a small tree that sits on Emersyn's special chest in our family room.

This tree is to honour her, she loved looking at all of the lights last year on the big tree and it brought us comfort during a very difficult time while we were waiting on her diagnosis. Emersyn was tested for SMA on Dec 13th and we received her results on January 24th 2009. We still feel that we are frozen in that ti...me period last year because for our family that is when time stood still. I remember saying to Jason last year while at the doctors office with Emersyn that it feels like we are in a snow globe watching the world go on around us while we are frozen in time with our child.

Missing You.....

Missing my little girl so much and can't believe how unyielding this pain is. However, I have lost the most precious treasure in my life so this kind of pain makes a great deal of sense. Just wish I could have one more day with you Emersyn, I miss you watching me brush my teeth in the morning and laughing at mommy's tooth paste filled mouth! If I only I could go back in time and freeze those moments.....

Poem by Another Bereaved Mom.....

Please, don't ask me if I'm over it yet I'll never get over it. Please, don’t tell me she's in a better place she's not here with me. Please, don't say at least she isn't suffering I haven't come to terms with why she had to suffer at all. Please, don't tell me you know how I feel unless you have lost a child. Please, don't ask me if I feel better, bereavement isn't a condition that clears up. Please, don't tell me I had her for so many years or months, what year would you chose for your child to die? Please, don't tell me God never gives more than we can bear. Please, just say you are sorry, please just say you remember my child, please just let me talk about my child, please mention my child's name. Please, just let me cry.
~Author Unknown.

Healthy Anger!

It has been a really rough couple of days. Missing Emersyn like crazy and thinking about all of our memories together. It really is moment to moment and hour by hour in terms of how we are coping. One minute we feel a bit better and the next minute we are plunged back into pain. So exhausting. Our grief reminds us that this is not a "choice" or a thing we recover from, it is like a life long disease that you learn (or at least try to) manage. Time for us is still standing still. Each new day right now feels like one day further away from Emersyn. We are really dreading the upcoming New Year because in 2008 & 2009 she was here. We are wishing that this was all just a really bad dream and that we will wake up and have our beautiful daughter here with us safe and sound. The only way we won't become "bitter" is to let out the entire range of emotions, especially the anger. Big difference between healthy anger that our child is gone and bitterness.

Video from The Annual Angel Gala for SMA

The Annual Angel Gala for SMA was this past Saturday, November 14th. Please take a moment and watch the video that was made for this special night
http://www.youtube.com/watch?v=U0Rr1uJrV14
Theresa you did an amazing job!
Love
Melanie, Jason and Emersyn xoxoxoxo

Keepers of Significance........

Parenting from the beyond is what bereaved parents struggle to do after the loss of our children. We cannot watch our child take their first steps, open report cards, clap at dance recitals, cheer at soccer games or see them graduate. A person who lives a full and long life has a life time to create their own kind of unique Significance. We as parents need to marvel with pride as our children learn, grow and mature right before our eyes. We don’t need to announce to the world all of their amazing accomplishments as they are doing it for themselves and how proud we feel to be their parents! We as parents can let our children tell the story of their own Significance.
However, for us bereaved parents our children can no longer create Significance on their own, we bereaved parents have been given the new task of being the “Keepers of Significance”. As Emersyn’s mom I need to make sure that she is understood, appreciated, honoured and remembered by others. Not just on the day of her funeral or on special occasions but every day I need to know she is and always will be a part of this world interwoven into the fabric of who I am. Parents drop their children off at school and wonder and hope that their children are ok. Jason and I feel like we dropped Emersyn off at daycare 212 days ago and we have no idea if she is ok.
Simply thinking that her life will be remembered is not enough for us as parents. We have a desperate need to parent from the beyond and ensure that she is and always will be Significant. It matters that people talk about her, it matters that people say her name even 100 years from now, it matters that she was here and when her name is spoken it brings our child’s legacy to life and what a gift that is. As Emersyn’s mom it is my basic need to know that Emersyn was, is and always will be Significant.
I had another bereaved parent say to me recently that if the physical reflected the emotional right now they would be in the ICU. We can only relate to that feeling all too well.

New "Normal"

Last Halloween Emersyn was about six weeks old and dressed up as a pumpkin. I picked out two pumpkin outfits as I could not decide which one I liked the best. We took pictures of daddy and Emersyn in her costume and it was obviously more for us than her as she was sound asleep for most of our Halloween fun but we could...n't miss the opportunity to photograph our daughters "First Halloween".This year Jason and I spent the day at Michaels's picking out a winter remembrance wreath and stand for her spot at the cemetary. As of November 1st we are no longer allowed to bring flowers as it is too cold and the ground vases will crack.

We picked out a beautiful wreath and had it customized with sparkling copper butterflys and shimmering pine cones for Christmas. Just as I was feeling proud of myself for being able to do this gut wrenching shopping trip I stopped and looked at all of the "earthlings" doing their Christmas shopping and happily browsing the aisles and had the sudden urge to tell them what Jason and I were actually doing there. I wonder what they would have said if they knew that we were picking out a holiday wreath for our daughters grave. This "new normal" certainly does not feel in any way shape or form normal. We are doing what we can to survive all the while trying our best to honour our child. I don't even know what 'normal' is anymore....

Memories......

It’s been a while since I’ve written. Mostly because I am overwhelmed with all of the upsurges of emotion and thoughts that come across my mind. Just as I want to share one thought fifty more flood my mind. Too much to say not enough words and too tired and sad to really try. Trying to process the enormity of our loss is impossible. My head is trying to explain to my heart what has happened and my heart is having none of it.
One would think that with time a linear progression of healing and wellness would start to happen but as Jason and I are learning that is not the case. Grief swirls and loops and dive bombs you with uncharted territories of pain. Just when you think you are having a better day or moment the rug is pulled from beneath you.
It has been 6 ½ months since Emersyn passed away and it feels like minutes and in many ways we are “worse” now than we were then. We had the anaesthetic of shock and numbness to carry us in those blurry first few weeks and months and now we are slowing trying to understand what has happened. Was she real? Was this all a dream?
Memories, crystal clear memoires swirl around in my mind like a constant movie. Every detail as crisp and clear as if it were happening in real time. I can see myself carrying Emersyn down our stairs every morning and opening the shutters to show her the start of the day.She would listen intently as I would point out the sun or clouds or rain or whatever was happening with the weather that day. A stain glass wind chime shaped like an angel now hangs from the spot where I would pull the shutters open. As I open the shutters now the chimes ring, the angel’s sways and my heart swells as I picture my daughter and I looking out the window together. I remember watching her face as she listened very carefully to what I was telling her. I wonder if she knew that I was fighting back tears with the breaks in my voice as I was trying to hold it together as I was describing the weather beyond our shutters. Again the joy and pain side by side in those memories are so real. The exhausting pull of one emotion to the next to the next, the never ending dance with grief. Sometimes we just want a break from this dance, this pain but at the same time it can seem that it is this dance that connects us with Emersyn.

Survival...

Today is our fourth wedding anniversary and Jason and I almost forgot. Not surprising for you other bereaved parents that are reading this that we are so out of touch with what day it is right now. I wish I could tell you that we are getting ready to have a relaxing Thanksgiving but we can't. We don't have the same love of traditions and special occasions that we used to. This time last year Emersyn was 3 weeks old and we were with my family having a fun Thanksgiving at my sisters totally unaware of SMA. Not trying to be negative here just really honest. I don't know if we will ever get excited about traditions and holidays again. That is ok though as I am learning that the name of the game is "survival" when you have lost your child. You do what you can to survive. So, if not celebrating these occasions is less painful then that is what we will do. We will create new traditons that are meaningful to us in a different way. Sorry to vent but feeling very low....

A Thousand Tears ~ Author Unknown

A thousand tears or more these eyes have criedand a thousand more lay in wait -I am bathed with them and yet my heart is still broken, and all that is within me aches with the loss of you, the wanting of you.
There is never a time for this that is right-never a way that can prepare the heart for this reft -you have passed through my arms too soon, like sand flowing through fingersI could not hold you here, though I would try.I know that your spirit flies freeand in the quiet depths of my heart, I can see you still in the rhythm of the waves upon the shorein the crisp fall air that fills my chest,in the iridescent gleam of each dragonfly skimming the surface between heaven and earth.~ Author Unknown

Thanks.....

Just wanted to thank everyone for the lovely messages on Emersyn's birthday. The cards, flowers, phone calls and emails really helped to make her day feel extra special. Jason and I appreciated it so much. Such a hard thing planning a birthday like this one but in the end we feel we honoured Emersyn in a way that felt right for us. Hopefully we have created an annual tradition that we can do every year on her special day. Thanks for walking beside us,
Melanie, Jason and Emersyn xoxo

You Can Help a Grieving Heart by Alice J. Wisler and Fran Dorf~ Thank-you Auntie Becky for sending this!

Oh, we talk about the best cold medications and if cherry cough syrup tastes better to kids than orange. We can recommend preschools and sneakers. But the hardest part of parenting is the least often discussed. The roughest aspect of being a parent is losing a child.Then we clam up. We don't want to hear. We are threatened. If her child died, mine could, too. What can we do when parenting goes beyond the normal expectations? "What do I say?" friends ask me with a look of agony in their eyes. "I feel so helpless.I can't empathize, I haven't had a child die."You can help. You don't have to stand there with a blank stare or excuse yourself from the conversation. You can be informed so that you will be able to reach out to a friend who has lost a child."Jump into the midst of things and do something," says Ronald Knapp author of the book, "Beyond Endurance: When A Child Dies." Traditionally there are the sympathy cards and hot casseroles brought over to the bereaved parents home. But it doesn't end there. That is only the beginning of reaching out to your friend or relative who has recently experienced the death of a child at any age.Here are 15 tips you can learn to make you an effective and compassionate friend to your friend in pain:
1) Listen. When you ask your friend, "How are you doing today?" wait to hear the answer.
2) Cry with her. She may cry also, but your tears don't make her cry. She cries when no one else is around and within her heart are the daily tears no one sees.
3) Don't use cliches. Avoid lines like, "It will get better." "Be grateful you have other children." "You're young, you can have another baby." "He was sick and it is good he is no longer suffering." There will never be a phrase invented that makes it all right that a child died.
4) Help with the care of the surviving children. Offer to take them to the park, your house for a meal, to church. Say "May I please take Billy to the park today? Is four okay with you?" Don't give the line, "If you need me, call me." Your bereaved friend may not feel comfortable with asking for help.
5) Say your friend's child's name. Even if she cries, these are tears that heal. Acknowledging that the child lived and has not been forgotten is a wonderful balm to a broken heart.
6) Give to the memorial fund. Find out what it is and give, today, next year and the next.
7) Some mothers start to collect items that bring comfort after a child dies; find out what it is your friend is collecting and buy one for her. My son liked watermelons and we have many stories of watermelons and him. Therefore my house now has assorted watermelon mementos -- a tea pot, kitchen towel and soap dispenser. Many mothers find solace in rainbows, butterflies and angels.
8) Send a card (I'm thinking of you is fine) but stay away from sappy sympathy ones.
9) Go to the grave. Take flowers, a balloon or a toy. How honored your friend will be to see what you have left there the next time she visits the cemetery.
10) Don't use religion as a 'brush away' for pain. Stay clear of words that don't help like, "It was God's will."
11) Don't judge her. You don't know what she is going through each day, you can not know of the intense pain unless you have had a child die.
12) Stay in touch. Call to hear how she is coping. Suggest getting together, but if she isn't up for it, give her space.
13) Read a book on grief, focusing on the parts that give you ideas on how to be a source of comfort for your bereaved friend.
14) Know she has a hole in her heart, a missing piece due to the death of her child. Holes like these never heal so accept this truth and don't expect her to 'get over' this loss.
15) Remember that with the death of her child, a part of her died -- old beliefs, ideals, etc. Her life has been forever changed. Let her know your love for her as well as God's love for her is still the same.
Even as you participate in the suggestions above, you will still feel uncomfortable. It has been three years since the death of my four year-old, Daniel, and even now when I meet a newly-bereaved mother, I am uncomfortable. Talking of the untimely death of a child is never easy for anyone. However, avoiding reality does not bring healing. You will provide many gifts of comfort along the way when you actively decide to help your grieving friend. When my friends and family acknowledge all four or my children, the three on this earth and the one in Heaven, I am honored. Each time it is as though a ray of warm sunlight has touched my soul.

How to Comfort a Bereaved Friend or Relative Well-Meaning People Often Say The Wrong Thing...By Fran Dorf

Thirty years after her son’s death, my friend still smarts when she remembers all the people who pointed out how lucky she was to have two other children. Another friend, whose brother recently died, grumbles that everyone keeps telling her it will get better with time. Having received my share of insensitive, even hurtful, comments after my son, Michael, died 13 years ago, I certainly understand. Even people with good intentions often say and do the wrong thing. If you want to comfort a grieving friend or relative, your primary task is to validate his/her feelings. Don’t say anything that minimizes those feelings -- which, in effect, “de-legitimizes” them. WHAT NOT TO DOI’ve found that “de-legitimizers” can be divided into six categories... Babblers. These people chatter on about the weather, a friend who had a heart attack and so on. But ignoring the elephant in the room just makes it bigger. Advice-givers. People often give advice, such as, “Start dating again”... “take a long vacation”... “concentrate on your other children”... “it’s time to get over it”... “remember the good times.” But when we hear this advice, we may interpret it as, “What’s wrong with you? If only you would take my wise counsel, you’d feel better.” I remember that people advised me to take a sedative, but somehow I knew that I needed to shed a certain number of tears (more than I could ever have imagined) and that it would be counterproductive to try to mask my pain with medication.Platitude-offerers. When you spout clichés, such as, “God must have wanted him... he’s in a better place,” the bereaved may feel offended. You may prefer to believe God must have wanted him, but the bereaved person may hate God at the moment and thus feel de-legitimized for feeling what he feels. Pseudo-empathizers. It’s particularly distressing for those experiencing “high grief” -- for example, from the loss of a child -- to hear, “I know just how you feel.” If you haven’t experienced the same loss, you have no idea how a person feels -- and maybe not even then. Lesson-learners. There may be profound lessons to be learned from tragedy, but it’s best to let others learn them in their own time and ways. Don’t say, “Everything happens for a reason”... “We must learn to appreciate our lives”... or “Life is short.” Abandoners. Whatever the conscious or unconscious rationalizations -- such as fear of saying the wrong thing or feeling uncomfortable in the face of grief -- if you walk away from a friend who needs you, you’re probably walking away from the friendship permanently. HOW TO HELP Take your cues from the bereaved person. If he’s sitting quietly, sit quietly beside him. If he’s using humor to cope, laugh a little. Let the grieving person tell his/her story in as much detail as he chooses to, even if he repeats it and it’s hard to hear. It helps the bereaved to tell and retell the story. If you’re not sure how to respond, try simply, “I’m so sorry” or even, “I don’t know what to say.”Read a book on grief. You honor your bereaved friend by learning all you can. Good books include A Good Friend for Bad Times (Augsburg Fortress) by Deborah Bowen and Susan Strickler, and I Wasn’t Ready to Say Goodbye (Sourcebooks) by Pamela Blair and Brook Noel. Or search on-line for information about grief under "grief" or "bereavement."Acknowledge the deceased person. Tell a wonderful anecdote about him. Even now, I am grateful when someone mentions my son, Michael. Just saying his name aloud brings him back into the world. Contact the bereaved on significant days -- birthdays, death days, anniversaries. These are difficult, especially “firsts.” Don’t avoid, ignore or forget them. Offer practical and specific support. Pick up the kids from school... cook a meal... mow the lawn. Don’t say, “Is there anything I can do?” or “Call me if you need me.” Decide what you can do, and then do it. Stay in touch. Remember that when the formal mourning period is over and the last casserole is gone, the bereaved is still grieving. Continue to call and get together. Banish the word “closure” from your vocabulary. There is no such thing, and who would want it anyway? We incorporate our losses into our lives. Psychologists have proposed many ways to describe how we find a way to live with loss, but the one I find most useful is that we must “reinvest” in a new reality.In memory of my son, I eventually wrote a novel. Also, my husband and I established an educational program for toddlers with special needs. But reinvestment can be private, too, revealed in a change in priorities, attitudes, interests or goals. Meet us where we are. Don’t have expectations. Don’t compare one grief to another. Remember that grief may take years to work through. Be prepared for tears, moaning, sighing, wailing, trembling, even screaming. Don’t take anger personally. Psychiatrist Elisabeth Kübler-Ross’s classic five stages of grief -- denial, anger, bargaining, depression, acceptance -- come not in stages but in circles and waves like a roller coaster. The best definition of compassion I’ve ever found is a Buddhist one -- “Compassion is willingness to be close to suffering.”Grief support takes work, stamina and commitment. Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen.

Happy First Birthday Emersyn.......

To our darling Emersyn ,Happy very first birthday! We hope you are having lots of fun today with all of the new friends you have met. We wish we could hug you and kiss you and sing Happy Birthday to you today. We wish we could watch you open your presents and eat a giant piece of birthday cake. We wish we could have scooped you out of bed this morning and headed out for the day to celebrate with you. We know those things are not possible so we have a special day planned in your honour. We know you will be with us and we pray you can feel us too. We are going to help two families at McMaster today in your name, The Emersyn Paige Foundation. Daddy and I will be releasing 16 balloons at Glen Oaks at 2:03pm which is the time you were born. We will shower your spot with as many flowers as we can. We picked out a beautiful pink solar glass butterfly to sit by your stone. We have asked the baker to make a special pink butterfly cake that has your name on it. We hope those 16 balloons find you today as they float away in the sky. We need you to know that exactly one year ago today was the happiest day of our lives because it was the day we met you. Happy First Birthday to our precious daughter,
Love you so much,
Mommy and Daddy xoxo

September.....

September used to be my favourite time of year. It used to represent a time of change in a good way, a fresh start. On September 16th it will be Emersyn’s 1st birthday. Instead of picking out a special cake and inviting all of her little friends over to celebrate we will be wishing that we could just hold her again for five minutes. We will decide if we should go to McMaster Children’s Hospital to help out for the day or if we should have a picnic at the cemetery, sometimes we think we should just stay in bed and pull the covers over our heads. Every change of season will bring a new and different kind of “what if” and what could have been. This time last year I was two weeks and two days away from giving birth to our first child and I was full of anticipation and excitement! I felt so connected to the little person that I was carrying and I could not wait to meet her. Emersyn was born on a beautiful sunny day in September.

Thank-you For The Gift Emersyn.....

Jason and I just got home from visiting the spot where Emersyn is buried. We try to go every day. As we were leaving tonight two of the most beautiful deer appeared out of the nearby ravine. They just stopped and looked at us very calmly. We stood there and looked at them in awe and we couldn't help but think that Emersyn had something to do with our encounter..... It was just too magnificent and breath taking to be a coincidence.Thank-you Emersyn for sending us such a beautiful gift tonight we really needed it, Mommy xoxoxoxo

Grief is Multi-Faceted....

“Grief is a multi-faceted response to loss. It includes the emotional numbness, disbelief, separation, physical pain, anxiety, despair, sadness, and loneliness that accompany the loss of someone or something that is loved.” Grief is a journey not a destination. It is not something that can be neatly packed away, overcome, gotten over, moved on from or closed. If that is the goal then how can one possibly succeed? You can only hope that one day instead of being immersed in the depths of grief that you will be able to walk along beside it. We are thinking of you every second of everyday Emersyn. We miss you beyond words and our love for you continues to grow each day.Love Mommy & Daddy xoxoxooxoxoxoxooxoxoxoxoxoxo

"Missing Emersyn"~ Poem Written by Dear Friend Terry Urbaniak

No one would blame you for going insane, for closing your doors and pretending you are still with Emersyn;No one can possibly understand the torture you suffer in your heart and your head Or the feeling of emptiness in your own soul where her physical presence once filled you with the pure contentment of a baby in lull;No one can still feel the warmth and weight of her body in their arms as she lingers in yours and makes what was once the blissful ache of carrying your child now the desperate agony of not;What was once important is now trivial, what was once a happy pleasure is now a guilty one, what was once your future is now your past;How I wish I could rewind life back to your times of bliss and keep you from this time of a living hell;Raised to the heights of euphoria and then plunged into the tormenting darkness of the abyss in less than seven months time; No mortal ever has seen as much as that of a bereaved parent, second only to God, if there is a God, who witnessed the creation of both heaven and hell;You are the only ones who have seen what he has seen, sat on the edge of paradise, walked on the road to perdition and now live in the depths of purgatory in one lifetime;How could you ever be the same, how could you not go out of you mind, how could you ever fully let any of us outsiders into the madness that now lives in your head;Robbed of the most important piece in your puzzle of life, a space that you now fill with the memory of your precious angel as you try to continue building your family and a new future;A memory that is to be honored at all costs and is the only thing that can keep you from crossing over the line into complete and utter oblivion

The Gap by: Michael Crenlinsten

"The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded.A black hole has been blown through our souls and indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there, is to be cut deeply and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence. Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it". The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours. We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will begin recovering when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us. We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap."
Written by: Michael Crenlinsten

Happy 10 Month Birthday Emersyn....

Happy 10 month birthday baby girl!
The 16th of every month for the rest of my life will be a very special and painful day. I felt you with me on my walk yesterday as I crossed over the bridge we used to walk on together when you were first born. Things were so innocent then when we did'nt know you had SMA. I stopped and sat for a little while on your trail and cried. I visited your friend Emily today and gave her a big kiss from you! I know you are watching over her and surrounding their family with love.May you slide down rainbows today and celebrate your special day with all of the other SMA angels.Love you always and forever,Mommy & Daddy xoxoxoxoxoxoxo

Thank-you for 'Dancing in the Rain' for SMA.....

Hi everyone (this post will take up two wall spaces) ,We want to send out a huge thank-you to everyone who registered for and came out to the Rebecca Run for SMA on Saturday. Over $150,000 was raised for SMA research how amazing is that? I know the weather was not that great but it didn’t seem to stop people from coming out and running, walking or rolling for such an important cause. The day was filled with a roller coaster of emotions but most of all it was filled with love, support, remembrance, honour and hope. Our hope seems to come in so many different forms. There is hope for families like us that have lost a child to SMA that our grief journey will become bearable and that we will find ways to connect with our children and honour them whenever we can, there is hope that our children who have passed away will always be remembered and that they are happy and full of love and life wherever they are, there is hope that families and children who are living with SMA will have the strength to make it through another day, and of course there is the hope that we will one day beat this disease and find a cure. In our eyes and in the eyes of all children and families affected by SMA you are heroes for being a part of such... an important cause. Here is a quote that I thought was fitting since the rain was also a big part of the Rebecca Run this year:“Life is not about waiting for the storm to pass, it’s about learning how to dance in the rain”.
Thank-you for dancing in the rain,
Wishing you love, peace and hope,Melanie, Jason and Emersyn xoxoxoxoxoxo

12 weeks ago today.......

It has been a while since I've written.......it was 12 weeks ago today that you passed away. It feels like yesterday. Daddy and I were so numbed by shock that we are struggling more now than we were then. There is no solution to grief, it is who we are. It is not wallowing it is fact. How can we ever say we have accepted that our daughter has died?? No one could, it is simply not in the heart of a parent to ever feel resolved with their childs death. Missing you cannot even come close to describing the void we feel. Constantly searching for answers as to "why us" and "why you". We know these questions will remain a mystery until we see you again. I have to believe there is a meaning, a purpose and a greater power to all of this. Today I pray for the strength to make it through each day without you and most of all I pray that you are safe, happy and full of love and life where ever you are.Miss you & love you my beautiful daughter,
Love Mommy xoxoxoxoxoxoxo

A Trail in Emersyn's Honour for Fathers Day....

Dear Daddy,I had a trail in Oakville dedicated to you for your special day today. It's called the "Emersyn Paige Klomp Trail" and it is on the corner of Sixth Line and Glenashton right in our neighbourhood. There are a bunch of signs along the trail with my name on them so you won't miss it! This is the trail that you and mommy would walk on with me all the time. It is also the trail that you took me on the week before I got my wings when you lifted me out of my stroller and walked me down to the pond to see the baby ducks. You are my hero, my number one dancing partner, bath giver, car ride driver, story teller and overall best dad ever. I love you, I miss you and I am with you today and always. Happy Father's Day I hope you have lots of peaceful runs through my trail and know I am right there with you every step of the way.Love your girl,
Emersyn xoxoxoxoxoxoxoxoxo

The Dragonfly Story ~ Author Unknown

The Dragonfly StoryDown below the surface of a quiet pond lived a little colony ofWater bugs. They were a happy colony, living far away from thesun. For many months they were very busy, scurrying over thesoft mud on the bottom of the pond. They did notice that everyonce in awhile one of their colony seemed to lose interest ingoing about. Clinging to the stem of a pond lily it graduallymoved out of sight and was seen no more.“Look!” said one of the water bugs to another. “One of ourcolony is climbing up the lily stalk. Where do you think she isgoing?” Up, up, up it slowly went. Even as they watched, thewater bug disappeared from sight. Its friends waited andwaited but it didn’t return.“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second. “Where do you suppose shewent?” wondered a third.No one had an answer. They were greatly puzzled. Finally oneof the water bugs, a leader in the colony, gathered its friendstogether. “I have an idea. The next one of us who climbs up thelily stalk must promise to come back and tell us where he orshe went and why.”“We promise”, they said solemnly.One spring day, not long after, the very water bug who hadsuggested the plan found himself climbing up the lily stalk. Up,up, up, he went. Before he knew what was happening, he hadbroken through the surface of the water and fallen onto thebroad, green lily pad above.When he awoke, he looked about with surprise. He couldn'tbelieve what he saw. A startling change had come to his oldbody. His movement revealed four silver wings and a long tail.Even as he struggled, he felt an impulse to move his wings. Thewarmth of the sun soon dried the moisture from the new body.He moved his wings again and suddenly found himself upabove the water. He had become a dragonfly!Swooping and dipping in great curves, he flew through the air.He felt exhilarated in the new atmosphere. The new dragonflylighted happily on a lily pad to rest. Then it was that hechanced to look below to the bottom of the pond. Why, he wasright above his old friends, the water bugs! There they werescurrying around, just as he had been doing some time before.The dragonfly remembered the promise: “the next one of uswho climbs up the lily stalk will come back and tell where he orshe went and why.” Without thinking, the dragonfly darteddown. Suddenly he hit the surface of the water and bouncedaway. Now that he was a dragonfly, he could no longer go intothe water.“I can’t return!” he said in dismay. “At least, I tried. But I can’tkeep my promise. Even if I could go back, not one of the waterbugs would know me in my new body. I guess I’ll just have towait until they become dragonflies too. Then they’ll understandwhat has happened to me, and where I went.”And the dragonfly winged off happily into its wonderful newworld of sun and air.~Author Unknown

Lights in the Storm....

Just wanted to say thanks to everyone for checking in on us. The emails, cards, phone calls and messages of love and support remind us that people are here. To my sisters Erin and Catherine and to my mom and dad, thank-you for calling every single day (even though we may not answer the phone every time) you still call to let us know you are there which makes us feel so loved, and for the meals you guys have been bringing over along with little things like a cup of tea or a book to read we are so grateful. Emersyn would be so happy to know that people are taking such good care of her mommy and daddy :-)Just wanted to say although we may not say it all the time thank -you for being our "lights in the storm".
LoveMelanie and Jason xoxo

Emersyn Is Now Recovering From Her G-Tube Surgery...She Did Great!

Hi Everyone,

Hope you and your loved ones are all doing well. Just wanted to post a quick update and thank you all for your thoughts and prayers while Emersyn was in the hospital for her surgery. We have been home for two weeks now and Emersyn is doing great. Her surgery went very well and she was a real trooper! Emersyn captured the hearts of every doctor, nurse, resident and passerby in the hospital during her stay :-) With her IV pole, pulse ox and g-tube in tow, we tried to make the best of a crappy situation as we pulled her around for hours in one of the radio flyer wagons on the ward which she loved! We were all so happy to be home after a very rough four days at Mac. The g-tube has been a learning curve but we have adapted quickly and are happy to see Emersyn tolerating her feeding schedule well. Thank-you all for your love and support it really does help us make it through each day.
Lots of love,
Melanie, Jason and Emersyn xoxo

Emersyn's G-Tube Surgery Date Coming Up......

Just wanted to thank everyone for your kind words of support and for joining Emersyn's Paige. Emersyn will be having her G-tube surgery on Tuesday Feb 24th at 8:00am at McMaster Children's Hospital in Hamilton. We will be there for about a week. We ask that everyone say a little prayer for her as this is a risky procedure for a child with SMA. We hope and pray that she pulls through it all ok and recovers quickly so we can bring her home asap. We will send out a post surgery update to let you all know how she made out.
Love Melanie, Jason and Emersynxoxo

Happy 5 Month Birthday Emersyn!

Happy 5 month birthday Emersyn! Mommy and Daddy are so proud of you :-) We had a 5 month b-day party for Emersyn with family and we broke the rules and let her try some of her cake!! She hammed it up, stole the show and loved every minute of it.
Love
Mommy and Daddy xoxoxoxoxoxoxoxoxoox

Post From Auntie Deanna

"This little light of mine,I'm gonna let it shine,This little light of mine,I'm gonna let it shine,This little light of mine,I'm gonna let it shine Let it shine,Let it shine,Let it shine. Hide it under a bushel? No!I'm gonna let it shine Hide it under a bushel? No!I'm gonna let it shine Hide it under a bushel? No!I'm gonna let it shine Let it shine,Let it shine,Let it shine.This little light of mine,I'm gonna let it shine,This little light of mine,I'm gonna let it shine,This little light of mine,I'm gonna let it shine,Let it shine,Let it shine,Let it shine. Shine all over The whole Universe I'm gonna let it shine, shine all over the whole Universe I'm gonna let it shine, shine all over the whole Universe, I'm gonna let it shine, Let it shine,Let it shine,Let it shine"

Dinner and a movie $60, a night on the town $150,Spending time with Emersyn.......PRICELESS!!!!!!!!!!!!!!!!!!I had a wonderful time yesterday visiting you guys and especially Baby Frogga!! Thank you Jason for giving up your bath time ritual for one night so that I could see how much fun she has in the water! I must say although she loves being a torpedo and in the luge, I think she might like it when Auntie Dee dances for her better!! You guys are such a loving family and the BEST parents ever! As soon as I walk into your home I can feel the love. Emersyn definitely knew what she was doing when she chose you guys to be her Mommy and Daddy! xoxoxoxoxoxxoxoxo