Emersyn's Entourage 2011 Rebecca Run - Tomorrow is the BIG DAY!!

Hi Everyone!

Just a quick note before the big day tomorrow. The 2011 Rebecca Run for SMA will be taking place at Fairy Lake in New Market, Ontario and all proceeds from this big event will go directly towards a CURE for SMA! Emersyn's Entourage has over 70 people on our team this year and so far we have raised almost $4,000! Way to go everyone that is amazing!! Thank-you to everyone who has registered and/or sponsored us so far it means the world to us and to all families affected by SMA. If you have been sponsored and have not emailed us please feel free to let us know and we will add your amount to our grand total before tomorrow. For those of you who cannot attend tomorrow but wish to help us in our quest for a CURE for SMA you can sponsor us by clicking on the following link:

https://www.runningroom.com/dashboard/donations/index.php?raceId=6220&eventId=19961&memberId=A2MDMQNvBWZUPVBgAjU%3D&item=8&guest=1

If you are attending the event tomorrow and are a member of Emersyn's Entourage please look for our tent and purple banner with our team name on it as that is where we will be in between events and we would love to see you all and say hello!
For information on start times for tomorrow's events, information about race kit pick up and other details about tomorrow's big event please visit www.rebeccarun.com for more information!

Our race honouree for 2011 is beautiful SMA angel Marley Ann Guay. To read her story and learn more about her amazing family please click on the link below.

http://www.rebeccarun.com/marley.html

Thank-you to everyone for helping us to make the 2011 Rebecca Run for SMA another huge success! We could not have done it without all of YOU!

Hugs, love, thanks and much HOPE to you all,
Melanie, Jason, Emersyn and Isla

Hi Everyone!

The 2011 Rebecca Run is approaching fast and we wanted to give a quick Emersyn’s Entourage update. So far we have an amazing 70 people registered on our team and have raised more than $1,000 towards SMA research! We know that number will increase as race day approaches as our team continues to collect donations for the big day. Thank-you to everyone for your hard work and fundraising efforts we truly appreciate your support! If you have raised money please send us an email to let us know so we can add it to our grand total for race day.

Just a reminder that people can still register for the 1km fun run, 3km walk/run and/or 5km walk/run. Click here to register. Once you have registered please let us know so we can add your name to Emersyn’s team. For race details including start-times, race kit pick-up, directions, etc. please visit www.rebeccarun.com. If you plan to pick-up your race kit on race day please come early to avoid line-ups. If you are unable to attend but wish to support us click here.

This year is the 10th anniversary for the Rebecca Run for SMA and we look forward to seeing everyone on race day to share in this vitally important day! Your support and ongoing dedication to helping us find a CURE for SMA means more than you know. You are not only helping us to honour our beautiful daughter Emersyn, you are also giving hope to so many children battling SMA.

If you have any questions or concerns about the 2011 Rebecca Run please contact Melanie or Jason at emersynpaige@gmail.com

With so much appreciation, love and HOPE!
Melanie, Jason and Emersyn
“Together we CAN find a CURE for SMA”

Emersyn's Entourage Last Day for Team Shirts with Registration!

Hi Everyone!

Just sending out a quick reminder that today June 9th 2011 is the LAST day to register for Emersyn’s Entourage and receive your customized team race shirt for the 2011 Rebecca Run for SMA that is happening on Saturday, July 9th 2011 at Fairy Lake in Newmarket Ontario!! After today, you can still register for the 2011 Rebecca Run up until the event sells out however you will not be eligible to receive your Emersyn’s Entourage 2011 race shirt.

You don’t have to be a runner to participate in this extraordinary event. You can walk, run or roll your way to the finish line in the 3km, 5km or children’s 1km event on this family and friend filled morning. This year’s event will also include an amazing Marketplace to do some shopping with proceeds going towards a CURE for SMA, great snacks and a post race BBQ, face painting for kids and some special surprise guests! We have over 50 members on Emersyn’s team so far and are hoping to sign up a few more today with your help.

To register for the 2011 Rebecca Run please click here and remember to indicate that you would like to be a part of Emersyn’s Entourage and you will receive a customized race shirt with our team name on the back in your race kit. If you are unable to participate and would still like to help us find a CURE for SMA please consider sponsoring us for this event by clicking here. Once you have registered, please send us an email to emersynpaige@gmail.com so we can keep track of our numbers and add your name to Emersyn’s team for 2011.

Thank-you all for your ongoing support it means so much to us and all families and children that have been and will be affected by SMA! To read more about SMA and our beautiful daughter Emersyn’s life, legacy and spirit please visit her blog at www.emersynpaige.blogspot.com

With so much thanks, love and hope,

Melanie, Jason and Emersyn Paige Klomp

“Together we CAN find a CURE for SMA”

www.rebeccarun.com

2011 Rebecca Run for SMA - Emersyn's Entourage Registration Cut off Date Fast Approaching!

Hi Everyone!

Just a friendly reminder that the registration cut off date for the 2011 Rebecca Run for SMA is FAST approaching! If you plan on joining us on Saturday July, 9th at Fairy Lake in Newmarket in the walk/run/roll for a CURE for SMA the devastating disease that took the life of our beautiful daughter Emersyn, then please go to the following link to register before June 9th to be a part of “Emersyn’s Entourage” http://www.events.runningroom.com/site/?raceId=6220. This amazing event sells out every year so don’t miss out on being a part of this very important day!

When registering please remember to indicate that you would like to be a member of “Emersyn’s Entourage” to help us reach our goal of 100 members on our team and also to receive your Emersyn’s Entourage running shirt. If you are unable to attend the 2011 Rebecca Run for Spinal Muscular Atrophy and would still like to help us in finding a CURE for SMA you can sponsor us for the event by clicking on the following link https://www.runningroom.com/dashboard/donations/index.php?raceId=6220&eventId=19961&memberId=UTEKOAFtBWYBaFVlUWY%3D&item=8&guest=1.

All proceeds from the 2011 Rebecca Run for SMA will be given to Families of SMA Canada towards finding a CURE for this terminal disease. Here are just a few quick facts about SMA and the main reasons why we are asking for your help:

*SMA is the NUMBER ONE GENETIC KILLER of children under the age of two

*1 in 6,000 babies is born with SMA in Canada every year

*1 in 35 people carry the gene for SMA – it is NOT a rare disease

*There is currently no treatment and no cure

*SMA has been deemed one of the most ‘curable’ diseases by the National Institute of Health and is considered a ‘gateway’ disease in finding a CURE for other neuromuscular diseases such as ALS and Parkinson’s

* Both Jason and I are carriers of the SMA gene deletion and had no idea.......what if you are a carrier....what if this was your child?

* SMA research receives no government funding so it is up to the ‘people’ to come together and raise the dollars needed to help save the lives of beautiful children that have been affected by this devastating disease

Thank-you to everyone who has registered for Emersyn’s Entourage or sponsored us so far. We are so very grateful for your amazing support! Please let us know once you have registered so we can update Emersyn’s blog.

For updates on Emersyn’s Entourage please visit her blog at www.emersynpaige.blogspot.com

Sincerely and with so much thanks and hope,

Melanie, Jason and our Angel Emersyn Paige Klomp

“Together we CAN find a CURE for SMA”

For more information on the 2011 Rebecca Run for SMA please visit www.rebeccarun.com

When Mother's Day Hurts ~ By Karla Helbert

When Mother's Day Hurts ~ By Karla Helbert, MS, LPC, Grief, Loss & Bereavement Topic Expert

Mother’s Day is observed by many as a joyful day of celebration, a time when hardworking mothers can have a chance to put our feet up, relax, be treated to breakfasts in bed, special lunches or dinners, given special consideration. We might receive gifts lovingly chosen or perhaps handmade by our children and partners. The day may hold special times set aside for visiting with or talking to our mothers, perhaps making up for time we have been apart, busy with our lives. The idea of Mother’s Day in our culture is painted as brightly and sentimentally as any Hallmark commercial.

The truth is though, for many, Mother’s Day can be a painful and difficult day. Women whose children have died at any age, women experiencing infertility, women who have had miscarriages, men, women and children whose mothers have died—for these and others, Mother’s Day can be a day of sadness and loss. In grief, many days typically perceived as happy or joyful times are experienced by the grieving and bereaved as sad and isolating. Bereaved mothers are faced with the experience of seeing other mothers interact with their children, of watching seemingly happy, intact families go about the daily ordinary business of life. People whose mothers have died hear other people speak casually about day-to-day interactions with their mothers, or watch mothers and daughters shopping or lunching happily. We are faced with the barrage of Mother’s Day commercials created to tug at our heart strings (and of course, urge us to open our wallets); and in all those things, so much of the grief we experience is the grief for that which can never be our reality. Each person’s grief, and his or her response to the pain of grief is always highly individual, but no matter what, if you are mother whose child has died, or, if you are a child whose mother has died, Mother’s Day is a sad time.

For women whose children have died, it can almost go without saying that Mother’s Day is deeply painful, and because of that, it should never go without saying. If you know a mother whose child has died, at any age, please acknowledge her motherhood as well as her pain. The greatest gift for a bereaved mother on Mother’s Day can be the simple, but hugely powerful, recognition of her motherhood. Even though our children have died, we are still mothers–to all of our children. The simple act of recognition allows a bereaved mother the validation she so often seeks and sadly, so often finds missing. A hug and a “Happy Mother’s Day,” even if that seems improbable, could mean more than one could imagine. There are many things supportive friends and family members can do to help ease the pain of this difficult day for a grieving mother. Visit her child’s grave, leave a pretty stone, a seashell or other small trinket, and let her know. Talk about her child. Use her child’s name in conversation, no matter how brief. All bereaved parents long to hear other people speak their child’s name after he or she has died. Many non-bereaved people think (wrongly) that if they mention the child, this will somehow “open the wound,” or “remind” us of the loss. You can trust that we are already thinking about our children, that wound is ever-present. Our children are never, ever far from our hearts and minds. One of the greatest fears for a bereaved parent is that no one, except for us, will remember our children. If you have a special memory of her child, send a card with a story of that memory enclosed. It will be a cherished treasure. Even a card simply wishing her a happy and peaceful day is a gesture that is greatly appreciated.

When we are bereaved mothers who are also fortunate enough to have other children who are alive, we continue to miss and to mourn the ones who are not here for our arms to physically enfold. For these mothers, acknowledging their child who has died can be an incredibly meaningful gift. One child does not replace another. We celebrate in the joyful presence of our living children and deeply mourn the absence of the ones who are not here sharing our daily lives. Remembering that we are mothers to all our children is such a special act.

For women who have suffered early miscarriage, women experiencing infertility problems, or for birth mothers whose birth children have been placed in adoptive homes, Mother’s Day can bring a silent and isolating grief. Much of society does not recognize the loss that can be inherent in these women’s circumstances. Simply letting her know that you are thinking of her on this day can be welcome gesture. A phone call to check in and a simple, “I was thinking of you today and wondering if you were doing ok.” This can allow her to talk about her feelings if she chooses to do so.

For any person whose mother has died, Mother’s Day can be a painful and sad time. A tradition of the not so long ago past called for corsages to be worn on Mother’s Day. A red corsage meant that person’s mother was still alive. A white flower meant their mother had died. Those who wore white flowers were most likely given extra hugs or an extra squeeze of the hand. The openly worn symbol of the flower allowed others to feel freer to talk about the woman who had died, to feel invited to share remembrances or condolences. In our society where mourning is no longer a widespread or open practice (though I am working hard, along with likeminded friends and colleagues to change that), other community members may not always feel they can openly discuss “the departed.” If you know someone whose mother has died, or if you knew his or her mother, perhaps sending a white flower in memory of their mother may be a lovely gesture. You might also consider sending a card or letter, or making a phone call specifically to share memories of that person’s mother. Taking a moment to let her child know how much she meant to you, can be very comforting. If you know a young child whose mother has died, acknowledge that child’s pain and let that child know that you are a safe person to talk to. Again, sharing memories of the child’s mother can let that child know how much his or her mom meant to others.

For all of us, childless mothers and motherless children alike, planning a way to remember our deeply cherished loved ones is very important. Make a plan that will honor your mother’s life, your child’s life. Acknowledge their presence in your life, your heart and your mind. Honor your love for them, as well as the pain you feel due to their absence. Create new traditions for this day, such as lighting a candle or saying a prayer, or wearing a flower. You might wish to donate to a charity in your child’s or your mother’s name, plan a visit to the burial site, plant a tree, create a work of art or start a scrapbook. Read your mom’s favorite book, watch her favorite movies, listen to songs she loved. Name a star after your child, make his or her favorite food, plan a balloon release with notes to him or her written on the balloons. No matter what, you are always a mother. And no matter what, your mother is always your mother. We can remember them with love.

I vividly recall the first Mother’s Day after my son died. It was a very sad, painful day. The beauty of spring itself seemed to exist solely to mock my childless arms. On that day, my husband and I planted a tree in our backyard. I had originally planned to plant a tree for our son so that he could watch the tree grow as he grew. Instead, we planted the tree in his memory. The choosing of the tree, bringing it home, digging the hole, and the placement of the tree itself, were all acts that meant more than the simple planting of a tree. The act was elevated to ritual status and was very healing and comforting. I placed special stones around the tree, hung wind chimes and placed special ornaments in and around the tree. Caring for the tree has become a way of demonstrating our on-going love for him. Weeding, decorating the area, watering and fertilizing the tree have allowed for that loving memorial to continue. The tree is visible in our back yard from every window that looks out of the back of our house; kitchen, living room, bathroom, hallway, office. While nothing takes away the pain of missing my child, the ritual we created together to honor his memory made that first Mother’s Day more bearable, and is a constant reminder of our love for him. Seeing the tree bloom each spring and watching it grow a little taller and stronger with each passing year underscore the tree’s symbolic representation of our ever-present love for him and his presence in our family.

If you anticipate that Mother’s Day will be difficult for you, whatever your personal circumstances, spend some time making a plan for honoring, remembering and memorializing. Think about doing something to care for yourself as well. Self-care gifts such as massage, manicure, pedicure, can all help to alleviate stress. Ask for what you need. Taking time to be alone, to journal, to take a walk, spend time in nature, or simply to rest can be very helpful. If you need support, ask for it. If you worry that no one will do anything for you on Mother’s Day, be pro-active and tell your loved ones what you would like to do to observe the day. Plan a lunch or dinner with supportive friends or family. Give yourself permission to do what you need to do to take care of yourself.

Emersyn's Entourage Update

Hello Emersyn’s Entourage!

This is a quick update to let everyone know that we are off to a great start for the 2011 Rebecca Run for SMA! So far, we have registered 30 amazing team members who are excited to run/walk/roll for Emersyn. Pretty impressive considering it is only April!

Just a reminder to all who are interested but have not yet signed up to be part of Emersyn’s Team - the 2011 Rebecca Run will SELL OUT again this year so please don’t miss out! The APRIL 30th early bird registration date is quickly approaching. Please visit www.rebeccarun.com to take advantage of the $30 registration fee and secure your spot.

Please remember to indicate that you are signing up for Emersyn's Entourage so we can add your name to our team and ensure that you receive your customized Emersyn’s Entourage race shirt from the Running Room. Team updates can be found on Emersyn’s Blog at www.emersynpaige.blogspot.com. If you are unable to attend the race and would like to sponsor us please visit www.emersynpaige.blogspot.com and click on the link located over top of the thermometer.

We have an exciting “Silent Auction for SMA” event coming up for Emersyn’s Entourage and we are looking for prizes of all shapes and sizes to auction off to help raise money towards our fundraising goal! Please contact us at emersynpaige@gmail.com or call us at 905-257-1317 if you have a silent auction item that you would like to donate to our team to help raise some much needed dollars towards a CURE for SMA.

Thank-you everyone for your tremendous support we know we can reach our goal again this year of 100 members on our team joining us in the FIGHT AGAINST SMA the number one genetic killer of children under the age of two. We hope to see you all again this year at this heart-warming family and friend filled event that continues to bring us one step closer to finding a CURE.

"Together WE CAN find a CURE for SMA!"

Melanie, Jason and our Angel Emersyn Paige Klomp

Emersyn's 2nd Angel Date

On April 7th 2009 2 years ago today our beautiful, brilliant and precious daughter Emersyn Paige was given her wings at only 7 months old. Emersyn is our heart and we are forever searching for signs of our girl who we love, miss, honour, remember, cherish and strive to connect with every single day. Please light a candle for Emersyn today and thank her for all of the gifts that she continues to share with the world. We miss you beyond words, we are so proud of the beautiful person that you are and we love you so deeply forever. We love you baby frogga and we feel you with us so much thank-you for being such a clever little girl! Love Mommy, Daddy and your baby sister on the way who we know you love and watch over each day. Fly free our sweet angel girl xoxoxoxoxo

Upsurge of Grief..........

Feeling the anxiety of Emersyn's Angel Date approaching in a few weeks already. Some people think it is just this day that is hard.....for us this day just magnifies a daily pain that we carry with us always. Yes we still love, laugh and feel happiness but it is a different lens by which we view these things....it will always go back to yearning for our child to be part of every step we take on this earth. Our new normal is weekly visits to Emersyn's grave.....does that sound normal to you? Losing our child still and always will take our breath away everyday and we hope people never get used to the idea that Emersyn is no longer with us. It makes us feel just as uncomfortable as it does to you to think about it for even a minute. We will only know the answers to our questions of "why OUR daughter" when the time comes for us to leave this earth but I have to say that no reason for her death will justify her being taken from this earth well before her time. I will not put a silver lining on this one and admitting that actually feels good.

Emersyn's Entourage - Rebecca Run for SMA 2011 Update!

Attention Emersyn’s Entourage!

The 2010 Rebecca Run for Spinal Muscular Atrophy (SMA) was a tremendous success! For the second year in a row the run sold out with Emersyn’s Entourage leading the way. Emersyn’s Entourage had more than 120 participants racing and raised an incredible $20,000 for her honouree year. Please visit http://www.youtube.com/watch?v=0mchwBQBmjw to view Emersyn’s Entourage shaving it away for SMA in 2010. Overall the Rebecca Run and all teams combined raised more than $165,000 last year alone for SMA research. Thank you to everyone who attended the run and to those who could not attend thank you for sponsoring a runner, walker or roller.

It’s time to set our goals for this year and keep the momentum going! Once again we are hoping to register more than 100 walkers/runners/rollers on Emersyn’s Entourage and raise more than $10,000 in her honour. Please visit Emersyn’s blog www.emersynpaige.blogspot.com for weekly updates.

Everyone who attended last year’s race has shared with us how much they enjoyed the day. Features for this year’s event include:

• Our 2011 Race Honouree is beautiful SMA Angel Marley Ann Guay please visit http://www.rebeccarun.com/marley.html to read more about this precious little girl and her story

• The Rebecca Run is celebrating its 10th anniversary in 2011. The goal for this milestone is to raise more than $200,000, which will help to bring the total to more than $2 million raised between the Rebecca Run and Angel Gala

• “Market Place” where exciting items will be sold with a portion of the proceeds going towards SMA research

• Complimentary Barbeque, healthy snacks and refreshments before and after the race will be provided for all participants thanks to our event sponsors

This year’s race is scheduled for Saturday, July 9th at Fairy Lake in Newmarket, Ontario. The race offers something for everyone: a 1km family walk/run, 3km walk/run or a 5km run/walk. All proceeds from the run are donated to Families of SMA Canada. The early bird race fee prior to April 30th is $30. To register for the race please visit www.rebeccarun.com. All registrations received prior to June 9th will receive a specialized technical t-shirt with our team name on it. Register early to avoid disappointment.

When registering please indicate that you are a part of Emersyn’s Entourage and email emersynpaige@gmail.com to let us know so we can add your name to our team list on her blog. Some great fundraising ideas that our team came up with last year included: dodgeball tournament, book sale, tennis tournament, teacher vs student soccer match, yoga classes, and head shaving!

SMA is the number one genetic killer of children under the age of two. 1 in 6,000 babies is born with SMA and 1 in 35 people carry this killer gene. SMA is just as common as Cystic Fibrosis but only has a fraction of the awareness. We NEED to change this! The Rebecca Run is a major venue to affect change, raise money and awareness for a cure.

Melanie and I would like to thank everyone for your ongoing love and support. Together we can honour and remember precious children like our beautiful daughter Emersyn who have passed away from SMA and those who are here with us today battling this disease, and together we have the power to find a CURE.

Wishing you love, remembrance and hope,

Melanie, Jason and our Angel Emersyn

“You are my wind and I am your light as a feather. You are my water and I am your gills. You are my sky and I am your wings. And I was born with love in my heart because I was promised you” ~ Thisbe’s Promise

Home Strength

Jason and I are currently coping with the impossible task of packing up Emersyn’s room today for the move on Tuesday. It has been perfectly ‘untouched’ since she passed away 22 months ago. Every item has a memory, a smell, a meaning and is a “linking object” to our daughter. We cannot stop the tears from flowing, giant, sobbing, broken heart tears that are unstoppable and necessary to get through this. What things of hers can we share with her baby sister when she arrives? What things do we put in her hope chest? What things do we display out of reach of small hands in the future? What things are just too painful to even look at? Give her things away...NEVER not for us. The fuzzy brown and pink blanket she was wrapped in after she died, the last sleeper she wore when daddy gave her CPR, her modified teething stick that our OT made for us that she loved so much, her magical Daphne bath seat that allowed her to enjoy her baths and move her legs - can we use that again for her sister or will that be too hard? The bag we brought home from the hospital for the last time with all of her things in it that we have been unable to even look at since she has passed. Every single item in her beautiful room requires careful thought and consideration as to what we should do with them. For each precious item we ask ourselves what would Emersyn want us to do with these treasures? Making decisions for our child is a guessing game and one we HOPE we are doing right.

We know that these are just “things” we are talking about and if Emersyn were here alive, healthy and well we would not even think twice about packing up her things for our move, throwing some old things away, donating them or sharing and passing down her things to her sister but since she has passed no decision is easy anymore. Those who have lost a child can understand the monumental emotional, spiritual and physically exhausting task of changing, packing, moving or altering their child’s room after they have passed away. Every day I go into Emersyn’s room I look at it with a heavy contrast of emotions. I feel great memories as well as painful sorrow that she is no longer here, frustration at all of the things she loved that she can no longer enjoy and play with and most of all heart breaking love because this is where I rocked her to sleep in my arms, where she enjoyed her beloved bath time every night with daddy and rubbed mommies back when she was first born while breast feeding in the cozy glider chair. This is where I sat when I was six months pregnant like I am now and ‘waited’ for her every night while I rubbed my belly and dreamed of how our life with her would be. Our daughter is our world and we want to do right by her and for her. We know Emersyn has such a tremendous giving spirit and so much wisdom and love and would ultimately want us to do two things: firstly for mommy and daddy to do things that bring us comfort while coping here on this earth without her and secondly but also just as equally important, to share her life including some of her special things with her baby sister who we know she already knows and loves so much.

As we pack up today we are not moving on, we are not moving forward I hate those words they are filled with expectations, pressure and a false sense of the journey of grief that there is some kind of imaginary beginning and end to the story of our child passing away. We are “moving” with Emersyn’s spirit and heart coming with us and her baby sister growing in utero and all of our things that we know are only ‘objects’ but if they contain even a trace of Emersyn’s soft black hair, a smell of her warm baby hugs or a memory that we cherish deeply then we must care for them and honour them as these things are sacred to us as her parents. They help us to tell her story and connect with her spirit.

The symbols and ways we express love especially for our child who has passed come through so many different ways. Music, nature, people and words are some of the ways that we connect with our Emersyn every day. To quote some beautiful words that express our love for Emersyn and why everything that we do for her is so important in both her life and her passing I would like to share a few lines from our new favourite book “Thisbe’s Promise” (thank-you Victoria for this gift). “You are my wind and I am your light as a feather. You are my cocoon and I am your crawling clinging feet. You are my sky and I am your wings. You are my water and I am your gills. You are my land and I am your strong whistling legs. You are my tree and I am your long bending trunk. You are my ocean and I am your tail. And I was born with love in my heart because I was promised you”. The other half of our hearts has been taken and we just don’t work the same without you Emersyn but we are trying.

Emersyn we know your spirit will come with us to our new home and that is why we bought it. You guided us there. We could feel your love and light shine through the windows and we all agreed that there was just “something about it” from the minute we walked in the front door. Just like there was, is and always will be “something about Emersyn” that everyone talks about. We will now have a backyard for your garden; an extra bedroom for your things and a place closer to nature where we know you will always find us and send us your beautiful butterflies, dragonflies and lady bugs. We love you baby girl yesterday, today and forever and we need your strength and wisdom to guide us through these next few days as we move to our new space that we plan to fill with your love and your special things. You are the heart of any home that we will create and just like the meaning that your beautiful name represents we hope to take your “Home Strength” with us wherever we go.