Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.





















































Thursday, May 26, 2011

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

Sunday, May 8, 2011

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.