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.

Monday, July 19, 2010

All Over The Place........

This journal will be all over the place as that is how my emotions feel right now. I have a great deal of anger, frustration, love, appreciation, worry, hope, despair, compassion, exhaustion and the long list of confusing and overwhelming emotions goes on. It has been 15 months since my amazing daughter has passed away and sometimes I become frustrated with myself because I don’t feel any ‘better’, I often feel worse, the same or different but not better. I feel like when I say that I am letting people down, like I am supposed to be somewhere that I am truly not. Not that anyone outwardly says that I should feel better but it is something that I just sense and feel, probably more me feeling that than anyone else actually thinking it. The truth is, losing your child is the worst loss and trauma that a person can go through and you don’t just grieve for a while and then move on. I don’t want to feel this way forever but believe me, I can talk myself in and out of feeling, saying and doing lots of things but I am no match for this. No amount of talking, walking, reading, crying, mediating etc.... can fix it; by all means I will continue to fight for us and seek out a pathway of healing but this is a life time gig and we will always need extra support and really good people around us for the long haul. I know we have that in our lives, and we feel so lucky and grateful but we just feel so bad that we ‘need’ people this much. I hate feeling needy. People will say “it’s good to see that you are healing” and the truth is I don’t feel healed. I don’t want to feel like I am giving up but I am trying to be at peace with the fact that I will never be at peace with Emersyn’s death. I love her so much and I feel so connected to her but the fact that I cannot physically hold her or see her creates a daily anxiety that could never be understood unless you have buried your child.

Jason and I just came off of a hugely emotional week last weekend from the Rebecca Run for SMA, which was amazing and made us feel so proud, supported, loved and connected to Emersyn but there is also a price to be paid when you put your grieving heart out there. We know this; we knew that before hand as we understand the extreme lows that can occur after big events, especially those that focus on SMA. Our hearts and souls are invested in this and we have taken this past week or so to recuperate somewhat and now we must tend to our deep grief which we were trying extremely hard to manage through all of our fundraising efforts. Some would say that our fundraising for SMA is a distraction from the pain; a way of coping, the truth is we don’t know exactly what we need so we just try to go with our hearts and do the best that we can everyday to honour our daughter and help others. Fighting for a cure does bring us comfort and hope but it is also very difficult. Nothing is straight forward since we have lost Emersyn everything now comes with a big mess of emotions that we must sort through and cope with daily.

So here I am 15 months later, Emersyn would have been 22 months old right now and I would be enjoying the summer off with my beautiful daughter hanging out with my family and friends and their children. Instead, I am sad, lonely and wounded; it is a daily feat to get through each day. Sometimes I think I may come across as strong and coping just fine which is so far from the truth. I am aware of every breath I take and each and every thing that I say and do which is so tiring. I am searching for signs of real life in me but I just feel like everything is so hard. I know I have taken small steps in being able to manage more day to day things like groceries, house work, teaching part time and doing small visits with family and friends but still I feel stuck, like I should be in a better place.

I no longer laugh from my heart, I want to but I can’t seem to find the ‘heart’ to do it. I hate feeling so sad all of the time so I get angry at ‘grief’ but then I look and there is no one to be angry at so the frustration sets in and the anxiety follows. I can’t let go of what was and what should have been. I am terrified that people will stop talking about Emersyn. I am terrified that people will stop listening to us talk about our child. I am terrified that people will not continue to regard Jason and I as parents which then would mean Emersyn never existed, every bereaved parent’s worst fear. Not sure why I don't trust but it is most likely because the core of my trust has been taken with my child. I have deep faith but I am allowed to be angry and question things, I know in my heart that is healthy and ultimately it will make my faith stronger.

So like I said before, this journal is all over the place because that is how I feel right now. I yearn for a sense of peace as we continue to ride out the harsh waves of acute grief hoping that we will get a ‘break’ in the water soon so that we can come up for a long, peaceful breath before the next storm hits. One day, one hour one minute at a time..........

Friday, July 16, 2010

Emersyn's Entourage & The 2010 Rebecca Run - Thank-you!!

Hi Everyone,

We would like to send out a HUGE thank-you to everyone who registered and/or sponsored a member of Emersyn’s Entourage. Emersyn’s Entourage is a group of very dedicated people who had some outstanding fundraising ideas. Jason and I have seen dodge ball tournaments, dress down days, tennis tournaments, book sales, yoga classes, student/teacher soccer matches, friends who are willing to “Shave it Away for SMA” and collect pledges to help us meet and exceed our goal! As a result of everyone’s hard work we are thrilled to share that Emersyn’s Entourage raised an incredible $20,000 for SMA! The overall funds that were raised for the 2010 Rebecca Run was an amazing $165,000! The Rebecca Run was a huge success on every level thanks to all of the amazing teams, awesome race volunteers, directors and sponsors. None of this would have been possible without all of you! A special thank-you to Louise Smith, Cory Freedman and the Van Fraassen Family for the key role that all of you play in co-ordinating and organizing this event.

The Rebecca Run was a day filled with amazing people, families, sunshine, walks, runs, rolls, face painting, Tigers, music, Jasmine Richards from “Camp Rock” signing autographs for SMA, BBQ’s, head shaving, hugs, laughs, tears and many Angels. There is certainly something extra special about Fairy Lake with its whimsical trails, waterfalls and tall trees, such a perfect setting in nature. As soon as you pull into the park you truly feel like you have entered the Land of Angels. We could feel the magical presence of our Angel Emersyn and all of the other beautiful SMA angels at the race guiding us along the way. We were especially blown away by all of the amazing children with SMA who come out every year and help fight for a CURE! Natalie, Sarah and Rebecca were whizzing around selling the beautiful CURE SMA bracelets and zipper pulls that they made, great job girls they were a huge hit! Hayden MacIntyre who is an amazing boy with SMA Type 1 decided that he wanted to join in and “Shave it Away for SMA”! Way to go Hayden! You are so very brave and inspiring to everyone :-)

It was great to see so many smiling faces and open hearts at the run! We are very honoured, humbled and grateful that people took time out of their weekend to be a part of such a special day. The feeling of love, support, community and hope was so strong! We are also very grateful that the Rebecca Run brings SMA families together so that we can continue to support and lean on one another.

Thank-you for taking the time to stop, think, honour and act for our children who are living with and those who have passed away from SMA. Because of each and every one of you we are so many steps closer to finding a CURE for this disease. Because of you, Angels like our daughter Emersyn’s life, legacy and spirit will continue to live on. There is no greater gift you can give than fighting to save the lives of children and honouring those precious angels who have passed. From the bottom of our hearts we thank all of you for reaching inside of your hearts and igniting that spark that will continue to fuel the fire and passion towards finding a CURE for SMA!

We are honoured to have you as part of Emersyn’s Entourage this year and every year until we beat SMA!

Pictures of the day and videos of the Head Shave and post race Speech can be found at www.emersynpaige.blogspot.com just look under the post from Wednesday, July 14th 2010.

Thank-you for being brave enough to journey with us......

Sincerely and with so much love and appreciation, Melanie, Jason and Emersyn

Wednesday, July 14, 2010

Check out the Videos and Pictures of Emersyn's Entourage & The 2010 Rebecca Run for SMA!

We would like to send out a huge thank-you to our dear friends Nick and Becky Dean for creating this amazing video of the brave men from the 2010 Rebecca Run for SMA shaving their heads to help raise money for a CURE! A huge thank-you to a few good men from Emersyn's Entourage Nick Dean, James Wilson, James Dunsmuir, Dave Brannon, Adam Gizzie and Emersyn's dad Jason Klomp for signing up for this awesome challenge!

They started a trend and inspired others to join in and "Shave it Away for SMA”as Emersyn's Grandpa Pat, the wonderful Hayden MacIntyre 2006 Rebecca Run Honouree and his dad Ian MacIntyre all stepped up and shaved it off for a CURE! Way to go guys!The hype they created around shaving their heads helped bring our team to an amazing achievement of raising 20k for SMA at the Rebecca Run! The overall total funds raised by all teams at the event were a whopping $165,000 towards a CURE for SMA!! WOW! Truly amazing.

When you watch this video you can feel the love, dedication and heart that all of these guys put into helping all of us find a CURE for SMA! A big thank-you to Becky Dean for shaving all of those heads in record time you are awesome! Thank-you to Nick for not only shaving his head but for taking the time to video tape the head shaving moments. To view the famous Head Shaving Video please click here!

Nick has also created a video of the speech that Jason and I gave after the race. To view that link please click here!

To view our photo album from the 2010 Rebecca Run please click here!

An official update with details of Saturday's amazing event for SMA will be coming soon!

Melanie,Jason and Emersyn xoxo

Monday, July 12, 2010

Emersyn's Entourage Raised $20k for SMA for the 2010 Rebecca Run!

Emersyn's Entourage came in at a GRAND total of $20,000 on Saturday for SMA!! The overall total for the 2010 Rebecca Run raised by all teams was a record high of $165,000 towards a CURE for SMA! WOW!! Thank-you to everyone who came out yesterday and who supported and or sponsored the Rebecca Run for SMA!! What a great day and so amazing to see everyone!! Official update with pictures and details coming soon.....!!

Friday, July 9, 2010

Race Kit Pick-up and Pledge Drop off Reminder for Emersyn's Entourage!

Just a reminder to all members of Emersyn's Entourage to bring your cash and cheque pledges tomorrow morning and give them to the volunteers at the ESSO / Fundraising tent for pledge collection and incentive prize pick up. Please remember to tell them that your pledges are for Emersyn's Entourage so we can calculate our team grand total! Information/Race Kit Tent & Fundraising Tent opens at 7:30am.

We are really looking forward to seeing everyone tomorrow morning at the race!

Together we CAN find a CURE for SMA!

Melanie, Jason and Emersyn xoxo

Wednesday, July 7, 2010

Emersyn's Entourage BIG Fundraising Update for SMA!!

Hi Everyone!

Looks like there is going to be a “Few Bald Men” who will have to “SHAVE IT AWAY FOR SMA” on race day at the 2010 Rebecca Run for Spinal Muscular Atrophy.

The numbers are still rolling in but we could not wait to share this exciting news! Emersyn’s Entourage has raised a whopping...

$18,687 Way to go team!!!!

The numbers are still rolling in and we expect this total to rise by race day. The final tally will be given at the race. We are overwhelmed, humbled and extraordinarily grateful for everyone’s passion and dedication towards helping us honour our daughter and finding a CURE for SMA. All of your love and support has given us the strength to continue this journey and fight for a CURE.

Here are some details for Saturday’s big event:
7:30 am Registration and Info Tent Opens
8:00 am Baggage Check Opens
8:30 am Chip Pick-up Opens
8:45 am Kids Fun Run Starts
9:00 am 3k Run/Walk/Roll Starts
10:00 am 5k/Run/Walk Starts
11:00 am Silent Auction Closes
11:15 am Awards Ceremony Begins

· Arrive early as parking is limited and it takes some time if you need to pick-up your race kit or drop off pledges (please remember to indicate that your pledges are on behalf of Emersyn’s Entourage).
· There will be a tent set-up for Emersyn’s Entourage as a gathering point for the team just look for the purple banner
· The head shaving will begin at the conclusion of the 5km walk/roll
· There is a free BBQ for registrants and free face painting
· For directions to Fairy Lake click

Please let us know if you have any questions. We look forward to seeing everyone at the race!

Melanie, Jason and our Angel Emersyn

Tuesday, July 6, 2010

Pictures from the City of Brampton Dodge Ball Tournament for SMA and our Friend Myles!

Remember we told you about the amazing boy Myles who rolled his pennies to help find a CURE for SMA? Here are some very special pictures of Myles rolling his pennies for the City of Brampton Dodge Ball Tournament for SMA in honour of Emersyn! We are so blown away by Myles and his ability at such a young age to have such compassion and commitment to finding a CURE for SMA he is truly an inspiration.

We have also included a few action shots from the City of Bramtpon Dodge Ball Tournament that turned out to be a huge success raising $1,785 towards a CURE for SMA!! We cannot thank the City of Brampton enough for all of their love,support and dedication to helping us find a CURE for SMA and honour Emersyn. All proceeds from this amazing event will go towards Emersyn's Entourage for the upcoming Rebecca Run for SMA. Thanks for helping our team work towards our goal of $10,000!

Many thanks to our friend Myles and the City of Brampton for all of your hard work and support you guys are AMAZING!
Melanie,Jason and Emersyn xoxoxoxoxo

Sunday, July 4, 2010

Emersyn's Entourage Fundraising Update ~ One Week Until the Rebecca Run for SMA!

Hello Everyone,

The countdown is on...only one week to go until the 2010 Rebecca Run for SMA on Saturday, July 10 at Fairy Lake in Newmarket! We set a goal of raising $10,000 and 150 runners/walkers/rollers for Emersyn’s Entourage. We are proud to announce that our team has raised $9715 to date and there are 132 runners/walkers/rollers registered on Emersyn’s team. Way to go everyone this is truly something special! This week is the final push for pledges and we know we can go reach our goal and beyond for SMA. Please continue to let us know how much money you’ve raised so we can continue to watch the numbers rise on Emersyn’s thermometer.

It’s not too late to register for the race or to sponsor our team...online registration closes on Tuesday, July 6th at 9 pm. For all the race details please
click here and to sponsor our team please click here . Our final update will be sent out on Wednesday, July 7th including all of the details for the race day festivities for Emerysn’s Entourage and Rebecca Run.

This has been an exciting journey with all of you and we look forward to reaching our destination with everyone next Saturday morning. Please continue to visit Emersyn’s blog at
http://www.emersynpaige.blogspot.com/ for updates.

Melanie, Jason & Emersyn

Emersyn & Dragon Fly's at the Cottage Inspired a Song from Skyeler.......

Thank-you to our dear friends Nick and Becky and their three gorgeous boys for sending us such a special gift this morning. After spending some family time up at the cottage this is the message they sent us this morning. Thank-you guys for thinking about us as you do always and for including Emersyn's spirit in your family weekend it means the world to us and so do all of you! Your ongoing love, support and dedication to Emersyn and our well being brings us so much comfort and a very deep and special friendship......

Here is Becky's email to us and the beautiful song written by Becky and her oldest son Skyeler that Dragon Flys up at the cottage inspired......Emersyn spent lots of time with Nick, Becky and their three children. Emersyn holds a very special place for all of them in her heart so we have no doubt she was flying by the cottage to say hello and let them know how loved they are.

"Sooooo many dragon flies up at the cottage this weekend, it inspired us to write about Emersyn!"

"Sunshine from Emersyn Lullaby"
Written for Emersyn by her pal Skyeler & Auntie Becky...

(Sung to the beat of “You are my sunshine”)

You are our Sunshine, You ARE the Sunshine
We miss you here with us, each and every day.
We think about you and know you see us
And say hello in your Dragonfly way!

Thank-you for this special gift it means so much to us,
Love always~
Melanie,Jason and Emersyn xoxoxoxoxoxoxo