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.

Tuesday, September 16, 2014

Happy 6th Birthday Emersyn!

As I sit here on the day before your 6th birthday I remember it like it was yesterday. The summer was quickly ending and the fall was gracefully starting to unfold with the cooler nights, sunny days and a sense of new beginnings in the air with back to school and the leaves slowly changing. Without a doubt this used to be my favourite time of year and I could not wait to meet our new baby and mark the new season with her birth! This was my first baby and looking back I was more prepared for Emersyn’s birth than Isla or Callum’s since my whole pregnancy was focused on being as physically and emotionally healthy and ready for baby as I possibly could! Jay and I had just finished our natural labour and delivery classes that we loved going to every week and I felt so ready to meet our first child. I was so different then. I had the ability to quiet the doubts or fears in my mind about labor, being a first time Mom or any worries that every parent has about their baby while pregnant with simple positive thoughts. I had innoncence and hope. I remember this time in my life as though it were perfect which I know is not really possible but to me looking back that is how it feels.

I remember driving to meet Jason for lunch the day before my due date and feeling the perfect combination of excitement and anticipation about my upcoming labor and tearing up at just the thought of meeting our baby girl. I remember the songs playing on the radio as I was driving to meet Jay and wondering if it was a bad idea to be driving around when I could go into labour at any moment! Again my inner voice was much calmer then and I decided that I was overreacting and that I needed to get out of the house and distract myself for a while. Jay and I had lunch that day; I was pretty emotional and uncomfortable to say the least since I was exactly 40 weeks along! I remember driving home that afternoon feeling tired and thinking that first babies always come late so I would most likely go “overdue” and the likelihood of me actually having Emersyn on her “due date” was so slim. Sure enough later that afternoon my waters broke at home, contractions started immediately and luckily Jay was already on his way home early. I remember a moment in my labor with Emersyn when Jay was downstairs with our midwife before we left for the hospital when I was in our bedroom holding my belly and talking to Emersyn. I remember feeling so excited to be meeting her but I was also so sad that she would not be a part of me physically anymore. I told her that I would miss feeling like it was just her and I and that I was scared to let her go. I look back now and wonder if somehow I knew intrinsically that she would not be here for very long and that if only I could have kept her safe in my womb. I remember feeling like I wasn’t ready to share her with the world just yet.

The next day almost 24 hours later around 2:30 in the afternoon on Tuesday September 16th 2008 on her due date Emersyn Paige was born and I felt like the luckiest person alive. I felt so full of a new kind of love that was totally overwhelming and completely amazing! She was perfect. I felt so powerful like my body had accomplished what its destiny was meant to do and I was full in my heart and soul. I could have died happily at that moment but I wanted more of my baby girl. I wanted to see her grow and laugh and show the world how awesome she was! I wanted everything for her and I had a sense of fierce protectiveness for this beautiful little soul in my arms. As a first time Mom I was new to breastfeeding but as soon as my midwife put Emersyn in my arms she latched right away and I remember feeling so utterly amazed that I could nurse my child. Suddenly I had a new found confidence that this little girl brought out in me on the day she was born. I remember my Mom walking into the hospital room to meet her for the first time and I was so proud to show her off nursing and cuddling in my arms already like it was just meant to be. And she was, this little brown eyed dark haired beauty was mine and she was meant to be and I was bursting with so much love and pride I could have honestly floated away!

Today 6 years later on Tuesday September 16th 2014 here we are on your birthday, your day, our day, the day we met and fell in love. The day we waited for and dreamed about, the day you my sweet girl Emersyn were born. The day you made me a Mother and you my daughter. I replay your Birth Day in my mind everyday and I remember every single detail and I still feel those same emotions of wanting to burst with so much love. I have to stop myself from trying to negotiate and beg God to just rewind time and give you back to me. I have to stop myself from letting my imagination run wild with birthday party scenarios and what you would have looked like as a big Grade 1 girl now. You probably don’t want me to sit and torture myself with the ‘what if’s’ Emersyn but you are my child my heart doesn’t know how to not do these things.

I want to say that for your birthday I am healed, I want to say that for your Birthday I am not crying anymore, I want to say that for your Birthday we smile and feel no pain but I can’t you are far too precious of a person. It’s been 5 years without you, 5 long years of learning to live all over again and find good things in a world where you no longer exist physically. For some reason this past year has been extra hard for me in grief. I think because I am back doing day to day things again and not getting much sleep so my energy levels leave me very little time for my grief work and that always catches up with me. Your beautiful sister Isla and larger than life brother Callum that you sent to us keep me going and give me so many reasons to live, love and hope for the future. Callum has your determined and strong spirit and Isla is starting to really understand that you are her sister and she initiates talking about you and asks lots of questions. She is excited for your birthday and the cupcakes we will have and the flowers and balloons we will bring you! Isla says it’s your birthday Emersyn but we can’t see you because you are an Angel in the sky playing with the dragons in the clouds. Oh how I wish she is right and you are playing in the clouds and celebrating your day while feeling our love. Your signs keep me going and I no longer worry about whether or not it is really you and that is a gift in my grief from you. I have come to know your messages and I am now confident in interpreting them and feeling certain that they will continue to come at just the right times. Newly bereaved parents contacted us today and as my heart completely breaks for them I also know it is no coincidence that they reached out to us during such a significant time…… I know that it is you my amazing girl who sent them our way.

There is a saying that I like about grief being the price we pay for love. I want you to know Emersyn that walking
this path of grief is how I cope with loving you so much and not being able to have you physically here. I have all of this love that I am still bursting with for you and I have to let it out somehow which is so very hard to do when you are not physically here. I want you to know that as soon as summer begins to change to fall I see you. As soon as the summer nights start to get cool and the back to school buzz begins all I can think of is you. As soon as I see a little brown haired girl skipping along with her backpack from the school bus all I can picture is you laughing and running towards me to tell me all about your day. As soon as the Monarch Butterflies start appearing in the most extraordinary of places I see your smile. As soon as September arrives I feel like a part of me is still waiting for you to be born while the other part of me is still trying to understand that you are gone. And every September in a place somewhere between heaven and earth between reality and dreams you and I exist together on your sacred day where we embrace once again in perfect harmony just like we did 6 years ago today for the first time when you made me a Mom.

Happy Birthday my darling Angel Emersyn…… not a day, hour or minute goes by when your heart does not beat with mine.

I love you further than forever and always,
Mommy, Daddy, Isla, Callum and the whole Family who love you so much xoxoxoxoxoxo

Saturday, July 5, 2014

2014 Rebecca Run for SMA Emersyn's Entourage -- Thank-you!!

Dear Family and Friends of Emersyn's Entourage!

Today was a HUGE success thanks to all of you!! We would like to send out a huge thank-you to everyone for coming out today to the Rebecca Run for SMA!! It was awesome to see everyone and an honour to have our amazing family and friends come together once again for Emersyn and everyone affected by SMA. Thank-you for spending your Saturday morning with us and/or sponsoring us in helping to make this years run another extraordinary success!! $106,000 was raised today towards a CURE for SMA and that is amazing!!!! A great day with a Community of extraordinary people doing life changing work is a magical day my Angel girl would be very proud of!

We hope everyone enjoys the rest of your weekend and has a wonderful summer! We appreciate your ongoing love and support more than you know.

Hugs, love and many thanks to all for your hard work!!

The Klomp Family

"Together We Will find a CURE for SMA"

Monday, April 7, 2014

Five Years Ago Today ~ Footprints

I can remember five years ago today like it was yesterday. It was like my husband Jason and I had left our physical bodies to travel to the world in between heaven and earth for 22 hours as we “carried” our beautiful daughter Emersyn over to the other side. 22 hours….the same length of time as my labour with her. We were not screaming or panicking or even pleading at this point with God to make her stay like we had been in the days and months after her terminal diagnosis where I remember curling up into a ball on the floor in her room beside her crib crying, screaming and begging for this to be a bad dream. We were lucid unlike the days after her diagnosis when my mom and sister literally had to carry me with my feet limp and dragging on the ground to go back to our pediatrician’s office to talk in depth with him about Emersyn’s SMA diagnosis. We did not fall to our knees and collapse at that moment with grief like we did on the kitchen floor when we returned home from the hospital after she died. For that moment it was like Emersyn took our hands and guided us to what was important and sacred and above all of the noise and distractions of this physical world. She overrode fear, doubt and medicine as she zoned in on us as her parents, her advocates and her voice. Something bigger than us, bigger than SMA bigger than breathing machines and her collapsed lung was grounding us as every parent’s worse nightmare was coming true. Emersyn knew it was her time to go and like the brilliant, surreal, savvy and captivating little girl she was although only 7 months old she made sure we as her parents received her message, tuned into her energy and were present enough during those moments to walk with her to heaven and honour her wishes.

I look back now and cannot imagine doing this journey again without frantically screaming at the doctors in the PICU at McMaster to save her, help her, do whatever it takes to keep her here regardless of the outcome - JUST KEEP HER ALIVE DAMNIT!! But I know in my heart and in my gut that we didn’t do that not because we “gave up” or because we were in shock and all of the other cliché’s that big movie or TV series dramatize when they portray parents losing their children, but because our intense love and instincts to meet Emersyn’s needs were so extraordinarily heightened during those moments. It was like Emersyn although just a baby had taken the wheel and we were her passengers. If you were there the day she passed away then you know this sacred feeling and sense that I am talking about. It was palpable.

Every time I wonder if we should have intubated Emersyn despite her constant coding and collapsed lungs and rejection of her g-tube feeds, every time Jason and I need to talk about all of the trauma and the choices we as her parents had to make in her final days which as bereaved parents comes with the territory unfortunately, ongoing lengthy exhausting heart wrenching discussions, every time I start to feel like I have no idea how we held our daughter as she passed away in our arms for 22 hours without dying ourselves, every time I look back and think about Jason her super hero dad carrying her out of McMaster Children’s Hospital after she passed wrapped in her sheepie looking like a beautiful princess as our dear friend Nick drove our car to Oakview Funeral Home while we held her so quietly and calmly in the back seat, every time I think about how I had to eventually leave her body at the funeral home before coming back the next morning to sit with her and hold her again, every time I think about Jason and I being driven around our cemetery to choose a grave in the children’s Garden of Angels to lay her precious body to rest, when I kissed her beautiful face for the last time, every time I honestly, truly, genuinely have no idea how we were able to do any of those things. What parent could possibly get their brain around doing any of those things?? What parent could possibly function at all while losing their child?! Were we completely and totally disengaged and certifiably insane?

The only conclusion I have is this----no amount of shock or denial could prevent Jason or myself at that time from totally and completely losing it which would have been 100% undeniably understandable and beyond justified and believe me those feelings inevitably came crashing in shortly after losing our beautiful daughter. The only one explanation that could possibly make any sense is Emersyn and her powerful ability to reach us on a level that guided us through this moment in time. On this day five years ago we cried, we ached, we held our daughter peacefully and without interference from the “outside world” as she passed away. Emersyn made her mark and chose her time and made sure we heard her and honoured her chosen time of passing as painstakingly tragic as this is for me to acknowledge out loud I will acknowledge it today for her. I will acknowledge this sacred truth because I know she would want me to.

Although we were in the PICU it didn’t feel that way. All of the machines disappeared, the doctors and nurses faded away and we had the horribly painful yet beautiful and sacred honour to walk with Emersyn to heaven as Brahms lullaby played and our loving family and friends waited outside the room. We will have no greater purpose or calling in this life than to carry our child to heaven. We honored that moment for her and with her and the shattered pieces, unwavering pain, fear, guilt, anguish, loneliness, sadness, doubt, trauma and the knock you down again and again and again relentless grief of being a bereaved parent would come later when we returned from our journey of walking Emersyn to heaven. As parents we all put our children first and ourselves second even if that means spending the rest of our lives trying to cope and function without our little girl.

Five years ago today for those 22 hours on April 7th 2009 Jason and I who are not religious had the most tragic and spiritual experience any parent could imagine. We walked our little girl to heaven and as she passed we felt her soul filter through us and that is as close to God as we will ever come. Every time I feel immense anger and rage at God for taking my precious little girl I remember Emersyn is as close to God as we will ever come in this life. She is our Angel who watches over her sister Isla and baby brother Callum and if you have met these two gems you too will be certain that they were handpicked and heaven sent by their big sis. Jason and I who are not religious, but spiritual people relate to one quote that sums up the only answer we have when we think about how we could have possibly walked this journey with Emersyn five years ago today on April 7th. My dear Emersyn we did not walk with you to heaven, you carried us and we are forever grateful for you our courageous and amazing little girl. We miss you we love and we thank-you for being YOU and leaving your Footprints behind in our hearts forever.

~ Footprints ~

One night I dreamed I was walking
along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed that
during the low periods of my life, when I was
suffering from anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord, "You promised me
Lord, that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods
of my life there have only been
one set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."

Monday, March 31, 2014

2014 Rebecca Run for SMA - Emersyn's Entourage!

Dear Emersyn’s Entourage!

It’s that time of year again to gather your friends and family and join us for the 2014 Rebecca Run for SMA on Saturday July 5th at Fairy Lake in Newmarket Ontario The race offers something for everyone: 1km family walk/run/roll, 3km walk/run/roll or a 5km run/walk/roll. All proceeds from the run are donated to Families of SMA Canada. The early bird race fee prior to April 30th is $40 per person. To register for the race please visit www.rebeccarun.com.

All registrations received prior to June 6th will receive a specialized technical t-shirt with our team name on it. Register early to avoid disappointment as spots fill up FAST! When registering please indicate that you are a member of Emersyn’s Entourage and email melanieklomp@cogeco.ca to let us know so we can add your name to our team on Emersyn’s blog. If you are unable to join Emersyn’s team on July 5th please consider sponsoring us by clicking here

Features for this year’s event include:

• Our 2014 Race Honouree is amazing SMA Warrior Arran Edward Deegan, a beautiful little boy who was diagnosed with Spinal Muscular Atrophy Type 2. Click here to read more about this precious little boy and his amazing family.
• The Rebecca Run is proud to be celebrating its 13th anniversary in 2014 – what an accomplishment!
• “Market Place” will be there again this year 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 generous event sponsors
• Check out the Rebecca Run Prize Incentive Fund Raising Rewards!

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 has a fraction of the awareness. We NEED to change this! The Rebecca Run is a fantastic way to raise money and awareness for a CURE for SMA. Since the launch of the Rebecca Run 13 years ago an extraordinary $2 million dollars has been raised for Families of SMA Canada – AMAZING!!

Jason and I would like to thank everyone for your ongoing love and support in helping us honour Emersyn and raise money towards a CURE. It will be 5 years on April 7th, 2014 since Emersyn’s life was taken at the age of 7 months old from SMA Type 1. For us it feels like yesterday. Emersyn’s sister Isla and baby brother Callum will only know their big sister through pictures and the stories we share about her. It is through events like the Rebecca Run where they will be able to continue to honour their big sisters life and spirit.

We miss and love Emersyn in a way that words could never express and we will forever carry the pain of losing her to this tragic disease. In honour of Emersyn’s 5th Angel Date and in honour of all of our SMA Angels and Warriors we need your help to raise enough money to CURE SMA.

Wishing you love, remembrance and hope and please know that one person’s support can make a HUGE difference!

Melanie, Jason, Isla, Callum and our Angel Emersyn

~ “But love does not die. The script of her life is written in my heart and it still glistens in the soul of my memory” ~