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, April 7, 2020

Angel Date ~ Little Big Things

This will be our 11th Angel Date Emersyn and with what is happening in the world right now with Covid-19 it is certainly a flash back for us. When we found out at just 4 months old that you had SMA we isolated away from the world in our home in the middle of winter. A simple cold could have been fatal for you as SMA weakened all of your muscles including the muscles needed to swallow, breathe and cough. We had signs up in our home that read “please wash and sanitize your hands” along with masks, gloves, a pulse ox and other medical supplies and equipment needed for your care. This way of life quickly became our new normal yet felt anything but normal. The rest of the world carried on and we came to a screeching halt into isolation and fear of any germs coming our way as we did everything we could to protect you. We feared grocery stores,coughing people,germs in the pediatricians office and in the emergency room when we rode by ambulance after Daddy brought you back with CPR. We lived on high alert but we also created memories that would last a lifetime. The joy and the pain co-existed at maximum capacity in the small moments that meant everything.

I remember my whole body aching when I would wake up. I was overwhelmed with worry, fear, anxiety you name it and I remember wondering why I was so tired when I was home all day. I know now that grief and trauma can be as exhausting as a marathon if not more so. I also remember the moments of anxiety would be quieted with one look at you and we would start the day with a cuddle, a song and always somewhere in there some good laughs! We sat in our family room reading books, cuddling, singing, dancing or just sitting together playing in your baby gym with the lightest weight toys fashioned by Auntie Erin or our wonderful OT…. and those were the moments I could feel my heart fill up with joy. Even after your official diagnosis in the Neurologists office at McMaster Auntie Catherine,Daddy and I were singing and dancing with you when we left. No matter how scary of a night we had we learned the next morning we would reset, rally and embrace the moments together.

I remember the week you were diagnosed saying to Granny that I felt like I needed to be in the hospital. Of course that quickly changed as home became our oasis but I remember thinking that we should be taken care of so we could just spend time together. I remember saying that I was in so much pain at the thought of losing you that I should be wearing a hospital gown eating jello as being home trying to carry on as normal felt impossible at first. The next day I remember Granny leaving a huge bowl of jello on my porch and Auntie Catherine and Auntie Erin leaving me a box of heart shaped ginger cookies as that is all I could eat some days. Just knowing that people were there for us was enough to give me strength to keep going. I still have a little bag of those ginger snap cookies by my bed to remind me that it is the small things that carry us through.

A shower helped me. I learned that waking up and showering first thing, getting dressed and putting on some makeup (as crazy as that sounds) made me feel better. Although I would often feel too exhausted to dry my hair I always felt better after a shower. A routine in the day felt good, even a simple one. I quickly realized that these self caring rituals that at first seemed selfish made me a better Mom and able to continue to rise each day. A hot drink, a call from a friend, a laugh, a cry,a short drive and any expression of emotion was a huge help in my coping and bringing me back to my greatest joy which was creating memories with you. You taught us the little moments from our bed looking out the window at the sunny white snow or singing Bob Marley songs from the hospital bed with my sisters was where the meaning was. Before social media was big a small note, card, gift or email from someone meant so much and still does. Amidst all of the pain we learned to surrender into love and savour the little things. The kindness rocks we have found in the neighbourhood on our walks this week, the notes and cards from friends when we need them most all of these little things have kept us going and feeling connected to you. As I see people coming out of their homes to cheer for our medical heros at shift change or giving a huge thank-you to our delivery drivers and grocery store workers it is all of these things that help us make it through. So today as I think of ways to honour you I think helping others with your story would be what you would want us to do. In sharing this little big thing our hope is that even for a moment someone smiles or feels some peace today. So here is me sharing your message with the world and hoping it helps even a little…..

Hello Beautiful Amazing World,

It’s me Emersyn sending everyone in the world right now a special message that I hope will help you feel even a little bit better. You all helped me so much so I will continue to try my hardest to help all of you when you need me most. I know you are having a really hard time right now and I am so sorry you are all going through this. I want everyone to know that it’s ok to have hard days, you are human and need to honour these normal and powerful feelings. Being strong doesn't mean ignoring hard emotions it means feeling them, expressing them and doing our best to care for ourselves and others. Sometimes our best is PJ’s all day and spending time on the couch together and that is just fine. Some of my best memories were days like that.

I was worried that the weight of my diagnosis would be so heavy my family and friends wouldn't be able to have moments of fun and joy with me. What I learned was even though they were heart broken, sad and scared they would always find time each day to just be together with me and do little things that felt so big. They were brave and I was so proud of them. While the world was happening right outside our snowy window it was like we were living in a bubble where none of the things they thought mattered before mattered anymore. People used to drop food on my porch since my parents were too scared to go to the grocery store in case they caught a virus and brought those germs home to me. My parents did not want to go out in public places where there were lots of people so when visitors came we had signs up to remind them about hand washing and sanitizing which everyone was really good about. Everyone was really brave. I thought all of my family, friends and even people I never met were my heros.

I want everyone to know that although these days are hard and scary you were made for this. When all else fails love and hope remain and I promise you they will carry you through your darkest days. I remember in my final days in the ICU at McMaster Children’s Hospital when my Aunties and Mom sang Three Little Birds to me, I remember when my Dad would place me on my sheepie and hold me up and we would pretend to be cowboys dancing up and down the hallway,I remember my Mom wanted to just take me to the park so we went and she placed me on her chest and we slid down the slide together, I remember when my cousins would read me stories with such animation I would laugh with my belly, I remember when my Granny and Grandpa would do a puppet show for me and make me smile. None of these things cost a thing because nothing money could buy could create the memories we made.

When I passed away with my Mom and Dad beside me they felt my soul leave this world on this exact day in April 11 years ago. What they did not know then was that all of the little things were actually the biggest things that created memories for a lifetime. It is the little things that slow us down long enough to really understand why we are here and how important caring for each other really is. So my hope on my Angel Date today is that you find a little thing and allow yourself to feel like it is a really big and amazing thing. I promise you that your little things moments will become the best part of your day and will become some of your best memories. If you feel like sharing your little moments with my parents today I know it would certainly cheer them up. I know they love to hear when I have touched your hearts.

You are all staying home for really big reasons and it is not easy. I see my brother and sister missing their friends and family while trying to learn at home while my parents are trying to do the same. I want you all to know that you are amazing magnificent humans and I have your back. You can do this guys because you already are and if you need someone to talk to I am here to listen.

Keep making the little things big,
Love Angel Emersyn xoxoxo

Monday, September 16, 2019

Happy 11th Birthday Emersyn

September 16th 2008 is your day Emersyn. Today represents the sacred day you were born and a day I will never forget. I can recall every detail of that day and the transformation that I felt meeting you for the first time. I remember my 22 hour labour and look back on this as the most sacred experience of my life. You would be 11 years old today and in Grade 6 and no doubt an amazing girl with a magnetic spirit and dreams bigger than I could fathom. Some may wonder why 11 years later I still write to you on your birthday but you know it is a not a choice it is a fundamental need I have to connect with you and share your legacy.

At every birthday celebration I go to I think of how you only had one when you were 5 months old when we decided to have a big party for you. After you were diagnosed with SMA at 4 months old we did not know how long we would have with you. We marked each day and month with mindful gratitude amidst the sorrow of your diagnosis. I felt like I could conquer anything the day you were born and I remember feeling like the rest of me was born that day along with you. Bursting with pride and hope we brought you home our perfect  baby girl and we could not wait for our friends and family to meet this incredible little human and the best part of ourselves. Just like that feeling of wanting to share you with everyone then I still have that desire to share you with the world so here I am on your birthday like I do each year sharing you.

I share you through the lessons you continue to teach me and I reflect on the way I have changed. At 42 I feel very different than I did at 31 but what has not changed is the love and empathy you rooted deep within me. When I find myself getting caught up in the day to day schedule I stop, close my eyes take a deep breath and ground myself with you. In a time of technology overload, social media saturation and less face to face time with each other I think about those 7 months with you. We were tuned into you and our family and friends on a sacred level of connection that we will never forget.

Humans are meant to be together and you taught us that ten fold. We may travel the world in search of new places, things to see and people to meet but nothing will compare to being tucked away at home with you watching the snow fall and feeling your warm snuggles and chubby hands holding ours. You grounded us in a love and mindfulness that I strive to feel at that level again in a world where we need it more now than ever.

May your life, legacy and spirit continue to be that grounding force for us and others who may need it in their journey. You taught us that we didn't have to be anywhere special to feel love, connection and peace we only had to be together. Today as we always do Isla, Callum, Daddy and I will be together and remember the amazing day you were born. We still cannot believe you were born 11 years ago as it felt like yesterday I was calling daddy to tell him I was in labour and beyond excited to meet you. The first granddaughter in our family was arriving and everyone was elated. As long as I live your birthday will continue to be sacred and I hope that your message of grounding love, togetherness and peace helps anyone who might need it. So today we will close our eyes, take a deep breath and think of your life and spirit to help us to cope, navigate and appreciate this extraordinary journey we are all on together.

Just after I wrote this message to you this morning I received an email from a family thanking us for the sheepskin we donate to newly diagnosed families through Families of SMA Canada care packages. The family shared their gratitude and said that their little boy is feeling comfortable and cozy on his new sheepskin and is also enjoying holding your card with your picture on it. It is no coincidence that I opened the email from this special family today. Emersyn you continue to amaze us with your gifts that continue to help others and us when we need it most. Thank-you to this special family and their sweet boy for reaching out to us and sharing your beautiful pictures we are so grateful. Thank-you for letting us share your pictures on Emersyn's special day it means the world to us.

This song is for you Emersyn on your 11th birthday we love you and miss you always. Thank-you to all of our family and friends who continue to help us carry Emersyn's legacy. We are eternally grateful for all of your love and support.

Mom, Dad,Isla and Callum xoxoxoxoxo