My 10 Discoveries in 10 Years

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A new stepping stone for Ava to commemorate her 10 year angel-versary.

{As usual, all thoughts are my own. Everyone experiences grief differently and these are my thoughts and experiences.}

July 6, 2021 marked ten years since Ava passed away. Over the past ten years, I have learned a lot about grief, living without my child, survival, and reactions to life’s unexpected events. I have read countless books, blog posts, and social media group posts. I have attended private and group counselling. I have written down my thoughts and shared some on my own social media platforms as well as in my blog. I have started and stopped writing a book I don’t know how many times. I have advocated for childhood cancer, shared my story publicly, and stood up for what I believed in.

Ava’s journey and story have inspired many. Ava was the face and inspiration behind a national campaign to raise funds and awareness for childhood cancer for WP Creations. I/we have shared Ava’s story with countless professionals – the Saskatchewan Cancer Agency Board of Directors and CEO, the SCA Executive Council, the SHA Board of Directors (formally Regina Qu’Appelle Health Board), directors of Woman and Children’s Health for SHA, and the Provincial Minister of Health. I have been interviewed by the Regina Leader Post as well as CTV Morning Live many times. Randy has shared Ava’s story for the Saskatchewan Children’s Wish Foundation events. I have coordinated and held flag raising events at City Hall and the Saskatchewan Legislature. I have shared Ava’s story at the Small But Mighty walk. Ava was featured in the Truth 365 and her story has been shared with Childhood Cancer Canada. I have been featured in the Directors Comminqué for Regina Catholic Schools. I have shared Ava’s story and been featured in the Silver for Gold initiative for collecting tabs for childhood cancer research. It sure looks like I have done a lot, but let me tell you, there are a lot of parents of children affected by childhood cancer that have done way more than I have. One thing remains 100% true in all of this: I always feel that is never enough and I always feel forgotten about.

It has been a long time since I wrote a post, not because I didn’t have a lot to say, but because I didn’t seem to have the same motivation to write. I mean, who really wants to keep hearing from me?! The same pictures. The same emotions. The same thoughts. Is my writing all the same just repeated in different ways? However, writing helps me. It is for me. Even if no-one reads a lick of what I write, that shouldn’t matter. What matters is it is an outlet for me that indeed helps me sort out my thoughts and makes sense of my feelings. I suppose it is like an internal validation. It definitely is my connection to Ava.

10 years is a big milestone. One that definitely caused me to think of what I wanted to say. I always like when I read posts about top 5 things…I just could not stick to 5! That being said, here is a summary of 10 things I have learned in 10 years. Each one could be a post all their own…maybe that is what will evolve from this…There are actually much more than 10 things, but when I sat down to write, these discoveries popped out the most for me.

10. Some people will stay, some will go, and that’s OK

This one is loaded and could be a post on its own because it encompasses so much hurt. So.Much.Hurt. How dare you walk out on me after I just lost Ava? How dare you unfriend me? How dare you ignore me? Truth is, everyone needs to do what is best for them and I get that. Some people just can’t stick around and hear about their worst nightmare – their child dying. I am a big load to bear. It is easier to walk away. I understand. I commend the ones who have stuck around – who listen, who cry with me, who try to understand. You are the true heroes. By sticking around you will learn a lot and be able to help others who will you will encounter in your life who will go through something similar to me. I just want to say thank you for staying. And for all the new friends in my life, thank you for coming into this world of child loss. I sure appreciate you, too! You didn’t know Ava, but are getting to know her through me. That is how her memory lives on.

In summary, people come and go out of your life all the time. Not every person you encounter is meant to stick by you forever. That is OK. I choose to embrace my small circle of loyal friends – you know who you are.

9. Life is so very precious. Do whatever you can to save a life.

Well now, let’s throw in a pandemic and see how people handle that! Again, this point could be a whole other post on its own but I’ll summarize it: Get vaccinated, get a flu shot, follow public health advice…at the end of the day, it is not about you, it is about the greater good of society as a whole. I lost my most precious daughter to a disease that could not be prevented. Here we are with 100% capability to prevent death by following simple rules and so many people out there choose not to – choose not to! People choose death over following simple rules. People are up in arms at their lives being inconvenienced. Oh my goodness, how lovely for you to have never had immense tragedy and trauma with losing a love one! You must think you are untouchable! I am driven by the worst loss imaginable and I am not special – it could happen to you. Do whatever you can to save a life, life is precious.

In summary, be a part of the solution, always. If you can save a life, do it.

8. PTSD and trauma triggers are 100% legit and should be taken seriously.

Rewind to March 2020 and my feelings of complete shock and emptiness. Everything cancelled. Schools closed! Sickness, death…I feel myself sprial – oh, kinda like everyone else. I have felt all of this before…why have a felt all of this before? I have never been through a pandemic, so why does this all feel so familiar? Oh…oh…wait a second…because yes, I have experienced this exact feeling…Rewind to August 8, 2008 and Ava being diagnosed with cancer. Our lives stopped. We had to cancel everything. Ava was very sick and not allowed out of the hospital. All of those fun toddler and family activities cancelled just like that and no notice of when, if ever, things would get back to normal. The hospital was our new normal. Treatments, chemo, surgeries, blood tests, entertaining a sick toddler and caring for a newborn were our new normal. What came along with that were everyone in our lives who had an opinion on how I was handling it – “Stay positive.” “Be strong for Ava.” “Don’t let her see you sad.” “Don’t think like that, Sherri.” “She’ll have Halloween next year, Sherri.” “Think positive, Sherr.i” when in fact, none of these were guarantees. Acknowledging the enormity of my feelings as a 32 year old mom of two young children thrown into this this life/death situation was what I needed. I did not get that. I also believe that everyone was saying and doing what they thought was best. We were thrown into such a fast moving, acute situation that everyone was in shock and emotions were running high. Everyone did the best they could with what they had.

It was not until years later and a lot of counselling that I saw the gaps in how I dealt with my feelings in those early and shocking days. Mental health is a such an accepted thing these days but my mental health didn’t seem to be recognized or acknowledged properly in those early August 2008 days. Fast forward to March 2020 and all those same feelings of the “unknown” and life events as we knew it being cancelled and there became PTSD for me. The trigger of the pandemic released all the trauma from those early diagnosis days. The difference this time was everyone in the world now knew how I (and every cancer mom out there) felt when Ava was diagnosed. It is truly devastating to have your world stop for a medical crisis. I hope that everyone out there now gives people grace and empathy when they have a traumatic event happen. For now, we all know better as a society of exactly how that feels to have the rug pulled from under you. Acknowledge those feelings.

In summary, mental health stability is important. Listen and acknowledge everyone’s feelings. Empathy is a an amazing quality to possess. Acknowledging feelings is huge. It is not your job to tell someone how to feel. It is your job to be present and listen.

7. Thank goodness we actually recognize mental health issues these days. My child died in my arms, I will forever have mental health issues.

This one piggybacks on the previous point of the importance of recognizing mental health. Recently I listened to a podcast with David Kessler and he said “The worst loss is your own”. This stung. I believe the worst loss in the world is the loss of a child. I am living it and I honestly can’t imagine any other loss being as excruciating as this one. However, that is the loss I am living and therefore, the worst loss is my own. There were a lot of traumatic events over the course of Ava’s 3 year journey but the night she died, the finality of it all, was the worst. I was not prepared for life without her or for the domino effect her loss had on every facet of my life. I constantly have taken steps to deal with the loss and to move forward with life. But, grief and trauma rear their ugly heads a lot and affect me in different ways at different times. It is who I am. I am deeply affected by the loss of Ava – your child dying messes you up. That is a fact. {Note: Before you all start asking me if I am OK, rest assured that I am fine. I am just stating an obvious fact that you can’t go through something so life-altering and not have it change you in many many ways.}

In summary, mental health is defined as: “A person’s condition with regard to their psychological and emotional well-being”. My mental health is a continual work in progress because of the trauma of losing Ava. That is not a good or bad thing, it just is. It just is.

6. All social situations are ridiculously hard.

The burden of grief is heavy. It is woven into my very existence. Any type of human interaction is hard because of my loss. I can’t explain this well, but it just is.

It is hard to meet new people. It is hard to make friends. It is hard to have conflict. It is all hard. The grief feels like a dark cloud that is always there. It is hard to explain your situation to people and sometimes it doesn’t even feel right to bring it up. It is often met with a sense of awkwardness with people not really knowing what to say. When you are this anomaly, it is definitely easier for people to just walk away from you. For me, sometimes it is just easier keeping to myself. I have exhausted myself for 10 years trying to explain how I feel and how hard life is, but realized that unless you walk this journey, you will never really understand. So what’s the point? People quite often assume that if you look “normal” and aren’t walking around crying all the time, that you are fine. Biggest lie ever. It is a mask. People will see what they want to see.

In summary, social interactions, situations and basically, all relationships, are difficult.

5. Joy exists. All around me. Joy exists.

Having fun and even laughing are all joyful moments. And I have them – a lot of them! I enjoy life with my other children, Alivia and Anaya. I even have fun with Randy! LOL! I don’t feel guilt either when I experience joy. I try to embrace the moment and live each day to the fullest. Ava is my role model. She lived each day, even each nasty day, to the fullest. She got dressed, played, sang, danced, and was joyful all day. I mean, if my girl can do that in the hospital with a bunch of tubes in her, surely I can do that in my life, right?! Somedays are harder than others, but I do try to remember and emulate Ava’s zest for life as much as I can. I have many joyful moments with Alivia and Anaya. These are genuine, happy moments and they occur all the time.

In summary, joy still exists. Laughing is still good medicine.

4. I want to live AND I want to be successful. WHAT?!

It is common for me to hear “I can’t imagine losing one of my children. I would just die.” I know, I know. I used to think that, too. There were moments I lay beside Ava in the hospital and I would say to God: “please don’t take her from me, please don’t let her die. Please let her live.” In those dark moments, I was convinced that there was no way I would be able to live without Ava. Yet here I am. And the weird thing is, I don’t want to die, too, I want to live! Life is so precious and the very least I can do for Ava is live. Ava would have wanted to stay and wanted to live.

I also don’t just want to settle in life. I want to be successful, I want to achieve something in my life – to leave some sort of legacy about Ava and something for me. She continues to drive me. I want to make a difference and leave an impact.

I would also say, that I would give up everything to have her back. There is not a single day that goes by that I wouldn’t trade it all to have one more day with Ava.

In summary, life is worth living.

3. You should be horrified when there is any type of injustice or death of a child, any child.

Obviously my cause forever will be childhood cancer because it there was more awareness and research for it, Ava would still be here.

It is true that children are our future. Children should be protected. You should seek and find out what you can do when there is any harm brought to children. There is a lot out there these days. Again, there are so many things coming to light right now in the world, that this one is another blog post in itself.

In summary, advocate for the lives of children.

2. I would take any other life catastrophe if I could have her back

100% true. Take all my worldly possessions – I’d give it all away to have Ava back. I remember when I ran the business and people would walk into my house. We have a huge front entry way with high ceilings and it is beautiful to walk into. Lots would say something like: “Oh wow, you have a beautiful home.” And I would reply “thank you”. In my heart, I wanted to say: “I’d rather be homeless; I would take living in a box under a bridge if I could have my Ava back.” I would take any other horrific situation than to be living this one.

In summary, I would trade it all to have Ava back with me.

1. I will miss Ava forever and grieve her forever. A piece of my heart is missing and I will never be whole again until I am reunited with her. I miss her. Lord do I miss her. I still ache for her. I long for her cuddles. I long to hold her hand. I miss being silly with her. I miss her laying beside me. I miss her warmth. I miss her joy. I miss it all. I will miss her forever. I love her and therefore will grieve her forever and ever. In summary, don’t put a time limit on grief, it is forever and I wouldn’t have it any other way.

It is unbelievable to me that Ava has been gone for 10 years. In some ways it feels like a lot longer and in other ways, seems like yesterday. This just happens to be how things are. I keep learning each and every day. I keep navigating the grief. I also have realized that Ava’s life and loss is just a part of me and a part of our family. It isn’t really a separate thing.

I think of Ava and I smile…and I hope you do, too.

Thank you for reading and for being here,

Sherri

Ava’s Tribute ~ July 11, 2011

Ava’s Celebration of Life was July 11, 2011. I have never shared her “eulogy” that Randy and I did for her. We called it “Ava’s Tribute”. Today seemed fitting to share this tribute. Randy and I took turns reading this. Although I read it now and I have no clue how we ever got through reading this just 5 days after losing her…

I hope you get to know Ava a little more when you read this… 

XOXOXO

Sherri

 

Ava’s Tribute

July 11, 2011

Love, Mommy and Daddy

Ava’s story begins long before she was born. Her grandfather, Mike Melnychuk, passed away in 2004 of the same type of leukemia that Ava had. Her brave Daddy, Randy, was there with him when he passed away at home. Courage and bravery along with an experience of witnessing a treasured love one pass, prepared Randy for his future of being Ava’s loving father.

I had been a caregiver to a girl named Hope for 13 years. Hope had many intense medical needs and I learned how to care for her from her mother, Brenda, nurses, and respiratory therapists. Hope taught me so much about life and love, but most importantly, how to enjoy the little things in life & how to never take anything for granted. This, combined with being comfortable with the medical world, prepared me for being Ava’s loving mother.

Hope passed away just a few days before my due date. Ava Hope Melnychuk was born on September 6, 2006 at 1:03 AM in Edmonton, AB. We found it only fitting to name her after Hope.

Ava was a happy and content baby. I used to sing silly songs to her while cuddling with her and the dogs. Some of these songs included lyrics about being named Ava Hope Marie. And even a few weeks ago, Ava was still convinced her proper name was Ava Hope Marie. Ava enjoyed shopping with Mommy, going for long walks in her stroller, playing with her cousins, and spending time with the other babies in her and Sherri’s Mom’s group.

When Ava was 10 months old, we moved to Regina. I took a transfer with Scotiabank and Sherri got to stay home with Ava and began to build her Discovery Toys business. In June 2008, Ava became a big sister as our sweet little Alivia Grace was born. Since it was so important to have Ava’s second name as “Hope” ,we gave careful consideration to “Grace” for Alivia. Ava enjoyed swimming lessons, playing with her friends and new baby sister, as well as playing outside in the pool and the sprinklers.

On August 8, 2008, just one month before she turned two, Ava’s life and our family’s total way of life, changed forever. Ava was diagnosed with leukemia. The news was both devastating and shocking. We knew instantly the uphill battle Ava was facing. Soon after that first day, we were given Ava’s type of leukemia which was AML, in a rare form, with a far less cure rate. Her treatment course would be so intense that we were warned she would become very sick and would have to remain in the hospital. As parents of a 2 month old baby and 2 year old toddler, we knew we would never be able to leave Ava’s side and we also needed to provide a stable and loving environment for her and Alivia. Thus, Randy left his job at Scotiabank and we chose to split our time between Ava at the hospital and little Livi at home. Ava endured 5 intense rounds of chemotherapy, numerous blood and platelet transfusions and did become very sick. However, she showed her fighting spirit and determination to persevere as she went into remission after the first round of chemo. Ava was the perfect patient and very accepting of her new routine and unfamiliar surroundings. Randy and I felt it was our obligation to provide Ava with a fun, childlike environment in the hospital as we walked beside her and cared for her with all our love while her little body endured unspeakable intensity. It was during this time that Ava discovered beading, playdough, dressing and undressing dollies, potato heads, singing, dancing, and movies. Not to mention, it was Ava’s first interactions with medical supplies and equipment and I’m sure the hospital went into a bit of debt while Ava was practicing her nursing skills on her dollies! It was also a time where Ava began an everlasting friendship with her favourite nurse and guardian angel, Heather. It was also a time when Alivia’s guardian angels, Ann and Tara, came into our life.

Ava came home in February 2009 and we began a new routine of just enjoying living at home and not in a hospital!! Ava was 2 and a half and Alivia was 8 months old. In April, we travelled to Edmonton and Ava picked out her new puppy – Elmo. We spent our days playing and visiting friends and going on outings. Spring and summer came and went and Ava loved being outside in the park, playing in her little pool, and going to the beach. We began making plans for the Fall. Ava would go to preschool and start swimming lessons. Ava’s third birthday was a huge celebration as her second birthday was spent in the hospital. We were all very content with life!

Just 5 days after Ava’s third birthday, at a routine blood test on September 11, 2009, we were shocked to discover that the leukemia had returned. This blow was especially hard for Ava as she was just beginning to experience life as a child. She had gone to preschool one day and swimming lessons one day. She knew that there was life beyond the four walls of a hospital and she was not happy to be going back. However, Sherri and I pumped her up by telling her all the fun that we would have up there and all the things we would do and all her favourite nurses she could see. We were really trying to make the best of a bad situation. Ava turned to Sherri and I yet again to be her entertainers, comforters, and supporters. So once again, I walked away from work and we began the chemotherapy journey again. However, this time, we were also preparing to go to the Alberta Children’s Hospital so Ava could receive a stem cell transplant from an unrelated donor. The expected time frame for us to be in Calgary was 3-6 months, depending on the side effects and complications. So, after 4 rounds of intense chemo, numerous blood and platelet transfusions, Christmas in the hospital, and Sherri and I caring for a one year old and 3 year old, we were on our way to Calgary to save Ava’s life in January 2010. Guardian angel Tara came with us to be Alivia’s caregiver so Sherri and I could focus on Ava as she embarked on this new phase of her treatment.

Ava’s transplant journey is difficult to describe, but it was initially shared as a journey “to hell and back”. Ava also had the most intense chemo out there with the highest doses that brought her as near to death as possible. She also endured total body radiation as well as other intense drugs to destroy her entire immune system. Ava, yet again, showed us all just how strong and courageous she really was and although there was difficulty watching her go through all of this, she really kept that sparkle in her eye. Ava responded well early on to the transplant and things were going smoothly until April. In April 2010, Ava developed lung toxicity from the chemo and radiation. This diagnosis was discovered surgically by lung biopsy. Once again, we were in ICU with Ava and she was going through so much. It was heartbreaking to watch her as she was on a ventilator for a few days as well. Even in this very low time, Ava continued to shine and show her zest for life with her playfulness and sense of humour. She responded amazingly well to the drugs and after a couple of weeks, she was released from the hospital.

In May 2010, Ava went through all the testing under the sun to see if she indeed had beat the leukemia and to see if the transplant was a success. All indicators pointed to success and we were told we could go home! Ava had her central lines removed on June 1, 2010 and we were ready to go home and put all the sickness behind us once and for all!

Since we were in Calgary for 5 months and Ava was extremely limited in what she could do and where she could go, she discovered new ways of entertaining herself. At this time, Ava discovered My little ponies, baby stella, finger painting, build a bear, easy bake oven, Disney princess movies, and nacho parties. It was also in Calgary that Ava met her beloved hippos at the Calgary Zoo. Ava announced to us early on, before we even went to the zoo, that the hippo was her favourite animal. We never knew why Ava loved hippos so much but we were always on a quest to always find hippo things ever since.

June 2010 brought us unspeakable joy as we came back home to Regina on Alivia’s second birthday. Ava was so glad to be home and so excited to be reunited with her puppies Maggie and Elmo! She was just giddy to be back in her space and surrounded by everything that made her happy. And the rest of us agreed. At this point, unbeknownst to us, began the best year of Ava’s life – the year she was able to experience being a child!

We enjoyed summer time and Ava loved to be outside playing with her new sand and water table, splashing in the pool, running in the sprinker, playing with Maggie & Elmo, going to the park, sliding down the slide, swinging on the swings, playing with bubbles and sidewalk chalk. Ava and Alivia were also becoming good friends as they were able to interact more than ever before.

As summer turned to Fall, Ava became very excited to start activities. She celebrated her 4^thbirthday with her hippos at the Calgary Zoo. Before we knew it, she was in swimming lessons, dancing, Salsa Tots, and preschool. Ava thoroughly enjoyed all of these activities. It was her time to shine and to finally enjoy all that a four year old was meant to enjoy. Ava and Alivia also spent Mondays with Gramma and Papa and Mondays were days Ava looked forward to. During this time, Ava met many new friends and continued to be happy and joyful each and every day. Life was normal and life was good. Halloween, seeing Santa at the mall, Christmas at home, parties at school, seeing Max and Ruby Live, going to Globe Theatre, and playing at Dinobouncers were all activities that Ava absolutely loved.

Ava also saw her first movie in the theatre – Tangled – Disney’s version of the Rapunzel story. Ava really fell in love with everything Rapunzel as this particular movie was a mirror image of her life. Ava also took joy in the little things in life. No matter what she was doing, she would make up songs and dance around. She even loved the car wash and squealed with delight at the rainbow coloured soap! In March 2011, Ava’s wish came true when she met Rapunzel in Disneyworld. It was so special for her to get to go! This trip was especially meaningful for our family as it meant a milestone for Ava’s health as she was well enough to travel. Ava enjoyed everything about this trip – the plane rides, the resort, the theme parks, the pools, the characters – it didn’t matter what we were doing, you could just see the happiness radiating from her. At Disneyworld, we also discovered something we never knew about Ava – she is a dare-devil!  Ava had never been on rides before and the wetter and faster – the better. So, of course, her favorite rides were Splash Mountain and the River Raft. We did Splash Mountain 4 times and we have never heard her giggle like that before! Ava also met all her favourite Disney princesses and characters, made a wish upon her own wishing star, had her nails and make up done at the salon, and had Christmas in March with real snow! It was truly a wonderful experience for Ava and for the rest of us. Ava also enjoyed this special adventure not only with her family, but with her cousins, Lauren and Tanner, Tara, Auntie Linda, and Auntie Bonnie. It was a trip to remember and we are so grateful to the Children’s Wish Foundation for making Ava’s dream come true. For all she had endured in the past, Ava deserved the special royal treatment she received.

As the grass started to turn green and spring was beginning, Ava began to go on outings with her me to the greenhouse. I am not sure who enjoyed these trips more – Ava or myself! But it seemed that a few times a week we would need things from the greenhouse – much to Mommy’s chagrin. Ava loved to garden. She spent a lot of time with me – calling me Old Man – and the two of us shared many special moments planting flowers. Ava even transplanted weeds and sang to them so that they would grow because they were her special flowers.

As all of Ava’s activities were coming to an end and we were planning for summer, we received the shocking news that would forever change our lives yet again. At a routine clinic visit on June 7, it was discovered that the leukemia had returned again, this time with a vengeance. We were completely blindsided by this news, as were the doctors, as Ava had been doing so well and was 16 months post-transplant. Upon processing this news, Sherri and I knew the inevitable future, Ava was not ever going to be able to overcome the disease. She had fought with all her might twice and the doctors had done all that they could do to save her. All we had ever wanted for Ava was for her to be able to live like a normal child and the miracle was not for her to be cured, but the miracle was for her to get to live one year as a normal child. And we are so grateful for that year. We have no regrets as we provided Ava with all we could and made sure each day was special. Ava lived each day to the fullest and we lived and cherished each day right along with her. Ava was given one week to three weeks to live and we wanted her to live her last days at home. It was so important for us to provide her with the comfort of her home, her toys, her puppies, her loved ones, her couch, her bed, all that Ava loved and felt comforted by. I stopped working and we spent all our time making Ava happy and comfortable.

We threw away all rules and routines and just let her guide her own days. Ava had time with Gramma and Papa, Grandma Shirley, Auntie Linda and Uncle Scott, Auntie Bonnie and Uncle Aldo, Tanner and Lauren, Heather, Tara, Ann, Sarah, Jerven, Joshie and Ru, Erin, Brenda, Elijah, Ilyana and Ashly.  She definitely had ups and downs, but wanted to get outside for walks, play in the flowers, go for a walk in the rain, bake cookies with Mommy, make playdough, paint, do crafts, shop at Toys R Us, cuddle with Mommy and Daddy and play with Alivia. Ava also gifted us and sang with her preschool class a few days before her preschool graduation. This moment was ultra-special and Ava was so proud of her accomplishment. One amazing thing that we noticed was that her dog, Elmo, never left her side during Ava’s last month. He was her dog and he was beside her whether she was playing, cuddling with Mommy, or sleeping. Elmo was Ava’s comfort and protector and took his job very seriously. During the last 10 days, we saw Ava become more tired and more weary. The disease was taking its toll on her and she was beginning to pull away from the things she loved. The last few days, she slept a lot and tried her best to sit up and colour a bit from time to time. We noticed that even when she felt her absolute worst, she tried so hard to enjoy life. Ava hung on longer than expected – a month – and even in the last moments showed her fighting spirit and desire to live. Ava’s last hours were peaceful for her. They were spent with her Mommy and Daddy taking turns holding her and her final breaths were taken with her Daddy holding her hand and speaking so lovingly to her as she was lying in Mommy’s arms. Ava passed away on July 6^that 1:15 am. Ava was at peace and looked so angelic and did not suffer in the last moments of her short little life. She was surrounded with the greatest love of Mommy and Daddy, her Auntie Linda, her favourite nurse and one of her best friends, Heather, and her precious puppies, Elmo and Maggie. And the greatest gift of all – she passed away at home on her terms.

We know that Ava’s story has impacted people around the world and her life has touched so many that never even knew her. However, God brought many many angels into our family’s life that we would like to thank. Ava’s team of doctors – Dr. Afzal – who Ava nicknamed “Dr. Dora”, Dr. Lewis in Calgary who tried so hard to cure her, and Dr. Haq – who was so kind and loving to Ava and just wonderful to Sherri and I.  Thank you to the numerous nurses and doctors from Pasqua Peds, Alberta Childrens Hospital, Regina General ICU, and the Allan Blair Cancer Clinic. Special nurses to us and to Ava were Heather, Natasha, and Moira, who not only provided Ava with extra loving care, but also supported Sherri and I immensely, especially this past month. We cannot ever fully express our gratitude for all you did to keep Ava happy and comfortable and we know she impacted your lives as well. To Tara and Ann, words cannot express the gratitude we have for you. You stepped into our lives when we needed you the most and provided Alivia with love and stability when we needed to focus on Ava. Tara, we thank you from the bottom of our hearts for giving up your life for 5 months to be with us in Calgary. Ava loved you and is very grateful you took “Trouble” away when it was too much for her! To all the generous people out there – especially those who gave financially to our family through various fundraisers in Regina and Edmonton, thank you. Thank you so much for realizing that finances should never be a worry for families who are going through the intensity of having a young child treated for cancer. It is because of the generosity of complete strangers that I was able to spend precious time with both of my daughters. Again, words can never describe the gift of time you all provided to our family.

To all the angels who rushed to help us this past month to get keepsakes and mementos of Ava all in order, we are very thankful as you provided us with gifts that captured Ava’s essence and we have the most beautiful keepsakes that we will treasure forever. Thank you to Terri Schous for the gorgeous pictures and dvd show, Tara Duckworth for the silver imprinted necklaces, Becky Ell, for the castings of Ava’s hand and foot and Mary, from the Art Gallery for the pictures and framing. Thank you to all who helped with today’s service – Jerven, Jacob, Erin, Shirley Martin, Debbie Flood, Bonnie, Linda and Tara. Thank you to everyone from Rosewood Church and elsewhere for helping with the service and reception. Thank you to Norma for all your hard work and loving touch to all details. Thank you to all our dear family and friends for embracing us with your love and prayers this past month. Thank you to Ken and Norma for helping our family early Wednesday morning by soothing the most heartbreaking moment of our lives as you, our dear neighbours, so tenderly took Ava from our arms for the last time. It was so special. And to any other angels out there that we have forgotten to thank, we also thank you.

And to the most important young lady who anonymously gave Ava the gift of a healthy childhood for 16 months – Ava’s stem cell donor. It is because you took a step to put yourself on OneMatch that our little girl was able to experience a wonderful year. You are a stranger and a savior to us. So, wherever you are in the world, we thank you most of all! We hope that all of you will spread the word and get more people to become blood donors and to join the bone marrow registry.

Thank you, God, for choosing us to be Ava’s parents. We are so blessed to have been given the privilege of caring for her for almost 5 years. Ava is the best thing that ever happened to us and we will continue to live on in her spirit each day and teach everyone, especially her little sister Alivia, all about how to live life. Ava, you taught us compassion for others, determination, courage, strength, acceptance of situations – good or bad -, humour, carefreeness, kindness, faith of a child and unconditional love.

We will miss you forever!

 

If before you were born,

We could have gone to Heaven and saw all the beautiful souls,

We still would have chosen you…

 

If God had told us, “this soul will one day need extra care,”

We still would have chosen you…

 

If He had told us, “this soul would make us question the depth of our faith,”

We still would have chosen you…

 

If He had told us, “the soul will make tears flow from our eyes that would overflow a river,”

We still would have chosen you…

 

If He had told us, “our time spent together here on earth could be short,”

We still would have chosen you…

 

If He had told us, “this soul may one day make you witness unbearable suffering,”

We still would have chosen you…

 

If He had told us, “all that you know to be normal would drastically change,”

We still would have chosen you…

 

Of course, even though we have chosen you, we know it was God who chose us for you.

Thank you, God, for letting us be Ava Hope’s parents.

 

It’s Just a Car…Or Is It?

It’s JUST A CAR, Sherri…That’s what I keep telling myself…it’s just a car.

During a morning recess in Grade Four, I fell and skinned my knee. It was September and a warm day. I was wearing a new pair of back to school pants that my mom and I had picked out – mint green with fine stripes. I loved those pants. It was the first day I had worn them and probably my last. I remember falling and looking at my knee and then crying. My friends took me to the teacher who sent us in to get cleaned up. I basically had a skinned knee, but that wasn’t why I was crying. I was crying because my brand new mint green pants that I loved were ruined – on day one. I was devastated about my pants. We went into the classroom and my grade four teacher hugged me and said “They’re just pants. We care more about you and that you’re ok.” Why is this such a vivid memory for me? I know exactly why – someone tried to reason with me and explain that pants are replaceable, but I am not. So if pants get ripped, that’s better than something more serious happening to me. Then why does it still bother me so much about those pants?! Because to nine year old me, they weren’t “just pants”. I held an attachment because they were new and I liked them and I wanted to wear them more than just one time. But what bothers me about that day is that someone was trying to tell me how to feel. We should never do that. We should be allowed to feel how we feel and work through it rather than being told how to feel – reasonable or not, feelings are feelings and we should feel any feelings that come our way. Feelings aren’t rational – they are there and meant to be felt. That’s it.

Fast forward to today and I have to say goodbye to a possession that I hold near and dear to my heart. To something I honestly hoped to drive into the ground and have forever as long as it got me from point A to point B. Then, realistically, I hoped to keep it until September 2020 and then assess where things were at – that was my plan. 10 years. I wanted it for 10 full years. My vehicle. Why? Why do I have such an attachment to an inanimate object? It’s just a car – right?! Isn’t it just a car?

It doesn’t feel like it’s a just a car. Because to me…

My car is happy memory of when we were in Calgary for Ava’s transplant. We were at the end of her journey there and her health was 100% cleared. We were preparing to go home…soon…to put the entire cancer journey behind us. I had a van that I hated and I was absolutely tickled to trade it in and be behind the wheel of a Mazda once again. Ava was also absolutely tickled at the new vehicle. That girl loved everything about life and so for her, getting a new car, with her own DVD player in the headrest, was the best thing ever! Alivia, who was almost two years, was not so thrilled with adjusting to the new car. While Ava loved it, Alivia screamed bloody murder every time we put her in it. Oh, my little Livi and change – not so adaptable. My girls were so different.

May 21, 2010 ~ Sunridge Mazda, Calgary, AB ~ 2010 CX-9

My new car was like celebrating the end of the horrific cancer journey with Ava and the beginning of our new journey, cancer free.

My car is no longer serving me and my family. It is time to give it up as a new vehicle makes the most sense to keeping me and my family safe. That’s the rational thinking. Totally makes sense and I get it. I began preparing for this about a year ago, with high hopes that it would take me further than it did. But in early 2019, I knew that I had to trade it in and get something new. And I knew it had to be as soon as possible.

But, you see, to me, it’s not just a car…

It’s where Ava sat for the last few weeks in Calgary as we drove back and forth from the hospital. We also got to go to Banff and Lake Louise for a day trip. Trips to the zoo and shopping we did, too.

It’s where Ava sat and ate snacks and watched her show when we drove home from Calgary to Regina on June 9, 2010 after being away from home for 5 months.

It’s where Papa opened Ava’s door and took her out when we pulled up to our house after being away for 5 months for her transplant. Ava greeted him with a “Papa, I missed you.”

It’s where Ava sat when I drove her twice a week to preschool for almost an entire cancer free year.

It’s where Ava cried because I couldn’t get her to her one and only Halloween party at preschool because the roads were too bad.

It’s where Ava sat and watched her new show, Robin Hood, while her and Daddy drove to Calgary for her one and only post transplant check up in January 2011.

It’s where Ava sat eating popcorn twists and sang to all her shows while I drove.

It’s where Ava sat while I drove her to her monthly check ups at the cancer clinic.

It is where Ava sat when we drove home June 7, 2011 thinking she had a perfect check up, absolutely oblivious to the fact that her little body was full of those deadly cancer cells.

It is where Ava sat and watched her shows while I cried driving back to the cancer clinic to discuss her end of life options for care.

It is where Ava sat each day she told me what was on her bucket list for that day and we took her.

It is where Ava sat while we took her to the clinic every few days for platelet transfusions to keep her from bleeding out.

It is where Randy dove into the back to help Ava while I was driving as she started screaming hysterically and we didn’t know what had happened.

It is where Randy held Ava as she was near death on that last day she ever rode in the car to the cancer clinic for the last time she would receive platelets on July 5, 2011.

It is the car I drove on the way to the funeral home to make arrangements at 9 AM on July 7, 2011 crying all the way because when I looked in the rearview mirror Ava wasn’t there.

It is the car Alivia sat in on July 7, 2011 and looked at Ava’s spot and said in her innocent 3 year old voice: “Where’s Aya?”

It is the car I drove to the funeral home for her viewing.

It is the car I drove to the funeral home for her cremation.

It is the car I drive and cry in off and on for the past 7.5 years.

It is the car I park in front of the mausoleum when I go to visit Ava.

It is the car Ava sat in. It is forever Ava’s spot. It is forever Ava’s car.

I am devastated to say goodbye to this car.

But I have to say goodbye to this car.

You see, in the loss of your child, rational thinking and knowing what’s best doesn’t really matter. Life after this loss is a series of saying goodbye to things and letting things go slowly, one at a time. It is like I have to say goodbye to Ava little by little as things in life change. And saying goodbye to Ava over and over again, is heartbreaking. It’s really, really hard. And I just wish I could freeze time and hold onto everything that had anything to do with Ava. But life isn’t like that. Life moves forward. But with each passing day and with each letting go of something, life actually takes me further away from her.

The day has come for me to let go of my car, and this is a big one. I am sad, because to me, it is not just a car. Of course, I hold those memories of Ava and the car, near and dear to my heart – the good, the bad, the ugly, but I have to say goodbye to something I associate so deeply to Ava. Yes, I am emotionally attached to my car. I thought I’d drive it forever…but it’s not meant to be.

May 2019…my girls are so excited for the new car. I have decided to not get black again and go for white. Time to focus on the light in my life and white is the best colour to do that. Randy gave my car a good cleaning inside and I cleaned the outside. Took a few last pictures. Sat in Ava’s spot and thought of her and all the times she rode in that car.

 

Saying goodbye to the car…

New adventures await in this new car…probably just as many trips to Calgary, Banff, Edmonton, and Saskatoon. Summer trips to the pool, beach, and Milky Way. It will allow me to continue being a chauffeur for cheer practices and competitions. It will get me to work. It will allow me to run the many of thousands of errands. It will house all my business display for WP Creations. It will take me out to visit Ava at the mausoleum. This car will serve me and help me get from Point A to Point B.

The new car! A white CX-5! 

The girls love the new car…

And it’ll be OK that Ava never sat in the backseat eating popcorn twists singing her little heart out while I drove, I’ll just keep telling myself that…

Because…it’s JUST A CAR, Sherri…it’s just a car.

 

Thanks for reading and for being here on my journey of life after the loss of Ava.

XOXOXO

Sherri 

 

 

Childhood Cancer Awareness Month ~ September 2018

Childhood Cancer Flag at the Saskatchewan Legislature  Oh I have so many drafts and so little published this year! No excuse – just haven’t taken the time lately to write my thoughts or to at least complete my thoughts. But …

Christmas 2017

Christmas Eve ~ 2017 

Randy, Alivia, Anaya, and Sherri. Always one missing – always Ava in our hearts. ❤ 

If I told you this was our 7th Christmas without Ava would you believe me? Seriously, doesn’t that just seem unimaginable? 7! 2011 was the first and by far the worst. 2012 was an escape to Mexico. 2013 I was pregnant. 2014 Anaya was a baby. 2015 Anaya was wild. 2016 we were supposed to escape to Mexico but Anaya broke her arm…that brings us to 2017! Since we went to Mexico in May, we were not going away at Christmas. So, home we stayed.

But back to my point there, Christmas is a big deal and Christmas is all about Ava and Christmas, well, just reminds me most of her and how she isn’t here. As usual, we continue to celebrate and we somehow manage to carry on. Always with stories and thoughts of Ava surrounding our day.

We had everyone over Christmas Eve. I cooked the turkey and all the trimmings. The girls opened some presents and it was a fun night. I forgot to take pictures, but Alivia got a Hatchimals Surprise from Grandma and Papa, a 306 Elite Backpack from Auntie Linda and Scott, and a 306 Elite sweatshirt and fingerling from Auntie Bonnie, Uncle Aldo, Tanner, and Lauren. Anaya got a glitter Hatcnhimal from Grandma and Papa, an adorable outfit from Auntie Linda and Uncle Scott, and a 306 Elite sweatshirt and fingerling from Auntie Bonnie, Uncle Aldo, Tanner, and Lauren.

Grandma and Elmo.

Anaya and Papa. 

After everyone left, we put out cookies for Santa and it was off to bed!

The girls were excited Christmas morning! Anaya started out rough – screamed that she didn’t want her stocking! LOL! She wanted to open the presents instead. I think she was pretty pleased with her Elsa dress, Moana stuffies, and Peppa Pig Toys. Alivia loved her LOL Surprise, LEGO, Beados, and Hatchimals Nursery. Santa brought them a Karaoke Machine which was a big hit!

After opening presents, having breakfast, and playing with the new stuff, we got dressed and ate lunch and headed out to say Merry Christmas to Ava. That is always an emotional trip. Auntie Bonnie met us at the Mausoleum.

It was a different Christmas for us as we went to Linda and Scott’s for supper. Typically, we enjoy the day at home and have a nacho party for Ava for Christmas supper since that was her favourite. Well, we brought the nacho party to Auntie Linda’s and kept up the tradition Ava started 8 years ago!

Hanging out at Auntie Linda’s and Uncle Scott’s 

Christmas Nacho Party for Ava. 

Tanner, Anaya and Papa.   Linda, Alivia and Gracie. 

Auntie Bonnie and Elsa 

Cousins! Alivia, Anaya, and Lauren 

My sisters! 

The girls! 

Photobombed again! 

It was a good night. And another Christmas without Ava in the books. 😦

We did enjoy Christmas the best we could and I think you can tell that everyone was in good spirits!

Here are some final pictures of the girls with their Christmas 2017 haul….

Thank you for reading about our Christmas!

XOXOXO

Sherri

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Hello 2018

Happy New Year, Ava! 

It seems as though I have been on a somewhat of a hiatus! My last post was in July! Oh my! I will start here – January 1, 2018 and then back track to the summer to fill you in on our busy life!

I do enjoy sharing our Christmas and New Year’s. Mostly, because I want to keep sharing our life at one of the most difficult times of year. We miss Ava so much at this time of year and it always seems like one of the most bittersweet of times – enjoying Christmas with Alivia and Anaya but yet always feeling as though life is just not right as Ava should be here, too.

I also find it hard, as usual, to say goodbye to another year. Again, I want to stay in that year, for it was one year closer to Ava. Every time the calendar moves to another year, it becomes another year further from Ava. Man oh man, the rocky roller coaster ride of the child loss world.

We continued the tradition of heading to The Keg for supper New Year’s Eve. It was a great meal, as always. We managed to get home for some play time for the kids before they headed to bed. They didn’t stay up until midnight, but Randy and I made it until 12:01! Lol.

Being silly! Anaya loves to trace hands! 

 

Enjoying our night! 

I wanted a picture of myself but my photo-bomber figured she was just too cute to not be in it! That’s OK with me! 🙂 

Here’s little ol’ me! 😉 

LEGO and Paint and PJ day! 

New Year’s Day was filled with cleaning house, movie time (Randy has introduced Alivia to all the Star Wars movies), painting time, and LEGO building time. It was a laid back and fun day. We ended the day with another one of Ava’s favourite meals: roast beef, peas, and potatoes.

Thank you for sharing in our little life as we continue to navigate our life without Ava. We wish you all the best in 2018!

XOXOXO

Sherri, Randy, Alivia, Anaya, and Angel Ava

 

 

Celebrating Ava and Missing Ava – 6 Years Later

Ava’s Last Halloween – 4 years old – October 2010

Words can never describe how it feels to live without Ava for 6 years. It is hard to wrap around her being gone at all, but 6 years? That seems like an eternity – too long. 😦 In other ways, not long at all. But no matter what, we always take the time to remember her. Each year on the day she passed away, we plan an Ava day. Here are the highlights of our Ava day – Thursday, July 6, 2017.

We took our trip out to the Memorial Gardens to spend some quiet time at Ava’s special resting place. This is always emotional for all of us. We take our time and talk to Ava and mostly tell her how much we miss her and wish she was with us.

We tossed different ideas around of which Ava activity we would do. We settled on swimming since swimming was one of Ava’s favourite things to do. After lunch, we headed to Massey Pool to enjoy the sunshine and the pool. The girls loved it!

 

Ava’s Fairy Garden was next! We love shopping around each Spring for Ava’s fairy garden. We picked some neat things to add this year:

Then we figured out where everything should go!

Apparently Elmo needed to get in on the action! 

Here is the finished product!

For supper, we kept the tradition of Ava’s favourite meal – nacho party! For dessert, we decided to get some of Ava’s favourite donuts – Boston Cream (the whipped cream filled kind!).

 

We ended our day watching Ava’s tribute and other special videos of the last month of her life. This is when our family really felt the immense pain and loss of losing Ava. To watch those last few weeks with her, when she was in the hospital, on her Disney trip, and as a baby just makes the reality of what we live without that much more intense. We miss her so much and wish she was back with us. And you know what? Ava should be with us. She should be here with us and she didn’t deserve to die. There could and should have been more research into childhood cancer so that she didn’t have to die from this horrible disease.

And that’s when we wish there was more done to eliminate childhood cancer….

We will never stop advocating for many issues we encountered with Ava. Currently, we have been quite sad by all the kids still dying from childhood cancer. It is a terrible disease, but there is so much they could do if there was more funding for research for children in particular. Honestly, for a disease that is the number one disease killer in Canada in children, it is unacceptable to have less than 4% funding in research. We will continue to share statistics and advocacy for more childhood cancer awareness and research. There is nothing worse that the death of a child. Nothing. How many kids have to die?

I will continue to share statistics on childhood cancer and offer ways that you can speak up for Ava. I will share more concrete ways that you can help other children be cured from childhood cancer. I know many people don’t know how to help and where to go and I will be sure to share that information with you as there is so many ways to help now more than ever!

Ava continues to be our light and will show us the way. I believe she guided us to find this house for her fairy garden.

The fairy house we bought is solar powered. Here is how it looked all lit up at night:

Maybe Little Fairy Ava is enjoying some time in there….

I’d like to think that….

Our Ava day was pretty good, considering. Only thing missing, was Ava.

Thanks for reading about our family and our life without Ava.

XOXOXO

Sherri

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Cocoon – What 6 Years of Living Without My Child Have Taught Me

July 6, 2017 will be exactly six years that I lost Ava.

Six years since I heard her voice.

Six years since I cuddled her in my arms.

Six years since I held her hand.

Six years since I sang and danced with her.

Six years since the world felt right.

In some ways, six years is a long time. But in other ways, it is also not very long at all – just six years. Young. Sometimes the grief is so fresh. Sometimes well scabbed over. Sometimes robotic. Sometimes new and sometimes old. But grief is present all the time. At this point, six years have been a time of learning to weave the grief into every aspect of my life and also learning to keep Ava’s memory alive all the time. It’s juggling happy /sad and love/hate and empathy/apathy and compassion/indifference. It’s a balance that doesn’t exist. It is keeping my head above water. I do OK most days, but that has been with a lot of hard work and a lot of conscious effort and a lot of letting go of what I cannot control ~ pretty much what I really never had control of in the first place.

6 months to two years were the most difficult for me. Here’s why:

Having other children is a big big distraction. Huge. Parenting was required. Firstly for Alivia when Ava passed away and then for Anaya. I didn’t have a choice, they needed to be cared for. I also think the distractions lessoned the blow of Ava’s passing. I didn’t have time to be in full blown grief, even if I wanted to. Who would step in to take care of them?

I was also relieved, as awful as that sounds. I was relieved that I never had to live another day and night in the hospital. I was relieved that I never had to wait on pins and needles for bloodwork results. I was relieved that I never had to worry about bruises and red eyes. I was relieved that I never had to go through any more hospital tests and visits. I was relieved that I never had to be on the receiving end of that dreaded, life changing phone call. I was relieved that I never had to worry anymore about the cancer coming back and taking my Ava. When Ava died, all those things died, too. But, I was mostly relieved for Ava. I was relieved that she could leave a world that couldn’t save her. I was relieved that she never had to endure another surgery, another procedure, another dose of poison (aka chemo), another transplant, another blood transfusion, another pause to her childhood. I was relieved that she would never die a yucky death fighting for her life in a hospital ICU. I kept thinking there must be something better for this beautiful, innocent child. She never asked for this. She didn’t deserve this and she was so much better than this. Ava had a light that shone brightly and everyone that ever met her knew it right away. They knew she was different. They knew she was special. Ava changed people’s lives. Surely there has to be something better in the universe than this for my Ava? Ava was finally free from the cancer. Ava could finally be a kid somewhere else out there without me…but free and joyful and playing and healthy.

From the time she passed until 6 months, I mostly felt that stunned relief.

For the most part, I can honestly say out loud that I am doing OK. I can answer the “How are you?” more truthfully than before. Basically six years out, I don’t have the same notion to punch the cashier at the store in the face for simply asking me: “How are you today? Did you find everything you need?” Whereas once upon a time I would have not only wanted to punch her in the face, but I also would have wanted to scream at the top of my lungs: “How am I doing? Seriously, how am I doing today? I am surviving, lady. That’s the top of my to do list for today, yesterday, and tomorrow. Surviving. My child died in my arms. She is never coming back. She fought so hard and went through hell only to lose her life to cancer. A severely underfunded childhood disease. That’s how I am doing today. And how are you?” Tsk tsk, not an acceptable response. So, I kept the keeping it real to myself. But today, respondng with “Fine. Things are going well.” is the truth. For the most part, our lives have continued and we’re all doing OK, considering dealing with the magnitude of a loss with great impact such as losing a child. (NOTE: This is a hard thing to write because, again, I don’t want people to mistake this for somehow thinking that “time heals all wounds” or that I have “gotten over it”. I am cautious because I don’t want my “we’re doing ok, despite things” to get misinterpreted.)

I am mostly fascinated with what the body does to protect me against the severe grief. I am somewhat protected with a shield or cocoon around my heart. Whether this is practice from being with my grief for this long or another element, I am not sure. But there is a coping mechanism at play here that I have either developed or it just comes naturally with time. Here is how it works (for me): When I allow myself to remember and deeply feel the night, the moment Ava died. The exact circumstances. Who was here. Where we were sitting how I was holding her, what I was saying, her last breath…I spiral down, I remember, and it is almost like was that a dream, no horrific nightmare, or did that really, actually happen? And I am there again – fresh in that moment. hard to be there, but easier to get out. Thinking of this happened all the time in the beginning, over and over and over again. Then, not so much. Did I block it out? Was I healing? Why wasn’t it as severe a memory as before?

Our lives when Ava was sick were very public. Everyone knew our business. I loathed going anywhere for I feared running into someone and actually having to talk to them. All of sudden my stressful life or death kind of life wasn’t something I wanted to talk about. I remember seeing someone and trying to avoid them at Costco. When we eventually were face to face and they started asking me questions, I had to stop her and tell her I couldn’t talk. Fast forward to when Ava passed away and running into people. Can I tell you just how awkward and awful it was to run into someone who didn’t know Ava passed away and she asks me how my little one is doing? Yeah, I am sure you can guess how that conversation went over.

I felt that my life was an open book and I longed for privacy. I didn’t want everyone to know my business and it was very hard for me. I also hate being the centre of attention and hate being put on the spot and having people look at me. However, I do enjoy public speaking! Weird, hey?! That is, if I can be prepared and in control of what I am saying and sharing.  When Ava was sick, it was really difficult to deal with the overexposure of our lives. I had a friend set up a Facebook page called “Prayers for Ava”. I wanted it up in case we ever needed to go for a transplant. I never posted on it. Back in 2008-2010, Facebook wasn’t as popular as it is now. I kept a group of people updated on Ava’s progress through email. The first thing I did after Ava passed away was delete that Facebook page. It was freeing for me to be in control of my privacy again.

I again get that knock me to the knees feeling when I stop, sit quietly with my grief and think about Ava and how she was here and how she is not here and how she is never ever coming back. I think of how I really lost my four year old daughter to cancer and how I really had to wake up the next day and live without her and the day after that and the day after that and the day after that and today and every other tomorrow forever! That again, will take me down down down….as it should. Those deep raw and fresh feelings were, at one point, all consuming, all the time. No control of them taking over and at time, no warning whatsoever. But over time, it is like my heart forms a cocoon, and those really awful, horrific, and terrifying moments and memories are somewhat protected by the cocoon. I can unwrap that cocoon any time I want and at times, still, with no warning, but as time goes on, I can control it better as I have become stronger and I am also becoming the “expert” in my grief. Phew, that was heavy, right?!

Truth be told, I don’t think I recognized this until I was around someone who is new to the bereaved parent world. I read their words or sit beside them and I hear the raw pain that is fresh from loss. I hear the bitterness, anger, and the “why” relentlessly – like they are obsessed. That is when I realize how far I have come,six years out. I still hold onto those same thoughts, they never change. I still want what can never be, for Ava to come home. And I still live with the pain. It is all the same, but it changes. It shifts, and eventually, it cocoons. But it is still there and that is the most difficult part for the non-bereaved parents to truly understand is that the fiery knock you to your knees grief may not present itself as it once did, but it is still there, still as fiery as ever, but hidden, and ready to burst open again at any given moment.

I have learned that there isn’t any answer or justification to when your child dies. I have learned that no plan, no big picture, no “too beautiful for earth”, none of it means that it was OK for a child to die. Losing Ava didn’t have to happen so that “so and so” would happen. Uh-uh, nope. What I have learned is that over time, I can create something with my brokenness. I can create something beautiful through embracing something so painful. I can take it and I can create something.

I also believe that when I gained my privacy back after Ava passed away, it helped to create that cocoon that I so longed for. I did attend a group for bereaved parents, but preferred one on one counselling. I also don’t get together with any other parents who have lost a child. The group scene is not for me. That is the introvert in me. I seek information and read a lot. I also let my feelings out by writing. I enjoy the control I have by sharing what I want on my own terms. Again, protecting myself as much as possible from being hurt.

COCOONS and BUTTERFLIES

My grieving  heart is in the cocoon stage that will most likely last a lifetime. My cocoon has been built to protect my heart from all the “things” that used to hurt so badly the first few years out. Although this cocoon is one that my heart can escape back to when it needs protection. Like my happy/sad life, my cocoon/butterfly coexist and interchange when I need them to.  But perhaps my grieving heart, my cocooned heart is also my creation. It is what I can create and share from my experience. My writing, my book, my creations are just like a cocoon-  in the creation stage and soon will release into a beautiful butterfly for all the world to see.

In six years I have learned many important lessons about child loss. These five most come to mind today:

1. There isn’t a reason – it is just one of those horrible things that life deals us. Please don’t ever tell someone that it is OK (in one form or another) for their child to die. There is no justification for something so horrible. Just be there. Just listen.
2. I am still Ava’s mom and I can still parent her from afar. As far out as this idea may sound, it is true and if we believe our children are still with us, then parenting them becomes very important.
3. Grief is forever. Just like Ava being gone is forever. Yes, I know she is always with me, in my heart, and in spirit. But let’s be real people, she is not physically here and that is very different. You go on and hug your kid right now and tell me Ava is here in sprit and see how insensitive that sounds. Let me be sad and angry and whatever I need to be at the fact that she is really not here the same way your healthy child is here with you.
4. Grief forms a cocoon over time. This cocoon is controlled by a stronger sense of healing. It takes a lot of hard grief work to get here. It also takes a lot of choosing to be here. It takes a long time of talking and processing. For me, it was a lot of talking, counselling, reading, and writing. It takes time.
5. Grief for your child and love for your child is the same thing. When you know someone who is hurting for their child and think they should move on or things should be better by now…Remember, the tears and the hurt and the longing are because of that unconditional love between parent and child. That soul connection that can never be severed. It is love. Grief is love. Never ever rush them. If you would never tell someone to stop loving his/her child, as such, you should never tell them to stop grieving for his/her child.

I also watch Ava’s videos way less. Hearing her sweet little voice and seeing her joyfully running around singing, dancing and playing, is too much. I feel like I might just die. Again, it sends me down quite quickly. This is something else that fascinates me – I watched them all the time in the beginning. They brought me so much comfort. Now, they bring me more sadness and more in touch with the fact that yes, Ava is gone and never coming back. Sometimes I just don’t want to go down. But I always have those videos and pictures, thank goodness, and can access them at any time.

It is amazing what perspective one can gain after great loss. I am still learning everyday.

I have been given many wonderful gifts just from being Ava Hope’s Mom!

I miss you so much, Ava.

XOXOXO

Sherri 

 

 

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Mother’s Day 2017

 

Obviously, I couldn’t go without sharing some kind of post for Mother’s Day. Do you really feel like hearing it all again? Do I really feel like sharing it all again? Could it be that I should share once again for the simple fact to ask you to share with me in my pain, albeit ever so brief? Do I dare ask you to remember how lucky you are if you hold all your children in your arms? Do I dare but ask you to remember me and Ava and all those other mommies and children not together this Mother’s Day as death truly keeps them apart until their souls yet meet again? Do I dare?

The answer is yes. I do dare to…I should share. I should write. And I should ask that you be with me again, as I share where I am at with my grief journey.

I ask you to see me. That may sound simple and that may sound obvious as of course, you think of me and wonder how hard Mother’s Day must be for me. Many of you reading this are my friends so I know you do.

I also know that some of you reading this are like me, grieving the loss of your child and so are disconnected in many ways from the joy and festivities and gratitude that is Mother’s Day. I also know there are some of you reading this who are single moms and so, there is no break to the busyness of this day. Mother’s Day, like it is for me, is just like every other day, just a bit more in your face than most days. Then there are those who have lost their mother and perhaps are reminded of that on Mother’s Day. You may know have all your children in your arms this day, but miss the arms of your own mother. So, let’s just get through this together, shall we, and pause for a moment to be thankful for all we have to be grateful for.

I am grateful for Ava and would not trade one single day – before or after her passing! Ava made me a mother and taught me more about life and love in her short 4 years and 10 months with me. I am constantly reminded of how amazing and special she is as I am still learning and understanding all I learned when she was here with me. Ava will always be my hero and I will honour her life and memory forever. I miss her deeply. Somedays I wonder how I can miss her more than ever before?

I am grateful for Alivia. She was my little saving Grace 😉 when Ava passed away and the one who kept me going when I didn’t want to. She forced me to actually meet and interact with new moms in order for her to experience new things; which was necessary for her. Alivia challenges me in ways that help me see life in a different way. She also has been right with me since Day 1 when Ava was diagnosed to when Ava passed and each day since then. Oh, Alivia – sweet Livi Divi!

I am grateful for Anaya. Anaya brought such joy to all of us 3 years ago when she came into our lives. We have enjoyed so much of having a little one around. She is a strong willed free spirit who does things her own way in her own time. She really gave us a scare back in the fall when her fancy jumping on stairs caused her to break her arm. She also showed us how resilient she was and bounced back super quickly! She has a lot of Ava’s characteristics and we sure love watching her giggle with the same things that made Ava giggle. Little Nay-Nay. You are a gem!

This Mother’s Day weekend, I spent some quiet time visiting Ava at the Memorial Gardens. Obviously, each visit is emotional as I mostly break down at the sheer horror of this visit actually being a part of my life. She just shouldn’t be here. She shouldn’t have died. But she did and that is the hand I was dealt and what I have to face. Most days, I do pretty well, but some days are simply harder than others.

On this visit, I wanted to take a few pictures – of me there with her. At first I thought it was silly, but then I also wanted to give some real pictures – keeping it real I suppose.

 

I was treated to supper with my family at the Keg and spoiled with some jewelry. Last weekend we were at a Princess tea with my mom. Alivia made me some adorable gifts at school – I love all that stuff! 10 days ago we were in Mexico and enjoyed a lot of fun times together. I will update and include pictures on that trip soon!

 

All in all, my Mother’s Day weekend was pretty good – full of joy with sorrow always present. We have enjoyed some wonderful family time together and as I look at all these pictures, I think Ava would be thrilled to know we keep enjoying life – just as she did!

But I will always wish that I had all three girls at the same time hugging me in a picture.

Thank you for reading.

XOXOXO

Sherri

Me with my three girls. 

Three Years of Anaya

Happy 3rd Birthday, Anaya!

Dear Anaya,

We love you so very much! You are a fun loving, energetic, spunky, and rambunctious little girl. Somedays I can’t believe how different you are from your sisters! It definitely goes to show that every child is different even though we have parented all three of you the same. You choose how you will do things. And boy oh boy, you have a very strong will!

It is a joy to watch you grow and figure out the world. You enjoy figuring out things for yourself and will do things your way when you are ready. You have been a little light to all of us and for that, I am so grateful to have you in my life.

  

Although you have this strong will and independent streak, you also have a sensitive side, just like Alivia and Ava did, too. Your feelings get easily hurt and you need pick me ups every once in awhile. I enjoy the sweet, sensitive side of you, too!

We sure have fun with you! You love to play at the park, go outside, go for car rides, run errands, swim, play puzzles, colour, sing, dance, read books, and ride in your little car. You have mastered the iPad and the remote! You have put on your own shoes and jackets for over a year now and have almost mastered zipping zippers on your own. You insist on getting dressed from head to toe by yourself and your favourite outfit is black pants and a black shirt! You love Doc McStuffins – by far your favourite right now! This makes me so happy because Ava was exactly like Doc McStuffins – mastering all of the hospital equipment and doing check ups on herself, us and her dollies. You remind me of her when you give Elmo a check up! You also enjoy Sofia the First, Stuck in the Middle, Liv and Maddie, and any music awards show that we have on the PVR! You still love watching Camp Rock and High School Musical, but not as much as you used to. You definitely prefer to play with Alivia’s toys and watch her shows over things for little girls your own age. We have fun going to classes at the library and music classes. You love to sing the Choo Choo song and Old MacDonald! And your dancing, Anaya; your dance moves are THE BEST! I love how you get your left arm just a going!

I love how you call Alivia “Aiya”. Ava used to call herself “Aiya” so I think it is very special and sweet how you just came up with that for Alivia. You love Elmo and Maggie and Elmo sleeps with you at the foot of your bed each night. He used to sleep with Ava, too. Again, just so very special. You love to sing “Yo Yo” (Rhianna) and “Work” by Fifth Harmony. You will sing along to Justin Bieber and dance to JLo and Britney Spears. You got moves, girl! You love to say “Ready, Set, Go!” when we cross over railroad tracks. Your favourite snacks when we’re out and about are Cheezies and Lindor chocolates. Everytime we check out at the store, you insist on getting Skittles, an Aero Bar, and a Kinder Egg. At home, you love to eat berries, toast, eggs, Honeycomb, cucumbers, tomatoes, chicken, beef, and yogurt! You love to snack on chips, pretzels, and popcorn, too!

 

You are my daredevil! You love to jump on and off the couch and jump up and down the stairs! Back in November, this got you into trouble as you broke your arm and required surgery and 3 pins! Although this affected our Christmas plans in a big way, I am so grateful that you healed according to plan and have regained full use of your arm. You did not love the hospital and doctor life whatsoever. Being in the hospital made you so sad! I am glad it was a short stay.

 

I love watching your relationship with Alivia blossom. The other day you were pretending to be a baby and Alivia came over to take care of you. Made me giggle! I love watching Alivia teach you all the cheerleading moves! You are so ready to have your turn at cheerleading! For the most part, you two get along, but have your typical sister moments of arguments and sibling rivalry. I am happy Alivia has you and you have her.

 

Our time together at home will be changing in the Fall once you start preschool. I am excited for you! I know you are ready for the challenge! I am looking forward to you making new little friends and branching off into the school adventures. You will do awesome, Anaya!

I wish you could have met Ava. She would have loved you! I have no doubt that she is your guardian angel.

Happy, happy birthday, Anaya! I can’t wait to see what the next year has in store for you!

Love,
Mommy

XOXOXO

These pictures were taken by Brittany Lindenbach Photography. I love the casual feel of the photos as we were just being our usual selves at home. Anaya was super cooperative! When she was tired, we broke out the bubbles and the cell phone to get some last good pics! Enjoy!

You can find Brittany on Facebook HERE.

You can also find my page on Facebook “Hippos and Bows” HERE.

I had to share all the pictures because I love them so much! Thanks, Brittany!