Dylan’s Army: Sarah Day

Life growing my parents always took us to funerals and church we knew what to expect it wasn’t a shock to us. Grief was something we were taught not to shy away from and something to respect in others.

When I was five my nan passed away. Our grandad on that side had died before I was born, but we were all close to my nan. I remember her taking us on the bus to the town market, sleepovers and I remember the chat in those days everyone would say hello to each other. My nan was well-loved by her community. I remember at this time I was so young at my nan’s funeral.  Seeing my mum broken and the first time seeing my dad cry was different. I remember not crying like my siblings, but taking it all in. The funeral can still squeeze those thoughts from my mind.

In my teenage years, grief struck again. I lost a friend to suicide, which was so shocking to me. I think I was around the age of 17. My friend’s death devasted a whole community and to see such close friends broken around me not knowing how to make things better was an out-of-control feeling that was really hard to deal with. This was the first time in my life I had ever seen someone I knew, young fit and healthy, lying in an open coffin. I remember staring at him with tears and then backing away in fear, but trying to be brave for my friend who I was there for and failing because it was all too much.

It took me a while to sleep with the lights off or walk in dark places on my own. I remember the smell and the feelings from around that time. I also remember around that time there wasn’t much support for those grieving. I do recall how it also bought people closer together. At the time, my mum was putting herself out there for another grieving mum and I can’t remember if it was a visit, a phone call or a letter, but it was something. I thought that was kind. I understand it more now.

Time went on years go by, but you never forget. Grief struck again when I went on to lose my nan. It was hard seeing my dad and granddad so alike and look so sad. You never ever want to lose anyone, but I think you know the time may come when you lose a grandparent. For us all, the grief we were feeling was always too soon. Nothing could be changed or fixed so we all regroup and carried on.

This is when things really took a turn for our family. My beautiful eldest sister became poorly with cancer. She had already suffered in life before having cancer twice and also losing her leg to another disease completely unrelated. None of this held her back and she didn’t show fear to her younger siblings. She became a successful high school science teacher and was loved by so many. Absolutely beautiful in every way.

Grief struck again and how could we lose someone so special someone who had already been through so much? How could my parents lose another child? My sister died at age 35 and at this time I was 25 with two small children. It was very hard around and I often say my children were why I got up every day. They pushed me and made me strong to cope when I didn’t know how.

Jo, my sister, was like a mum to me and I could tell her anything, she listened. She cared we were never a problem to her growing up. A true inspiration. She died in a hospice and was one of the younger ones there. I remember how the staff made us all feel and the rooms they gave us to rest in. It was so peaceful, I even slept to be woken by my other older sisters saying it was time, as we held my sister until she passed away. All of us stayed with her. I remember my dad and brother so similar keeping as brave as they could, but also taking moments to themselves. My husband came and I asked him to bring our children. I took them into the room to say goodbye. I told them that their Aunty Jo Jo she was known as was sleeping and was peaceful now. They were tiny. They didn’t know what was happening, but it was the best thing for us.

It took a lot for my family to pull together again, but we did so as a team. All the siblings ran for a charity and it was good to feel sad, but united running on adrenalin. I did worry and fear I would lose another sibling at this time, not through death, but maybe one of us would drift away. My children became like glue to us all.

As time went on, I gave birth to another child in my late twenties. It felt like things were settling again and then we had more devasting news. To start, my big strong dad was diagnosed with Alzheimer’s dementia/Parkinson’s in his late sixties. This was terrible as we had seen from a distance what the disease can do to devastate families. It’s awful and once again around this time, it was so hard to get any support if you didn’t tick the boxes. My mum and us all were grieving as my dad didn’t recognize us anymore. I became his sister a lot. My dad became our Alzheimer’s dad and he was fun to the young kids. My youngest at the time would constantly grab his glasses off his head. Then my dad became so poorly that he passed away. He did suffer massively towards the end, but once again we all did what we could or comfortable with.

My eldest sister flew back from Australia, but was heavily pregnant and had to get back or she would not be able to fly. My brother was around, but he found things difficult, which was understandable as he was close to my dad. My dad passed away with me, my other sister and my mum around him and it was a lot to deal with. Grief does so much to you I remember my friend was having a tough time and whilst my dad was still in the hospital rest (mortuary, I hate that word) I went with a friend to visit her family member. I wanted to be there for her, but also be at the hospital again feeling my dad was on his own. I was running on adrenaline. Grief takes over.

Time was like war wounds and my family was left pulling together. A few months after my dad died, my mum was packing and planning a grand trip to Australia as it would be her first time abroad in absolute years. It would be a trip to meet her granddaughter. This wasn’t to be as my mum suffered a devasting stroke. Instead, my sister came over to the U.K. My mum had to learn to swallow, walk and talk again. She felt helpless, but still had a fighting spirit. Grief was still raw for her as she was still grieving the loss of her husband, children and now the loss of using her arm ever again and her independence. After challenging work my mum finally went home. Rollercoaster again.

Less than two years later, my mum was still in recovery we lost my husband’s dad. After a short but devasting illness, his father died. It was hard to see how his mum coped and how my husband managed. Seeing the one you love cry really hurts it is that helpless feeling again. No fixing I could just be there to listen to care.

Then this was it. In 2018, my husband and I lost our son Dylan at age 12 to sepsis. Dylan suffered from pneumonia and Flu B. Dylan’s death was preventable and he should still be here. No amount of grief or any loss could prepare us for losing our beautiful brave son. This grief and this loss will never be okay. I have no words for what the pain of seeing my husband and children grieve felt like.

Looking back on my life, I had more strength than I realized. I started to grieve aloud. I turned my emotions my bereavement and anger into something special. I showed my family we can and we will get through the tough days.

I felt like I wanted to include a full picture of our life in this article. A question I get asked a lot is: how do we cope with our grief? For myself, a mother without her son I focused once again on my family. I spent lots of time outdoors. My life was stripped back as I craved the simple feelings. I started using all the senses I was lucky to have: my eyes to take in the beauty, my ears to listen, touch to ground myself, taste to eat what I wanted and smell to recreate memories and beauty in flowers, etc.

I said no to people and sometimes yes. I shut the outside out for a while and became brave in touch with how we got through to the next day and so on. I did whatever we could manage each day and we’re now at five years without him. I showed my feelings I talked a lot with my children and husband and sometimes we didn’t, but I had all the time to do things and mutual patience for each other. Around this time, I was making new memories, which I realize now was for survival. For example, we hired a boat, something that turned out funny, and even though it was supposed to be a sad day, we made the most of it all. I cried in the shower and screamed in the car. Whatever we did we kept on keeping on and we even had a rainbow baby girl in the process.

It is and always will be so tough. I mean how do you live without a child? I’d seen my mum and dad do it, but this was my son I loved him more than anything I could not bear it.

The place I’ve channeled my grief is on social media sharing my diaries, my personal feelings, family, grief and sepsis awareness. With Dylan’s pages, I’m so proud to have helped so many and I’ve built up a lovely supportive community. I’ve talked with other grieving families and many inspirational people. I’ve heard personal stories and I’ve listened with kind ears and most importantly no fixing just being a go-to. Sharing and being a constant in the hope of helping others. I share the #dylanarmy

I am now 41 and a mother of four with one of my children in heaven and most importantly in my heart. I try to be as much like my son as possible. I created a space for others, but also my family as I wanted my children and husband to feel a part of something. It’s so brilliant when my husband allows me to share his grief too. As I said, it’s very precious to that one person never to be dismissed.

There is no fixing in grief. I’ve shared my journey to say it’s all different and all very personal and that’s okay. The death of a pet is heartbreaking and causes horrific grief too as we felt this with our daughter when she lost her pony just after losing her brother. As parents again we felt truly helpless, but this community stepped up.

It’s not all roses as you may come across people who are really quite cruel. They can’t see or even try to imagine what a grieving person is going through and they may say inappropriate things. Having a positive place to write my diaries and then rereading them, getting outside, doing new things, taking my time, learning it’s really okay to say no to things and learning your grief is so personal and trust who you choose to share with has helped me during my grieving. Rages can happen and relationships can break down. Life after loss is very tough. Time is precious so be a magnet to the good. Most importantly not all days are the same.

I always say to people to just have a day, not a good day, just a day. This is what I learned through a kind lady I stayed with after making contact through Dylan’s page when raising awareness for sepsis. Another saying a kind friend of the family told me is you can’t help others without putting your own oxygen mask on first. These have both been carried with me and helped massively.

There are a lot of positives and good out there and you deserve it. Remember your senses take time to feel them. I also have a made-up guy in my head called John who he helps process my thoughts. I imagine him with a desk of paperwork thinking here we go again! You can do this any way you like. You matter.

Thank you for reading. Love forever, Dylan’s mum #dylansarmy

For more information about Sarah, you can check out her website.