Grief: how it is fucked up and not at all what you think it’ll be

We were told that our daughter, Eilys, had a terminal condition when she was 6 months old. Actually we were told the day before she was 6 months old. I can’t remember the words the Doctor said, I remember the tone of his voice, the rhythm of his words and the sad look in the eyes of the woman sitting opposite whose reasons for being in the room were a mystery to me as I was so worried about this appointment that the introductions were lost on me. The first wave of what was being said hit me square on so I was knocked and winded for the rest of what was being said. My husband and I through a veil of tears tried to ask useful questions as we passed Eilys to one another, trying to get as much of her as we could, as if it would solve the problem. Looking into her eyes, her puzzled eyes, she smiled and laughed at us as we sobbed. Phrases like “life-limiting”, “feeding issues” and “respiratory problems” punched and kicked me, I tried to write things down for later but nothing mattered. Feeling both in so much pain and utterly numb. I really don’t remember much more about that day. Telling other people must have been awful but my wonderful brain has erased most of it. We returned home to my brilliant MIL. I simply shook my head at her. I don’t know what else I said. I remember sitting on the fireplace in our dining room as I told my brother but I don’t remember what I actually said to him or what he said to me. I recall flashes of it, the pain, the numbness but mostly I remember her little face smiling at me like nothing was wrong.

I am starting this from when Eilys was diagnosed because that is where my grief started. When we were told that she had Spinal Muscular Atrophy type 1 was the beginning of the grieving process. Ugh I hate that saying. Grieving process. Like it is a system of grief, with steps. For me it isn’t like this at all. It’s a long and winding road, some of the bends are like knives of pain whereas others are filled with comfort and warmth. Most of the time I don’t really understand how I am feeling or I worry that I am not feeling like I should be feeling but I presume it is all normal. And that’s the thing, you are adjusting to a new normal.

Straight after Eilys’ diagnosis we were engulfed by it. The entire situation didn’t compute. How on earth could she have a terminal condition? She was so alive. She was so present. Eilys lit up the room, she made us laugh, she laughed, she played and she was so here, so much part of everything. But then of course there was something wrong. I had been worried about her for weeks, months. I worried about her so much that I had pretty much just worried through the weeks prior to her diagnosis. Those weeks are impossible to think about. I felt like I was going insane. I had taken her to see family members and voiced my concerns, I had taken her to my health visitor and the health visitor drop in clinic on several occasions, we’d been to the doctor’s numerous times and I had googled, once. The last bit was probably the worst bit. I googled her symptoms one time and one time only. After a few web pages of “it’s normal… all babies are different… don’t worry” I found a few pages of conditions, conditions that scared me, so I didn’t do it again. I felt so out of control and like no one was listening to me. As horrendous as her diagnosis was, as heartbroken as we were, it was also a huge relief. That sounds awful.  But in all honesty, it was. We knew what we were dealing with and we could start to deal with it. Even though we were dealing with the worst scenario knowing that there was no hope of recovery didn’t make us feel hopeless. It just made us more determind to do everything we could to give her the best of everything with whatever time we had with her. Knowing what we were dealing allowed us to move forward. The not knowing was the worst bit. Well, actually there were loads of worst bits. But do you know what, her dying wasn’t the worst of the worst bits.

As our news filtered through our family and friends we received so much love and support that it was quite overwhelming. It was quite literally an outpouring. People on the whole were amazing. We had people raising money for Eilys to go on adventures, having auctions in her name, friends doing all sorts of crazy to raise money in Eilys’ name (3 peaks people, crazy), a charity ball and people gave us advice on places to go or charities to contact. The old cliché that you don’t know who your friends are until the shit hits the fan is totally true. My friends are and were brilliant. I had people that I hadn’t talked to in years coming out of the woodwork offering support and checking in on us. In a weird way it made the whole thing a lot more bearable. Eilys mattered to people. Lots of people. And people who were not directly related. And by extension I did, people cared. It is really difficult to go through a situation like this without presuming that you are being punished or something along those lines and having friends and family by the truckload offer unwavering support and love definitely drags you out of that abyss.

Of course there were a few folk who let us down. Friends that you thought had your back or people who you presumed would just support you. I am not going to lie, this stung. It is hard when you have put years into a friendship and find out that maybe they didn’t feel the same way. For a long time this really annoyed and upset me to the point where my husband said “instead of getting annoyed just say something to them”. It was then that I realised that I was just using this as something to be angry about and that I didn’t really want people like that around anyway. I have since thought that some people can just put their shit behind them or to one side to be there for a friend and others can’t. That’s not something I can be grumpy about really. Plus in not talking to these peeps for a while I had no idea what was going on in their lives either. They might have had a valid reason for staying away. Or maybe they are just nobbers and I am better off without them.

I think a lot of our actual grief and mourning happened after her diagnosis. All the bargaining, denial, angry and sadness. We kept it all as much to ourselves as we could. We had a “not in front of the children” rule. We spent many evenings crying or cuddled up in bed being sad or angry. As a couple we tried to discuss our feelings and tried not to shield each other from our feelings. We leaned on each other. I am in no way saying that we kept Eilys’ illness from Dylan. We told him that she was poorly and that her muscles didn’t work very well. We had this conversation with him a lot and would answer any of his questions as best as we could. We were very lucky in that for the most part Eilys’ was well and we managed to keep her out of hospital. She had a few chest infections but we dealt with these from home with antibiotics. But we didn’t ever bring up the subject of Eilys dying with Dylan which in hind-sight was probably a mistake but how do you explain death to a 3 year old when you don’t fully understand it yourself.

A lot of the time we were able to keep a brave face on things. We got on with things. We made a list of things we wanted Eilys to do and we ploughed all our energies into her doing as many of them as we could managed (I think there was only 2 she didn’t manage). Having a focus really helped and as time moved forwards Eilys needed more and more care which kept our minds busy. Dylan kept us on our toes too and he kept us sane, they both did really. But of course both myself and Joe had our wobbles. Sometimes we were angry at the world, other times we were just so so sad but luckily we were largely able to keep these days to the minimum so we didn’t “waste” much of Eilys’ time.

I tried to take as many photographs and videos as I could. I took bloody loads and I am so glad that I did. They are so nice to look back on. And not just the smiley happy ones. Some of the candid ones or even the ones where she looks sad or annoyed are lovely to see as they were all facets of her.

I don’t really know where I am going with this blog post but I will write more on grief later.

Big love


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