Good grief?

On Tuesday I brought a glorious apple tree and today it was delivered. As I looked at my beautiful new tree I began to ponder over the significance of it arriving in our lives now. For me it provides a good analogy of something that has become a part of our lives. Grief.


May I explain that our grief is not like many others because the person we are grieving is still very much a part of our family. We are grieving me.


I would be a fool to think that the change from healthy very active mother to a disabled one with chronic pain would leave us all in exactly the same place that we were all in 18 months ago and it didn't take long to identify that one of the things we were all experiencing was a very deep grief.

When I think of the cycle that our apple tree will display to us over the next 12 months I take comfort in identifying with those constant changes. At the moment the leaves are green and the fruit it bares is prominent. Prominent just as our grief is. For the past 4 weeks as the reality of the new diagnosis settles in it feels that every day this grief is growing and there is nothing I can do to stop that before it is ready. Of course the next stage, when that fruit becomes too heavy for the tree to bear is for it to fall away and the tree will go into hibernation. Ploughing all of its resources into getting through the winter. Then, just as it appears that the days will be cold and the evenings will be dark forever the cycles of the seasons promise me that soon the tree will break out in beautiful blossom. A blossom that will nurture the wildlife around it. And on the cycle will go.


My husband has been a source of great strength to me through my illness and always let me feel exactly what it is I 'need' to feel. He never affronts or belittles my grief and it was he that helped me identify that it was natural for me to go into a time of mourning. After all, something has been lost that we will never get back. This support from him as helped me to identify the same emotions in my daughter.


Our daughter is a bright bubbly free spirit, for three years she had my undivided attention. I 'wore' her first on my front then on my back for as long as I could and I slowed down to see the world through her eyes. I rejoiced in motherhood. Our daughter has a wonderful vivid imagination and I was so blessed that she would allow me full access into her world. Everyday was an adventure, mess was our friend and being creative was second nature. I have no doubt that being her mother was the reason I myself had been born.

Before we moved in November 2012 I was house bound for almost 6 months. Only able to leave the house for hospital appointments and visits to the doctors. For a little over a month last year I actually ended up unable to leave my bed without support from my husband. The pain was all consuming.

I cannot imagine how the dramatic change must have been seen through such young eyes. If only I could take it all away. Of course I can't so we manage it as best we can. All the adults affected by this life changing event are allowed to have sad days and cross days so why on earth would we not allow our daughter the same?

The moment I realised we needed to acknowledge her sense of loss came about 12 months ago when I said to her "Come on sweetie, you need to cheer up" and she replied "But Mummy, the sad is just stuck in my head"


I would never presume to declare that we are doing it absolutely right but the way Amelia-Rose now responds to her 'hard' days would indicate to me that we must be getting something right.

Amelia-Rose will be 5 in January but she was just 3 and 3 months when I first went on the crutches. One of the first things I did for her came 3 months after the pain began. I drew and laminated a face for her but this wasn't any ordinary face... oh no! I made all different mouths and eyebrows that she could place on the face. When she had chosen a combination we would talk about how we might be feeling if we pulled that face and for added fun we would practise ourselves what those faces would look like. This gave her the language to put a name to a feeling. I believe it is one of the reasons she is so emotionally aware and compassionate now.


Anger is a huge part of the grieving process and something I felt we had to identify. There were flashes of a temper that we had never encountered before. It wasn't a defiant temper tantrum I could see that it ran so much deeper then that. My husband bore the brunt of her anger and it was so sad to see. I believe Amelia-Rose has every right to feel angry about what has happened but we learned that we needed to find a way to affirm her anger without it being directed at someone. The phrase we use is that 'You are allowed to be angry (at the situation) and use a cross voice but it is not ok to be angry 'at' Mummy or Daddy". Using this approach means that we can envelope her with love on her angry days and not see it as something that requires 'punishment'. Lord knows how I would cope if every time I felt frustrated or angry about the curve ball life has thrown at us resulted in me being told I wasn't allowed to feel that way. Channelling her anger means that we identify that she is entitled to feel that way but these are the ways that you process that feeling. We talk about angry words and always say to her after she has calmed down "We love you so so much, even when you're angry"

The other day we had had one such conversation and Amelia-Rose decided to test just how deep my love runs. We were cuddled up in bed (I'll move on to that later) and she said to me "Mummy would you love me if I was a grizzly bear?" "Yes" I replied "A little bug?" "A scary tiger?" "A big bus?" "A rhino?" "An elephant?" "A monkey?" "A shooting star?" "A moustache?" Of course I replied yes to everything and we had a laugh at the silliness of it all. The moustache one particularly made me laugh. The point is though that she knows no matter what we will love her.

As much as I try to put on a good show and prevent Amelia-Rose from seeing how much pain I am in she always knows if I am having a really bad day her behaviour will inevitably be affected in one way or another. If we are out in town (I use a mobility scooter) and I stop to chat with someone she may become whiny and impatient. In these situations I will say something along the lines of "She's just behaving exactly how I'm feeling on the inside" It is my subtle way of telling the observer that I do not consider this behaviour to be 'naughty' but it also affirms to Amelia-Rose that she is allowed to feel the way she does.

You wouldn't believe how many strangers see me in my mobility scooter or wheelchair and say to Amelia-Rose "Are you being a good girl and looking after mummy?" It isn't something that they would ever consider to be inappropriate but seriously, you're asking a 4 year old with a sick parent if they are looking after them? No way does she need that responsibility! To this statement I respond "Oooh no, it's not her job to look after me, it's my job to look after her" The thing that people forget is how literal children are. Amelia-Rose just needs to be a child. That's her job and that is her only job.

I always try to remember that even if she is completely consumed in a task those little ears are always listening.

Evenings and early morning are always the hardest times for me. Everything just feels so much more overwhelming. For this reason meal times have become something that inwardly I find quite difficult now but they have always been so important to me. For that reason I always try to keep them as positive as possible with a simple question "What was your favourite part of the day?" It has become a script that despite how much I am hurting physically or emotionally I am focussing on what has been great about Amelia-Rose's day. We all have to answer the question too and it's nice to be forced into ending the day on a positive.

Bedtimes. Bedtimes. Bedtimes. Every child should fall asleep by themselves in their own bed in their own bedroom. To this I say... WHO SAYS?! I'm sure super nanny would have a thing or two to say about this but if my little girl wants to climb into my bed at 7.30 and be cuddled to sleep after a story why the heck not?! When and only when you're child has been through what mine has are you allowed to tell me I am building a rod for my own back.  Though she starts off in my bed she will go into her bed when my husband comes to bed and everything is fine. Here's the thing, when you are the parent of a grieving child you are in another ball game and though it's hard when people are being critical YOU know your child better then anyone else in the world and you love them more then anyone else in the world. As long as all of your decisions begin and end with love then how can that possibly be wrong.

The other thing we do is openly talk about 'how it use to be' whenever Amelia-Rose would like to. Is it painful for me? Yes of course it is, it actually magnifies my own grief but it is so important for her to feel the freedom that she can talk. Clearly she is still processing the change and talking always has been and always will be one of the best ways of 'coping'. It is not my job to make her feel responsible for upsetting me, I can cry it out when she isn't around. I never want her to feel like she has to hold anything 'in' to protect me. When she talks about being sad I will tell her it (my illness) makes me sad too but I never want to 'shut her down'. When she needs to talk, we talk. This is something we are going through together and I cannot imagine not being united with her on this one.

For a while if Amelia-Rose caught me crying I would tell her I was remembering happy memories and crying because I was so happy. One day I heard myself explaining this to her and thought "What the hell are you doing?! What kind of half arsed explanation is that?" I was trying to be her protector but teaching her a lie. So, I very calmly explained to her that Mummy was having a sad moment, I was sorry that she had found me sad and the sad wasn't her fault and it would pass but everyone gets sad sometimes. Even mummies. The acceptance of that explanation came much faster then the million questions that would follow if I told her I was crying because I was happy.

Every now and again Amelia-Rose will catch me off guard with a memory of how things use to be, a few weeks ago she was laying front down on my bed hanging over the edge doing a head stand and out of no where said 'Mummy do you remember when we use to stand up on the bed and dance really really jumpyish? I miss that' Unfortunately there is little I can do about that apart from talk it through with her but when last night she said to me just as I was putting her in the bath "Can you remember when we use to put knickers on our head?" Now there is a task I can do something about! So there we were, Amelia-Rose in the bath, me sat watching... with knickers on our head.

If Amelia-Rose is having a sad day herself (which is always displayed through clinginess, whining and completely falling apart over the smallest thing) we try to inject some silliness into the day. There were many spectacular water fights during the summer and face painting my husbands face (who has a beard!) is a favourite past time of hers. We are fortunate enough to live 2 miles from the sea so perhaps there will be ice cream on the front or a picnic in the lounge. I try to remember that these are the memories for her life that we are building with her and I hope I am doing enough so she remembers the fun things we did and not the sad days that we did them on. Not so long ago we'd had a really tough morning, I don't know what triggered it but Amelia-Rose was just irritable at everything I did and I could feel myself hurtling towards the end of my tither. In the end I ran a nice deep bath emptied a pot of sequins into the bath and added enough blue food dye to give the bath a fabulous blue glow but not enough to dye her blue! I added a few drops of lavender and geranium essential oil and in she went. Sequins and food colouring in the bath?! What a cleaning nightmare I hear you cry. Well, sod the cleaning. It worked. It was so out of the ordinary it was enough to lift her mood.

The other really important thing I learned to identify were Amelia-Rose's triggers. It's been a while since she's had one but Thursday morning had all the key indications that she was having a bit of a rough time to the point that I mentioned it to her class teacher when I dropped her off at 12.30. What were the triggers that day? Well Tony and I had to leave the house at 8.15am for a pain clinic appointment and then she had to come with us at 11.10 because I had a doctors appointment. Tony and Amelia-Rose did not have to come in with me but she still had the knowledge that I was seeing my doctor. Any kind of doctor or hospital appointment seems to be a trigger for her. For the first time ever I am going away for the night with my friends on Tuesday and we are going to visit Bath (My favourite city in the country) Wednesday. This whole week I have been telling her that it is blah number of sleeps until I go and I am going with two of my friends that she knows very well and we are having a nice trip away. This she is dealing with well, if I had just told her I was going away for the night you could guarantee she would think I was going into hospital and it would upset her.

One of the hardest things for me was when I first became disabled and Amelia-Rose would bring me all of these 'special drinks' to make my legs better. How do you tell your only child that a magic drink wouldn't work.  It was so sad, although I honestly couldn't tell you which was sadder. Her making the drinks for me or when she stopped. There are some things that with all the strategies in the world you can never make right.

So now is the time for me to admit something that parents everywhere hide. Sometimes I get it really wrong. The pain is too much and I turn into something that resembles the step mother in fairy tales, I am snappy and lack patience. I just want to left alone. I want to wallow. Amelia-Rose has been unreasonable all day and I have just had enough of compromising. Nothing I do will calm her down or bring her out of a hot tempered crying fit. Then what do you do? Your precious child who you would move heaven and earth to make happy is just really rubbing you up the wrong way. This is piece of advice that was passed onto my mother when I was a toddler and I use regularly "You just love her through it" What more can a parent do for a child then to love them.

I am amazed how well Amelia-Rose has adjusted to this new kind of normal, obviously as written about above there are still hard days and sad days but we face them together. We cannot deny that our lives are very different to the families around us but that does not mean that our roots aren't as strong and just as our apple tree will dig its roots deep into the ground and entwine with each other to keep the tree standing through the storm so will we.