It has been an interesting week and life is plodding along.
I am talking tomorrow morning in the Ardhowen Theatre about a group that I want to set up called, Growing A Rainbow. This will be a support group for women who are pregnant after experiencing the death of a baby, either through miscarriage, stillbirth, or infant death. I know what I want it to be, but I do not know how to go about it. I want it to have a physical location firstly; I want it to be more than a group on Facebook (although I have set up a group on Facebook). I want to be able to fundraise for it (I have plans to purchase a sonographer machine for scans) and want to be able to apply for grants for funding. The services on offer will be group and individual Counselling, Cognitive Behavioural Therapy, and Life Coaching - covering the past, present, and future. There will also be reflexology and other alternative therapies, and relaxation and meditation classes. I want it to be a support group, but also want it to be more than that. I want to provide literature and studies on the mental health issues which mothers and their families experience and want to get rid of the silence around baby death and maternal mental health. So, with all this in mind, what structure does it take? Does Growing A Rainbow become a support group, a charity, a foundation, a non-for-profit organisation, a business, a community partnership, or an off-shoot of my own private practice?? I simply do not know. I have tried to pinpoint what is best and there is so much out there, so much that is contradictory, that I cannot figure it out. The talk tomorrow is to brainstorm with other people in my community what they think would be best. It is also about networking and getting the word out there. I have sat on this idea for a long time and am laying the foundations in the hope that Growing A Rainbow will be up and functioning this time next year. The more I talk about it the bigger it becomes, and I haven't really talked about it in a public forum yet. I am excited about this talk tomorrow. Fingers crossed for me...!
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I have returned. I am back from two days of training to be a volunteer for Sands. I am glad that the training is behind me, even though I thoroughly enjoyed it. Well, I do not know if enjoy is the correct word. It was intense, but not as hard as what I thought it might be.
We discussed many issues around stillbirth and bereavement. We focused a lot of the time on how to actually provide support to a bereaved parent, or couple. I found the talk about communication - both written and in person - very helpful. We talked about body language - always an interesting topic - and how to talk to bereaved parents. I found it very insightful into the grieving process. Some topics, like embarrassment which people may feel about getting emotional, was helpful for me because it reaffirms the point that everyone is different and everybody responds to grief in different ways. I had not even thought that someone might not open up in a meeting because they would be worried about crying. The ways that people deal with grief and the emotions that come up are so diverse that I need to be reminded sometimes of other possible ways which people may cope with their situation and their grief. Just because I have not dealt with a certain situation does not mean that it is not out there. And, on the flipside, just because I talk about Patrick and have photos up does not mean that every person displays photos of their child and talks openly about them. There is a myriad of ways which people react to their situation and cope with grief in their life. It was a very insightful few days. I look forward to moving on with all the work that is in the pipeline for 2017. I am jetting off to Manchester on Friday. Well, not quite jetting off, but going away nonetheless. I have training on the weekend and I am looking forward to it. I have been waiting for this for a long time.
Before the weekend, there are a few things I need to complete. I was sent a workbook of tasks to think about before the training. Most of these tasks are fine, but I am having trouble with 'my story'. You see, I have to think of what I am going to say to someone when they ask me about Patrick. When someone asks me in a professional setting, for example, during a meeting, what am I going to say? What do I mention? What do I focus on? This is what I have come up with: I was 39 weeks pregnant with my second son in April 2015. I went to hospital on a Saturday morning with reduced fetal movements. CTG scans showed that Patrick was distressed and an examination showed that I was haemorrhaging. The doctor decided that Patrick needed to be delivered and I was fasted for a c-section. However, a senior doctor overruled this decision and we were eventually sent home. After misreading a blood test on the Sunday which showed the extent of the haemorrhage, the senior doctor again missed an opportunity to act. I last felt Patrick move at 9.30pm on Sunday and, after being called into the hospital later that night, we were told that Patrick had died. How is that for a 'story'? Is there a right and a wrong type? Should I focus on the doctor? Should I bring blame into it? Can Patrick's story be any other way? Again, too many questions. I suppose it is one thing to have it planned, and another to actually say it. What will I say when it comes to it? I guess I will find out on Saturday. As I write this, Florence is trying to reach Shay's water bottle. Florence is such a wee character. She is standing now; she can pull herself up. I do not know why this upsets me so much. I cannot seem to grasp the idea that this development is normal; I see her as a doll. She is so tiny, but there she is. Her wee curls on the back of her head are catching the sun. Maybe I am just having a moment, feeling slightly poetic, being incredibly melancholy.
I do not know. Everything is jumbled. The more Florence grows, the more upset I get. Not all the time, just some things will catch me off guard. Is it that I unconsciously think about Patrick and how I miss out on all these moments with him? Or, maybe it is because I know that there will be no more children? Have I mentioned that? We will not have any more children. We have been advised against it - how lovely. Not only was Patrick taken, but also the possibility of any more children. I know we have Shay and Florence here with us and I count my blessings every day, I really do. I have been asked how I feel about not having any other children. I thought I was fine with it; I thought there was nothing really to 'deal' with. When I think about it, I just think, 'well, that is just how it is'. As Florence gets older though, I find myself thinking about it more. In different moments I am struck by a feeling of finality. What am I going to be like later on? I love the stage that Florence is at - developing a personality, making conversation, learning how to walk. It is lovely to watch her and Shay together. I think, 'gosh, I will never have this again'. Maybe if it had been my decision to make... What? I would feel differently about it? Who can ever know? I just need to accept that this is how it is. The definition of finality: 'having no possibility of further change'. That is it. This is my life after Patrick. I have reached a point where Patrick's death needs to be a motivating factor in my life. I do not see any other way forward. I have mentioned that I finally feel ready to pursue what I want - both emotionally, but also logistically as Florence is now at an age where we do not have to be attached at the hip and she is finally allowing me out of her sight.
2017 is the start, the beginning. The more I work with this in mind, the more doors are opening. You have to believe you will get what you want in order to get it. At least, this is what people say and what is written in books. My experience is showing that this is in fact true. I had no idea of the possibilities out there. Since putting this thinking into place and getting my 'wants' concrete, I have been given the opportunity to work for SANDS, the Stillbirth and Neonatal Deaths Charity. All these opportunities have just landed. It is amazing. I am going to Manchester in February to undertake Befriender Training; I am going to be a committee member for the charity; and have been given the reins to organise events in Fermanagh - a walk and balloon release and a Christmas carol service. But, the most radical event is the support meeting I was asked to run last week. Asked to run. What a trip. It is amazing. When I am older and look back on my life, I want to see a life dedicated to Patrick. I want Shay and Florence to tell me that they are jealous of all the time I spend 'with' Patrick. I do not know if they will actually think this, probably not, but you understand how much I want Patrick to be a part of my days. I have three children and I am ready to spend my time on all three. There are other 'things' in the pipeline as well and this year I want to lay the foundations for them. More on those later... The more coincidences that happen, the more certain I am that this is the way forward. 2017 is going to be a trip! The festive period has come and gone. It was over so quickly, but that is how life seems to be heading these days. Time is flying.
I was relatively 'alright' over the festive period, I must say. I never know how I will react to holidays, special occasions, or family gatherings. The husband and I had a quiet night in to welcome in the New Year. It was lovely and peaceful. I lit a candle for Patrick just so that he was included as well. I like to light a candle for him so that 'his light' is present. In some way when I light a candle I feel as if he is still a physical part of the family, of my day, of my life. I cannot do much to include him physically, but the act of lighting a candle for him helps. I buy a vanilla scented candle and that smell always reminds me of him, which I find comforting as well. As I went to bed, I blew the candle out. That is when it dawned on me, when all the happiness and optimism disappeared so quickly. This is another year. This is another year without Patrick. And it upset me to realise that this is it forever. No matter how many plans I make, how positive I feel about the future, Patrick will always be the thing that is missing. I crave for him. I long to hold him. I yearn over him constantly. I really do want what I cannot have. And this is it isn't it? This is how it will always be. A new year will never happen where Patrick's absense does not overshadow it. However, it cannot be all doom and gloom. This cloud will always darken my life, but I am optimistic about this year. I have big plans for Patrick and I this year. So, as so many have said before, watch this space. Happy New Year. Christmas is approaching. This is the time of year for celebration and family. It is hard, emotional, confusing... so many things. It should be happy, it will be happy, but it will also be tinged with sadness.
This year should be Patrick's second Christmas. I wonder what he would be like. I imagine what our family photo would look like (if we did one anyway!) with three wee ones dressed up in their Christmas jumpers and Santa hats. It would be a full house. I wish I did not have to use the word 'would' for every sentence. Every day I want Patrick to be remembered, to be talked about, and to be included. If you talk to any person who has lost a child, they will say that their worst fear is that the child will be forgotten. This I can relate too. Without a physical presence, the name of the child is spoken less. Without shared collective memories, the place of the person in the family becomes more murky. With the passing of time, people assume that the grief, pain, and hurt is gone. Like it can be healed or the current situation can ever be deemed as acceptable. Last night, Patrick's Granny gave us a tree bauble for him. How I cried. It breaks my heart, but in a good way. I hate that this is all I have, but I love it when someone does something for Patrick, gets something just for him, keeps him going simply by thinking of him and talking about him. It honestly does not happen often enough. Maybe this is why it hits me so much. Anything with Patrick's name on it, with his memory and presence attached to it, is priceless to me. I will cherish the bauble like some heirloom piece of jewellery. So, now when I look at our Christmas tree I see Patrick front and centre. It is calming in a way to know that he is 'on' the tree being a part of our Christmas season and knowing all of our Christmas wishes. Who knows what this Christmas will bring. I was at a meeting last night and I must say, I did very well at acting 'normal'.
I believe that each person has different sides of themselves which they show in different situations and with different people. The person you are at work will probably differ from the person you are on the sports field. The person you are with your Granny will be different to the person you are with your friends. We have multiple personalities which come out at different times. Since Patrick died, this has become more apparent. The person I am at home with the hubby is very different to the person I am in public, anywhere in public. As time goes on I feel like I have to differentiate between these two spheres even more. At home I feel safe. At home I feel like Patrick is protected, remembered, and is freely talked about. He is one of my children, my second son, my middle child. In the outside world with, what I call, 'normal people', Patrick is not any of these things. People brush over the fact that he is a person and do not discuss what has happened. Each time someone dismisses Patrick or acts like nothing has happened, a piece of me is hurt. Each time someone tells me how lucky I am to have two children when they know that I have three, I am so disappointed. I suppose as time goes on this will happen more. I feel like I have to protect Patrick against these things. I know. I do not understand my thinking sometimes. When someone asks about Patrick I am elated. When someone mentions him I am filled with joy that he is remembered and considered a member of my family just like Shay and Florence are. I put on a front when I go out. I can no longer comfortably do small talk - the disadvantages of being a recluse and then attempting to reintegrate with society - so I place myself as the tea server, the tidier upper, the 'I'll get the photocopying for you' person. I smile, I laugh on cue. I feel like a robot on autopilot. What my life has become. I put on a front as a fully functioning member of society. I have learnt that people do not want to talk about Patrick as I do. I have learnt that people do not think about Patrick as I do. He is always on my mind. So, as a form of protection I keep Patrick largely to myself in my home. I have so little of him anyway that I feel like I now need to keep him all to myself. If people will not discuss him, then I have learnt to keep him to myself. I am trying to view this as a positive... My front is getting better. I was hugely surprised with myself last night, if I do say so myself. It is the small things, the changes, the personal victories. The only problem I see is that the more of a front I put on, the more people forget Patrick, the more I happily build my little wall with Patrick and I on one side and everyone else on the other. How will Patrick's death affect my children?
I know that they are only young, and Florence definitely is not affected by anything at the moment, but what about later? Will they be psychologically damaged? Will they be emotionally stunted? Will they lack self-esteem? Will they worry about life and death? Maybe they will question their place in the family? Will Florence think that she is a 'replacement child'? Will Shay take on a burden of being the only son when there should be two? Whenever Shay talks about his baby sister, I always mention his baby brother. Is this 'right'? His relationship with Patrick and his relationship with Florence will always be different. Maybe I should be allowing him to have a relationship with Florence without Patrick? Am I distorting his image of a sibling relationship? How can he possibly know who Patrick is and then work out how Patrick relates to Florence? He has never physically seen Patrick. Does looking at a photo and saying, 'this is your baby brother', confuse him? Is Patrick a person to him or simply a photo? Can he understand that Patrick and Florence are the same because they are both his siblings, but yet they are different because one is with us and the other is not? Should I just leave Patrick's photo on the wall and wait for Shay to ask? But, then we go to the grave together, or 'Patrick's Castle' as Shay calls it. Maybe Shay, and eventually Florence, will just accept that this is how it is and not really question it the way that I do? I have obviously been reading too much about this at the moment... But still. It makes me wonder. Maybe it is not so much how they view Patrick, but about the security, love, and comfort which they feel growing up? Maybe it is all about providing them with a stable and grounded upbringing? Maybe, as long as this is the foundation, then the fact that they have a sibling who has died, will not affect them negatively or harm them developmentally? Is there even grounds for worrying about this in the first place? I want Patrick to be a 'normal' part of their life. How do I strike the balance of making him a part of the family, but allowing them to have an upbringing which is not overshadowed by grief? I suppose this is the million dollar question. There have been a few instances this week where I have looked at Shay and Florence and seen Patrick's absence.
The hubby and children were in the sitting room the other night and Shay and Florence were laughing. I don't remember what they were laughing about, but it was probably nothing. It amazes me how the laughter bounces off each of them. Florence will be laughing at Shay and Shay will be laughing at Florence. They will both find it the funniest thing ever. I love nothing more than hearing their laughter. It is a wonderful sound and I thank God that we are all healthy and happy. So, the other night they were laughing away with each other. I went into the sitting room and the hubby and I both stood in our respective corners watching them. The joy on their wee faces is lovely. The hubby said, 'imagine that there should be another one in between'. And this is exactly how I feel all the time. Florence is sitting, Shay is walking, and Patrick would be...? I do not know. I never will. It's lovely and sunny today. There is a frost on the ground. I will take the children for a walk. Shay will be walking and Florence will be on my back. And Patrick will be... He should be one year and seven months old now. Can you imagine? I have a preschooler, a toddler, and a baby. If only I was so lucky to have all three here with me. Patrick is the missing one in the family, in the photos, in the days out, in the walks, in the night time routine, in every single thing on each and every day. |