~Fiona's Journey~

~NOVEMBER 2003~

Friday 29th November 2003.
My updates are a little late because Deb was away on a much deserved holiday, and I have been so busy. Firstly a big thank you for all the wonderful emails that you keep sending me when you have read this site. I often read them in tears and mean to reply but then forget and they are deleted off my screen! Please know that each and every one means so much to me still. This week was very hard as I had to prepare and attend an interview. My brain has been on go slow for so long now I found it very hard to suddenly step up gears and try to think! I had to prepare a lesson, quite straight forward, would ordinarily take me about half an hour, well, it took days! I just sat and stared at a blank piece of paper! Rather worrying! Eventually it was done. I used the song we used at Joshua's farewell as it fitted in with what I was going to teach, but I was somewhat nervous it would upset me as well. I think subconsciously I wanted Joshua to be there, to be acknowledged and this was a subtle way of doing it whereby only I would know the true significance! It was very nerve wracking walking back into school. I had not been back in five months so the last any of the teachers or students had seen of me was heavily pregnant. I was thankful that apart from a lot of sympathetic stares and a hug from one of the Deputy Heads, no one asked about Joshua! In my suit and makeup it would have been too disarming. I managed the lesson fine, and took great comfort from playing the song, but I found the interview hard. Having so many questions fired at me very quickly and having to think so fast was very difficult having spent so long quietly on my own. I was very honest and said that I wanted another baby (not the wisest thing to say to any potential employer!) but I have enough stress in my life without making that worse by lying as well. I didn't get the job, but I was offered supply work, which for me is better as I can pick and choose when I work. I don't want to work full time, and they were looking for someone who could offer this. I feel that the children have to be at the moment my first priority. Supply work gives me the flexibility that if I have a bad week I don't have to work!! I feel I need less pressure at the moment so I am happy with this. Going to the interview was encouraging in the respect that I realized I can still do my job well. Since Joshua died I have lost a lot of confidence in my own ability to do anything adequately at all, so I felt a lot stronger afterwards was also a lot less nervous of even the most disruptive students, again, scary is watching your son die, everything else is not as frightening ever again, because you have lived through and are surviving the most frightening thing that you can, the death of a child. So there we are. I am glad I was persuaded out of my shell at long last, but relieved to come back home where all my memories and security still is very much!

Simon and Jono at Alder Hey       -       The bbeginnings of Joshua's Garden

Sunday 24th November 2003

I am much later in writing this week, as it has just been so busy. I find it very hard when life becomes jam packed, I can't think straight and tend to fuss around getting nothing of any value really achieved, and then get irritated by this lack of achievement as well! A vicious circle.

The week started off with us going back to Alder Hey Children's Hospital to see the wonderful Dr Gladman , who so sensitively looked after Joshua and us. We nearly had to trek half the kids as well , as over the weekend they had all come down with the flu! but I was aware that re-visiting so soon would bring back all sorts of memories and would not be a good idea, also I had so much I wanted to ask, I was aware with them all their it would be very difficult to do this (and also very noisy!) So in the end they were all dosed up and sent to school. We took Jono who was so ill he had very little idea where we were (thankfully). Dr Gladman told us that the main reason they had decided not to operate on Joshua was that although his Aorta was a good size, the aortic vein that goes into the left chamber was very small indeed, if this had been bigger they would have given it a go. In some ways, although I wanted him to have every chance of survival I am glad that they decided not too, rather than him have a very slight chance and die in surgery. At least he did not have to endure any surgery with a very poor outcome, and we had the great privilege of being with him, loving and holding him and singing to him as he passed away. Before I gave birth I thought I would want to fight with all that was in me, now I am glad there came a point where I realised this was not the best for Joshua, sadly. It still breaks my heart to think of it all, but at the same time, as we have said before, we have no regrets.

Tuesday was AWFUL. I cried for most of the day, and Simon said he found it very hard as well. I felt as if there was nothing left, no research to do for the next appointment, no meetings to discuss Joshua any more, nothing left to look to, a point to talk about him again. It felt like I had suddenly been dropped from a very great height. Joshua's life was now bundled up, in the "dealt with" package and filed away. I know that is no ones intentions and I honestly thought I would be glad when all the appointments were over so it came as a real shock to me to find out how dreadful I really felt.

The only point of contact will now be if I decide to get pregnant again, I will go back to either Liverpool or Manchester for scans. I have been told that there is about a 5-8% chance that it could happen again, so that is roughly 1 in 20 or 92 % that it doesn't. It is very hard to think how I would cope if this reoccurred. I cannot imagine living through this again, but then a few months ago I could not imagine how anyone could live through their baby dying, and yet here we are, slowly surviving.

On Wednesday I had to take Jono back to the doctors as he was not any better and again I hit a clinic, this time the Ante- Natal one!!! It wasn't until the lady next to me asked how many weeks I was that I twigged. Thankfully my wonderful midwife Anne came rushing in and took me to a side room to wait for the doctor there.. Phew!

The rest of the week rushed by in a frenzy of activity and at the weekend as it was sunny Simon got outside and planted some lovely bushes and Joshua's tree already for his stone. His little garden is really taking some shape now and will give us all a much need focal point as well. Simon has chosen plants that all have either blue or white flowers, so it will look boy-like as well. I think this helps him, as he feels in some small way he is doing something for his son.

I also went to the cinema with Simon! Not ground breaking, I know, but for me a big step. I did enjoy the film but came away still feeling guilty for going out when Joshua has died. I am beginning to understand why in some cultures the women wear black for a year, it does seem more respectful and people are aware you are grieving. Don't worry I am not now going to dress in black with a veil!! I am just saying I can see where they are coming from.

And so to another first this week, my first interview, and teaching, back at the school I was in when I was pregnant. I can't imagine teaching a lesson as I can barely organise myself at present , but I will give it a go. I am not sure I want to go back yet, or am ready too, but I guess I wont know this until I do!
Goodnight sweet Joshua, you continue to shine in all of our lives in so many small ways. You are thought about, talked about and loved so very much.

Thursday 13th November 2003

It is nearly two months now since Joshua was born and died. I wondered if I should continue to write these pages still or whether to put a closure on them now. I still find it very hard to talk about how I really feel, and still for the most, don't want to, yet somehow I want those close to me, to know and understand, so, for the moment I will still write as this seems the best way to keep everyone informed, yet at a safe distance as well!!
Time, although moving on, as yet has not made things any easier. Someone recently described that after her son's death she felt as though she had under gone open heart surgery but without the anaesthetic! That pretty much sums up how I feel on the bad days in particular. The pain is still very much there, and you can feel it as physically and acutely as this.

*I still go to bed each night hugging Joshua's teddy, wrapped in his blanket, as this gives me some degree of comfort.
*I still need to be surrounded by his photos everywhere.
*I still need the time and space to think of him and have some time with him, even if this is only half an hour a day, it is his time and it is good to know that I can have this" time out" with him and my thoughts.
*I still get stressed and panic when my days become to crowded, when they crowd out these times and thoughts of him.
*I still look at my family and imagine him there the whole time, frustrated that my family will now never be complete, there will always now be one person missing.
*I still feel the need to stay up so late the nights I am on my own, and wander around, unable to sleep.
*I still feel that I cannot sit down and watch the TV for long as it all seems so utterly pointless and meaningless.
*I still feel no pleasure or enjoyment out of eating or relaxing, I feel guilty that I am enjoying myself whilst Joshua died.
*I still feel I want to scream inside with all the pain I feel some days.
I still feel so much!

On the positive side there are days when these things are very much less than this, and I just feel drained and tired of feeling so much the other days! I think I cried so much last week that I was more exhausted this week. It is hard to organise myself with life so busy, I am still late, forget things and get the wrong times for everything.

One encounter that I could have done without came on Tuesday when I had to take Bella to the Doctors surgery. To my utter horror as we arrived so did a whole lot of mothers with new babies who filled the waiting room with chatter about their beautiful offspring and birth stories, as they proudly bounced them on their knees. I realised that it was the baby clinic morning as well. We had to wait for 45 mins, the very longest in my life! It was really awful, and worse still the radio seemed to play all the songs that at the moment upset me the most. By the time we saw the Dr I was virtually unable to speak and just wanted to get out as fast as I could. Needless to say I am put off ever going there again!

As the children have been sick this week I have tried to get on around them, and sorted out things left over from the summer when I was too pregnant to do so much. I seemed to stumble on things that upset me at every turn, whether it was a photo or a memento of something we did, each reminded me of a time when Joshua was safe inside me, protected and still with hope, and churned me up again. In the end I stopped and decided to face it later on.

On Wednesday we went back to our local hospital to see Dr Cameron, one of the Paediatric doctors who looked after Joshua after he was born. The appointment went as well as it could and at least we were able to have time to just express any concerns we had. Dr Cameron gave us over an hour of his valuable time which we really appreciate, but it was terribly upsetting to go back and have to talk about Joshua and all that was wrong with him in so much detail. I would advise people to do this if they feel they can because at least it gave us a much fuller picture of his hours after his birth. Dr Cameron said that Joshua came out in such a good state and looking so well that had he not been diagnosed antenatally they would have not initially thought that anything was wrong with him. Now there is a scary thought! Although it is upsetting to look at his photos because outwardly he looks such a fine healthy chubby baby, I am glad that he looks so good as it is easier to show people his photos and they are not "put off" by his appearance, this for me would have been yet another stress. Again we are just so thankful, that we received such care and understanding from all Joshua's Consultants. The personal touch is so important and so valued when you are thrown into this new strange world where there is already so much stress to cope with.

After our appointment Simon had to go to work, as Jonathan was in Nursery I took the opportunity to go to a couple of local garden centres where I found some lovely out door Christmas decorations to put around Joshua's stone (whenever we get this. but that's another story!) The children keep asking to do this and also want to buy him some presents so I managed to find some lovely chimes and ornaments to wrap up that can go in his little garden as well. Although it was so sad to buy Christmas presents for my babies grave, it was comforting to feel at least I was buying him something!

I am seriously dreading Christmas now. I was meant to buy some presents as well yesterday but it all seemed so utterly meaningless after our appointment. Then I dread after Christmas, when last year I discovered I was pregnant, I was so happy that there would be a short gap between Jono and the new baby and so pleased the baby was due near my birthday as well. Now I have to go through the whole "this time last year I.....' there are so many key moments to live through , but there is just no way it can be avoided, I only hope that, as people tell me, it will get better when you have done it all once. I am sure that the first time is always the worst and the most painful.

As November wears on, life has become just too busy again, and I am not even at work! I find it endlessly hard to get the right mix, if I stand still and take time out I feel guilty that there will be so much for Simon to do at the weekend, if I rush around doing everything I don't seem to achieve very much and feel stressed I am not giving myself enough time to come to terms with everything. I hope over the next few weeks I will find some balance with all of this...watch this space!

Saturday 8th November 2003
This week has been far harder than I had ever expected. In fact it has been the worst week emotionally wise since Joshua died. Perhaps this was due to a combination of factors such as the children and Simon going back to work/school after a weeks holidays and also that I had two important hospital appointments later in the week to face. I don't really know!

On Monday I had to go and get Joshua's hand and footprints photocopied for the stone masons to see if they could engrave these on his stone. It was excruciating handing them over to the two young girls for a copy. I could feel my ears burn as I left the shop in haste. I did not enjoy having to discuss all the details for Joshua's stone as well, although this is necessary as I want it to be absolutely right, the only lasting gift we will have given him, but I still go into their shop feeling that I shouldn't be doing this, it feels so surreal, I am discussing my sons grave stone! No surely this is all a dream! That's how I feel each time.
Not only did I have three of the blackest days I have known but several of my children decided to have them too, and worse still take it out on me! It got to Tuesday and I could bear it no longer. I phoned Little Hearts Matter (the new name for Left Heart Matters) and spoke to the counsellor there! She was wonderful and listened! and has sent me there draft copy for a grief booklet they are producing. I stayed up all night to read this, what a joy it was! nearly every page I felt I was saying,
yes, I feel just like that ,and laughing because all the quirky things I have done, or are still doing, others have done before me. I realised I am not going mad, am not some manic depressive, I am just working through the normal stages of loosing a child, and in fact I was encouraged that actually I am not doing as badly as I thought! The booklet also made me feel that I have the right to feel the way I do! This gave me for the first time some confidence.

The week progressed with finding that each of my appointments had been cancelled. Although I appreciate this couldn't be helped it was extremely stressful, not only to build yourself up for these, but then to have to deal with Gestapo like secretaries who wanted to know why you were seeing these consultants. I actually became quite blunt and bolshy at one point when I had had enough!

Thankfully we were still able to see one of the consultants on Friday. This was at the local hospital, with Dr Klahzinga who had seen me throughout my pregnancy. He was truly wonderful and was very easy to talk to, and he really did help take the stress away from all those awful antenatal visits. He did feel there was some justification in my concerns that I don't carry boys well, for a number of factors and has booked us in to see the clinical geneticist to have further tests, so I am pleased at this. At best they will find nothing, at worst confirm there maybe a problem. At least he feels I am fit and well.

Towards the end of the week my mood did begin to lift and feel brighter and I enjoyed the relative respite from just how grief stricken I had been feeling. I don't think I have ever cried so much or quite so constantly before, nor in so many public places! I met someone this week who had been pregnant with me, but she did not know that Joshua had died, so I had to tell her through my tears as she cradled her new born son in a baby sling. I felt ghastly because the pain of seeing her baby alive and loved, hurt so badly, then I felt so guilty that I felt this way, as I have had the joy and privilege of carrying so many of my own babies in this way as well. I struggle still with feeling I have the right to grieve when I have so many remaining children, I almost feel greedy for wanting to still have Joshua as well.

The last dilemma to hit this week was the job application! A part time job has arisen in the school I was in last year. Although it is only three days a week I am unsure whether I will be strong enough to cope with teaching, planning, marking, disciplining, as well as organising my own children around a work schedule again. Perhaps if Simon worked nearer this would not be so daunting. So this is the next hurdle I cross I guess.

I am still greatly blessed by all of you who keep in touch. Your thoughts and expressions of love and kindness continue to fill me with hope and wipe out at least for a little while some of the pain and anguish that I feel. Someone once told me that they were praying that within each day I had some bright spots and I can honestly say that in each day I do. Whether that is a message, hug from one of the kids, a lovely sunny day, or something else, there is always some light, on even the darkest of days, for that, I am grateful!

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