~Fiona's Journey~

~OCTOBER 2003~

Thursday 2nd October 2003
It is exactly a week since we said our final farewell to Joshua. It is two weeks tomorrow since he died and two and a half weeks since he was born, such a very short time, and yet it seems like an eternity to us still.

People still come up to me and ask if I have had the baby, it is so very hard to answer! I just want to run away and hide in the security of our home.

Most of the emails and cards have stopped now, the children are all back in school and their clubs and activities and Simon, reluctantly went back to work today. Although normality is good, We both find it hard as you feel you are moving on and forgetting Joshua. Of course we are not, but there is a sense of guilt there as well. The other half of me can relate to Miss Haversham in Great Expectations, as I have the strong desire to lock myself away with my photos and my memories! Not terribly healthy, so a good job seven kids force me out!

Having never been through the grief process with a baby before, I am thrown into a unknown world, and anyone who knows me, will know how much I detest not being prepared. One minute I feel like I am actually coping okay, the next I am a weepy wreck. It is usually at the most embarrassing moments as well. However I do recommend the grief diet, easiest one I have ever been on, the weight just falls off!!!!

The children are doing well. They all have their moments and obviously all cope in very different ways. They all have the strong urge to make memories of Joshua, so thankfully with half term only three weeks away, we will set about to do this then. Hopefully we will have Joshua's stone as well so we can plant around this and have somewhere to remember him. Two sets of friends came over last week with the beautiful pine children's' bench engraved with animals and a plaque to Joshua. They told the kids they could sit on this and read him stories, it was such a special gift.

So there we are, I am still making up his baby book, photo albums, pictures and memory box, I guess when this is all done I may well consider going back to work, we will see.

Thank you all for your continued support. You know who you are, and I really appreciate all the kindness you continue to show!
Fiona

10th October 2003
It is now three weeks exactly since my darling boy died in my arms. I wonder when I will stop going over every minute of every special day in my mind! At first I thought this wasn't very good, but now I feel it is a fairly natural process. If I had him with me, I would go over his birth and first few weeks and constantly gaze at him, as I have my other babies, so just because he died, why should it be any different. I only got three and a half days so that is all I have to remember him by, I don't have him here to gaze at so I don't feel bad surrounding myself , my house, car etc....with photos! I wonder sometimes why I am so bothered what others think. I have to just do this my way to survive and come through this in some sane state!!!!

Over the past week or so the shock and numbness has well and truly worn off and has been replaced with a raw and painful grief. It really hurts!!! In fact some days I feel if someone stuck a knife in me and turned it around it couldn't hurt as much. Their are so very many things that hurt and make me feel so sad. To watch the children all cry at different points, to hear them pray each night that Joshua has had a good day in heaven, to watch Jono play and feel there should be another little person there, watching a new mum hug her precious baby close to her, to walk down the children's clothing isles and avoid all the baby boy stuff I had imagined buying, to just feel my arms are so empty the whole time.....and so I could go on and on.

Grief is full of paradoxes! You want everyone to ask about Joshua, yet you want to speak to no-one, you are glad that everything is back to normal, yet you hate normality for it represents everyone moving on and feeling we are forgetting him, you want to enjoy things, yet when you find yourself doing so you feel so guilty! I still haven't worked out how I move on and take some pleasure out of life without feeling I am forgetting Joshua. I am sure that will just come naturally in time.

For me I don't want any answers, I don't spend my time questioning God, or why things happened, I have always felt that for some reason they just did. Why should I be spared life's pain??? I do however spend much time trying to find out all I can about Joshua's combined conditions. I have the desperate need to understand as much as I can, (given I was really bad at Biology this is no mean feat!) Simon thinks I am paranoid, but I feel there were perhaps other things wrong with Joshua as well, so I have booked to see the lovely Dr Gladman in a few weeks to talk through all that Joshua had. It means having to go back to Alder Hey, not something I am looking forward too as it is just so painful, but it's only a building....I keep telling myself!

I also have appointments with my Consultant who looks after me throughout my pregnancy and also the Cardiologist at Glan Clwyd where Joshua was born. Then I have covered everyone who can possibly give me answers. I guess I just want to put too rest the niggle that I could have done more in some way, or that his condition was in some way my fault! Guilt is a terrible thing !

Simon is back too work now , as before. It seems so tough on men that they have to go back so soon, they grieve as well, but are expected to just get on with things. I am grateful that he works in a supportive environment as I am sure that has helped him return. I find it very hard the nights he is away and miss him a lot. I try to keep myself busy, but I find it difficult to motivate myself at the moment to do very much.

So there we are. Another week over, spent going about my daily tasks in tears most for the time! At least I am getting things done as well! The children had a day off school last week, the day that Joshua died, so to remember we went to the the beach and picked large flat pebbles and took them home and painted and glazed messages to him on them. They are a lovely memory of the kids love for him and stand outside with his bench and tree until his stone is ready. I have also managed to find a suitable memory box for his things and paint and fill this, the children love to look through this. I continue to walk with Jono in the mountains and along the beaches where I feel so close to God and Joshua, the only places that give me both the solitude I crave for and the comfort I need.

I am to be so very grateful to those of you who email me, text me and continue to write, and take me out! every message, kind thought and prayer really helps me so much. Also, very special thanks to Simon and my lovely kids who remind me of all I have and not to waste a moment of time, my wonderful midwife Ann who continues to visit in her free time and be wept over!!, Marion, who protects me by picking up my kids and standing with me as I face the parents at school each day! and Christine, one of the most special friends anyone could have, you truly bless me!

Thursday 16th October 2003.
Date wise it is now exactly a month since Joshua was born! Only a month! It seems so far away now. The fear of moving on each week still bothers me, the further we move on in time, the more I feel I am leaving Joshua behind. I want to hold onto time, to somehow slow it all down, to give me time to get used to all of this! Because I cannot do this, I find that I go at a much slower pace, it is rather like living life in slow motion. Life has to go on, I see this all around me, but I view it more from a bystanders point of view, rather from in the mist of all the activity. I don't really feel part of it, and neither at the moment have I any desire to, I am still happy in my own little bubble, the one that is finely balanced, yet controlled totally by me!

I thought that I was doing okay behind my very thin veneer, but an unfortunate event last weekend showed just how fine this all really is, something disturbed it all and I totally lost it, worse still in front of all my kids. As if I need more guilt to heap onto the increasing pile! However I am now more aware than ever that I have to be very careful of what I take on at present. Going back to teaching just yet, I feel is not an option! To be incarcerated in a room with 30 boisterous teenagers would defiantly upset my equilibrium!

I have found more peace within this strange world of grief this week. That is not to say my grief has lessened, just that I have stopped feeling bad about feeling bad! I have finally realised that I absolutely must do things the way I need to, and not how others determine that I should. I need to do things in my own way and in my own time. If people think I am weird or not coping then that is up to them. At least, this way the kids are fed. packed lunches are made, clothes are washed and we get to school on time! This in itself is about all I can manage at the moment.

Because I am having to get back into the children's routines I am meeting more people, most of whom knew I was pregnant (well I was so huge!) and yet have not heard about Joshua. There are only so many times in a day you can explain, before wanting to run home and hide in the security of your room!

By Tuesday I had reached this well and truly! So on Wednesday I took Jono up into the mountains and we had a lovely walk and picked some conkers. The sun shinning in that lovely autumn brightness and the skies were blue. As Jono chased around the park, the conkers falling all around him, I could not fail to laugh, my first real laugh in a month! I felt I was there with my two boys, one running around, one with us in spirit, smiling as well. I do feel that Joshua is with us in some strange way. Maybe it is because I want him here so much, maybe it is something quite different, I don't know, but whatever it is, I find it very comforting, so that is really all that matters.

I have plucked up the courage to read a few books this week about how to cope when your baby dies, or about death in general. These I have found quite encouraging in the respect that they give me permission to grieve, in my own time and way. In the book 'A Severe Mercy' that over the years I have read many times, Sheldon Vanauken, reflecting over the death of his wife writes that" Grief is also a form of love. the longing for the dear face, a warm hand. While it lasts, grief is a shield against the void" (p.182) I can relate to this! The need to withdraw, to protect yourself, you are so exposed, everyone knows what has happened, you want to build a wall around yourself and your heart to stop this sort of pain ever happening again.

I know in time all these sort of feelings will diminish, it is just reassuring to know that I am normal, what I feel is normal and it is okay to feel like this.
So a rather more reflective week. Next week is another of the "firsts" after Joshua's death. It is the first of the children's birthdays, Susie. She has been planning and plotting her "Pop Stars Party" now for months. I have so very little enthusiasm, we had always imagined (well until Joshua's diagnosis that is) what fun it would be to have him here with us, in his bouncy chair, she was so looking forward to being the big sister and showing him off. I am sure that somehow I will get through it, with some degree of enthusiasm, although I still find it hard to let go, afraid that if I enjoy myself I am in someway forgetting Joshua.

Again, many thanks for all your encouraging emails and messages that keep me going. This site was created by Deb Rennie, not by me! So she deserves so much of the praise for the way it is put together and updated. Without her, I, and many others would have been without so much vital information, as her site 'Hearts of Hope" really does help and support so many of us faced with this prognosis. Through her pages I have met some marvellous and courageous families, and when I am pacing around in the wee small hours here, at least I can email all my Aussie and American friends who are up and about and always ready to support me! You are all great and such a joy to me!

Until next week, I will leave you with this , even in our darkest hour, as Deb kept on telling me we still can have HOPE! Fiona X

With Hope
By Steve Curtis Chapman
This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of loosing you, but

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end
And we can grieve with with hope
'Cause we believe with hope
There's a place by God's grace
There's a place where we'll see your face again.

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now your home
And now your free, and

We can have this hope as an anchor
'Cause we believe that everything
God promised us is true, so

We wait with hope
And we ache with hope
We hold onto hope
We let go with hope.

Thursday 23rd October 2003.

Although I cannot honestly say that things are getting any easier yet, I feel that in my own mind I am getting different issues sorted out which is good, kind of clearing the trees to see the wood!

I have thought a lot this week about all my friendships, as I have been blessed with two very special letters that really touched me, and the most beautiful cross stitch with a verse, a teddy and Joshua's dates of birth and death.

I do not write to condemn anyone, as I am quite sure in the past I have been guilty of this myself on many an occasion, more to help those of you who maybe reading this and don't know what to say or do to help someone who is grieving.

When I found out Joshua's diagnosis we wrote or told most of our family and friends straight away. I was touched by those that contacted us, offered their support, emailed or wrote, and slightly puzzled and hurt by a few close friends who remained silent. As the months wore on, I was fortunate to have people around me every step of the way, yet again surprised by others silences. Now, after Joshua has gone, I am truly blessed by those who have remained in constant touch, and have learnt perhaps over these months to appreciate more the fact that people come and go throughout our lives. Not everyone stays for the course, but perhaps come in at the points we need their individual input the most. I am now learning in a new way, instead of being hurt by their silences to let go, and to look back and enjoy what that particular relationship meant to me at the time. As I have experienced this, new people have walked into my life, and old relationships have been rekindled again. These people have more than made up for the losses along the way, and have helped me to have a more positive and balanced view on the whole process. Grief, perhaps does have a way of sorting out friendships!

I feel perhaps, I should write a short leaflet about 'What not to say to someone who has lost a baby!" Firstly, don't ignore me! That makes me feel even more compounded in my grief and loneliness than before. Don't try to find something that you think may help, 'Sorry" will suffice, with a compassionate smile!
Secondly, don't ask if I am okay now! or if I have got over it. This makes me feel like I have just recovered from a bad dose of the flu! Of course I am not okay! I have just lost my baby, I won't ever fully get over this, more I will learn to live with my grief and it will slowly fade into sweet memories. You may desperately want me to be okay, but by saying this I feel a failure for not living up to your expectations.

Thirdly, don't try to fill my time, I need space to do things the way I need to. Ask me if I want to do things but don't force your own agendas on me. By filling up my time, I won't get over things I will merely delay my grieving with activity. Be there for me, in whatever way I need. For some this may mean something very different, for me I have found such comfort in peoples letters, emails, texts and cards, that truly brighten the bleakest of moments, yet don't invade my privacy too much. I very much choose who I want to spend time with at the moment, there are very few I feel really comfortable with, and one I particularly talk to and confide in. Her friendship, outside my families support has been so special and precious over this period, mainly because she lets me be myself and gives me time and space to grieve. She is not embarrassed by my tears and is secure enough in herself to cry with me as well. Her strength and love have helped me so much.

These are just a few of the things I have found out along the way, I know others I have spoken too feel the same way too, so I hope this helps.
Another fun filled week of those cringey experiences that catch you completely off guard! For example I had to return some Uni books I had forgotten I still had. When I got there they asked the reason for my late return and I fumbled out that I had been in Hospital. When they asked why so the could waive my fees I burst out in tears that my baby had died, would you believe they then asked if I could provide evidence! I have had to photocopy Joshua's death certificate and send this. For some odd reason I feel cross that my privacy has been invaded and I have had to send something so personal that others will look at and discuss.
Half term is now approaching for the children. Again for me it is another bitter sweet time, as I had always imagined that we would have Joshua home from the hospital by now, it had been one of my goals, something to reach for. Although I always knew he could die, I never really expected it to happen to us, I think if I had then there would have been little point in making the choices I did. So there is still the element of now being left to walk through a very different week from the one we had planned. You have to consciously keep your mind from dwelling on these things, the "what if's" and "the maybes" that would send you completely round the bend, some days this is quite a battle, others are far easier, there is no pattern!

The younger children find it easier to imagine Joshua in Heaven, growing up there. They pray each night that Joshua had a good day in Heaven and discuss what he might have done. They ask what he would be doing now developmentally and imagine him doing this with his angel friends. I have encouraged this, as for them it seems to ease the pain of his parting. They also write him letters and drawings and give him objects, so much so that I have bought another box for them to put it all in. Each letter and note are so bitter sweet as they represent such love for their brother, yet for me such sorrow that the relationship will never be as it should have been.

I still struggle with moving on. As I was scanning through all our digital pictures on the computer I whizzed through them and realised that Joshua's life had been and gone in a flash on my screen, that out of thousands of photos of the children, he represented such a brief space. Although he will always be such a big part of me, of who I now am, of our family forever, his physical life here with us was so little it really struck me, and again, of course hurt!

I think I am frustrated because this is all taking so long to work through, my natural response would be to get it over and deal with it, but grief is not like that, as I am learning fast. It is a journey, as my diary of thoughts says, one that I am sure will be long and strange, one that I never imagined I would take, or in fact ever wished to take, but as with all journeys, along the road their are new experiences to be learnt, new friends to meet, and we change as we encounter these. There are really bumpy bits, bad days where it rains all the time, and good days where the sun does shine. Sometimes it feels like you are on the journey very much on your own and sometimes others join in for a bit of the ride and gain as well from the experience they share with you. It is not complete, so thanks for bearing with me as I discover it bit by bit.
Fiona.

This is the box I painted for the kids letters and gifts to Joshua

Thursday 30th October 2003
It is now cold and dark and wet here! Yuck. This rather sums up my mood at the moment I guess, I knew that half term would be tough. Don't get me wrong, it is lovely to have the children off school, just hard to pretend to be okay the whole time. I get to the end of the day and all my grief spills over in a big heap because it has been repressed for so long.

Christmas! It's everywhere already! All the decorations are hung from the shops in town and the insides are full of aisles of singing Santa's, bright happy decorations, and I hate it all!!!!! Everyone seems excited and I feel dreadful still. If I see another "Baby's first Christmas " card I will scream! and then all the lovely little baby Santa outfits. However much I try to avoid it all it seems impossible to do so, and yet again, it feels as if the knife stuck in my heart is being twisted a little more and a little deeper again.

There are still so many things that seem to hurt. I was walking out of a supermarket the other day and it struck me that the last time I had shopped there was about a week before Joshua was born, when he was bouncing around safe inside, and again I got that dreadful pang of pain within. As I was standing by the till waiting to pay, two ladies were comparing their new babies, I so wanted to join in, to say "I had a baby too, he was so sweet, do you want to see my photos?" but of course I didn't, instead I swallowed another cup of grief, packed my shopping and left.

It is only six weeks since he was born, I despise the fact that because I don't have Joshua, everyone assumes I am back to normal again. I still want to talk about him all the time, desperate for people to still acknowledge that I had a baby, that he counted, he was real, and yet now so few people do. That is almost as hard as coming to terms with his death, pretending all the time that I am okay, coming home, shutting the door on the world, and having the freedom to finally be myself whatever that happens to be.

This week I plucked up the courage to go to the hairdressers! I hadn't been since Joshua was born, mainly because to have to sit anywhere with no escape route for two hours was inconceivable, yet my greys hairs were now at desperate point for dying, so off I went. Although we had phoned them and explained what had happened ,they had not told the apprentice, who, in front of the whole, filled shop sais 'Hi Fiona, How's the baby?". Of course when I told her she wanted to die! Her and me both!!!! Actually they were all really sweet and wanted to look at my photos! At last!! Some one does!!! and at least my hair looks a lot better as well!
Simon bought me a beautiful ring this week to remember Joshua in some tangible way. I have been looking for a while and we found a lovely one in yellow and rose gold with a tree of life branch entwined around it. It has very special Welsh gold in it as well. I am having 'Joshua Cariad" inscribed inside. Cariad means 'Beloved/Darling/sweetheart' in Welsh .I will never take it off!!!

Next week we have appointments on Thursday with the Heart Consultant from Alder Hey and then with the Doctor who looked after me throughout my pregnancy on Friday at the local hospital, so I will write my updates after I have been to these. I am looking forward to going now, if only to have the opportunity to talk about Joshua to someone!!! I do want to know all there is to know about what he had and all that went on whilst we were at the hospital, as at the time it is all a bit of a blur really.

Until then, I continue to pray for my friends, one of whom is having her HLHS baby this week and the other whose four month old HLHS baby is having his second operation tomorrow. There are many of us on this difficult path, at many different stages. I am thankful to all of those who have supported and encouraged me.

These are two special gifts sent to me by friends.

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