Today didn't go to plan. The pier is closed for repairs so we can't scatter Jamie's ashes there. I should feel really disappointed because I am ready to do it but I don't, it just wasn't the right time. I'll find out when the pier might open and take it from there. So Jamie's ashes are back home with us for a while longer. I hugged them all night but now his urn can go back into our bedroom and I get to hug them again before we scatter them at some point in the future. I realise that sounds crazy but trust me I'm not. I still feel ready to set Jamie's ashes free so atleast we're not holding onto them because we are too scared to let them go.

Jamie's ashes

Jamie's ashes are in a tiny urn inside a sunflower vase. The first night we bought them home I cuddled them all night - and I did that on a few other nights as well - or they sat next to my bed. I couldn't take the urn out of its little box because the sight of the small urn upset me but a week or so ago I took the urn out of its box and looking at it didnt make me cry.

Tomorrow morning at sunrise we plan on going to the end of the pier in Tynemouth to scatter Jamie's ashes. It feels right to do it now. I had thought I would hold onto Jamie's ashes for a while longer because it is him and I wanted him in his house with his family but I've reached a point now where I can accept that its not really him, he has gone but he will be in our memories and in our hearts forever. I needed to have his ashes at home but I don't think I can start to get better until we have scattered his ashes and I think Alice might need to do it as well.

We never bought Jamie home, when he was alive or after he had died, so it gave me a sense of peace to bring his ashes home but we need to set his ashes free now.

this week, i feel stronger

Last week was bad - I think I cried all day everyday for several days, I missed my little boy so much, I felt so angry, so pissed off that I wasn't allowed to keep him. I felt like I was losing my mind. I definitely wasn't suicidal but I could really see how someone could just walk off a cliff or throw themselves from somewhere just to end the pain of grief. I could also see how someone could just disappear, drive away or jump on a train to anywhere to try to run away from the grief.

For the last couple of weeks I have felt like I needed to be on my own to allow the grief to happen, rather than trying to hide the truw grief from my girls, who would probably be scared at mummy losing the plot. By the end of last week I couldn't do it any longer so gary took the girls out for the day and I cried hysterically and screamed all day. I shouted, I punched the bed. By the end of the day I was exhausted, my head was pounding and my eyes were sore but I felt much better and I've felt much calmer ever since. I haven't cried for a few days now and I don't feel like I'm screaming in my head. I still feel lost, I still want my boy, I still feel sad but I don't feel like I'm going mad anymore. My eyes fill up with tears when I talk about Jamie but I don't currently have a need to scream. I can accept that he is gone, that he was so poorly but he tried his hardest to stay with us and I can accept that baby's die everyday and there are alot of parents going through the same thing. And i think I can see a future where I am not as emotional and sensitive as I am now, where I can get off the emotional rollercoaster I am on now, where I will be happy more than I am sad. That won't be for a while and I have to give myself time but I will get there, I'm sure of it.

Thank you for donations to the heart unit

The Children's Heart Unit Fund at The Freeman have written to us to say thanks to everyone for donating money in tribute to Jamie - so far they have received £651.
The charity are currently buying much needed equipment for the intensive care unit Jamie was in, so it will go to good use and help to save the lives of other babies.
Thank you so much, it means a lot to us that jamie has touched so many lives.

and then it all went down hill

i feel so so so so so so so sad. all i want to do is cry, i miss my little boy so much and i want him here with me. Last night i felt so lost sitting on the couch with gary, i should have been holding my baby, feeding him but my arms were empty and they ached so much. i went to see my girls who were asleep in bed and I held them to make the ache go away.
why was he taken away from me, i want him back

taking small steps

Today I met Jane's new baby - Joe. I was very nervous about doing it and last week I kept saying to Gary that I didn't think I could do it but I am so glad I did. I had a good cry last night, I wrote a letter to Jamie and I spent some time thinking about him, my time with him and my feelings of loss which I really needed to do as I haven't had time with looking after the girls all week.

Jamie would have been 5 weeks old today and Joe is 3 weeks older than Jamie. I had thought I wouldn't want to hold Joe, as Jamie was last new baby I held in my arms, I thought seeing Joe would be too painful and make me realise what I was missing, I thought I would want to leave the room crying but I didn't. I did cry when I saw him and I hugged Jane but I think much of that emotion was because we hadn't seen each other since our boys were born and, as very old friends, we needed a hug and a release of some of that emotion. But I felt very calm with Joe, I didn't feel upset at him being there in my house, he isn't Jamie. Jane is one of my closest and oldest friends and it is so important to me to be able to celebrate and love her children. I'm sure, at times, as Joe gets bigger I will be reminded of what I lost when Jamie died but I can't stop that from getting to know him and loving him the same as I do his big sister Maisie.
When we went to the park, I had the urge for a cuddle and I held Joe for a while and it wasn't strange. I did fleetingly think I should be doing this with Jamie but then I looked at him and it was gone because he's Joe not Jamie.

I've had an exhausting week with my lovely girls - we haven't stopped. We've been to the beach, to Blyth park, to Morpeth park and yesterday we stayed in for most of the day but we made cakes and our own playdough and we played together all day.

I have been very happy today out with friends and their kids, although I have still cried a couple of times. It is a very strange experience to suddenly realise that my face is wet with tears, I've never experienced the body's need to express emotion like that, completely out of my control.

I have done quite a bit of crying and sobbing this week, just filled with so much sadness. I heard alice playing yesterday, she was playing a game where she stole a baby to make her mummy happy again. which just made me sob and made me realise that I need to really focus on my girls and make them feel important.

I feel very isolated and very confused by my emotions. So happy that I have my children and husband, who make my life worth living but vulnerable that I may lose them too. I feel stuck, only able to focus on the right now, which is probably a good thing but I can't think about work because my work is childbirth and newborn babies and I can't do that again yet, I feel like I can't plan things because I'm just not ready to move on and get on with my life just yet. But this makes me envious of friends whose lives are just continuing as normal, they are making their plans, they are celebrating their new babies, their weddings, their promotions, enjoying a social life and I am stuck in a place that I feel I can't move on from. In time I know I will get on with life, make plans, start going out again, start work again but, for now, I feel stuck because I have to experience this grief, this loss, I have to come to terms with my emotions. I accept that it is a journey I need to go on, and I guess that is a positive thing because if I denied it and tried to get on with life as normal I would crash at some point. For now I am taking each day at a time - some days I feel happy and able to cope and other days I can't stop crying, I feel like I'm losing my mind and all I think about it Jamie as I knew him and as what he might have been - a little boy on the beach, a big boy on his bike and a teenager. And that's what hurts because I wanted a child, an addition to my family, I didn't just yearn for a baby.

My experience of losing Jamie has really made me appreciate how people can become desperate and bitter because it is such an isolating experience because grief is so unique - even though me and gary have experienced Jamie's loss together, we are grieving differently. I can really see how someone can be desperate enough to take a child because all sense and reason goes out the window and if someone has experienced loss and perhaps wasn't a balanced person anyway, it really could send them over the edge. This week a local girl was killed and she had a 2month old baby boy and when I heard the news story - for a couple of seconds I thought well give the baby to me, I'll give him a good home. Absolute madness of course. But I wouldn't want another baby because it wouldn't be Jamie, it's him that I miss and think about.
I've thought about the possibility of getting pregnant again but, again, that is just madness. I couldn't do it again. I couldn't cope with all the worry, the tests, and if I lost another baby I couldn't cope and what would that do to the girls and to me and gary?
I need to focus on the future and what I have with Gary and the girls. Before Jamie I think I was stuck for a couple of years where I wasn't making any plans because I so wanted a third child and I couldn't really move on from that. So when I feel better, when I feel stronger we will make plans for the future and I will move on. I have to accept that I won't have another baby in my family and I think that's ok because I can't have Jamie back. I'll do what I always planned to do with my kids, and have an open house to their friends. I always wanted my kids and their friends to feel at home in my home because I didn't have that as a kid, I was always on my own. I think that is why I have always wanted three children, to feel like I have a big family because I grew up as an only child and that was such an isolating and depressing experience especially as we lived in the middle of nowhere.

But I have two lively, active, challenging and creative children who I can focus on and I feel so blessed for that. They may be barmy children, who send me mad most days but they are my barmy children and I love them, they are my future.

On the outside, do I look like I am in pain, like my heart is broken, like I feel as if I can never be healed? Do I look like I have just had a baby, do I look like I have just lost my baby?

I feel lost, I need to grieve, I need to cry, I need to scream and shout, I need to punch a pillow but I'm looking after my girls which is a distraction and a delight but its also frustrating because I feel like I can't grieve, although my tears always find a silent way out. I felt panicky again today about taking the girls out on my own but I did it and we were out for nearly 5 hours which I think is pretty good when today was not a good day for me, I felt panicky and emotional and I have cried quite a few times.
I got irritated with the girls today which I really don't want to do but I get so cross when they are being pesty and they are not satisfied with what they have and what they are doing because Jamie won't ever have his life and he won't have the chance to experience anything. His life was so short. I know thw girls are just being normal, just being themselves and its not their fault but I can't help feeling this way. I think I'm just tired and very very sad, hopefully tomorrow will be better.

Grief

I've been reading alot about grief and reading other parents stories. I have a long way to go but, having read other accounts by parents, I feel very lucky that we did the things we did with Jamie, that we have supportive and caring staff who encouraged us to be with Jamie when he was alive and after he had died, staff who were open and honest with us and staff who did their absolute best to save our baby. Some parents have horrific stories of never seeing their babies alive, of never being encouraged to spend time with them after they had died, some were never kept informed of how ill their baby was and so didn't spend precious time with them before they died. Our situation has definitely been helped by the support of the hospital staff, during pregnancy and in the ICU at both the RVI and the Freeman as well as by the support of the people around us.

We know we are on a long journey and Jamie will always be in our hearts and some days we will miss him more than we can bear.

I can't really describe how I am able to feel both happy and sad at the same time. I am happy that I have my two beautiful, crazy, amazing girls and my gorgeous, funny, supportive husband without whom I would not be able to cope but I am also happy that I made and met my boy as well, despite all the anxiety and pain I have no regrets at all, how could I regret meeting a little boy so goegeous and special that was made with so much love.

But I feel so much sadness that the baby we longed for was too poorly to live, that we won't be able to watch him grow, that he won't be a part of our lives except in our memories and our dreams.

When I am stronger, when the pain I feel starts to ease, I am determined to make changes in my life, to make the most of it and use my energy to have a happy and fulfilled life. My experience with Jamie has showed me that life can change in an instant, we can lose the people most precious to us and we are not in control. So I want to enjoy life and make the most of it. I've never been a victim or shied away things but I've coasted along a little bit since having the kids. But when I'm ready I want to put some energy back into my business, to work towards having some financial security for my family, I'd like to fundraise for the Children's Heart Unit Fund, I want to spend some quality time with my husband, I want to enjoy food and not have a problem with my eating and I don't want to feel guilty for not doing the 'right'thing with the girls - I have happy girls who we spend a great deal of time with and will continue to do so.
I was pretty happy with life before I had Jamie but life is too precious and short to worry over the little things so I'd like to focus on the things that matter.

Up and down

Last Thursday I lost Lucy in Wilkinsons. One second she was there, the next I couldn't find her anywhere. The rest is a blur until she was found - I completely lost the plot, there were lots of tears and I was rooted to the spot, holding onto Alice, who was also crying. Two members of staff went to look for her and found her by the exit!!!!!! All I could think was I've already lost one child I can't lose another.
It was scary to lose Lucy and the relief when I had her back in my arms is indescribable but afterwards I was terrified because I'd completely lost it. It left me feeling very panicky, vulnerable and close to the edge. I now feel like I can't go out with the girls without someone being with us.
On Friday I still felt panicky, especially as I knew I had to take the girls out for the day but I forced myself to plan a day out and I am so glad I did. We headed to Wallington with Em and the girls and we were out for about 7 hours. The kid had a great time with lots of fun and adventure. I was very relaxed by the end of the day but I know I couldn't have enjoyed it if I had been on my own with the girls.
On Saturday me and Gary took the girls to Redcar, another 7 hour day out with loads of fun. I had a good cry in the morning, thinking about my boy but then it was time to save that for later and go out with my girls.
On Saturday I felt happy. For the first time in the last few weeks and months I was able to think about the future, I haven't allowed myself to do that since the scan at 20 weeks showed a potential problem. I know I'll b able to teach again at some point, I know I'll b able to help parents with complicated pregnancies, as well as parents with poorly babies and those who suffer loss. I was thinking about how I want to put my energy into my family, to spend some quality time with Gary and the girls, to stop just drifting along and to do the things we want to do.
And I forgot about Jamie. I'm so used to thinking about him almost every second and on Saturday I forgot about him. And then his beautiful little face flashed into my thoughts and I was overcome by an uncontrollable guilt with more tears and sadness and a pain that felt like my chest was tearing apart.
Yesterday was a bad day, I couldn't focus on anything and I spent most of it in tears. I took Alice out in the morning to the beach but I just couldn't snap out of it and I kept crying. And that's what I was like for the rest of the day. All I could think about was Jamie and how I wanted to stroke his head again, feel his soft curls and look into his eyes and tell him that I love him.

Trying to stop negative thoughts

I'm not a negative person, I always try to find the positive in everything. Even with the death of Jamie, I have been able to focus on all the positives and that has been what has helped me keep going, to get up in the morning, to not crumble in a screaming wreck.

But I've been thinking about some of the things I wish I'd done with Jamie. Jamie's 3 days were not normal - I didn't get to hold him, I couldn't feed him, I didn't change his nappy because he didn't do any poos and he had a catheter for his wee - but I accept that this was normal for a poorly baby but I wish I had asked to hold him before he had his stomach surgery on the day he was born. I was in shock after giving birth and going to theatre to have my placenta removed, I was in shock that Jamie was being operated on so soon and I was trying to keep detached from my baby because he had been taken away from me seconds after he was born and if I really thought about that I would have lost the plot and it would have been too much for me to cope with. And I didn't know realise that after his stomach surgery, he was going to attached to so many tubes making it impossible to pick him up. And I don't know what his bum looked like. That sounds really stupid but I love baby's bums and I don't even have a picture of Jamie's back or bum.

And I wish we had taken some pictures of Jamie after he had died as well. We have a couple of pictures, which Kaye from the PICU took after she had washed and dressed him the night he died. But I do wish we had some pictures of us holding him after he had died, but at the time it wasn't really appropriate because it was too emotional and we were too devastated by what we had lost. I also think having a picture of Jamie in his coffin may have helped me but we didn't even think about taking the camera to the funeral directors. I think all of this is because we have so few memories of Jamie, I'm scared of forgetting any of them, even the ones after his death.

I've been reading stories written by parents who have had a stillbirth or a death shortly after birth and they have been able to wash and dress their baby, to take lots of pictures. After Jamie died Kaye asked us whether we wanted to bath and dress Jamie but because of all the tubes and the heart surgery I couldn't face it, I didn't want to see Jamie with so much trauma, I didn't want to see what his little body had been through that day. I don't regret not seeing Jamie's body after surgery but I'm sad that I wasn't in a position to see my baby's body again. He was very wrapped up everytime we saw him after he had died, so we could just see his beautiful face and head. Seeing and holding Jamie after he had died was still very important and we will always have those special memories.

On the news last night was story about Zoe Chambers, the little girl who had a heart transplant at the Freeman a few weeks ago, and she is now able to go home.
http://news.bbc.co.uk/1/hi/england/humber/6925470.stm

She looks so well. I know she has lifetime of problems ahead of her but she has a chance of life. I am so happy for her parents, that they get to take her home after she was so close to death a few short weeks ago and it is a real testament of the ability of the cardiac team at the Freeman, who are an amazing group of people.

Obviously I can't help but feel sad when I read Zoe's story because Jamie couldn't be saved but I know it was because his little body was too poorly, not because the heart couldn't be corrected. He was in the best place, with the best team. And Zoe's story really shows what can be done.

We've had so many emails, texts and cards of support and they have made a real difference. Losing Jamie has been such a lonely experience but it has been very touching to read the words of support and they have helped to keep me going over the last 3 weeks, as well as when I was pregnant.