Losing Jamie

Troubles in a bag

2009-06-03T22:35:00.002+01:00

I have borrowed this from Niobe's blog but I want to share it because it made so much sense to me and it made me feel happy.
I had my first counselling session this morning and we talked about this story and I realised that I would not swap lives and experiences with anyone. Sometimes I can feel so much pain I just don't know where to turn, I miss Jamie so much and I can feel lost and depressed and confused but that is me, where I am now. I am dealing with my grief, I am doing well - apparently I am not insane! - but it is my life, my memories, my son. I have lost my son but I am surrounded by love and support and hope and laughter, I have to grab hold onto this. I have my memories of Jamie, they live with me every day, they are part of me and I don't want to lose them as well. I am grateful for what I have in my life - Jamie, Lucy, Alice, my fantastic husband and the army of friends who support me and get drunk with me on a regular basis.

There’s a story about a village whose inhabitants constantly and bitterly lamented the inequities of life and fate. Wearying of their complaints, the village headman told the villagers to each pack up their troubles into a sack and to hang the sack on the branches of the big tree at the edge of town. As the villagers stood looking up at the sacks hanging in neat rows, the headman told them that, while, in this world, everyone must bear some burdens, in the interests of fairness, he would allow each of the villagers a choice of troubles. The villagers circled the tree, checking the size and weight of the various sacks, loosening the ties and examining the contents. And, of course, in the end, each person took his own troubles back.

2009-05-29T16:32:00.001+01:00

today i feel happy, content, focused, settled, hopeful, calm, relaxed, fulfilled, rested, ready, able...

I dream

2009-05-20T22:20:00.002+01:00

of a beautiful, sandy beach with clear blue water. The sun is shining down and the 5 of us playing on the beach. We are relaxed, happy and together.
Maybe this is heaven.

Finding my perspective

2009-05-19T18:11:00.004+01:00

I have been for a long walk today in the wind and the rain and the world feels a little less bleak and hard this evening. I need to slow down, cut myself some slack, enjoy myself a bit more and put things back into perspective.
I have tried to do so much over the last two years, I guess in an attempt to fill that huge gap in my life, that I have been left drained and stressed. I don't know how I am going to move forward but my instinct is to slow and down and see what happens.

pain

2009-05-18T22:49:00.003+01:00

I feel so lost my gorgeous little boy. I love you and I miss you but I truly thought I would feel better by now but I don't. I replay your short life in my head and it hurts so much I can hardly stand it.
I am pushing everyone away and I have to stop. I hurt so much that I am sometimes scared about what I might do to stop that pain, so I look at your sisters, I cuddle them and I hold your dad to stay here and keep going. But still it doesn't feel enough.
I am so very scared about what the future holds, can I really sustain this pain for the rest of my life?
I miss you so much and I want you back.

2009-04-28T22:30:00.002+01:00

I haven't shed many tears this month but I feel very lost and confused. I miss you and I really want you and I am struggling with the thought of not having anymore children. I need some time, some space, some cuddles, some love and some laughter to try to get my head straight.

I haven't been well this month and that has given me lots of time wrapped up in my duvet to think and reflect. I need to look after myself and focus on putting my head together. Sometimes, I am so wrapped up in missing you and feeling pissed off with everyone and no-one that I am missing the good stuff I have in my life. Your sisters are my life, they keep my heart beating, they are funny and silly and crazy and kind and caring and thoughtful and cuddly and just amazing.

Your dad is just the best man on the planet - he is loving and funny and thoughtful and strong and caring and romantic and sexy and clever and hard working and beautiful and he is my soulmate, my best friend.

But I feel hopeful for this year, I have given myself permission to take it easy, work towards getting better this year and to focus on my family, friends and my home - the good stuff.
You will never be far from my thoughts my beautiful little boy but I need to move on, I can't grieve like this forever, it just hurts too much and my heart is broken.

2009-04-02T10:59:00.002+01:00

This week, I feel good. And this needs to be celebrated :-)
You have two amazing sisters and, despite all their squabbles and fights and refusals to do anything I want at all unless it involves watching tv or making cakes, they are my life and they keep me going on my darkest of days. A cuddle from them can make even the darkest clouds go away.

This week has been a big week for Lucy, she had her birthday party at the farm last weekend. It was a fantastic fun and sunny day. You were missed incredibly but the smiles on the girls faces just said it all. Lucy turns 5 this weekend and I just don't know where those 5 years have gone. It is also a reminder that, in many ways, my broken heart is never truly going to heal - I so wish we were able to have you here for your birthdays.

Lucy also learnt to swim this week - she did 3 lengths in the little pool all by herself. She was so exhausted she burst out crying at the end!

Our family life is a bit chaotic and, at times, frantic and emotional but it is a family of love and support and cuddles andfun and life. You would have enjoyed being with us, your sisters would have teased you rotten but you would have loved them for it. I would do anything just for one more cuddle.
If I could have a Groundhog day I would go back to the Wednesday, when your sisters met you and I got to wash your hair and your face. I couldn't hold you because of all the wires but this was the next best thing. These memories I will hold with me forever. I love you, my little gorgeous Jamie. I am so glad you came into our lives, even if your visit with us was brief.
xxxxx

2009-03-30T13:40:00.002+01:00

I'm feeling ok, life is moving by and ticking over. But I feel very detached from life, like I am just going through the motions. Every few days I feel connected and energised and it feels amazing, like I am truly alive, but then I am back to feel distanced and separate from the world around me again. Is this grief or depression or both? I really don't know.
I miss you so much, words truly can't express how much my heart and my arms ache for you. I have to keep reminding myself how poorly you were, how painful and difficult your life may have been but that doesn't stop me imagining the troublesome, noisy, nosy little boy I should have with me now. I feel robbed of my much wanted and loved third child and I miss you so so much.
I really thought I would feel better almost two years later, and in many ways I do, but the wound is still raw and painful and I'm wondering how long, if ever, this healing will take.

walking in my shoes

2009-03-27T18:14:00.001Z

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others’ eyes that they are glad they are my shoes and not theirs.
Most people- they never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so that they don't hurt quite so much.
Some have worn the shoes so long that days will go by
…..before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
(Unknown Author)

It's March already...

2009-03-03T19:25:00.007Z

I think about you every day sweet, precious boy. I so want to hold you, smell you and kiss you again and I'm struggling to understand that you are gone forever, that I can never do those things again.
Life still feels unfair and I still feel angry - at no-one, just with the hand I have been dealt which meant that we had to lose you.

I now feel that I cannot have anymore children. I am not strong enough to cope with another pregnancy, to worry, to have antenatal checks and tests, to wonder whether I will lose another child, to feel so scared and to fear the worst will happen again. You cannot be replaced. I don't have any desire to be pregnant or to have another baby. I want you back in our lives. I could love another child and I would be happy if we had another baby but there are no guarantees in life and we cannot guarantee a healthy, well baby. I have my two girls, who are happy and healthy, and they are my focus now and I do all I can to help them remain happy and healthy.

I now look back on your short life and the few weeks after your death and I wonder how I managed, how I cope, how I survived. I replay in my head everyday being with you in NICU, saying goodbye to you before your surgery and then you being handed to me shortly after you had died. There are things I wish I had said and done differently but I did everything I could at that time and I don't have the power to go back and change anything.

Life is ok, I am intensely proud of my girls - they are my life, I am loved and supported but this journey is hard and long and I wonder whether it will ever end. I miss you lovely boy and I wish you were here with your family.

It is the end of 2008

2008-12-30T21:26:00.002Z

and you would be almost 18 months old now, into everything and driving your sisters crazy. Your sisters often ask about what you would be doing, what you would be like and I enjoy telling them what I think you would like doing now and what toys and games you might like.

You were very missed this Christmas, by me, daddy and your sisters - it still feels like you are missing, a gaping hole that cannot be fixed or healed. We had fun and games and laughters but something just wasn't quite right, you weren't there and we miss you beautiful baby boy.

After tomorrow I will no longer be able to say that you died last year. I will now have to say that you died in 2007 or say how long ago you died. It feels like I am moving further away from you and it will take a while to get used to. But you have a huge place in my heart and you always will live there. Your memory will never fade, I will remember those precious few hours with you for the rest of my life. I love you, my amazing brave boy.
xxxxx

as good as it gets?

2008-12-16T09:25:00.003Z

I've reached a point where I feel like this is as good as it gets - I can function, I can work, I can get out of bed in the morning, I can coo over other babies, I love my children, I love my husband, I love my friends, I can laugh, I can be happy.
But my heart is broken and a piece will always be missing. Throughout a good day an image, a child, a song, a comment, a question, a thought can cause my tears to fall. My boy is everywhere I go. Maybe this is what it will be like forever - life going on but, out of nowhere, something triggers thoughts of my boy and what we have lost. I have always believed in fate, something happening for a reason but I struggle to find the reason why we had to lose our son - he was so wanted and so loved

I can't pretend to be the person I used to be, after you have cradled your dead baby in your arms it would be wrong to be the same person.

My heart also aches with the hurt my girls have experienced - they are both still dealing with their emotions about the brother they briefly met but never saw again. Sometimes I watch my girls playing and I am aware of the overwhelming sense that someone is missing. What would life been like, I wonder, had Jamie lived.

The girls still talk about Jamie often. Lucy was sad yesterday because her brother is dead but she likes to think of him swimming around the world and smiling when we think about him and talk about him. Alice is a little more complicated - she is a much more emotional child and she is still battling with thoughts and worries and new emotions about Jamie and his death, how that makes her feel and how it makes me feel. From a very early age, my girls have learned that doctors can't save everyone and that must be very unsettling. All we can do is continue to allow them to speak about him and to ask all the questions they need to.

2008-12-02T12:35:00.002Z

We are now approaching our second Christmas without Jamie. I feel a mixture of lost and found, happy and sad. Life is going as well as it can be - my girls are fantastic, I am busy, I have some great friends and the love of a good man but some days I feel so so lost and wonder whether that will ever end. For my girls, I am looking forward to Christmas but I know it will also be emotional and, at times, unbearable.

I would do anything to have my boy back with us again. I have to figure out how to close the gap in my life because some days it just hurts too much. Am I to experience this for the rest of my life? To lose a child has to be the hardest experience in the world because it lasts a lifetime, a wound that never properly heals.

I have to work out how to be happier - I have so much to be happy about but my head won't let me relax and enjoy life.

Bastards

2008-11-12T12:12:00.001Z

http://news.bbc.co.uk/1/hi/uk/7708398.stm

I feel physically sick. How can someone torture a baby? How can that happen? Why wasn't he rescued? Rest in Peace Baby P
xxxxx

2008-11-09T15:12:00.001Z

I will always love you
xxxxx

2008-11-04T21:53:00.002Z

I had a special moment with my littlest girl this morning. Cuddled up in bed Lu told me so loved me, and after a huge hug she told me she wished Jamie was still here because she misses him. Lucy had only just turned three when Jamie died and we really didn't expect Jamie to remain in her thoughts. Lucy told me about visiting Jamie in hospital - she can remember touching him, she can remember the special bed he was on and all the wires and tubes he was attached to.

I have always felt blessed for having Jamie for those three short days but never more so than now - he has had a huge impact on his sisters, more than we ever imagined possible. The girls talk about Jamie with so much love, tenderness and, sometimes, humour. I love talking about Jamie with them, it means he was here, he touched us, he isn't forgotten but it just breaks my heart that he isn't here to argue with and tease his sisters. We will never get to hear him laugh, to see him giggle, to hear him say his first words or to see him make his first steps. My heart aches with the desire to see him and hold him again - when I close my eyes I can see him, I can smell him, I can feel his skin on my lips and I can feel his soft curly hair.

My precious boy was so poorly, he wasn't meant for this world - he stayed with us for as long as he could and left us with some beautiful memories. I miss my boy, I wish he could have stayed for longer, I wish I was snuggled up to him now.

2008-10-14T17:52:00.002+01:00

when i think about the last 15 months, I really don't know how I have survived. There have been some very very bleak, depressed times when the pain has hurt so so much I have felt nothing but despair. But then, somehow, I have clawed my way back to positivity and I have coped again. My girls are amazing creatures and they have really kept me going on a day to day basis.

I have discovered how strong I can be - I have coped with situations that some people would run away from. I have befriended the woman in the playground, whose 2nd baby was born a week after Jamie. We didn't know each other yet our oldest girls were in the same class and she didn't know what to say and she always stayed away when a group of us mums were talking. We are now friends and she has since had another baby.

When people find out what I do for a living, they always ask why I want to work with pregnant woman and new parents. It is certainly not out of any misplaced yearning to fill a gap in my life. I love my job, I love being with parents as they embark on this new chapter of their life. It's very special and it means a lot to me.

I am immensely proud of myself for coping as well as I have done so far. I haven't fallen apart. I do have times when it is difficult to cope, I do have times when I feel like I will never stop crying, I do have times when I am so immensely tired with just coping that I feel like I could sleep for a week, I do have times of huge anger that many of the people around me can continue with their lives with no great gaping hole in their lives and I do have times when all I think about is Jamie and how I would love to hold, smell and kiss him again. I replay his final day in my head and wonder what life would have been like had his operation been a success.

I sat and cuddled a new baby today and, afterwards, it dawned on me that I held him for longer than I ever held Jamie. I'm not upset about it, it's just a sad fact.

do you know what...

2008-09-24T21:05:00.003+01:00

I'm not brave or strong or amazing - I am a mother who is missing one of her children and it hurts like hell. I cannot explain the pain I feel on most days, the panic I often feel when I first wake in the morning at the thought of not having all my children with me. My thoughts often take me back to being with him in hospital, to saying good bye to him before his surgery and to holding him in my arms and kissing his head after he died and then seeing him in his tiny white coffin.

I am surrounded by love, tenderness and support, I consider myself very lucky but I do sometimes wish people wouldn't expect so much from me. I am going to have bad days, sometimes I am going to be depressed and low, I am going to be angry, I am going to want to cry, I am going to want to withdraw from people.

Despite my fight, my determination to be busy and happy I struggle on a daily basis to keep my head together, to stay on top of my feelings, to not crumble under the weight of all the grief I feel. Most days I feel confused, clumsy and a little lost, despite my loud, confident and happy image.

Why was my son taken from me? why was he born so poorly?
I miss you Jamie, my heart, my arms, my life aches for you but all I have is your memory.
xxxxx

2008-08-23T11:46:00.002+01:00

I love my girls, I love my boy, I love my husband, I love my friends and my home. And I quite like me as well.
We're in a good place
xx

2008-08-09T20:13:00.003+01:00

I'm kind of in a good place, I'm not dwelling on my boy, on my grief, on the gaping hole in my life, I'm focusing on the future and on the good stuff. The crap will hit me again eventually so I'm not willing it on!

I have been in a few situations recently where I have been asked how many children I have and I have struggled with this since Jamie died but on these recent occasions I have only mentioned my girls. It doesn't mean I don't want to mention to Jamie or that I am forgetting about him I just want to be treated as a normal mum, not to be pitied. I don't want to shock people or make people feel uncomfortable around me. When I know people well enough, then they will be introduced to my son, he won't be a secret but I am learning that there is a time and a place.

Now that a year has passed, I am starting to receive questions about trying for another baby. And the truth is that I really don't think we will do that, the baby I want is Jamie, he cannot be replaced, but we can never have him back, we only have his memory left with us.
I don't think I have the emotional strength to carry another baby, I have 2 girls to think about, care for and remain sane for. If someone could gaurantee me a healthy pregnancy and a healthy baby I might think about it, but there are no guarantees and I need to focus on what I have, rather than what I have not.

Helping Yourself Heal When a Baby Dies

2008-08-09T18:13:00.002+01:00

Embrace Your Loss
Your baby has died. You are now faced with the difficult, but important, need to mourn. Mourning is the open expression of your thoughts and feelings regarding the death of your baby. It is an essential part of healing.
You are beginning a journey that is often frightening, painful, overwhelming and sometimes lonely. This brochure provides practical suggestions to help you move toward healing after the death of your baby.

Allow Yourself to Mourn
Whatever the circumstances of your baby's death, you will need to share your grief outside of yourself. Whether you were pregnant for a brief time, many months, delivered a stillborn baby or your baby lived for a longer time, you have every right to grieve.
The death of your baby may have come suddenly, without any warning. You have been given little, if any, preparation for this experience. You will grieve in your own special way. Try not to adopt assumptions about how long your grief should last. Consider taking a "moment-moment" or "one-day-at-a-time" approach that allows you to grieve at your own pace.

Expect to Feel a Multitude of Emotions
Experiencing the death of your baby affects your head, heart and spirit. So you may experience a variety of emotions as part of your grief work. Confusion, disorganization, fear, guilt, relief or explosive emotions are just a few of the emotions you may feel. Sometimes these emotions will follow each other within a short period of time. Or they may occur simultaneously.
As strange as some of these emotions may seem, they are normal and healthy. Allow yourself to learn from these feelings. And don't be surprised if out of nowhere you suddenly experience surges of grief, even at the most unexpected times. These grief attacks can be frightening and leave you feeling overwhelmed. They are, however, a natural response to the death of your baby. Find someone who understands your feelings and will allow you to talk about them.

Allow for Numbness
Feeling dazed or numb when your baby dies is often part of your early grief experience. This numbness serves a valuable purpose: it gives your emotions time to catch up with what your mind has told you. You may feel as if the world has suddenly come to a halt. Your plans and dreams for the future have been assaulted.
You may feel you are in a dreamlike state. As one mother expressed, "It's like running headfirst into a solid wall. I was stunned and didn't want to believe the words I was hearing. I wanted someone to wake me up and tell me this wasn't happening." Feelings of numbness and disbelief help create insulation from the reality of the death until you are more able to tolerate what you don't want to believe.

Slow Down Important Decisions
Some people may try to hurry you into decisions to protect you from beginning to feel sadness and loss. They often mean well, but they are also potentially complicating your healing. You should not make any major decisions until the initial pangs of shock and numbness begin to lessen.
If possible, attempt to make decisions with your spouse or compassionate friend. Realize that you will probably have differences of opinion. That's all right – your grief is unique. If you do disagree, respect each other's right to do what feels right individually. For example, one of you may want to see and hold the baby, while the other does not feel a need to.
If you need time alone to begin to make some decisions, let people around you know this. While some people may be offended at your need for privacy, this is your baby and you have every right to do what is right for you.

Seeing and Holding Your Baby
Only you can decide what your needs are related to seeing and holding your baby. But, one reality is certain – you should be given the option. Many parents value this opportunity to say hello before they say good-bye. There is nothing wrong with wanting to see, hold and touch your baby.
Don't make a quick decision about this. Take your time and think it over. If you have fears about what your baby might look like, ask the doctor or nurse to describe your baby's appearance. Should you decide to see and hold your baby, spend as much time as you need. This short time you have will go a long way toward helping you heal.

Give Your Baby a Name
Your baby deserves a name. If you had already decided on a name, keep it. This name truly belongs to this unique child. Having a name for your baby allows you to talk about your loss in a personal way. You are openly acknowledging that you have loved a child and will always remember him or her. You will find it easier to embrace your memories if you can refer to your baby by name.

Gather Important Keepsakes
Memories are one of the best legacies that exist after a baby dies. You may want to collect some important keepsakes that help you treasure your memories. While some hospitals automatically offer to provide you with ways of remembering your baby, not all do. So, be certain to request any items that you want to be able to keep.
Examples of keepsakes you might want include the following: a picture of your bay (even if you don't want it now, it can be taken and viewed later), a birth certificate, a set of foot prints, plastic arm bracelet, the blanket your baby first came in contact with, or a lock of hair.
You may want to create a memory box to keep these special keepsakes in. Then, when you are missing your baby, you can open up your memory box and embrace these special memories. The reality that your baby has died does not diminish your need to have these objects. They are a tangible and lasting part of the special relationship that you had with your child.

Make Use of Ritua
lThe funeral ritual does more than acknowledge the death of your baby. It helps provide you with the support of caring people. The funeral is a way of giving testimony to the life and death of your child. Most importantly, the funeral is a way for you to express your grief outside yourself.
You might have some people tell you, "It will be easier or better not to have a funeral". Deciding not to have a funeral is a frequent regret that many parents express. You and your baby have a right to have a funeral. The funeral is one thing you can do for your child at a time when you feel you can do so little.
Funerals do not have to be done right away. Take your time and decide what will best meet your needs. Whatever you do, don't have a funeral that excludes the mother. Wait until she is out of the hospital and can be included in the service that remembers your baby.

Be Tolerant of Your Physical and Emotional Limits
Your feelings of loss and sadness will probably leave you fatigued. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Nurture yourself. Get daily rest. Eat balanced meals. Lighten your schedule as much as possible. Caring for yourself doesn't mean feeling sorry for yourself, it means you are using survival skills.

Talk About Your Grief
Express your grief openly. By sharing your grief outside yourself, healing occurs. Ignoring your grief won't make it go away; talking about it often makes you feel better. Allow yourself to speak from your heart, not just your head. Doing so doesn't mean you are losing control or going "crazy". It is a normal part of your grief journey

Find caring friends and relatives who will listen without judging. Seek out those persons who will "walk with" not "in front of " or "behind" you in your journey through grief. Avoid persons who are critical or who try to steal your grief from you. They may tell you, "You're wrong," "You can have another baby," or "You never got to know your baby." While these comments may be well-intentioned, you do not have to accept them. You have every right to express your grief. No one has the right to take it away.

Develop a Support System
Reaching out to others and accepting support is often difficult, particularly when you hurt so much. But the most compassionate thing you can do at this difficult time is to find a support system of caring friends and relatives who will provide the understanding you need. Find those people who encourage you to be yourself and acknowledge your feelings – whatever they may be.

Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of the death of your baby, realize this feeling as a normal part of your grief work. Find someone to talk to who won't be critical of whatever thoughts and feelings you need to explore.
You may hear someone say, "With faith, you don't need to grieve". Don't believe it. Having your personal faith does not insulate you from needing to talk out and explore your thoughts and feelings. To deny your grief is to invite problems that build up inside you. Express your faith, but express your grief as well.

Allow a Search for Meaning
You may find yourself asking, "Why did this baby die?" "Why this way?" "Why now?" This search for meaning is another normal part of the healing process. Some questions have answers. Some do not. Actually, the healing occurs in the opportunity to pose the questions, not necessarily in answering them. Find a supportive friend who will listen responsively as you search for meaning.

Move Toward Your Grief and Heal
The capacity to love requires the necessity to grieve when your baby dies. You can't heal unless you openly express your grief. Denying your grief will only make it become more confusing and overwhelming. Embrace your grief and heal.
Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself. Never forget that the death of your baby changes your life forever. It's not that you won't be happy again; it's simply that you will never be exactly the same as you were before the baby died.
The experience of grief is powerful. So, too, is your ability to help yourself heal. In doing the work of grieving, you are moving toward a renewed sense of meaning and purpose in your life.
by Dr. Alan D. Wolfelt

This pretty much sums it all up, there is no right or wrong way to heal, take it each minute, hour, day, as it comes if you need to

when someone's child dies

2008-07-31T13:05:00.003+01:00

I have had such fantastic support since Jamie died and I am fortunate to have such understanding, supportive, loving and caring friends and acquantiances.
I found this on the blog of another grieving mother and I think it sums up the complexities of friendships and contact with other people after a child has died.

I wish my child hadn’t died.
I wish I had him back.
I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me.
If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears.
You have talked about my child and you have allowed me to share my grief. I thank you for both.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever. I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child.
I also know that my child’s death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.
I wish you wouldn’t expect my grief to be over. These first years are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die. I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.
I wish you wouldn’t expect me “not to think about it” or “be happy”. Neither will happen for a very long time, so don’t frustrate yourself.
I must hurt before I can heal.
I wish you understood how my life has shattered.
I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you. When I say, “I’m doing okay”, I wish you could understand that I don’t “feel” okay and that I struggle daily.
I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.
Your advice to “take it one day at a time” is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I’m doing good to handle an hour at a time. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off.
When I walk away, I wish you would let me find a quiet place to spend time alone. I wish you understood that grief changes people.
When my child died, a big part of me died with him. I am not the same person I was before my child died and I will never be that person again.
I wish very much that you could understand ~ understand my loss and my grief. But I pray daily that you will never understand.

sunflowers

2008-07-14T08:24:00.005+01:00

sunflowers for Jamie

The pier was closed so we went on a boat instead

Happy Birthday precious boy

xxxxx

we've made it through the first year

2008-07-14T08:12:00.003+01:00

I'm not sure how but we have.

Last week was full of love, tears, happiness, smiles and sadness as we remembered our boy and celebrated our strength, our children and all we have in our lives.

Saturday was a day with family and friends - all the children released balloons and they looked so beautiful as they floated up through the sky towards Jamie's lighthouse. It was very moving and Jamie felt very much part of it, I just wish he could have been there with us.

this time last year...

2008-07-12T08:36:00.003+01:00

I was at your side, stroking your hair, holding your hand, watching you breathing, spending a precious last couple of hours with you before your heart surgery. I so wanted to hold you and give you a cuddle but it just wasn't possible.

might sound really crazy

2008-07-11T18:43:00.002+01:00

but I feel really happy today, very peaceful and smiley! I'm not really sure what that says about me when it is the anniversary of Jamie's death tomorrow. There have been many tears this week but also lots of cuddles, smiles, laughter and love this week as well.

I miss my precious boy but we've made through his first birthday. On reflection I feel like we are grieving positively, we have encouraged our girls to grieve and talk about Jamie, we have let our own emotions out when they have needed to be released, we have done everything to grieve well. It hutrs and, at times, it feels like my heart is being ripped out, but we haven't fallen apart, we haven't stopped living. Instead I feel like we have grabbed on to life as much as we can and we are making the most of it.

The hardest year was last year, we never have to experience it again and, hopefully, never anything similar in the future. We have our memories and, yes, we replay Jamies life and death from time to time but we are strong and healthy and feeling positive about the future.

I'm sure there will be tears tomorrow as I remember the last time I saw my boy alive but he has given us so much to live for, so raise a toast for my precious, brave, and amazing Jamie and celebrate life :-)

Happy Birthday my beautiful boy

2008-07-08T12:54:00.003+01:00

You were born at 12.30pm on July 9th - you looked so healthy and strong and I prayed that the doctors had got it all wrong, that you were healthy and well and that we would take you home. It was the start of our precious time with you, the start of a cruel, exhausting and desperate emotional rollercoaster that I never want to experience again.
You had your first surgery when you were 6 hours old - me and daddy sat for 6 hours in our postnatal room waiting for news. You looked weak but you had survived. My heart ached with pride at your strength but it was also breaking at the sight of you looking so poorly in your NICU bed, attached to what looked like a hundred machines.
On July 10th - daddy's birthday - you were transferred to the Freeman where we were told that surgery was hopeful, it was scheduled for Thursday, July 12th.
I held your hand, I stroked your hair, I kissed your head, I committed your smell and touch to memory and I hope it stays with me for the rest of my life. The morning before your surgery, you woke up and you smiled at us - it is all captured on film, which I haven't been able to watch since our first week without you.

Thoughts of you enter my head every few seconds. I love you and I miss you and I wish you were here with us. We should be planning your birthday party, not a memorial party and I should be looking at Happy 1st Birthday cards instead of the kind, thoughtful and supportive 'You are in our thoughts' cards on my mantlepiece. A year on, my heart is still breaking with my grief, my loss and my anger that you were taken from us - you are loved and so so wanted, why did it have to happen to us?

I really don't know how I have survived this first year - I have found strength I didn't know I had and love and support I didn't realise was around me. I love my husband and my two girls and their love and strength has kept me sane, it has kept me alive. At times it feels like I am two people - keep me busy with work, my family and friends I will keep going and I can be truly happy but when I stop, when I have no distractions, when I hear a song or stare at your picture the tears fall and there is no stopping them.

Despite all the pain and tears, I don't regret a second of it - I got to meet you, my precious third child, my beautiful son. We bonded while you were growing inside me, we had our own special relationship and I will always remember your kicks and squirms as I talked to you while lying in bed at night. You are my beautiful, brave, strong boy and I love you so so much. I would do anything to have one more cuddle with you but I know that can never happen. Instead I will dream of you, I will keep missing you and I will keep my memories of you with me everyday.

Sleep well my angel
xxxxx

Questions

2008-06-25T18:43:00.003+01:00

Lucy has been asking lots of questions abou Jamie and why he died. She knows he had a poorly heart but she is struggling to understand. She has asked why Jamie died but she and alice lived and are healthy and why other babies don't die. We have a picture of Jamie in intensive care with all his wires and tubes attached - Lucy was looking at it this morning and she wanted to know what they all were. So I explained what all the wires were for and she seemed to get it. She left the room with the picture and then she came back :"I miss Jamie mummy" and she gave me a huge hug.

I'll never forget...

2008-06-10T20:33:00.002+01:00

I’ll never forget:

Knowing something wasn’t quite right at the beginning of my pregnancy
Getting to know him when he was in my tummy – his kicks and squirms
My belief in my instinct to know that he wasn’t going to die inside me
Feeling at one with him in the last few weeks of being pregnant
Telling my baby that if it was too hard and too painful, he could say goodbye

Seeing my baby boy hooked up to so many machines and feeling helpless and detached from him
Seeing my baby hooked up to so many machines and feeling my heart breaking

His tiny little fingers
His tiny little feet

The Freeman consultant who told us our baby was probably going to die and the fact that he was chewing gum as he told us

Jamie fighting to stay awake despite being anaesthetised for his transfer from the RVI to the Freeman

The kindness of the nurses and doctors in NICU at The Freeman

Washing my son’s hair as he lay in his NICU bed

The last time we saw him alive – he was properly awake. We got to talk to him he held our fingers, we tickled his feet and we saw him smile at us.

Thinking that this was Jamie saying goodbye to us

Waiting at home for news of Jamie’s surgery and crying when we were told it had become complicated and Jamie had been put onto bypass

Seeing my husband sob uncontrollably

Waiting back at the hospital for further news about Jamie

Being told by the surgeon that he was fighting hard to save Jamie but it was looking unlikely

Seeing the blood on the surgeon’s boots, knowing that was blood from my son

Telling the surgeon’s we wanted them to stop. Jamie had been in surgery for 12 hours, he had been bleeding out for several hours, all of his internal organs were damaged, and he would most probably have suffered severe brain damage. The surgical team agreed with us.

Feeling like the walls were closing in on us as the staff went to switch off Jamie’s life support equipment

Seeing my dead son being brought into the room, all wrapped up as if he were asleep.

Hearing a scream and realising it was me

Holding my son and willing him to wake up

Kissing his cold skin and stroking his beautiful black curly hair

Telling him how much I love him

Wishing the nightmare would end

Holding my husband

Walking on the beach at sunrise the next morning. My heart was broken but it was so beautiful and peaceful walking on the sand that maybe it was a sign that his pain was over

Holding my girls

The kindness, the support, the words, the tears from family, friends and acquaintances

How difficult this year has been on all of us but we have found our strengths when we have needed it and I will never forget the strength of my children – they have kept us going on the darkest of days

I’ll never forget our little boy and the precious time we spent with him
Sleep well Jamie, we love you
xxxx

How old is Jamie mummy?

2008-06-09T22:18:00.002+01:00

me: Jamie would be almost one
Lucy: Just like Joe (our friend's son)
me: yes, he would have been like Joe
Lucy: will Jamie be having a birthday party
me: we'll be having a little party to remember him
lucy: is he excited about his birthday
me: well Jamie died didn't he
lucy: yes he did die - she thinks for a minute - that's going to make it really difficult for him to open all his birthday presents isn't it?

I'm crying and I'm smiling, what a beautiful conversation with my little girl about her brother. These little moments are so special and so unexpected - what a gift children are :-)

My children never fail to surprise and amaze me

2008-06-08T12:47:00.002+01:00

Alice has written a card for Jamie's birthday:

To my baby brother
I love you so much I wish you were still alive
Love your sister Alice

And little Lucy was telling my friend Emily that her 18month old son was being naughty:
"My brother Jamie was never naughty, he was too poorly"

Me and Gary don't often talk about Jamie, it hurts too much but the girls mention him several times a week. When adults say that young children are unaffected by the death of a baby because they can't possibly comprehend what has happened, they are wrong!

My girls are keeping Jamie's memory alive, he is very much a part of their lives, he is in their thoughts, he has touched their lives in ways we never imagined. They tell their friends about him and they explain that he was too poorly to stay with us for very long, they explain about all the tubes Jamie was attached to. Alice also explains how Jamie was cremated and turned into dust so we could scatter his ashes in the sea. I am so so proud of my girls, they shouldn't have to experience this loss and all the emotions that accompany it but they have coped brilliantly and they help us during our darkest days with their questions, their hugs and their love of life.

a few wobbles

2008-06-05T09:47:00.002+01:00

I'm feeling a bit wobbly and fragile, not hugely so I don't think anyone would notice but I can feel the difference.
It is 5 weeks until Jamie's birthday and I can't believe how fast this year has gone - how have we coped, how have we held it together? It's fair to say the first few months passed in a blur, a whirlwind of emotions and an ocean of tears. But we are all coming through it stronger.
Every now and then, but not very often I allow myself to wonder what Jamie might have looked like and what he might be doing now - would be be crawling or even walking, what kind of child would have been, would he be as crazy as his sisters?

I feel happy and relieved to be back at work. I have been teaching since January and I have taught ALOT of courses. I can detach myself and my grief from my classes, they are completely seperate and work means too much to me.

I am taking most of July and all of August off work, so we'll be stretched financially but I need to spend that time with my girls - to enjoy them and to connect with them again after such a tough 12 months.

I am trying not to think too much about Jamie's birthday because I really don't know how I'll feel but it will also be a happy week with Alice and Gary's birthday, which I am also busy planning.
On Gary's birthday last year Jamie was in intensive care at the RVI. It was an emotional day, Jamie was recovering from his first surgery, his heart was scanned and we were told he was probably going to die. So I'm sure Gary would like a quiet and less dramatic and emotional day this year.

As for my amazing Alice, still thinking what to do for her birthday. I feel the need to spoil her and make it magical.

The time has come to write my blog again

2008-05-13T11:15:00.002+01:00

It's May and I feel the strongest ever since finding out Jamie was poorly in March 2007. I haven't written this blog since January and I feel like I have come through the otherside. Since January I have had my lowest moments, I have been depressed and fought off the urge to get anti-d's to numb it all again. I needed to feel that depression to make it to where I am now. At my lowest points I have cried and screamed and I could could easily have walked off the pier just to end the pain but I held onto my love for my husband and my girls and that kept me going through those dark moments.

I can now experience feelings of genuine happiness, not putting on a front, not pretending everything is ok but genuine happiness and I am planning a future, I can look ahead and look forward to it - it is no longer the rest of the my life without Jamie and all the pain and heartache and brings. I will always love Jamie, I will always love Jamie but I have to live my life and I have to enjoy my life because we don't know what it brings. I have a family who need me and I need them and we are enjoying each other.

That said, I still shed tears late at night when everyone is asleep and I am alone with my thoughts of my boy.

But I can't stay sad, I don't want to stay sad. The simple fact is that Jamie is gone, I can never have him back, only my love and my memories of him remain.

I have birthday parties to arrange - my daughter and my husband need to celebrate another year older in July and Jamie's first anniversaries need a fitting tribute, I just haven't decided what they are yet!

But I'm good, I'm happy, I'm strong. My girls are amazingly happy and secure at the moment. Almost a year later they talk of Jamie fondly - he will never be forgotten and he will always be a huge part of our lives

The time has come to end this blog

2008-01-08T11:15:00.001Z

Writing it was a lifeline when I was pregnant with Jamie and after he died when I needed to share the experience and keep his memory alive and the support I have received from friends, colleagues and acquaintances has been fantastic.

It is 6 months since Jamie died and I am in a strange place. I am happy, I am rebuilding my life with Gary and our girls, I am focusing on my family and work, I have finally returned to work albeit very part-time for now and I am taking each week - sometimes each day - at a time. But I still think about Jamie every few seconds and my desire for him is still as strong as it was when I was carrying him in my belly

In many ways I am better, positive, changed healed but in other ways I am broken, damaged, lost and inconsolable. My grief cuts so deep I don't feel able to share it any longer - my ramblings, thoughts and feelings will not make sense to anyone who has not walked in my shoes.

But I want to end this blog positively and write about my family and my hopes for the future.

Gary, my husband and my soulmate. we have been through so much, we've shed a lifetime of tears but we can still make each other laugh and I hope we can have a lifetime of love and laughter together.

Alice, my big girl, my first baby. Your love of life, your enthusiasm, your laughter, your strength keep me happy and keep me going. You are challenging and stubborn, forceful and like a whirlwind in our lives but you are equally loving, kind and caring. You have coped so well with losing Jamie, coping with your own grief, as well as ours. You have coped with experiences a 6-year old shouldn't have to face. Your drawings and your stories, your wit and your energy are so fantastic and I want to enjoy them more in 2008 as you grow and we spend more time together.

Lucy, my little girl who is rapidly becoming a big girl. Your cuddles and laughter have been some of the best medicine. You are growing so quickly. You understood so much more than we thought about how poorly Jamie was and about his death. You have coped so well and you talk about your brother so fondly. When seeing me cry you would bring me tissues and dolls to hold and you always offered me cuddles. I love the way you have bags of 'stuff' around in the house and their importance to you. I love the way you lovingly copy your big sister but your own personality is coming through now. I want to make the most of our time before you start school full time in September and become a proper big girl!

The future. Who knows what that brings? But I have so much to be grateful for - two happy, healthy children, the memory of one brave little boy, a good relationship with my lovely husband and we have our health and opportunities. And I plan to enjoy my family and my life.

In 2007 I cried enough to fill an ocean, in 2008 I would like less tears and sadness and more love and laughter.

haven't done this for a while

2007-12-27T08:27:00.000Z

haven't really seen the point. Jamie is dead and I am still grieving. i feel like i'm in a weird place, i still haven't haven't completely broken out of the bubble I have been in since we found out Jamie was poorly when I was pregnant. My overwhelming emotion is still one of anger but that is joined by numbness and emotional detachment.

I am angry that he is not still here, that we were not allowed to keep him because we love him and we want him so very much. I don't know who I am angry with, I'm just angry. I'm not angry at anyone who gets to keep their babies, their children but I feel angry that they haven't felt this pain, all they have felt is joy but I feel angry that they moan about their life with their children. Count your blessings because the alternative is much much worse.

It's Christmas and we are going through the motions for the girls. I feel full of tears yet emotionally detached, a very strange feeling indeed. The run up to Christmas was great - the school plays, the kids parties, buying and wrapping all the presents but then it became too painful. We have a beautiful tree that my son can't see, he isn't here for his first Christmas. The girls have had a fantastic time, which is the point and we should be proud that we were able to achieve this when we both wanted to run away from Christmas this year.

I guess you could describe my mood as low. I'l be fine again in the new year. I just miss him so much and I would do anything to have him with us.

2007-11-21T23:48:00.000Z

Every now and then I think about whether we could have another baby. In my heart I really don't think I could do it again. I still have a romantic view of being pregnant, of having life growing inside me. But then I think about going back to Fetal Medicine for scans and how stressed it would be to find out whether something is wrong, would I settle until I had that baby safely in my arms? Is it fair to put my family through the stress and anxiety?

The truth is we won't have any more of our own children. If Gary really wanted another baby I would think about it but I'm pretty sure he doesn't. But I do wonder whether it would help with our healing if we were to have a healthy baby - but there is absolutely no guarantee of that at all is there?

And is any desire for another baby just to try to replace what we have lost and that just can't be done. If someone loses a parent - that parent can't be replaced; if someone loses a grandparent, they can't be replaced; if someone loses a partner, that person cannot be replaced and neither can my boy - we just have to keep adjusting to life without him.

Waffle, waffle waffle - confusion, confusion, confusion

New things

2007-11-21T23:33:00.000Z

Things we have done since Jamie died that we wouldn't have bothered with if we were adjusting to life with 3 children:

We set up my office
We have set up my own business - Birth Basics (It's gonna be great!)
Our trip to Edinburgh
Gary got the pinball working
I've started writing again - I've written 2 features for magazines in the last few weeks
I've started to lose weight and get fit
I've been out DRINKING!
We're planning trips away next year
We've made changes in the house and we are planning more

We would swap all of it to have Jamie back - but we can't have him back so I'm proud of the positive steps we have made to create a new normal for our family which involves tears, hugs, hope and happiness.

One Year Ago...

2007-11-16T20:43:00.000Z

Dear Jamie
One year ago today I found out I was having you. I was the happiest woman on this earth. I didn't imagine that a year later I would be sitting here without you. It's been a tough year but I don't regret a second of it - we made you, you grew inside me and we spent 3 very special days with you and you will always live in our hearts. I so wish you were here with us now and I would do anything to have you back but I still feel blessed for having you grow inside me and for being strong enough to meet us.
I love you my precious little boy. I wish I could hold you just one last time.
I will love you always
mummy
xx

and more from me

2007-11-14T22:55:00.000Z

I'm still feeling pretty good. I haven't had any really low days for a few weeks now but I think that's only because I'm not thinking about Jamie too much. If I stopped and really thought about him I would be so pissed off and sad and angry and lost and upset, so I'm getting on with things.
Fireworks night was emotional. It is always a family event, going to the big bonfire and fireworks show. The girls love it, as do we, and Jamie was very definitely missed. I love everything about the night - wrapping up warm in winter coats, with scarves, gloves and wellies. He should have been snuggled up to me in his sling, underneath my coat as I shielded his ears from the load bangs of the fireworks, just as I had done with both girls when they were babies. I had a good weep as the fireworks exploded in the sky above my head and hoped he was looking down on us, his family, enjoying the show as well.

I have been observing an antenatal course (thanks Christine) which was a very positive experience and it felt right to be in a room full of nervous and excited expectant parents. I taught alittle during the 2nd session, which was good for me to do. I am amazed at how well I coped and was completely able to seperate my son from the class. Although I did think of him during one activity looking at the first few days with a baby. we were talking about day 4 and the emotions of milk coming in, etc and I thought well my son was dead by then.
I had a bit of a cry after that session and I needed some wine when we arrived in Lambley but I would be really cold not to have an emotional reaction to going back to work so I'm seeing it as a good thing, I'm not bottling it all away.

The biggest issue I have at the moment is deciding whether to tell people about Jamie. I think it is down to who it is and what the circumstances are. My fear has been that I will feel I have ignored Jamie if I don't tell people about him, and the thought of that upset me so much because I never want to deny his existence, he is my son, he will always be my son and he was here. But I don't want people to feel sorry for me or to avoid me, tiptoe around me, I don't want to upset people and I don't want to be centre of attention.
With strangers or people who I won't get to know, I see no reason to mention Jamie but with people who are becoming a part of my life I will tell them. I talk about Jamie quite freely and I don't want new friends to wonder who it is I am talking about. I told some of the mums from nursery school this week and it was fine and I felt relieved.

I have three courses booked for January and February. I'm nervous and excited about going back to work but I need to do it. It will be another adjustment in my life after Jamie and it will be tough at times but I have never been the type of person to shy away from something because it is going to be hard.

I'm also nervous about 2008. 2007 has been so special - I bonded with my son while I was pregnant and I spent time with him while he was alive but now I have the rest of my life to miss him so I need to plan special things for next year for me, Gary and the girls, or maybe I just need to take each week/month at a time and enjoy what I have at that moment.

still happy...

2007-11-06T16:07:00.000Z

i'm still feeling good - apart from a horrid cold!
I hope I don't jinx things but I feel positive about everything.

feeling happy

2007-10-28T11:04:00.000Z

we've had a great half-term with the girls - we decided last sunday to go away for a couple of days to edinburgh. we've never been away with the girls before and they loved staying in a hotel.
we went to jedburgh abbey on the way there and had a picnic, we went out for dinner at night which the girls loved because we don't often inflict them on restaurants and the we spent all day on wednesday at the zoo. They were so good, despite the travelling and periods of starvation (muuumm we're starving, can we have something to eat nooooowwww) although there was an icecream request/desire/need by Alice refused after a foot stamping incident at the zoo but she survived and hopefully learnt a lesson.
And then we abandoned our girls with their lovely we-want-to-spend-time-with-our grandchildren- grandparents for two days - the girls were spoiled rotten and entertained 24/7 while we got some sleep and went shopping!!

Life feels good and I'm grabbing onto it before I hit my next low again

A fab day out

2007-10-21T16:51:00.000+01:00

Despite having a slight hangover this morning after a night out with some of the mums from school, me and Gary took the kids out for the day.
First was a castle in Sunderland, which was a surprise as it is set next to a dene, which we explored and then we found a great playground with 2 climbing frames, some tyre swings, death slide, rope mountain and roundabout. The kids had a blast and we were there for atleast a couple of hours.
The sun was shining, the kids were happy, gary was happy and so was I. After the park, I was just thinking how happy I was feeling when Alice shouted for me to look out the window and there on top of a set of traffic lights was a magpie. They always remind me of Jamie and it was a nice touch to see one on our lovely family day out.

more small steps

2007-10-19T17:29:00.000+01:00

I visited the midwifery unit today to catch up with everyone there and to find out about all the changes before I start teaching again in January. It was really good - what a lovely unit, although currently quite quite for deliveries. I am so glad I went. I feel ready to teach again, I saw some new babies and I was able to talk about Jamie without sobbing.

I don't think I'll be ready to face the RVI for quite some time but today was a good move, and definitely some progress for me.

I'm so glad I feel able to teach again - I really don't want Jamie's death to have a negative effect on our lives. I need to turn it into a positive and if that means pouring my love into my family and into a job that I LOVE then so be it. It will be hard but it means too much to me to give up.

I love my son, I miss him and the tears will continue to fall for a very long time but I cannot sit at home and become depressed about what I no longer have, I need to celebrate what I do have and try my best to have a happy life.

2007-10-18T21:24:00.000+01:00

Tonight I have put a picture of Jamie in the living room for the first time, he sits among the other pictures of my children when they were babies. I don't know why but I couldn't do this before today, his picture is in our bedroom and in Gary's office but today I feel ready to have him with us in the livign room as well.

that's that then

2007-10-17T18:47:00.000+01:00

If you have had one child with congenital heart disease, the chance that another child will be born with CHD ranges from 1.5 to 5 percent, depending on the type of CHD in the first child...

...Congenital heart defects involving obstructions to blood flow in the left side of the heart have a higher rate of recurrence than other heart defects.

After a dream I had last night about having another pregnancy, I've been wondering today whether I could do it again. But reading these statistics has sealed it for me - I can't do it again. I think for the first time since Jamie died, I want a baby - i feel cheated that I didn't get to hold, cuddle, feed my baby or to watch him grow. But the reality is that Jamie has gone, he was very poorly and he died and my arms are empty of a baby and he can never be replaced. I do consider myself to be very lucky though because I can have cuddles with my girls anytime I want to and need to, they have been in my life everyday since they were born and I love them with all my heart. It would be lovely to be able to have another baby, not to replace Jamie but to continue to let our family grow and to have some happiness but I can't risk losing another child or having a very sick child again. My focus needs to be on Gary and our girls and having a happy life together and remembering Jamie with love and pride. One day I hope my heart will heal enough so it doesn't hurt as much as it does now, so I don't cry everyday for what we have lost and what we are desperately missing. But for now I take some strange comfort in my tears and my grief because it means Jamie was loved, he is missed and he was here.

such beautiful words

2007-10-16T07:27:00.000+01:00

I found this on a parenting forum and it's just perfect

In my dreams, you are alive and well
Precious child, precious child
In my mind, I see you clear as a bell
Precious child, precious child

In my soul, there is a hole
That can never be filled
But in my heart, there is hope
'Cause you are with me still

In my heart, you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

In my plans, I was the first to leave
Precious child, precious child
But in this world, I was left here to grieve
Precious child, my precious child

In my soul, there is a hole
That can never be filled
But in my heart there is hope
And you are with me still
In my heart you live on
Always there, never gone
Precious child, you left too soon,
Tho' it may be true that we're apart
You will live forever... in my heart

God knows I want to hold you,
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then

In my heart you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

I'm a hit!

2007-10-14T07:32:00.000+01:00

Lucy: "mummy I like you"
Me: "I like you too Lucy"
Lucy: "I like you and I think I'll keep you"

Always good to know :-))

And up again

2007-10-11T09:57:00.000+01:00

Today I feel good, able to cope, stronger again. I had a good cry last night and I feel like some of the pain has eased. It's going to be such a long hard road. We're a strong family though, and we will get through this some how.

2007-10-10T18:21:00.000+01:00

When I first lost Jamie, I read about grief and one of the stages is anger. At the time I thought, but I'm not really angry with anyone, Jamie was ill and he died and I just feel so so so sad. Well fuck me, I really do feel the anger now. It's bubbling away inside. I'm not angry at Jamie, I'm not angry at the doctors, I'm not angry at anyone becacuse I feel they are responsible in any way for Jamie's death, I am angry at friends and strangers alike for being able to be happy, to be able to continue with their happy lives, making plans, not experiencing the pain I am feeling.

As I write this down, I realise it sounds absurd and I truly wouldn't wish any sadness on anyone, especially due to the loss of a child but I can't help the way I feel. I'm sure it will fade and it probably means I am making progress, making my way through my grief but the people around me seem untainted by sorrow and heartbreak and depression. Of course I know this isn't true either, most people have their own heartbreak but I am wrapped up in my own selfish sorrow. Eventually, and hopefully soon, I will make my way out again and happy again but for now I feel a little sorry for myself and a little depressed, I can't see much light at the end of tunnel at the moment, I am tired and I am low but then I have a cuddle with my girls and everything seems ok again for a while.
I feel strange, not normal, in an unfamiliar place and a little lost. And now I am going to be with my children as they get ready for bed - alice is making a parrot picture and lucy is looking at a book - and then I'll, hopefully, spend a nice evening with Gary, my anchor who is also trying to cope with the loss of our son.

i feel calm again

2007-10-10T11:31:00.000+01:00

this is the longest period of lowness I have felt since Jamie died. I just feel tired, so so tired of feeling sad, of being stuck in this bubble of grief, of feeling alone in my little world. I think I'm feeling a little bit depressed, but hopefully I'll feel stronger again soon. My grief is like an unknown journey, I don't know where the hard parts are and how long they will last and sometimes I feel very ill-equipped to deal with them.

But today I feel calm again, not so angry and tearful. I have decided to give myself some space today so Lucy is in Nursery all day, she'll love it and I get some time on my own to think and just sit and drink tea if I want to.

Lizzie's little boy Jacob was born yesterday - exactly 3 months older than Jamie. I am so happy for her and I will go to visit them in Nottingham in a couple of weeks time. It'll be emotional but it will also be lovely. I need to be able to celebrate new life and enjoy other people's babies.

I miss Jamie right down to my bones and I really don't know how long it is going to be before it stops hurting quite as much but I also feel so so happy to have Gary and our girls, we have a lot to be grateful for.

A montage of Jamie's life

2007-10-08T21:06:00.000+01:00

Jamie

Jamie, I think about you several hundred times a day, I love you and I miss you so much.
Thank you for waiting for us, thank you for coming to us, even for such a short time.
I love you, my little boy

If one more person...

2007-10-08T13:19:00.000+01:00

asks me whether I am alright now, I really am going to get very angry.
Jamie would have been 13 weeks old today, no I am not alright now, my son is still dead, his death and my grief are both still very raw, there is a huge hole in my life, no I am not alright now.

see, i am normal

2007-10-07T09:38:00.001+01:00

http://uk.youtube.com/watch?v=anSpBUxsgAU

I want to get this down on 'paper'

2007-09-29T13:43:00.000+01:00

I DO want to do my counselling training!!

I have been umming and ahhing for 2-3 years now, mainly because the kids were young, I was getting to grips with my antenatal teaching but it is something I really want to do.

Now I just have to find out more and hope there is somewhere up here that I can do it.

This time next year, both girls will be at school and I will have the time to do it. And maybe I'll be strong enough by then, but the timing could well be perfect :-)))

and...

2007-09-28T19:14:00.000+01:00

alice has been in the gold book at school again this week for excellent work. She is doing so well and I am so proud of her. She is a happy bright child but she usually struggles in her first term but this year she is flying. I thought she would struggle because of the emotional time she has had lately but she's taking everything in her stride which makes me feel very proud and happy.

a happy day

2007-09-28T19:10:00.000+01:00

thanks to jane for an artistic herbal tea and a good moan this morning, my children being in a good mood and coffee with anna, while the kids played after school.
And now, I'm tired and the kids are in bed so time for a glass of wine and a relax infront of the TV - I hope there's something good on!

Jamie's lighthouse

2007-09-27T13:25:00.000+01:00

I think we made the right decision to scatter Jamie's ashes from the lighthouse. It has always been one of my favourite views and now it means so much more. It's such a beautiful and tranquil place.

My girls...

2007-09-26T22:36:00.000+01:00

..make me happy and proud.

2007-09-23T14:52:00.001+01:00

I've decided to go back to work. I am bored and I need to focus on something again. I have meetings this weeks to plan my courses for next year, so I'll be heading back in January. In the meantime I can revamp my teaching kit a little bit and get it all organised again.

I know some people might think it is a little soon to be teaching pregnant couples again but I think I'll be fine. I have seen pregnant women, I have held babies since Jamie died and it doesn't really matter that much cause they are not Jamie. It will be hard but I'll be caught out by something I can't prepare for, I'm sure it'll be a little thing that normally wouldn't affect me.
And I think I need to do it because if I don't go back to work, I may never do it. So I'm jumping back in with both feet. I don't want Jamie's death to be a negative thing, I don't want it to stop me doing the job I love. As long as I leave myself enough time to breath and get my head together I'm sure I'll be fine.

Had THE best day out

2007-09-22T17:47:00.000+01:00

Took the girls to see Hang perform Get Knotted, which was amazing and the kids loved it. It's trapeze dancing and it was really really fantastic. www.hang.org.uk

To start the show was The Balloonatic http://www.stevecousins.net/entertainment.htm
you've never seen anything like it.

Very very funny and incredibly talented - loved it :-)))))

And now for happy stuff

2007-09-22T07:28:00.000+01:00

My girls are just so amazing and incredible. They have coped so well with us losing Jamie. Alice has settled into her new class at school really well. Her teacher is very warm and caring and has allowed Alice the time to talk about her brother - Alice took a picture into school to shoe her teacher and she stood up in front of her class to show it to her friends and to talk about Jamie. She was also taken to the staffroom to show Jamie's picture to the headteacher, who is also a lovely woman and has been talking to Alice about her brother.
Alice ran out of school that night so excited that she had been in the staffroom "mummy, the teachers were sitting on chairs, drinking tea" I'm not sure what she thought teachers did at breaktime, perhaps hang from the ceiling like bats in Doctor Who??

The school are raising money for the Children's Heart Unit Fund as well, which is lovely and Alice feels very touched by it.

Alice has drawn pictures of our family and always includes Jamie. SHe has also written a few stories which include poorly princesses. One story is so beautiful it made me cry. A princess was ill - Alice drew a picture of her on a bed with lots of wires - and the prince was trying to save her but he couldn't so she turned into a fairy so she could fly around and watch the people she loved.

She is obviously expressing all her thoughts about Jamie through her drawings and her stories which is such a beautiful and wonderful thing to do and it is so obviously helping her to cope with her emotions.

And my little Lucy, who we thought would be quite oblivious to everything because she's only 3, talks about Jamie everyday - and not because I am upset or because she has heard us talking about him. She includes him in alot of the games she plays, he is definitely part of her family and she asks questions about why he died. But mostly she just says things like 'I like my brother but he died' or 'we had a beautiful baby' - and she only met him for about 10 minutes.

Lucy has started nursery school and she loves it. She has settled in really well and just runs in in the morning. And one day a week she goes in all day. So far, she' settled and happy. She loves being in there with 2 of her friends and I think she is starting to make new friends as well now.
She is exhausted and niggly afterwards but I am so happy that she's happy.

Today I'm sad

2007-09-21T20:34:00.000+01:00

Today I cried in Tynemouth - like I used to when I was pregnant. I hid near the priory until it passed. I feel so so so sad today, i miss Jamie so much - I just want to hold him again. I really regret not bringing him home before he was cremated. We talked about it at the time as I think Gary wanted to but in the end we decided that we couldn't cope with that. And it was probably the right decision but I wish I'd been stronger and been able to bring my boy home, even just for a little while.

I keep playing back the moment we saw Jamie after he had died, when Kaye carried him into intensive care from theatre. He looked so peaceful and asleep and so free of all the tubes and wires which he had been attached to since a few minutes after he was born. I remember a sobbing scream and I think it must have been me. I remember cuddling him and willing him to wake-up and kissing his cold head and stroking his hair, which was so so soft.
I remember watching my husband hold his son and wishing that I could have given him a healthy son. I remember feeling in shock, not accepting that it was real.
How does someone live with this pain for ever?
I am so lucky to have gary and our girls, to have such fantastic support from family and friends and I cling to that when I feel good and happy. On most days I feel ok to happy and on some days I feel very happy and these days are fantastic, I don't think about Jamie every few seconds and I feel like I'm coping. But then there are days like today when I am just consumed by my grief, I feel sadness right through to my bones and I feel like my heart is truly breaking. why did we have to lose jamie, how can that be right or fair, why does life have to be so cruel?

2007-09-12T10:11:00.000+01:00

It's the little things that are really hard to handle at the moment. I walked home from school this morning after dropping off Alice and Lucy and I should have been pushing a pram but I wasn't. I feel a bit lost because I was meant to have my three children with me.

It has just dawned on me that in a year's time, both of my girls will be full time in school. I will have to plan more work for myself cause I'll go mad with too much time on my hands. I wasn't supposed to be worrying myself with this stuff yet, I was meant to have Jamie with me until he started school, with me slowly building up my business. Now I'll have to rethink, replan, work out what I'm strong enough to do.

I miss my little boy so much and it's hard to think ahead at the moment because I'm scared I'll never be strong enough to cope with missing Jamie and having a normal life again. I guess I'm a bit low at the moment. I knew it would be hard to cope with the girls going to school and nursery so I guess it's just another adjustment that I have to deal with.

JAMIE

2007-09-11T09:37:00.000+01:00

A few seconds old

A cuddle with me before he was taken to SCBU

In SCBU - about an hour old

In Intensive Care just before his first operation - 5 hours old

In intensive care after transfer to The Freeman - 2 days old

With his beautiful sisters - 2 days old

My poorly boy - 3 days old

This was taken the morning before Jamie's heart surgery

a gorilla has brightened my day

2007-09-10T12:52:00.000+01:00

http://www.aglassandahalffullproductions.com/

love it, love it, love it

2007-09-07T19:37:00.000+01:00

I've had such a lovely week. Alice has returned to school and she loves it, Lucy has had her nursery visit and she starts on Monday. I have felt happy and peaceful, I haven't cried often, I have been able to talk about Jamie and feel peace that he was so poorly and now he he isn't suffering anymore and feel happy that we had him for those 3 days and he has left us with memories and strength as a family.

But today I am so so lost again and I'm so angry. Why wasn't I allowed to keep my boy, I miss him so much and I want him back. I would do anything to hold him, to kiss him, to stroke his hair, to tickle his feet, to just have him back. I am a good mum, I love my children, Jamie was a very wanted baby and I feel his loss everyday.

2007-08-29T20:40:00.000+01:00

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

2007-08-28T10:11:00.000+01:00

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

2007-08-28T09:43:00.000+01:00

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

2007-08-28T09:40:00.000+01:00

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

2007-08-17T11:05:00.000+01:00

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

2007-08-13T20:38:00.000+01:00

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.

2007-08-10T19:50:00.000+01:00

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.

2007-08-06T18:45:00.001+01:00

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

2007-08-06T07:48:00.000+01:00

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

2007-08-06T07:19:00.000+01:00

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

2007-08-02T07:27:00.000+01:00

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.

2007-08-02T07:15:00.000+01:00

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.

2007-08-02T07:09:00.000+01:00

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.

3 weeks ago

2007-07-30T06:38:00.000+01:00

It's 6.30am on Monday July 30 and 3 weeks ago my waters had just broke and I was in a panic about getting to the hospital before I had my baby in front of the girls. Three weeks ago I was so excited because I was going to meet my baby and I was so full of hope that our baby could cope with everything because I didn't want to believe that he could be as ill as we thought.
It's three weeks ago since I met my little boy. I was already in love with him but meeting him was the most amazing thing. It is three weeks since I saw his face and saw myself. It is three weeks since I had three children.
Today we are collecting our son's ashes and I just don't think I can bear it.

Looking at Jamie's picture last night, I lost it. I so need my baby to hold, why don't I have my baby to hold. I held Jamie a lot after he had died but when he was alive I was only able to hold him for a few seconds after he was born. For the rest of his life he was in an incubator attached to tubes and wires. We still had some precious and special moments with Jamie but I miss him so much it hurts and my arms feel so empty.

Feeling very sad

2007-07-28T07:44:00.000+01:00

Ever since Jamie's cremation I have cried alot. I think I cried all day on Thursday - everything from quiet sobs to loud uncontrollable sreams. I cried in the park with the girls yesterday, too many little babies. I even cried quietly in the sandpit. A baby was crawling towards me and I sat frozen in fear that it was going to touch me but it was rescused by his mum just as it reached my feet. I can't cope with babies at the moment, too much of a reminder of what I have lost.

Since Jamie died two weeks ago, Thursday was the most desperate I have felt for my boy. I wanted to hold him and have him back so much. I feel so so so angry that our baby was taken away from us. we are good people, we help other people, we don't deserve this, we don't deserve to have our baby taken away from us.
I love my boy so much and he was such an amazing and strong baby.
On Thursday I felt like I was losing my mind. I was planning another pregnancy - which I know I can never have because of the increased risk of another heart defect and my age means a higher chance of a chromosome problem. We can't go through another high risk pregnancy with the possibility of a poorly baby, it wouldn't be fair on us, the girls or the baby.
I was even thinking that we could adopt or even buy a baby - crazy idea but I felt so desperate to fill the emptiness.

I feel so angry because a year ago I longed for a third child and when I became pregnant I was so happy, I felt complete. The third child longed for had just been part of my imagination but now he has a face, a body, a name and a smell to remember and I have to imagine what could have been the rest of his life. I guess that makes me lucky, I have those things to remember, to cherish, I had my third pregnancy, I had my beloved third child.
But I feel so angry because I want my boy but I can never have him back now and I really don't know how I am going to cope with not having him for the rest of my life. At some point this has to get easier but for now forever seems like a very long time.

This week

2007-07-28T07:20:00.000+01:00

we decided to take the girls to Lambley for a few days, we wanted them near us but we were so tired andupset it wasn't fair on them and they had the best time so it was a good decision, even though we missed them ALOT.
On Tuesday we went to see our boy again. The original plan had been to see him in the Chapel of Rest at the hospital at 7pm but the funeral directors needed to collect him in the afternoon to get him ready for his cremation. So we made our way to Go As You Please at 3pm.
We are new to all this and we really weren't prepared for see our beautiful little boy in his tiny white coffin. It really did look so small. We spent quite a while talking to Jamie and crying for him and for us. I had thought I would be able to hold Jamie again but he looked so peaceful in his coffin. It probably wouldn't have been a good idea to try to cuddle him either, his head was perfect but his body was decaying and it felt better to leave him where he looked like he was asleep.
When we were having to think about Jamie's funeral we said we didn't want to see him in his coffin but I think it was good that we did because it made it very real. Had Jamie been in a Moses Basket again I would have been distraught because he looked like he was fast asleep. Even though he was in his coffin, I was still willing him to wake up.
In his coffin we placed some things to keep him company and a copy of The Hungry Caterpillar.
We gave him lots of kisses and then it was time to go. We decided that we wanted to put the lid onto his coffin, again I think this was the right thing for us to do to try and achieve closure, reality. The plaque on his coffin read Baby Jamie Smith.

On Wednesday Jamie was cremated at 9.30am. On the way to the crematorium I heard a song on the radio which seems to fit and I'll always remember it as Jamie's song now. Not my usual choice of song - You'll Be In My Heart by Phil Collins - but it is from the Tarzan film, which I have watched with my girls and would have watched with my boy, had he lived.
We didn't want to go into the chapel but we saw Jamie's coffin, with his sunflower, being carried into the crematorium and we stood outside, crying and clinging to each other while Jamie's cremation took place.

Some crematoriums are unable to save ashes from small babies but the Bereavement Officer at The Freeman said that this crematorium has never let her down yet and it hasn't let us down either. We have some ashes, so now we can plan our final goodbye to Jamie at the end of the pier in Tynemouth.

Donations to the hospital

2007-07-23T18:03:00.000+01:00

Many people have said they would like to make a donation to the hospital, which we will also be doing. If you would like to make a donation to honour Jamie you can send a cheque (made payable to Children's Heart Unit Fund) to:
The Children's Heart Unit Fund, The Freeman Hospital, Freeman Rd, High Heaton,
Newcastle upon Tyne, NE7 7DN.
If you state that the donation is in honour of Jamie Smith, who died on July 12th aged 3 days old, to buy equipment for the Paediatric Intensive Care Unit, the charity will ensure that the unit gets the money.

xx

tidying up

2007-07-23T17:40:00.000+01:00

We've had a big clear out today. Anna arrived at lunchtime to take the girls for the afternoon so we decided to take lots of things to the charity shop and to the tip. All the things we were keeping for our baby - the baby toys have gone, we said an emotional goodbye to the rocking pony, which was much loved by our girls when they were very little, all their small clothes have gone (which would have gone anyway because they are all pink and girly), the small ball pool, the potty, the trike.
The cot is going to the charity shop tomorrow and we are taking the pram and car seat to the children's ward tomorrow night.
The drawers are still full of newborn baby clothes and Jamie's hospital bag is still full of clothes and nappies - I think it will be a long time before I can part with those.

And I wonder why I haven't stopped crying today. Another emotional week.

and life goes on...

2007-07-23T17:33:00.000+01:00

Things haven't changed, everything seems to be back to normal, which is both comforting and heartbreaking.
We get up and make our tea and coffee and breakfast for the girls and now its summer we plan our day. Our girls are a blessing, they are perfect in a normal, hyperactive, driving us bonkers kind of way but sometimes when I look at them and I cuddle them I feel sad for what I have lost and for what I can never have with my boy, he will forever be a newborn baby and I can only imagine the rest.

It all seems too soon. I never imagined that I would be with the girls at the start of the summer holidays, I had prepared myself for being in hospital with Jamie for weeks/months and juggling time with the girls who would be with nanna and grandad. I really never thought Jamie would be gone so soon, or at all, I hoped he wasn't as poorly as the doctors suspected but he was much more seriously ill that anyone thought. Alice wishes she had a magic wand so she could go back in time and make Jamie alive and healthy. And so do I.

2007-07-23T07:44:00.000+01:00

A new baby was crying in town yesterday and I cried. Such a new life, such basic needs and parents oblivious to the precious gift they have been given.
My baby was so wanted, I desperately wanted a third child, not just a baby to feed, to hold and fall in love with. I wanted a child to nurture, to watch him grow, play and develop, to play with his sisters, to make friends, to give us joy, to wind us all up, to make us laugh, to make us cry, to hold and to fall in love with.

I had my third baby, I fell in love with him, I kissed him, I held his hand, I stroked his head, I felt his soft curly hair, I felt his chest as he breathed, I tickled his feet, I saw his eyes smile at us.
But all I want to do is scream and cry because why was my baby taken away from me, why did our baby have to die.

we have survived the first week

2007-07-19T20:09:00.000+01:00

Jamie died at 10.35pm on Thursday, July 12th - one week ago.
I miss my boy so much, I feel empty and I feel like I have lost a limb. All I have done is cry today because I wish it was so different, I wish he had been born healthy and strong and he was here with us now but I can't ever have him back, he is gone forever and I have to remember the precious times with him as positively as I can.
Grief is a strange thing. I've never experienced it before. It highs highs and lows. I am so proud of my little boy, he was so beautiful, he was so strong and he was such a fighter. I am glad we met him and I am so glad he hung on long enough to meet his mummy and daddy. During my positive moments I feel that he came when he did to meet us, it has been so much more of a positive experience because we met him, had he died inside me I am sure it would have been much more traumatic. During my bad days, I question whether I did anything wrong and would he have survived surgery had he been bigger and born later - I had no say in this of course but I guess I will always have questions.
We are also experiencing plenty of up times - thanks to the girls and to each other - but I wonder whether we are exhausting ourselves by keeping busy and are we going to crash at some point. Only time will tell. But we are determined that our family will be stronger because of Jamie - we will value the girls and each other much more, there has to be a reason for all of this.

Jamie is due to be cremated next Wednesday. We have chosen not to have a service as we can't cope with 'performing' in public and we certainly can't cope with seeing a tiny coffin. Jamie's ashes will be returned to us and we will have our own goodbye with the girls by scattering his ashes and throwing sunflowers from the pier in Tynemouth at sunrise. I'm sure many people would have attended a service, to show their support for us, but Jamie was so little and we need to keep this to ourselves.

And now I need to cuddle my husband.

My boy Jamie

2007-07-16T05:02:00.000+01:00

Jamie was born at 12.30pm on Monday, 9th July. He looked so strong and healthy when we was first here. His Apgars were 9 at 1 minute and 10 at 5 minutes, he cried healthily and the paediatrician was amazed Jamie looked so well. He did have an osoephagheal atresia and the surgeons operated that night. At 2am the surgeons told us the operation had not been a success, they were not able to sew together the two pieces of tube as the stitches kept coming apart. They would try again in 8 weeks time and Jamie was to stay in ITU for that time.
The heart scan was the next day which didn't look good, Jamie's heart was deteriorating and he needed to be transferred to the Freeman that night. I think I knew then that he was going to die, he just seemed so small and so poorly and I knew we would need some kind of miracle.
As my boy was prepared for transfer, he was sedated but he was still awake, looking at us quite happily from inside his incubator.
By midnight he was settled and stable at the Freeman. Another scan was done and the consultant made some better measurements. He believed Jamie's heart wasn't as bad as initially thought, that the left side would grow to match the right but they needed to fix an artery which was too narrow and which they needed to do within a couple of days to keep Jamie alive.
Atleast this gave us a little hope.
On Wednesday we saw Jamie for a little while, he was fast asleep because of the drugs so we came home to see the girls, who we hadn't seen since we rushed out of the house on Monday morning when I was in labour. I so needed their cuddles.
We took the girls to see Jamie. Lucy didn't really undertstand but Alice was pleased to meet her brother and she asked lots of great questions about all the equipment Jamie was attached to. She kissed him and stroked his arm and his fantastic head of hair.
That afternoon me and Gary spent some really precious time with Jamie, thanks to Kaye the amazing nurse looking after Jamie. We sat and talked to him, we washed his face, made sure his dry mouth had some moisture and we washed his beautiful hair. That time was so precious.

We arrived back at the hospital early the next morning to spend some time with him before surgery and I am so so glad we did this. Again it was such precious time and it will stay with us forever. Again we talked to him and kissed him and stroked his hair. While at The Freeman Jamie had been asleep but on Thursday morning he woke up, he had a look about, he stared at his mummy and daddy and blew some bubbles. He had very ticklish feet and, at one point, it looked like he smiled - obviously it wasn't a real smile but atleast he can remember him looking happy. Shortly after that the anaesthetists were there to prep Jamie for theatre so we said our goodbyes, we kissed our boy, told him we loved him and that we would see him later.

Surgery was only supposed to last for a couple of hours, but it turned into the longest day of our lives. We had a call in the afternoon to say that Jamie had been put onto heart bypass as he wasn't coping well with surgery. We couldn't cope after this and spent the afternoon crying and worrying for our boy. By 6 o'clock we had a call to say that it wasn't looking good and we needed to prepare ourselves for Jamie dying. We headed to the hospital to be told that Jamie was still fighting but he was bleeding heavily and other internal organs had now been damaged.
The surgeon didn't want to give up and wanted to get Jamie onto life support. I didn't understand why at the time, I just kept saying that I thought it was better to let him go. Kaye understood what we were saying. Looking back now I think they were trying to do this for us, so we could see our boy alive one last time. Eventually - probably after about 2 hours - Kaye came back in and asked us if we wanted to surgical team to stop. We did. We wanted Jamie to be in peace now.
The surgeon came in and said they had all tried everything to keep Jamie alive but his body just wasn't strong enough to do. Again he said that when he was stitching, Jamie's organs just couldn't hold together which has left us thinking there was something else the matter with Jamie that was mcuh more serious than we ever thought. He did managed to make the repairs to Jamie's heart but it was tougher than he expected because he couldn't stitch the tissue and when they tried to get Jamie off by-pass Jamie's body just couldn't cope and that was when he started to bleed a great deal and other organs became damaged.
It probably sounds strange but it was a relief to find out that Jamie had gone that night - his pain was over and he was now at peace. Our hearts were breaking but Jamie couldn't continue and he fought as long as he could.
We asked whether we wanted to see him alive one last time but we didn't want to see him on the operating table we wanted to remember him awake that morning. Kaye wrapped Jamie up for us and and we sat with his for a while, we got to have our cuddles - I hadn't held him since he was born and I had been longing for cuddles all week - and more kisses and time to say our goodbyes and our love yous. The rest of the night is a blur, I can't remember leaving the hospital, getting home, going to bed.

I do remember going for a walk with Gary on the beach at about 5am. It was a beautiful calm morning, the sea sounded perfect lapping onto the beach, the sun was just coming up and it was so quiet. We held onto each other and cried on the beach to try to come to terms with what happened.

We headed over to see the girls at about 7. Lucy didn't understand but Alice was so upset, it really shocked us as to how much she cried but she is an emotional creature and atleast she could express her grief and ask questions rather than hold it all in. She seems quite confused and angry now, she doesn't understand how a baby can die and she seems to want to blame someone, which is all probably very normal. Over the last couple of days she has made some inappropriate comments as well, as if she needs to invoke a reaction from us and others about Jamie and our sadness. Again I think this is probably healthy for her to try to understand what has happened and to try to understand our grief.
We were going to leave the girls at Lambley for the weekend but after Graham and Joyce took the girls out for the afternoon on Friday to give us a chance to rest, all we did was follow each other about the house, lost and crying so we decided to being the girls home, to try to get back some normality. we decided that they needed to see us crying and it was healthy to do so. I'm glad to have them home as they are a great distraction.

I love and miss my boy Jamie so much and I so so so wish he was here healthy and happy with the family who love him but he was so poorly and I get some comfort from that - he died for a reason, not by accident or neglect or by something mysterious, his body was jst too fragile to live.

Annie has helped me cope by saying that Jamie was determined to meet his family and I get a great deal of comfort from that. Jamie was so poorly that I'm sure he could have died while I was pregnant, the consultants in fetal medicine were always surprised as to how well he was doing. I got to give birth to a beautiful baby and we got to spend some very precious time with him before he died. we have to be grateful for that. It is still so early in our grief but hopefully we can continue to take some comfort from this and to concentrate on and enjoy our girls and make their life a happy and fun one.

I always wanted 3 children and nowI have 3 children, but one of them is now an angel who is at peace. Alice has asked us whether we will have another baby but despite however much we desire another baby, it wouldn't be Jamie and he can't be replaced and me and Gary can't go through this again. It was been an emotional pregnancy and the last week has, at times, felt like being in hell. I couldn't do it again.
I don't regret any of it for a second though, I loved being pregnant with Jamie, he made me happy and I feel blessed to have had him, even for such a short time. He was so beautiful and he was a fighter, he battled as long as he could and we will always be grateful for that.

At time when I was pregnant I questioned whether I was happy knowing our baby was ill but now I am so glad I did know. I think the shock at his illness and death would have been too much to bear. If we had thought we had a healthy baby who then died within days, it would have been too much. Jamie's death is incredibly hard to cope with and we have a very long way to go to come to terms with it but I think we were both prepared to some extent, we knew he was poorly and we knew there was a huge chance he might not make it. We filled ourselves with hope - we had to - and dreamed he would make it but in the end he was too poorly and we both feel it was better for him to have gone now, rather than face longterm serious ill health, attached to drips and machines for months and months.

I feel angry that I couldn't make a healthy baby, that I have somehow let Jamie down. In my heart I know that isn't true but my grief is making me question everything. I miss my little boy so much but I have the comfort of having Alice and Lucy and I can only hope that this pain eases eventually because our boy is never coming back and we have to remember those special precious times of his movements in my tummy and being with him when he was alive.

2007-06-28T10:39:00.000+01:00

I'm 36 weeks tomorrow and I really don't think I will have to worry about being induced at any point. I'm starting to get lots of 'twinges' - backache and braxton hicks. Hopefully it means baby is coming in a couple of weeks - no sooner please, I have 2 birthdays to do!
It definitely feels like my body is getting ready for birth - which is exciting and terrifying at the same time. But it is helping me to think that my body can do this again, it will remember what to do and it doesn't matter whether I am in hospital.

cardiac unit

2007-06-27T09:42:00.000+01:00

We visited the cardiac unit at the Freeman on Monday. I am very glad we went but it was so upsetting seeing babies and young children hooked up to different monitors and tubes and knowing that my baby could be one of them in a few weeks time.

The Children's Ward is small, the baby bay has about 4 cots with comfy chairs for parents to be with their baby. Parents are encouraged to do normal things with their babies - hold, cuddle, play and feed which is a relief. There are also different bays where parents can stay overnight and it looks like babies can stay in their with parents if they are not too poorly. When we find out the true health status of our baby we can find out more about co-sleeping and breastfeeding.
The staff seem very good and human.

The intensive care unit wasn't as scary as I thought it would be - it is bright and open plan so you can see all the children in there. It is very noisy with lots of staff - each child has its own nurse - and machines buzzing and alarming all the time. We spoke to the head of the the ward, who was lovely, and she said that she encourages parents to take breaks, to sleep, to eat and to see their older children because there will always be someone with the baby and parents get too exhausted to cope. I guess we'll find out in a few short weeks how well we will cope with all of this. Hopefully our baby will be strong enough to go straight to the children's ward rather than intensive care. It looks like one of us will be there at night and, depending on whether I can breastfeed, it will probably be me most of the time so hopefully we can develop a routine of seeing the kids during the day and evening.
It seems so strange to write about a future only a few weeks away and not know what I am going to be doing, or capable of doing. The highlight of visiting the unit was seeing how busy it is, we are not on our own, there are plenty of other parents going through the same, or worse, than us and it has reinforced what the cardiac team are capable of doing everyday. It all comes doen to whether our precious baby has the strength to cope with the battle it faces.

2007-06-27T09:31:00.000+01:00

Feel a strange mix of numbness and upset this week. I found out last night that a couple on my last course lost their baby after their homebirth. Marcelle popped round last night as they are friends of hers. Apparently the baby was born safe and well but after a little while developed breathing difficulties and died. I'm left wondering whether the baby had health problems and may have died anyway. I feel devastated for this couple as it is so cruel to have a baby taken away like that. I feel very very mixed up about it as I can't help comparing it to my own situation. Maybe their baby had a heart problem that only became life threatening after the birth. It has made me feel very fortunate that I know about my baby's heart problems, that I know there is a risk that it may die, although I pray and hope that this won't happen.

A very selfish part of me feels like maybe my baby stands a chance, their baby has died and mine can't die as well - surely? I know this isn't true and life doesn't work like that but it doesn't stop me from hoping that my baby will make it. All of this has reminded me how fragile life is and how death is an inevitable part of life, even for babies - some babies are just not meant to live, their time with us is brief.

note to self...

2007-06-21T09:52:00.000+01:00

...when I get broody again (as I inevitably will) remember how hard it is at the end, especially when I have other children to look after!! I have the most beautiful big baby belly but I am soooo uncomfortable now, it hurts if I walk for too long, I can't get comfy at night, I have constant heartburn, I can't bend over, I'm short-tempered and all I want to do is sleeeeeeeeppppp. I think I can safely say this will be my last pregnancy, it's been a great adventure but the last couple of weeks have been so hard and I think I'm too old to do this again.
And there ends my positive advert for pregnancy.

being on the medical rollercoaster

2007-06-18T09:41:00.000+01:00

It's a strange thing, seeing consultants every 2 weeks to try to work out how seriously ill your baby is. There's lots of guesswork and words like if, possible and may, while we - the parents - are left to analyse all of this and cope with the question - is our baby going to die?
Sine we were referred to Fetal Medicine at 22 weeks we have been told our baby's heart is fine, then it wasn't fine, we were told our baby could have a serious chromosome problem which would mean it wouldn't live - so we had an amnio and baby got the all clear - we were told out baby wouldn't grow very well - so far it is doing brilliantly and its estimated weight is almost 5lbs at 34 weeks. We were also told I would probably have too much amniotic fluid because of the potential stomach problem. In the last 2 scans my amniotic fluid has been high but still normal and I think this is just how I make my babies, this pregnancy is no different. This week my fluid level has actually gone down, but not down as much as they would expect whicih leaves me wanting to scream BUT IT'S GONE DOWN!! Surely if I had a serious fluid problem the level would be increasing not going DOWN????????

With each scan, since they told us about the heart problem about 2 months ago we have been waiting for the left side of the heart to deteriorate but it hasn't. The consultants were pleased this week to see that the left side of the heart is doing well.

I'm not criticising any of the consultants with any of this rant - they are fantastic and they are just doing their job but, at times, it has been so hard. To the consultants we are just another couple with a potential poorly baby, they do their scans, make their comments but we are left to cope with the reality of our situation.

As I'm 35 weeks now the consultants agree that they can't really tell us anymore - although I'm sure we will have more scans before the birth - and that I need to focus on the birth because the true diagnosis of the baby's condition can't be given until he or she is here. So we're back at he hospital next week to talk through the birth, what happens afterwards regarding testing the baby and how do we keep some control and understanding of everything.

Induction at 39 weeks has been suggested which I will not be having. I'm confident that my body can do this by itself, I've never had any problems before and I've never reached 40 weeks before. And I don't understand why the need to induce when the baby needs to be as big as possible to cope with surgery. The conversation involved lots of ifs, possiblys and mays so, in my eyes, it's open to discussion!

2007-06-13T12:49:00.000+01:00

I cried in Mothercare today, among the small socks and sleepsuits

I'm in my 34th week (how did that happen?!!)

2007-06-11T20:56:00.000+01:00

I love my enormous bump - it's big and round and beautiful ( as well as uncomfy sometimes as well but I won't dwell on that!)
I love the way my belly is lop-sided, as you favour the left side.
I love the way you stretch out, so I can feel your arms and legs and your bump rolling about at the top of my bump
I love the way I can feel your head turning against my pubic bone
I love the way my belly goes hard as it gets ready for regular Braxton Hicks and then labour.

Being heavily pregnant is tiring and, at times, not very comfortable and I can't walk too far because I get so tired and uncomfortable but I am loving it. I never thought I would experience this again and I feel very blessed that I am pregnant again, that I have had the chance to bind with my third child, to feel him or her grow inside me and to wonder whether I have a son or a daughter.

My biggest fear when thinking about trying for a third baby was whether we were tempting fate after havign 2 healthy children. I decided then that I don't shy away from things because of fear of because they might be hard or challenging. I think I underestimated that and I feel incredible guilt over what the girls and the baby may experience over the next few weeks and months BUT I love this baby and, yes, it has been incredibly emotional but I feel blessed, I have been on a journey, I have made another beloved child and I have been so very very happy.

some days...

2007-06-11T12:29:00.000+01:00

I feel like I could cope if my baby dies. Our life won't be empty, we'll have each other and we'll have our two amazing girls to keep us busy and happy. People lose babies everyday, of course I'll cope.

But on other days I wonder how I'll cope, how will I manage to get up every day, how will I manage to look at my friend's babies and not think of what I have lost and I worry that I will spend the rest of my life mourning for the baby I lost.

2007-06-05T09:45:00.000+01:00

For the first time in this pregnancy I feel real regret and I feel selfish for wanting another child, not for the pain me and Gary are feeling - we're adults and we'll deal with it somehow - but for the girls and for this amazing baby, kicking away inside me now. How much pain will my baby have to endure on the long journey to fix his or her heart? It has such a long and hard fight ahead, I truly hope it is up for the battle.

Never thought I would have anything in common with Ulrika

2007-06-04T16:03:00.000+01:00

I want to keep this to refer to, so I know I am not on my own. I've also been reading India Knight's blog about her daughter who has had to have major heart surgery. It doesn't make very pleasant reading but it is a reality I will soon have to face so it is a comfort to know about other parents who have faced the challenges of a baby having heart surgery and it can help me work towards some preparation of what to expect in hospital.

Bo and Ulrika Jonsson
My darling daughter Bo has just turned two and a half and with every glance that I throw her, without exception, I count my blessings and my luck. She invariably throws me back an awkward look filled with questions such as ‘Why are you looking at me? Or, why do you keep staring at me?’. And the truth is, I cannot stop staring at her, because it wasn’t that long ago when I thought there wouldn’t actually be a little Bo in my life.
Questions and answers The experience of having a child with a serious heart defect has been enlightening but it has also changed me profoundly. To be told at my 20 week scan that my baby had an abnormal heart was a shock. To be told after my subsequent referral that there was a chromosomal defect, which meant ‘the foetus’ would not even be ‘compatible with life’, was without doubt the greatest shock I have ever had. Grandparents had died, even my own father, but this news came out of a clear blue sky, like a twister whipping up everything in its path and throwing it back down again with an unbeatable force. Never for one moment, in the midst of all the havoc it caused, did I think ‘Why me?’. What I did think was ‘How can this be possible, when my baby has been kicking away so happily inside me?’. I simply couldn’t understand.
My body and mind switched to auto-pilot and I went about my business like a zombie, surrounded by health professionals who continued to refer to my baby as ‘the foetus’. There seemed to be a sense of urgency about the whole case and I was hurried to consider a CVS to eliminate the chromosomal link. My ‘foetus’, I was told had its hands ‘in flexion’ and its knees where knocking together. Terminology such as ‘Edward’s Syndrome’ and ‘Triosome 18’ hung heavy in an air of fear. I felt shunned and disassociated.
It was a long two-week wait for the results of the test. Unbearable. For me and all my family – and what to tell my darling, healthy six year old who waited so eagerly for mummy’s swollen tummy to become something a little more interesting? Finally the news came. My baby had no chromosomal defect – she, and yes, it was definitely a she, ONLY had a heart defect.
What now? I was going to have a baby with a broken heart. A child who would require surgery, medicine, hospital visits, a limited life and God knows what else? Was I destined now to become a woman who would campaign tirelessly for undernourished charities and would never know normal life ever again? Would I be spending my life locked indoors for fear of taking my child out? Would we never again know holidays? Laughter? Fun and creativity? Would I be locked in depression and fear forever? My fears were real and overwhelming. And there appeared to be no answers.
And then came my first ray of light. It came in the form of my referral to Guy’s Hospital’s and its gentle, personable Dr Guerleen Sharland. The second ray of light was her colleague Dr Shak Qureshi. Despite the fact that what they brought me was further complicated information it felt like stepping into a warm house after having been left standing outside in the cold for a long, long time. On hand was a counsellor who made me feel it was ok to cry and my baby was finally referred to as a ‘baby’. I felt I had come home at last.
Despite the complicated procedures they were forced to relay to me, there was optimism in their voices and kind smiles offering reassurance, but no guarantees. And that is how I ended up at Guy’s. That was just under three years ago now.
Bo has had two surgeries there (one open heart) all under the careful hand of the brilliant David Anderson and she still requires a third. It’s been a long old schlep. She’s had infections in her scar, bronchilitis, sickness and diahorrea etc, etc over these past couple of years. I have battled with my fear of her and her condition; my fear of me; my fear of others; my fear of the future and my fear of the present. But somehow I’ve been lifted. Lifted by the people around me. Most of whom I do not even know.
Before too long I received letters from members of the public who themselves were fellow mums of cardiac babies – parents and grandparents, sisters, brothers or people who had no cardiac babies but just bundles of empathy. Each and every letter made me weep with hope and sometimes with the sadness of the stories. And some letters I have yet to reply to. Then, with every hospital visit I noticed there were other parents singing the same nursery rhymes as me at their children’s bedside pre- or post-surgery. Parents and relations I had never known, but with whom I would be intrinsically linked forever, because we somehow shared the same story. I met kind nurses who understood; doctors who would listen, but were sometimes not too great at taking blood samples; and consultants who went about their business kindly as if it was just another day at the office.
I saw how cardiac defects crossed all boundaries. The posh people in the corner were no different from those who could barely afford the fare into hospital. We would all sit together by our children’s side in between dashing back to the fantastic Ronald McDonald’s house for a few hours kip. We never needed any introduction. Sometimes no words at all - an incredible understanding and sympathy and comfort passed between us. And then upon my returns from hospital, there on my door mat shone another ray of light. The ‘ECHO’. I read story after story after story. Some were outrageously similar to mine and I would stand in my kitchen and nod, or weep or smile.
So this is life. Not the life I anticipated and feared 3 years ago. But a life full of love and support; joy and laughter. I deal with Bo’s heart condition in my head on a daily basis. Sometimes when she is particularly perky it is hard to imagine she will ever need further surgery – but I know, of course, that day will come. I fear it tremendously, but have learnt to enjoy the moments I have with her and I’ve learnt something I never thought I would – to treat her like a normal child.
My Bo and our future She has such spirit. She’s stubborn, wilful, a madam, fussy, temperamental and at the best of times she thinks she’s the Queen of England. We tip-toe around her for fear of annoying her, but not for fear of breaking her. I admire her fight and spirit. I feel she will need it throughout her life and particularly during the periods she will spend in hospital. When she has a temperature, as recently as last week, I panic more than I would with my son. My head goes in a spin and I picture horrendous consequences and then I have to give myself a good slap and remember that my worrying will do her no good. I have been blessed with two wonderful children. One healthy and one not so. Both bring me fantastic qualities and I wouldn’t want to change my time with either of them at all. The possibility of a termination with Bo was unthinkable and I’m glad. It’s been unbearably hard at times. At times I have wanted to give up. But then I’m forced to go on for her sake and her brother’s and for the sake of all the other people who have gone on going on.
A third child? I don’t know. I’m supposed to stand a 1 in 50 chance of having another cardiac baby. My pregnancy with Bo was thoroughly miserable. It was punctuated by scans, test and intervention. I hated it - there was so little joy. And whilst something inside me tells me I couldn’t do it all over again – there is something inside me which tells me that perhaps next time it wouldn’t be as bad. Maybe next time things could go right. Maybe something inside me would like me to see if I can do it the right way this time. Although, I have had minor protestations from my son, on whom the Bo experience made a significant impression. He says: “Mum, I think you’re great with two kids”. So who knows? Ulrika Jonsson

another week another scan

2007-06-03T08:11:00.000+01:00

I was so dreading this scan, i really didn't want to go at all and as a consequence got myself all stressed out and had the headache from hell for 2 days before hand. But I am so glad we did go. It looks like the heart is still stable, baby is growing and is very active and we had a lovely scan. The Dr pointed out that our baby has hair, which was amazing and we got to look at the baby's face again - what a beautiful little thing it is. I have more fluid but it is still within the boundaries of normal and, as my tummy is still soft, the Dr was happy and didn't want to reduce the fluid. So we are back in another fortnight to check fluid levels again but to see Dr Moran again to have a closer look at the heart.

It was another good hospital trip and I cam away feeling very positive and quite happy. I just hope and hope and hope that this amazing baby can cope with all of this and fight, fight, fight. We are still clinging to the hope that the stomach problem dosn't exist and that the heart problem isn't as bad as they think.

And my bump truly is enormous - I look like I am ready to have the baby tomorrow, let alone 6-8 weeks time.
So my aim now is to stay as calm and positive as I can - for everyone's sanity and to encourage my baby to grow well - and to get organised for Alice and Gary's birthdays.
And we're seeing Sister Walsh from the Freeman tomorrow to find out more about the heart unit and what we can expect from the care there. The one piece of silver lining about all of this is that the Freeman is about 15 minutes away so toing and froing from there is very do-able. Some families are hours apart and the mums don't get to see their older children from weeks. I'm so lucky that I won't have that because that would make all of this just so much harder and i just don't think i could cope. I have no idea what July and August holds for us yet but I know it won't be easy, it just has to be as nice as possible for the girls and we'll just have to make it up as we go along.

Look what I've found...

2007-05-29T18:53:00.000+01:00

Some journal entries for 2001 when I was expecting Alice. It is great to compare how I am feeling now to how I was feeling then - tiredness seemed a common complaint!
The main points I had forgotten and am amazed it and which totally illustrate the importance of journals is 1) I was pissed off with my parents back then as well and for the same reasons, 2) I was so calm about birth, 3) I knew she would come 'early', 4) even so we went away when I was 37 weeks pregnant(how mad was that!!).
Reading it has also made me realise how much I am expecting of myself now - I have 2 active children to look after, no real chance of a lie-in or chance to rest until atleast 9pm, all the stress of worrying about this baby and I still expect myself to be on top of things and keeping going as normal.

Anyway, here's the journal so I don't lose it:

SUNDAY, 8 APRIL 2001
I go off on maternity leave in 8 weeks and I can’t wait. That leaves me with 6 weeks before baby comes to relax, sleep, do my yoga, watch videos, read and finish my college work off. I’m planning on going swimming as well, or atleast to the pool to do some aquanatal exercises. Anything to help flexibility and to strengthen my body for birth.
I will be off work until the second week of January when I returning for 4 days a week which will be great although I’m sure leaving the baby during the day will take a little getting used to. I think I have gone with the nursery idea as I think I could be more professional than a childminder but I will have to look into it over the next few weeks cause they can get booked up. In fact I might make some calls tomorrow and arrange to see some when I am off work in a couple of weeks time.
I can’t wait to finish work. I don’t feel too tired at the moment so it isn’t too much of a hardship but I don’t have enough time to relax ad I’m not sleeping very well at the moment cause I can’t get comfortable so I do get pretty tired by the time I have finished at work. It will be nice to have time to relax and to do a few things that I won’t be able to do when we have the baby – like read for pleasure!!!!!!!
I really think baby is going to come early. I don’t know how early – hopefully not by too long but I have a really strong feeling that it is going to decide to say hello sooner rather than later.

I still have a very positive attitude about birth. Birth is inevitable, there is nothing I can do about it but try to make it as relaxed as possible and I want to be as prepared as possible. I still believe that having a positive state of mind, trying to be active and remembering that it is only a day of pain will be most helpful. A day of pain, even really bad pain which you know will ease, really is nothing. I’m obviously not looking forward to the pain side of it but if I can use visualisation to imagine being one step closer to holding my baby, I think that will really help as well.
I love feeling baby kicking, that is so fantastic. When I am at work I look forward to the end of the day when I can start to relax, lay down and play with baby by making it move. It loves to kick a lot at about 4am as well. I usually go to the loo round about then and that is when it wakes up and likes to kick about which I love, just laying in bed, dozing and feeling it kick. I can’t wait to meet baby and I can’t wait for Gary to meet baby cause men definitely miss out on a lot of bonding during pregnancy although I think Gary will bond more with baby when it starts kicking out more. It has only been doing it for a couple of weeks and it is due to have a growing spurt again over the next 2-3 weeks so that could increase the kicking until it gets too big to move too much and starts to stay still quite a lot – must read up on that cause I don’t know how much baby is supposed to keep moving as it gets bigger.
I love being pregnant although it is a scary time cause I am not in control of anything, I feel vulnerable at times and I feel frightened of the huge responsibility which lies ahead but I am also excited about all of these things at the same time. It has made me understand and realise the importance of relaxation, being able to spend time with and bond with my baby before it is even born.

Am currently playing Mozart through headphones to baby who is kicking quite nicely. Don’t know whether baby is enjoying it or not but it is provoking a reaction. Hopefully it will help calm baby, especially after it is born.
Thought for the day: Love being a pregnant mum and I can’t wait to be a mum to a baby on the outside.

MONDAY, APRIL 09, 2001

With all the learning I have been doing about myself for the counselling course I have been thinking a lot about my parents, namely my relationship with them. Dad and Rita have just been up to visit which was lovely but I will never see a great deal of them and I think both parties know that. I am happy to speak to dad every few weeks and to see him a few times a year – I’m sure we might see them a little more often now that grandchildren are involved. But we are such different people and Rita does tend to get on Gary’s nerves cause of her family values. She is very mumsy and doesn’t really like anything which differs from her way of doing things. I think she pissed Gary off a bit during the visit, not only because of the whole marriage debate but because she kept saying stupid things like Gary should watch out cause I keep patting my tummy – what does she expect me to do, I’m excited about being pregnant and that stems from the fact that this baby is made from me and Gary, we are making our own little family, we are showing our commitment to each other but that obviously isn’t enough.
She also made comments that she was surprised I was drinking so little alcohol and that I had correct posture (?!!!!!) and it is fine to say those things but it is a little annoying when judgement is passed despite the fact that we see each other twice a year so she has no idea who we are, what we do, what we like…
I’m sure the way we raise our child (ren) will come into question at some point as well.
As regards mum and dad I am pissed off that they haven’t made the effort to drive up here especially as we have been in this house for over a year now and I probably won’t see them until after the baby is born now. I will need to have a word at some point though to let them know that we will not be spending weekends driving up and down the motorway to their house so they can see the baby – they can make the effort and come up here. The journey is too long for the baby and me and Gary don’t want to spend our weekends in the car when it is our time together, we will have work to do on the house for some time to come and we want to do things with our child.
I think a chat will have to take place along the lines of: they have a grandchild they can get to know and build a relationship with (they don’t have that with any other grandchild) but they have to make the effort for a change with their time and emotions not just by throwing money at it.
Mum and dad need to learn that not everything comes to them that they have to make an effort. They don’t really like making an effort for anything. They are not very self less, they always have to get something out of a situation. Well of this situation they can have a relationship with their grandchild rather than feeling bitter and hard done by when a relationship doesn’t form and their grandchild doesn’t know them and doesn’t want to spend time alone with them. And the situation will be the complete opposite with Graham and Joyce cause baby will see a lot of them, especially as this will be their first grandchild.
What I must learn is greater patience with my parents – to be able to state my case and say my piece but not to lose my temper and become unreasonable because I don’t want to ruin the relationship I have with them and I don’t want all the baggage of mum’s lies and lack of understanding regarding the rest of her children and grandchildren to come out and ruin things.
I’m sure having a child will through up more opportunities to discuss problems with my parents, mainly mum and dad as it has to made clear to them that I don’t want the relationship to be based on lies, like my childhood was and for which I have paid.
As long as I am able to handle it calmly and maturely, even though they can’t, I will be happy that I have handled the situation to the best of my ability.
TUESDAY, MAY 01, 2001
I had a look at some nurseries as well and I have decided that the one in Monkseaton is the best one by far (from my limited experience at least) I definitely got a good feeling about it as opposed to the others.
After traipsing about all day on Wednesday I felt really knackered that night so when I got back and had a snooze and I think I had a bath as well but that night I started to get period like cramps with low back pain. I really didn’t feel very well but I ignored it and just stayed on the sofa before going to bed after ER had finished. When I saw Judith the next day she said that she was concerned that I had had a threatened labour but as the pains had gone away I wasn’t going to go into labour. However she said that I needed to take it easy as it was my body’s way of telling me to stop and take it easy. She said if I had those pains again I should go straight to the hospital cause it might be labour. This has really upset me cause it has made me feel very vulnerable and fragile and I am scared of over doing it cause I didn’t do that much walking around on Wednesday, although I suppose I was on my feet for a while.

SATURDAY, MAY 05, 2001
Shouted at Gary and then cried lots earlier for nothing at all. I must have been tired cause afterwards I went to sleep for about 3 hours and then felt much better. Not quite as irrational and paranoid.

SUNDAY, MAY 5, 2001
I’ve had such a lovely day today mainly cause I’ve been doing nothing. I promised myself a lazy day today to recharge my batteries after a week at work, especially as I have to go in tomorrow, a bank holiday. I do feel much better today as I was really tired yesterday although I was okay yesterday until midday when after going shopping and sitting in the sun at the Wooden Dolly I felt really really exhausted.
All I’ve done this afternoon is read the paper, watch The Fugitive and lay on the sofa playing with baby. It was a bit quiet earlier but has perked up this afternoon. I think it is probably going through a growing phase and, as I’m quite tires, it doesn’t want to kick too much. I can feel baby moving, changing position but sometimes it doesn’t kick as much as other days.
I am so looking forward to finishing work in 4 weeks time - 17 ½ days to be precise – not that I’m counting. I’m definitely tired and I would like a little time to relax before baby arrives and I know I will be much more relaxed when I know I haven’t got to think about work for some time, it can allow me to focus on preparing for the arrival of baby, getting some rest, reading and watching videos. I’m also convinced that baby will be a little bit early as well.
I know I have said this before but I am so looking forward to having baby with us. I want to meet my baby and I want Gary to form a bond with baby cause I feel that I have started that process already through playing with it and getting it to kick in reaction to my stimulation.

SUNDAY, MAY 13, 2001
God I am ready to leave work – only 3 weeks to go!!!!!!!
It’s not really the thought of actually working that is the problem, it’s more a case of getting to work. The thought of the journey, a relatively short and simple one, makes me feel knackered, let alone all the rushing around I have to do all day in the office.
Feel very tempted to pull a sicky tomorrow. I probably won’t cause I hate lying and I’ve never pulled a fake sicky at the Chronicle but I do feel very tired. I’ll see how I feel in the morning. If I did that would leave me with only 3 days to work this week cause I’ve got Friday off. In fact I’ve got a long weekend next weekend cause I’ve got the Monday off as well.
Apart from tiredness I feel fine. Back has started to ache a bit but I think that is mainly because I am sitting down for so long. I just need to think that in a few weeks I will be tired with a newborn to look after but I won’t feel worried about my tiredness harming the baby cause it will no longer be inside me. I need to remember that when I am in agony in labour, that all that pain is worth it cause it will end weeks of feeling very uncomfortable with a growing baby inside me and all that that means with back ache, heartburn, lack of sleep, tiredness, etc. I know I probably won’t feel this way when I am in labour but I really can’t wait to meet baby now. I feel like I have bonded with it through touch and speaking to it, I know it knows when I touch it compared to anyone else, I love it when it just pushes against my hand when I apply pressure to my tummy. It doesn’t need to kick it just moves against it and I think that is a comfort thing cause it knows it is me doing it. That’s what I feel anyway.

SATURDAY, MAY 26, 2001
I LOVE MY BABY, I LOVE MY BABY, I LOVE MY BABY.
This should come as no great surprise but I do. I feel like I’ve started to bond with it already and in only a few short weeks now I will get to meet him or her.
This pregnancy has gone really quickly. It doesn’t feel like 5 minutes since we were only 7 weeks pregnant – now that is all there is left of this pregnancy!!
I still feel pretty well as well – although I am very tired now and I tire pretty easily now but I only have one more week left at work. Well 4 more days to be precise!!!!!!!! Don’t get me wrong I still love my job but I am too tired and preoccupied with giving birth and becoming a parent to concentrate on it properly. I am definitely ready to have a break before I go through labour and cope with a newborn baba.

WEDNESDAY, JUNE 13, 2001
Have been off work for a week and a half now and it is, in a word, GREAT. I feel much more relaxed and bonded with baby who has taken this time to grow a little bit more and, as such, I can regularly feel a foot or a knee in my side on a regular basis.
I have arranged for the birth pool to arrive a week earlier (from 37 weeks instead of 38) as we can stay at home from 37 weeks and I want to feel secure in the knowledge that I can use water to help with pain relief. I have also arranged a night away in a hotel the day I get to 37 weeks. It looks like a very nice country hotel in County Durham (not too far away for obvious reasons). I fancy the break but, more importantly, its for Gary to have a break, catch up on sleep, go for a walk or a dip in the pool and eat some good food. Hopefully baby won’t come before then.
Since Friday I have been having strong Braxton Hicks with accompanying back and abdominal discomfort which peaks in the middle of the contractions. Sometimes they come every 20 minutes for a few hours and then they space out over a few hours. They definitely aren’t the real thing but I think they also have something to do with helping baby engage its head. I’ve no idea whether this is all an indication of imminent labour or not. I was upset and panicky about it on Saturday but I feel much better now cause I can’t do anything but watch what happens, keep timing the contractions to see if they get closer together or change in intensity.
FRIDAY, JUNE 22, 2001

I feel very fed up!!!!! Have been for a couple of days now.
I just feel so big and uncomfortable. I’m not sleeping properly, my hands and arms ache cause I’ve developed Carpal Tunnel, my bump is very big and heavy and I’ve got enough stretch marks to make me feel like a road map. The truth is that I don’t mind any of these things really cause it leads to us having our beautiful baby in a few weeks – I just wish I could sleep easier.
Occasionally I start to feel scared about labour, how long it will last and how much it will hurt but then I have to remind myself that there is no point feeling scared cause I have to go through this, all I can do is try to remain as positive as possible and to work through the pain which is going to lead to me having our baby. I say all of this now and will be a different story when I have to cope with unbearable pain but there is no point in panicking cause I have to go through it