Looking for support

[ShazG]

Hello everybody,

I lost my baby boy Jacob in February 2005 aged 2 months. He was born with a genetic disorder called Patau's syndrome which is caused by a genetic abnormality (like Down's but much worse). We had no idea before he was born. It was not picked up on the scans even though he had a mishapen heart, extra digits, cleft palate etc. So obviously it was a real shock.

The two months he lived are hard to describe. We pretty much knew he was going to die it was just a case of when. We wanted to enjoy him for the short time he was with us but it was so hard. For the last two weeks or so he seemed to be suffering and it got to the point were I wanted him to die. Not only to relieve his suffering but also ours. That is hard to admit.

I have felt pretty numb about it ever since. I looked at some pictures of him the other day and it literally wrenched my heart to see him looking so poorly, but most of the time I don't think about him.

This leads me onto my parents who I lost in a motorbike accident 10 years ago when I was 24 years old. They were killed immediately and I never went to see their bodies as I was advised not to. I was very close to them both, particularly my mum, but I don't feel that I have ever really grieved.

On one hand, I might just be the kind of person that handles grief in a detached manner but I also feel that somewhere deep down there is a terrible pain and yearning for those I have lost that I just can't get to. I want to feel more but don't seem able to. I want to be able to scream and cry and shout at the world about the unfairness of having my parents and my son taken from me. I want everybody to know how horrendously painful it is and how my life will never be the same again. But it just doesn't seem to be in me.

Can anybody else relate to this?

ShazG, I'm so so sorry for your loss

I have no experience but I didn't want your post to go unnoticed. There are lots of women on here who unfortunately share your loss though and there is a thread for bereaved parents......you'll see it in bereavement.

It's understandable that the loss of Jacob is bringing back the memories of your parent's death and it must be a very difficult time. Have you spoken to a bereavement counsellor at all? It sounds like you might benefit from it to help you get your head round and finally grieve for your parents.

{{{{{{hugs}}}}}}}

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I feel so for you.

When my dad died I felt like you do. I wanted to feel angry he'd been taken from me but somehow I couldnt really outwardly show anything. He was everything to me, he brought me up on his own and was the best father you can imagine.

I felt guilty for ages that I couldnt express how I felt and questioned whether I could have really loved him because I didnt fall to pieces.

Now I have come to accept that actually, I am probably a strong person. And that whilst not religious I have a strong sense of spirituality, part of which allows me to accept things that cannot be changed.

Im not sure if that helps or not. Everyone grieves in different ways.

hello ShazG

sorry this is eating at you but ime it's 'normal', I mean whatever you feel I think you have to say to yourself there is no right or wrong way. I lost my dh 6 years ago and my fil 3 weeks ago. I still have times that I think of dh and what he and I went through and I have to switch off as it's too painful, I can feel myself wincing at times. The same with my fil, totally expected, he was 83 but it hasn't sunk in yet but I know there is a deep sadness inside which I haven't let go of yet.

When you go through something as traumatic as you have, your mind & body, I think can only cope with so much. I also think that although other people, friends and family go through similar things, I find I can only give so much sometimes. Sometimes I can help, other times I just don't have it in me which makes me feel incredibly selfish but I feel i'm still dealing with my feelings. I hope that makes some sense and brings some comfort perhaps??

Thanks everybody.

I have actually had a whole lot of therapy! After losing my parents I think I became a bit if a shell and completely lost sight of who I was. Therapy helped me rediscover myself to some degree but it doesn't seem to have helped me face my grief. I often feel that I cannot cope with life but I carry on regardless because I don't know what else to do. People seem just to expect you to carry on so I guess that's why you do.

I have gone back to work full time recently because my husband lost his driving licence and continuing his employment would have been difficult. I work shifts which are really tiring but I still want to be a mum when I get home which can be hard. This is on top of moving house earlier in the year which was horrendous. There is just no space for grief in all this but I don't know how much longer I can go on at this pace. I know other people cope juggling work and family so I feel that I should be able to as well.

Thanks again for your messages, any reply means a lot.

Thank you DelGirl,

I am so sorry but I don't understand these abbreviations, who have you lost?

sorry Shaz,
ime - in my experience
dh - darling husband
fil - father in law

there is a list of abbreviations at the top of the page

Thanks delgirl, Yes, your comments are very helpful. I am also really sorry for your losses.

Everlong,

I read your post about your son and I am so very very sorry. I don't know how you would start coming to terms with what has happened to you but I am sure there will be people out there who can help you.

I did actually have therapy following the death of my parents. It hasn't been a cure-all but without it I can't imagine what a state I would be in now.

The strange thing about Pateau's is that Jacob was never going to have a full life, that was decided the moment he was conceived. So I don't even have the luxury of imagining how things would have been if he had survived. Maybe that makes it easier, maybe not? But on the other hand I never really started feeling like his mother. It was all about coping from day to day and in a way, preparing for his death. The only memories I have of the time Jacob was with us are full of shock, fear and pain. Consequently, its easier just not to think about it. But, as you say, I was his mum and he will always be my baby, which is a lovely thought, thank you.

I really wish I could say something remotely helpful to you. Your words are so kind and generous, especially considering what your are going through yourself at the moment. You sound like a very special lady to me. I shall be thinking about you.

Than you so much Christiana, LackaDaisycal, Mankymummy, DelGirl and Everlong for sharing your thoughts and experiences. I do sometimes re-visit my councellor from time to time if I am struggling and maybe now is time to give her another call. It's been good to talk about Jacob. I don't often mention him in general conversation because it embarrasses people. He was a little fighter who turned a life expectancy of two days into two months and I am so very proud of him. Look after yourselves x

My mum died from advanced breast cancer in April 2004. She was first diagnosed in 1999.

Sadly, although she had passed her 5 year survival and had been given the 'all clear', she had been diagnosed with secondary bone and liver cancer. She died after her first session of chemotherapy as she contracted an infection, which killed her within a week.

Her death was a shock, in that we had thought that she would have at least a year or so - but we knew that her prognosis was not good.

At the time of her death I cried, and I shed some tears over the next few days.

However, apart from that, I felt that I was not grieving 'properly' - i.e. I always thought I would be totally devastated, hysterical, tearful, etc.

I was very close to my mum.

Eventually I went to my GP because I really didn't know what was going on. I was referred to a counsellor, who talked to me about my feelings. Ultimately she said that it sounded like I had been 'steeling' myself to deal with my mum's death over the years since her diagnosis.

Also, we had a very good relationship, so there was no 'unfinished business' and no regrets (beyond the obvious).

It made me realise that I was actually seeking someone to give me permission to feel the way that I did, and to allow myself to be as I was - and that just because I was not falling apart/lying prostrate with grief on the sofa didn't mean that I was a bad person.

Almost 5 years later, things haven't changed for me. I was fearful that I would have a mental collapse some years later, but this hasn't proved to be the case. I remember and think of my mum every day, and no longer worry that I am suddenly going to fall apart. (I do worry, though, that when my dad dies, things might change).

So this is a very long and rambling way to say to you that you should just allow things to pan out on a day by day basis. Don't torture yourself about what you think you 'should' be doing/feeling. Be kind to yourself, and know that you loved him.