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Why is life so hard. |
It has been 9 months since our daughter died, and life just seems so hard. we have found out that my 2 brothers and my brother in law are all sma carriers. My youngest brother and his partner are expecting their 2nd baby. I just cannot muster up the enthusiasm, I am pleased for them, but I vant get enthusiastic like I was when they had their 1st one. They were frightened to tell us in case they upset us.
Am I wrong for feeling like this? Am I wrong for hoping they have another boy as Im not sure how I would cope if they had a girl?
We are trying for another, but so far no luck. We are trying the natural method at the moment. It is so hard knowing that we have to wait and see if the baby is ok before we can celebrate. Im sad that Im not pregnant again this month and Im sad because I miss my girl so much.
I know come tomorrow I will feel better about things. Hubby txt me from work to say he is having a bad day today.
We have now got a headstone for her, Rosie is with my grandparents, so it is an adult size grave, but full of flowers, and we have had a Rose named after her as well. There is one on her grave. My other nephew is also 3 weeks younger than Rosie, and although I dont mind seeing him, I hate hearing how well he is doing with walking, talking etc, when my girl is in Heaven!
Life is so unfair.How do people cope??
IM sorry for rambling on, I just feel a bit low today, and Im going to see my nephew in a while, so I need to get this off my chest so I dont seem too miserable around him. |
| Posted: Thu Jul 20, 2006 12:30 pm |
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Re: Why is life so hard. |
Life changes after SMA comes into the equation and I don't think you should put yourself under any pressure to feel anything other than what comes naturally. It's OK to feel sad and it's OK if you don't feel enthusiastic about someone else's news.
After we lost Alisha, we were desperate to be parents again. It can be a long path but many of the people we've met through the Jennifer Trust have ended up with a family in the end. It doesn't stop us missing Alisha every day, but perhaps the pain isn't so raw now. I remember acutely having days like yours and many people reading your post will no doubt be similarly reaching out to you in their thoughts.
You might find that your family think you don't seem to want to talk. They might think they'll make you sad if they talk about it. If you think you can find the right person then tell them you'd like to talk and hear Rosie's name in conversation.
Don't forget too that the JT has a whole network of volunteers (CVN) who want to help you if they can. My wife and I are on the CVN and you're welcome to call us or any of the other volunteers whose numbers you can find on the back of Holding Hands or by contacting the office. Email if you prefer of course! |
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Re: Re: Why is life so hard. |
Thank you Gareth,
I find all I ever do is talk about her, to anyone who will listen - my mum mainly. To an extent my parents do understand as they had a stillborn son before me, so they do have a little understanding how we feel. Mum has said to me on more than one occasion, that she knows how she feels after losing Rosie, so my feelings must be so much worse.
What makes it hard is knowing that we have the wait once we are pregnant as well. We have said the only people we will tell are my parents (my in laws are no longer with us), once we know everything is ok with the baby then we will tell everyone else. But is feels like its never going to happen.
Knowing people do have babies without SMA does help, it does give hope for the future.
I am pleased to read that you were desperate to be parents again after losing Alisha, only because it makes it ok to want another one. I don't want people thinking we want another one to replace Rosie. Rosie is and will always be my firstborn and my little girl.
I sometimes wish I was 2 or 3 years along in the hope that the pain didnt feel so bad. I do have good days, it isnt as raw as in the first few weeks. I also have contact with Angela, whose son Fergus has been on the homepage recently. That is a great help as his birth and death dates are close to Rosie's, so we are at the same stage (kind of) of grieving.
My 1st thoughts when my brother told me he was to be a dad again, was, how selfish can they be!, how can they do it so soon after we lost our girl! I felt evil for thinking it, but I couldnt help really feeling angry with them. I dont now though. I discussed it with my mum who said she has been through that and she guessed how I was feeling. But it is normal and will change. I love their son who is 3, to bits, but I was so excited when she was pregnant with him, I dont feel that yet.
Life just feels so long without her, but people do cope and carry on with life, and have families as well.
Thank you. x |
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Re: Re: Re: Why is life so hard. |
Glad you have someone to talk to.
We also thought it would never happen. We found a lot of the stories in HH and on the web site gave us hope too, and talking to other families at the JT conference.
It took us from October 2001 when Alisha left us until New Year's Eve of 2002 before we knew Emma was free from SMA, and until July 2003 before we actually met her and found out for sure. So eventually (though it sometimes seemed everyone else got there first) we were lucky, and now we have 2 healthy daughters. Neither replaces Alisha and no-one who knew Alisha would think any different. If anyone thought it, I wouldn't worry because we all know. Hopefully Emma and Freya will never think like that when growing up! We have three daughters but our Alisha isn't here any more.
Don't give up hope. I wish you and your husband every bit of luck that you'll get there one day soon too. A lot of SMA families will be sharing these thoughts for you. |
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Re: Why is life so hard. |
Hi Heather,
how are you? I lost my son, Alexander, 2003 with sma type 1.It is only now,5 years on, that i have visited the jtsma website and am able to talk to people. Unlike you i already had a healthy daughter who is now 18. I still struggle{Alexander would have been 5 13th march}but i know im not alone. I have lots of support off family and friends and now im talking to other parents like you who know exactly how i feel. How did things work out for you? Elaine x |
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Re: Re: Why is life so hard. |
Hi Elaine.
We are not too bad thanks, since my original post on here, I have had a miscarriage in December 2006, that was hard for my sister in law and myself, we stood in my kitchen as I was making her a cup of tea, her with a huge bump out front, and me trying to tell her that I was, at that point, going through a miscarriage. It was a natural miscarriage so I didnt have to have an operation, which I was pleased about. 2 months later she had a beautiful boy, Finley, and I love him as much as I love his older brother Kian, who is now 5. Finley is now 14 months old and I look after him twice a week for them as they both work.
My other brother, 5 months after my miscarriage "announced" to me over MSN messenger on the computer, that his wife was pregnant again. They had a girl at christmas 07.
They are the ones I have problems dealing with, not only is their son 3 weeks younger than our Rosie, but they also now have a girl.
We have been trying for another baby since our miscarriage, well, because of the CVS, I wanted one clear cycle before we started trying again, for purposes of dating it better.
So we have been trying since Feb 07, and so far have had no success. But I am on the large size, so because I know a Dr would suggest I lose weight 1st before they do anything, we have started watching what we eat and now go swimming every week, twice a week if I can, and I have weighed myself this week, and Im now down to what i weighed when I fell pregnant with Rosie, but Im still big, so Id like to lose more.
Some months the fatc Im not pregnant is so hard to deal with, and 7th April would be Rosie's 3rd birthday, so that gets me stressed and worked up. The day itself is never so bad, its the lead up to it I struggle with.
But on the whole, as the days go by, we manage, we have good and bad days, but I guess the good ones are more often now. Which is good.
I still talk about Rosie to anyone who will listen, I think that maybe Im scared that as the grandchildren grow up, the family will forget about Rosie and I need to keep her memory alive.
We try to remain positive about the future, very hard, but we try. We so much want another child, but we have discussed it, and as we are both almost 38, and with the risks of SMA per pregnancy, and some other factors, if and when we ever do have any more, then that will more than likely be our only living child, we will always have 2 children in our hearts.
So Sorry to hear about Alexander, how old was he when he passed away?
That must have been hard for his sister as well, as she would have been 13 when you lost him.
one thing I am struggling with this yr is that she would be 3, and starting playschool, and the 1st thing I thought when I read Alexander would be 5 is, oh love him he would be starting school, all the big events that they would be going through.
This has turned into a bit of an essay, you can imagine how much I talk!!! Get me on the subject of my girl and I could talk forever though.
Take Care Elaine xx |
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Re: Re: Re: Why is life so hard. |
| Alexander was 6 and half months when he passed away. Like you i am thinking what he would be doing now. Second year at school. i think he would be so laid back. Blonde hair blue eyes . I dream of this, this is how i imagine him. I wonder why he was taken away.. When you dream is it of Rosie as a baby or as a three year old? |
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Re: Re: Re: Re: Why is life so hard. |
I dream of Rosie as a baby still. But when I think about her when Im awake, I see her as a 3 yr old.
Yesterday we had snow, not much, but I stood watching it out the window and said to Peter, my hubby, that if she was still alive, she would be all wrapped up, trousers, wellies, hat, gloves, woolly tights under her trousers, tshirt and jumper, and would be out in the garden running round with excitement as they snow fell, with us out there as mad as she was.
We said recently, as its her 3rd birthday, we would have bought her a baby buggy for her dolls for her birthday.
different situations have me thinking about different things with her. But in my dreams she is still only a baby.
Rosie was 2 days short of 6 months when she passed away. So a similar age to Alexander.
we see her as being laid back, happy, bright, bubbly, all the things she was as a baby.
I thnk she would be Blonde with curls (thats how I was as a child) and she had lovely bright blue eyes.
There are some pics of her on the inspirations page on here. I have 2 pages for her on here, Rosie's Poem and Rosie Jane are the titles. One of them has some pics.
I still get angry that she was taken from us. The whole unfairness of it all.
My parents neighbours daughter, i used to look after when I was a teenager, well she has a son, but when she fell pregnant last year, she was scared of upsetting me, so she got her mum to tell me, then she found she was expecting twin girls and wouldnt come near me until eventually I said to her mum, tell her Im not angry or upset, Im pleased for her and will give her a big hug when I see her. But she is so nervous and almost apologetic when she sees me out. Bless her.
Peter and myself have actually sat down and talked about adoption recently. It seems such a big step to take, but we want to be parents again, and our house is so so empty without children in it. No child whether adopted or birth will ever replace our Rosie, we love and miss her so much, she will always be our number one girl. But our desire to have another child is so strong. |
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Re: Re: Re: Re: Re: Why is life so hard. |
I have a big family and my younger cousins are having babies and they are all boys! Like your neighbour they are very sheepish around me. When we have get togethers i find myself looking at these children and cant help thinking that i was cheated.. I do love them and try to give them my attention.
Adoption is a marvelous thing and you sound like you could give a child so much. No one would ever think you are trying to replace Rosie x |
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Re: Re: Re: Re: Re: Re: Why is life so hard. |
I started a reply, but Im not sure what happened, the page just closed down.
I hate it when Im at my parents and both my brothers are there with their children. All I can see is this gaping hole where there should a little girl running round with them, and I find that so hard. My mum spends most of her time watching me to see how I am. I just look and smile at her.
I find it easier with 2 of my nephews than the others, maybe because i see far more of them, and maybe because they are not Rosie's age.
My nephew Alex is 3 end of next month, 20 days after Rosie would be 3, and I got his birthday card today, that hurts, buying a card for a boy when I should also be buying a card for a girl of the same age. A Daughter card!.
Sadly life has to go on, and I often want the world to stop for a while so i can get off. More so now as we get close to her birthday. |
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Re: Re: Re: Re: Re: Re: Re: Why is life so hard. |
Heather i just lost my reply.
I was saying that we are so much alike.Why does the world keep on spinning?
My mum also watches me at family do's and i put on smiley face until i get home, then i let it go..
Lucy and i try to celebrate Alexanders birthday, its hard but we remember the joy he brought us in his short life. No matter how ill he always had a smile. I thank the powers that be, that sma sufferers have nothing wrong mentally so they know how much they are loved and can love back.
I dont know of Rosies resting place but we placed a rather big sunflower on Alexanders and it twizzes in the wind, a toy for our baby.
Am thinking of you x |
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| Wed Mar 26, 2008 10:53 pm |
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Re: Re: Re: Re: Re: Re: Re: Re: Why is life so hard. |
For Rosie's 1st birthday, we ordered a posy of flowers and took it up to her grave, with some balloons to send up to her, and I just burst into tears. I was inconsolable for so long. But now, we still do the posy and the balloons, but the day is easier. Myself and Peter spend the day together, we go for lunch and just be together. But not in a maudlin way, the day itself is never as bad as the lead up to it.
This year Peter is working, we talked about it, and as its next monday (7th), if we still had her, we would celebrate over the weekend with a party or something, and although she would get her cards and pressies on the monday, the main celebrations would be over the weekend probably. So ordinarily Peter wouldnt take the day off, and this year he has decided to work, but his company is really small, there are only 3 employees, and one of his colleagues lost his son to heart problems 20yrs ago, so he understands and is great for Peter, and his boss has told him to judge how he is on the day as to whether he works or not. But he said he will play it by ear according to how I am. But it will be fine.
I will go up to her grave on her birthday and spend a while there, but I know I will be ok.
We pick up her Posy on Saturday, and I will get some pink and white carnations and Roses for the pots.
Rosie is at the churchyard, behind the church, literally 5 minutes from us, and is buried with my grandparents, which for me is wonderful, I adored my nan, I was 16 when she died, and I cant think of anyone else I would rather have Rosie with. So it is an adult grave, and looks like a little garden now.
For christmas, my 5 yr old nephew wanted to buy her something, so his parents let him choose and he chose a little garden ornament of a cat curled up with a teddy, so we have left that up there.
You know the plastic childrens windmills you can get at the seaside? my brother gave her one before she died, and we used to attach it to her pram, so when she died we put it on her grave, now each time they break, as they do when exposed to the elements, my parents head to the coast and buy her another one, she had 3 at one point, but its been so windy recently, we have only one there now.
I totally totally agree with you when you said this - No matter how ill he always had a smile. I thank the powers that be, that sma sufferers have nothing wrong mentally so they know how much they are loved and can love back.
Rosie had the most beautiful smile, and I can see her smile now in my mind.
We do sound so alike. And I guess like everyone here, we are bonded by the cruellest of things, the loss of our babies.
Some days I miss her so much I dont know how to go on.
But I think of her, happy now, running around like any normal child, doing all the things this life stopped them doing.
My girl is my little butterfly, my little free spirit.
I always have seen this life as being like a caterpillar, held down by the restraints of life, then when we die we become a butterfly, free from the restraints of this harsh life and free to spread our wings.
So after my miscarriage I had a little tattoo on my lower back, its a rainbow with 2 butterflies, a large Pink one and a smaller lilac one, and 2 stars.
Its for Rosie and my miscarried baby, They are both somewhere over the rainbow, way up high, 2 free spirited little butterflies, my 2 twinkling stars. Its only little, and I think its lovely.
Blimey Ive rambled on and on again. Im sorry, get me talking about my girl and I cant stop!!
Much love to you and Lucy, and Ill be thinking of Alexander with a smile.
They are such perfect happy children. xx |
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Re: Re: Re: Re: Re: Re: Re: Re: Re: Why is life so hard. |
Hi there, I was just reading your messages. This is the first time I have written on this site. I had a little boy last year February 27 2007. He was diagnosed with sma type 1 at four months and passed away at six months. My brother had a baby just before he died and my sister in law was pregnant at the time. So I now have have two 1st birthdays coming up, which I just will not be able to go to!!!
And with all this hot weather, all you see is babies everywhere!!!
I have two other children from a previous relationship and so does my partner.
But I definately feel the same as you guys at family get togethers!! Everyone tries so hard to pretend to be normal. What an effort!
Some days are better than others. You just know nothing is as it should be and is not going to be the same again.
Love to you ladies....and families.... |
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Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Why is life so hard. |
Hi Bubblegum.
Im so sorry to hear about your little boy. xx
It sounds the same as Rosie, she was 4 months at diagnosis and died 2 days before she turned 6 months.
20 days after Rosie's 1st birthday it was my nephews 1st birthday, I went, but hated it, and have never been to any of the childrens birthdays since. Then this december we have his sisters 1st birthday, and there is no way am I going to have anything to do with that. Ill send her a card, but I cant bring myself to be there.
Where I live there is a grassy area outside our house, and we have, this time of year, all the kids playing out there after school.
Its easier to hear and see them now, but it still kills me knwoing that I should have a little girl out there playing.
And she would be at playschool now, I regularly walk past the playschool and see all the mums outside and think - That should be me!!
Love to you and your family. xx |
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