Wednesday, 21 September 2011

Exactly WHAT am I asking for?

I've had many emails from people offering up their story, the tale of their not so textbook launch into parenthood.  To all those that have contacted me I thank you greatly - if I haven't gotten back to you in a while I will eventually (remember, this is my "spare time" project!?). 
I have been overwhelmed by what I have read so far, and there is much more to come.

Many have said they would like to share but are unsure of exactly what they should write... so I thought I'd pop (finally) a few things here that I was hoping you'd cover - obviously you don't have to cover them all, and you may wish to talk about completely different things that you went or are still going through - this is absolutely fine.  You are sharing your personal account of your emotional rollercoaster, whatever you wish to share is fine, each persons journey is different, each person deals with thing or found certain things to be stronger than another. 

Don't take my "suggestions" on topics as the rule - I am simply wanting to give guidance to those that want to share but are a little lost.  If you are going somewhere totally different with your story DO IT! 

So, here is what I'm thinking on POSSIBLE things to cover.

Firstly, please try to stay away from too many technical medical jargon.  Some of this may be necessary to the story but this is basically about the human element, the rollercoaster of feelings you rode or are riding.  Also please try not to accuse any medical professionals of anything, that's not appropriate in this book.  So upon saying that...

1. How you felt upon finding out you were pregnant (was it planned, a nice/poorly timed suprise, IVF etc) The hopes and dreams you entertained in the pre news stage.
2. A little about the pregnancy ie, was it "textbook" how did you feel both physically and emotionally, how did your PARTNER feel and do during this time (please don't forget him, he went through this too)

3. I suppose the important bit for this particular project is the moment that you discovered something was wrong.  Was it a gut feeling you had and followed up on it?  Was it a shock at a scan? Was it at birth? Was it several years into your child life?

4. How was this news broken and by whom?

5. What was your inital reaction?  What was your partners reaction? Did you go numb, feel lost or confused or fall apart?  Did you begin the grieve right then? (this applies I think even if the outcome isn't certain death, to each piece of bad news we experience a grief process) Did you react with anger - to whom was this directed?  Did you remain calm and it was other people that reacted strongly (ie partner, your parents, friends etc) In that first few moments, exactly what went through your mind.

6. Who did you tell first?  What were the reactions of friends and family (on a continued basis - the initial reaction to your news and then later - did they support you, did you lose friends, were they uncomfortable or did they really shine for you?)

 7. What were you told the outcome for your child was and the timeframe you were looking at? How did you deal with this? ---
---For some of you the "problem" was temporary and eventually fixable or at least manageable, for others it has meant a lifetime of dedication and work, some got only moments - if that - with their miracle.. for each of you the guidelines and story are different, please take all this with a grain of salt and simply let the emotional side of your journey flow..When I receive your story I shall let you know if there is something that I would like covered a little more intensely IF you are comfortable with that.

8. If you have other children I think it's important to try to get a little of how you dealt with their questions and how they coped with things.

9. Did you reach out to others going through the same thing as you? Do you now? What or who have you found that helps you?

10. If your child is still with us ( yay!) how are they? What is their quality of life and how do you cope emotionally and physically each day?  If not, did you have a funeral and how did you cope with that? Have you set anything up in their name to remember them by or help others through what you have or are experiencing?

11.  How has all this affected your relationships - both with your partner and other members of family/community.

12..... I write 12 because I KNOW there are things I've missed... as I said it's hard to write this due to the subject being so broad!  Some of you have miscarried, some have welcomed sleeping angels, some have known no problem until birth or until much later... some are still with us and some are looking over us... whatever your story it IS worth telling - A friend of my Mums whose child has Spina Bifida (and is now a married adult with a child of her own!)  recently told her that she didn't really have anything to contribute because she just used humour the entire way through - THAT IS worth telling!  We don't all have stories of woe, sure we've had moments of it (we all wallow ocassionally) but there are those wonderful people who have just taken the news on the chin and soldier like said "Where to from here then!"

Please feel free to include photo's in your story, nothing is out of bounds so long as it's appropriate to your story and your child. 

If there is something I've missed here, or something you're unsure of please ask me - here or on my facebook page or through personal email.  No question is stupid, no story is "not worth telling"

I may well update this when I've had a few coffee's and my brain kicks into gear however for now, there you have it :))

I hope your day is bright and full of love,
Trine xxx


  1. Thanks for posting that!! I have started working on it, but am so busy that I left it because I got a bit stuck. I have written a blog for so long (I had another one previous to my current one) so I have covered it all, but it is all fragmented.
    Will keep working on it!!

  2. Oh good Anna! Hope it was helpful? If anyone is having trouble with their story please don't hesitate to give me a shout! It's hard enough to do this without having to try and do it alone :)
    I'm not always prompt in my reply, but I'm about and eventually I get there xx

  3. This is a great list - I think you should turn it into a stand alone page! :-)

  4. I just learnt how to do that - Thankyou Kate :) Both this one and the first one now float around at the top of the blog :) Thankyou for the suggestion (I'm still so new to this!)

  5. I was just wondering if you have a child with a disability yourself?? Or is the project just for interest in the topic?

  6. Hi Anon,
    I have one perfect little boy. Aside from a 'sensitive respiritory system' (read: gets croup ALOT) and hearing issues he is a healthy little lad. I am incredibly lucky to have him.
    I am also the mother to angels.
    No, I don't have a child with a disability... but I've experienced loss - also a part of this project.
    I have involvement in different charities that help people with disabled children. One of my best friends child is autistic, my husbands god daughter has aspergers, I have a friend with spina bifida, several children in my son's class are special needs... I have enough experience with parents to know that there are times when you wish you could know how you feel is okay/normal/acceptable considering the circumstances.
    This is partly a healing process for me, and partly because I know I'm not alone - but so many don't feel that.
    I've said it before (though perhaps more on the fb page than here) but this is not a money making scheme for me. Proceeds of the book will go to charities so that others may not have to go through what the parents I'm meeting are.
    Does this satisfy the question?
    I was just wondering.... is it okay that I don't myself have a disabled child? Does my loss and heartache qualify as being okay to hear these stories? I guess... my whole aim and point here is to make a positive difference in a lonely and terrible situation... hopefully...
    Hope your day was peaceful x