Spare A Thought.
A COMMUNITY SERVICE ANNOUNCEMENT SEPT. 2005

If you know someone who has suffered a neonatal loss, or miscarriage, or even given birth to a child with disabilities, I urge you to read this. What you may learn could surprise you.

Recently, the struggle other parents in our position are facing in terms of coping with the human emotion side of all this has really started to nag at me. I feel I had to do "something", but let's face it: what can one person do? Well.... as it turns out, one person with some web space might be able to do a fair bit!

Below is a copy of a post I made on September 24th, 2005, on Australian parenting website, Essential Baby. From the responses received so far, this is felt far and wide in the community. So far, the unanimous "hear hear"s from women coping with people in their lives who, however wellmeaning, are often falling short of pitching their topics of conversation regarding their children at the right level, prove that people who have not experienced such loss need to be educated about the reality of how harmful or hurtful their innocent conversations may be with their friend/relative - harsh as that sounds.

My point when I wrote this piece was not to be a 'voice' for others. But somewhat comfortingly, it seems I am far from being the only grieving mum out there having trouble with this and I could not deny the importance and urgency that was felt as a collective group that something needed to be initiated to attempt to turn the tide and dispel some of the taboo. And interestingly, they also seem to be getting the same occasional ignorant suggestion that we should "go see someone" to talk to who is independent to the "situation".... If you are guilty of recommending this, please... don't do it! This is not the fix-all solution, as we can't make any counsellor tag along with us to help deflect comments and actions at family functions, the supermarket, work, etc.! As part of a balanced healing process, sure, some of us may feel better with the support of regular counselling sessions. But it cannot by any stretch of the imagination fast-track the grief process for us. I'm sure your suggestion was taken with good grace and thought of as wellmeaning, though, so no need to beat yourself up for what you may have said in the past.

The purpose of posting this here is to suggest what might be happening for the person in your life who has suffered a loss such as this, and how you might better support them with your action and words (or when appropriate, your very well-placed inaction and lack of words!).

Understanding loss - Friends and family guide
Information on infertility for friends and loved ones

The Parallel Story of Ellanor
HOW ONE LITTLE GIRL WAS VERY PERSISTENT

Ella's Story
THE SHORT VERSION...

Ella's Picture Gallery
SOME OF OUR FAVOURITE PHOTOS

Memorial Page
THE SERVICE WE HELD IN 2004

"Little Ella"
THE STORY OF AN EARTH ANGEL

The Lowdown on Twisties
BALANCED TRANSLOCATIONS 101

You're Not Alone
SELECTED POEMS

How to help a loved one REQUESTED TIPS ON WHAT TO SAY (AND WHAT NOT TO SAY) TO A GRIEVING PARENT

Information For Friends
& Family

AN OPEN LETTER ABOUT INFERTILITY

Links
A SELECTION OF SITES FULL OF SOUND ADVICE, SUGGESTIONS & COMFORT

"Consider this an expression of not only my feelings, as someone who has suffered great loss, but also probably similar thoughts to those who have also lost babies and endured repeated miscarriages (m/c's). I’m writing this out here in the hope that it might make some people think before they speak to someone in my position.

When I lost my child, the grief was more than I could bear. At the time, I thought it was tragic that I couldn’t be the one who had died in her place because I didn’t know how I’d cope with the pain of being left behind without her. Slowly, people started moving on – as one would expect them to. Even we started moving on eventually, smiling, singing, laughing more and more as the months went on. When you have to live (and believe me in the darkest days of the beginning, I did contemplate ways to not be here)… you might as well live to the fullest. And that we have - my husband and I are in some bizarre respects, the happiest we've ever been in our lives. So very full of life now.

Now, nearly two years on, of course my pain is not raw anymore. The void has almost closed over. But I am forever changed, a spark that I had in me previously is forever snuffed. See me and most days you will see the old me (older, wiser and less accommodating to pettiness than I was, but still me) – it’s only some days that I am wistful and sad. But, please, give me a break on those days, in those moments.

Many of you around me see me as ‘over it now’, especially since we have been trying to conceive (ttc) since losing our daughter. I’ve had 3 more m/c’s since May last year, we’ve recently tried IVF twice. So I can see how it might appear to you that I am firing with all four burners and I also understand that while you don’t think of my daughter at least once every hour of every day like I do, I am offended that you don’t remember more often that I am left with a constant longing which makes it very difficult to interact with you and your pregnant belly or your children. And the longer we wait for this elusive baby #2, the harder it becomes for me and for my husband to integrate the two into our lives and cope with "it all".

All this “progress” we are making with ttc is apparently a licence for some people around me to feel it safe now to talk about their happy families, their ongoing pregnancies, their adorable children. Minding my own business, you call me and tell me you’re upset that you don’t know what to do with me, that you don't know what I will do now? I don’t know what to do or say to me either, trust me! And that’s all ok.
You have stopped calling me because you are 'scared to offend' because no matter what you say you think it hurts me - please, with the greatest respect, get real. It's not about me having 'time out' to get over this and then all will be fine. I need your ongoing support and I think after years of doing the reverse, it's my turn now!
And with yet someone else, thinking it safe to joke with you about your recently announced pregnancy and say “Please forgive me if I don’t break out the streamers for you”, your partner has the front to come to me and say I should contact you to see if YOU are ok because you’ve been crying, you think you’ve hurt me. Give me a break! I cannot be responsible for you too.

I’m here to make it clear that most often IT IS NOT ok! I’m sorry that in me, you have lost a friend/relative that you used to rely on to sound off about the latest cute, melt-your-heart adorable, or alternately annoying, upsetting things your child/ren have been doing… Most days you will agree I’m very accommodating and will listen – my reactions of “awwww, ahhh!” are always genuine. When I am silent, that is genuine too - it means I don’t want to hear any more. I adore children, have always, will always – so don’t confuse my inability to listen with your projected view that it signals my hatred of your child! This is NOT the case. Hearing you speak makes me painfully aware of what I don’t have (but what I should be experiencing right this minute with my child who would now be 20 months). And if you are pregnant, hearing you speak about it reminds me that I have lost so many.

There is a difference between avoiding pregnant people, children, even the sight of a pram, and simply buffering some of the unnecessary stuff. Necessary would be seeing my nieces/nephews/young cousins as often as I like, necessary is seeing strangers in the street with bellies out to *here*, necessary is sharing the attention of my friends with their adorable young charges, with celebrating with friends or family the announcement of a pregnancy. These are things I can't and won't avoid, for the sake of moving ever forward. Unnecessary is where people like me need help from people like you - in simply filtering many of those things that are not absolute musts: stories about how sweet they look when asleep, when they move to solids, the tale about the friend of a friend of a friend who fell pregnant as soon as she looked at her husband..... not really easy or necessary for me to hear. I hope the difference is clear. I'm not by any stretch asking for blackbans on all things baby around me! That's not it at all.

So… the point of all this is to just request of anyone reading this: next time you interact with the person in your life who has suffered a neonatal death or the loss of a m/c (one or 10, it makes no difference), just think before you tell them the latest about your pregnancy or your precious child. Ditto for any comments you felt like making about how ‘clucky’ you are for another one. Don’t daydream with them, it’s completely inconsiderate. Whenever you can, choose someone who has not had trouble conceiving to share those feelings and stories with. If it means that person has to hear just one less cute anecdote from you, then you’re doing them a massive service. It doesn't mean they won't have a whole barrage of other comments from other insensitive people, but it's a start.

I’m not saying any of this with anger! Heck, we are all just doing our best and this still sometimes means unfortunately we’ll be hurt on the receiving end of someone “doing their best” (on either side) if you know what I mean. I guess I am only truly hoping that if just one of you out there considers the immense burden that pregnancy/child loss brings with it before you share with that person, and whether what you’re about to say is REALLY necessary for them to have to hear (despite the brave face the person you know may be wearing), then all is not lost in this world. I know it seems harsh to have to put a lid on your happiness with this person, but please please find someone else to share it with as often as you can remember. And no amount of bringing your child over to help them 'snap out of it' is going to help either. That attitude is just hardball and totally unforgivable.

My final disclaimer is that the situations I have spoken about here are a combination of experiences I have had personally, and of those in the same position as me (neonatal death/recurrent m/c) so you may see glimmers of yourself or someone you know in here. I'm saying all this with great love and respect, and have already talked at length with the people who I've interacted with in this way. I hope it paves a way forward for me and my friendships with them.

Above all else - communicate with your friend/loved one! They might want to immerse themselves in everything you're doing with your own babies. I think the main point is: don't assume. Don't assume they want to hear, don't assume they don't! Oh. I think I just figured out I have summed all that *up there* in this one paragraph so could have just posted a few sentences..... but what the hey, I'll leave it all in and you can judge for yourself.

Thanks so much for reading." - Kirrily, September 2005

Some of the comments so far:

"If only some of the people I know IRL would read this and understand me just that little bit better. As the other girls have said......Thank you for doing this. You have made our feelings "justified"."

"What can I say other than I could not have written that better myself!! I second everything you said. It is so hard and so few even try to understand. I would say that is definitely the biggest barrier DH and I face 13 months down the track, it is just sheer lack of consideration for the life sentence we have been dealt.
As you said, we have changed forever - in most ways for the better but there are parts of our innocence with ttc and pregnancy that is gone forever and needs to be handled with care yet so few can take this in to account, you are right, they think we are over it!! What is it!!! Our babies that we lost - we will never be over them.
I would not want anything bad to happen to any of my friends or family in their TTC & pregnancy journies however I would simply ask that they keep all the warm & fuzzy things to themselves and others, I am happy to be a part of their lives - but don't rub it in our faces. I have a scenario I am dealing with right now that fits into this description and I tell you it HURTS!!
I also second what Kirrily has said, please if you do read this, be understanding of those around you who have sufferred Neonatal losses and miscarriages. It will make a difference."

"As a mum of a severely disabled child (my only child), I can relate to many of the things you have written about. I guess that's because I too have been through a grieving process. Mine is obviously different because I am lucky enough to still have my darling with me, but I too have to hear about the wonderful things my friends healthy normal children are doing and some days I just can't handle it.
Has anyone explained the grief rollarcoaster to your friends/relatives? It takes 2 years to even get to the next phase of dealing with grief. After 5 years the pain starts to ease, but it still is not gone. After 10 years, most people have reached a point where they don't feel that sadness everyday, but they do still feel the sadness."

"Thank you for your very moving post. I will now think very carefully before I speak and hope like hell I have not said anything as above to anyone who is struggling. Your post has certainly taught me alot."

"Thankyou so very much, for expressing all the things I wanted to say for so many years, but could never find the words."

"Wow, what an amazing story. Thanks for having the strength and ability to put your thoughts and feelings so succinctly. I have been educated and I hope I can remember your words for a long time."

"hmm feeling like sh*te for talking about stuff to my SIL... "

"I'm sorry for your loss and heartache. I think it would be benificial to go and see someone you can talk to regularly, someone independant that you can tell anything too. I dont think your friends would forget but they may not know how to truly ask how you are going. I guess it would be hard for your friends too. I know im guilty of talking about my children too much. Whilst some people do are inconsiderate they are also proberly trying to be your friends the best way they know how, like you said their lives do go on too and part of the healing process is you growing with them in their experiences and them sharing yours. I guess what im trying to say is don't hide yourslef away and not enjoy those precious moments with your friends and their children."

"By the looks of other replies here, it is something that is felt far and wide, as part of the grief process. Going and seeing someone regularly is actually already part of my routine - thanks for suggesting it though. It is all very well to do that, but at the same time despite what you might assume, it doesn't actually help when faced with day to day ignorance, insensitivity and people's inability to know how to talk to us. You can never be fully prepared for that, because people always manage to come up with new ways to say something that's like receiving a blow to the stomach. I think actually what might be a good idea is the friends/relatives going to see a counsellor to learn how to talk to us, quite frankly!
I think most people who have suffered this kind of loss are forced to toughen up very quickly, to brace themselves for comments that people don't realise are hurting (regardless of whether it's pointed out to them). It's a shame that those on the other side of the fence are quick to say "oh, go see someone, that'll make it all better" as if it's our problem. No, it isn't our problem alone. If you, as a support person of someone who has suffered loss like this, have trouble knowing how to approach someone in this position... you need help too. It's all very well to say 'don't hide away and miss out', but that is not it at all. We don't hide away, we are out in the world facing this every day. I'm simply saying, be responsible for the words you choose when dealing with someone who has lost a child/pregnancy. Surely that's not too hard to ask of you."
- Kirrily

"I feel for the blokes - at least us girls are kind of allowed to be all touchy feely, but I often wonder how the dads go dealing with people's comments after such a dreadful loss. I would imagine that the insensitive comments they cop must really hurt, and they'd often feel like they couldn't express that hurt."

"I think our society is generally very bad at allowing people to grieve, at being sensitive to that process, and it is the griefstricken who bear that burden, who are too often expected to make it easy for other people, the ones who have not lost."

"(Someone) once said in a thread in Assisted Conception that she often wanted to scribble the Essential Baby website on the back of the toilet door at her fertility clinic, so that more infertile women would log on and get and give wonderful support with people in similar situations, a little community of women helping each other.
I would go a step further and say that I wish I could post the link to your community service announcement on the back of EVERY toilet, tag it on railway station walls and get a plane to skywrite it! Everyone should read this and start to think for themselves of the repercussions of flippant talk and lack of compassion and empathy.
Kirrily, her DH and their daughter Ella have touched all of us by allowing us a snippet of their life, loves and losses. I am so grateful and thankful to them all for this gift."

"...you continue to show me that for those that had to bear the loss of a child they have earned the right to have off days without explanation. I just hope I can continue to remember that every day."

"Having been extremely fortunate and blessed enough to have conceived again very soon after losing (name withheld), I have had to face this attitude also, but in the form of "it is all better now as another one is on the way"; No more tears should be shed (?). It was not a difficult decision to try to conceive again. We want a baby, we want to be parents again, this time in a more physical way.
It's not all better, I still love and lost my first child and would give anything in the world to have her here now and for things to be different. This child is not a replacement for her, but another child that we so desperately want and love for its own individual place in our lives. This pregnancy has been the biggest most exciting, challenging and anxious, guilt ridden, emotion producing event of my life (after the loss of my baby girl)."

"Thank you Kirril, for saying a lot of things that needed to be said. If this thread causes just one person to stop and think before they do/say something hurtful to those experiencing loss and/or IF (infertility) then you and Ella have made the world a better place."

Understanding Loss - Friends and Family guide
WRITTEN BY MARIELOU, EXTRACT FROM infertileworld.co.uk
MONDAY, 03 OCTOBER 2005

Anyone who has suffered the loss of a baby ~ whether at 4 weeks or 40 weeks of pregnancy knows the heartache and pain that can often be a part of loss. Often family and friends do not know how to respond to your pain …. Here is a brief guide to help them along the way.

Don't say, "It's God's Will." Why was it God’s will that my baby died, and not someone else’s? Saying things like this compound my grief, and my guilt. I cannot believe God would will for my baby to die. Comments like this can really hurt.

Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

Don't say, "You can always have another one." This is no comfort to me when it was THIS baby I wanted, and still want so desperately. Please do not brush off my baby so easily. There may be another, but there will never be another time for THIS baby. This is especially hard if we’ve waited long and hard for this baby. To have your miracle snatched away from you is cruel and painful. At this moment, I’m scared there will never be another baby.

Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

Don't say, "Thank God you lost the baby before you really loved it." I loved my baby since the minute we knew he or she existed. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

Don't say, "Isn't it time you got over this and moved on?" It is not as easy as it seems, to just ‘move on’ If you lost a parent, would you be able to move on and forget so easily? I will feel better in time, but I will never forget my baby.

Don't say, "Now you have an angel watching over you." I never wanted an Angel. I wanted to hold my child in my arms, and never let him or her go. Knowing she is an angel doesn’t help me.

Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently

Don't tell me horror stories you’ve heard” I really don’t need to hear right now that someone else has had it ‘worse’ than me, even if their story has a happy ending. Hearing about someone else’s pain does not lessen my own pain.

Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone. It actually helps me to talk about it sometimes.

Things you CAN do to help a bereaved couple.

Do let them know you care ~ something as simple as a card, or a bunch of flowers, lets them know they’re not alone, and that people are thinking of them.

Do be there to listen if I need to cry ~ nothing else is needed. Just saying ‘I’m sorry’ is enough. Holding me when I cry means the world.

Do understand if I can’t answer the phone right now, or if I don’t return your calls. I’m grieving, and I will call you, I just need time.

Do understand I have suffered a death in my family, and I may be in shock. Part of that may include going over and over what happened for a time … this will not go on for ever, so please listen while I need you.

Above all, please remember that this is the worst thing that ever happened to them. The word "miscarriage" is small and easy. But their baby's death is monolithic and awful. It's going to take them a while to figure out how to live with it. Bear with them!

FROM infertileworld.co.uk

There is no easy way to support a parent grieving the loss of their unborn/newborn baby
This is so important to remember.

BUT, to gain a little more insight and understanding, learning how your friend/relative may be feeling by reading others' first-hand experiences will help you to understand why some platitudes you may offer in the spirit of comfort and compassion could be the wrong thing to say.

The following are extracts from A Place For My Angels. We kindly acknowledge the authoress for sharing her deeply personal thoughts in order to not only write through her grief, but to attempt to explain in her words for others how this situation is not easily fixed, nor easily supported, by mere "kind words" from people who wish to support or take the pain away.

For the full transcript, please click here

"After losing my babies, I heard so many times, "We just don't know what to say" or "We just can't understand what you are feeling". Those comments are fine and there is nothing wrong with saying that. While it is true they don't know what we are feeling, most people do seem to know proper etiquette and use tact in consoling others who have lost loved ones. Why then, do so many find it so difficult to use that same tact and give the same understanding when consoling bereaved parents after losing a precious baby?

"All of us who have experienced the death of an unborn/newborn baby need to be treated in the same way that a person who has lost an older child or any other loved one would be treated. I fully realize the situations are different and that the death of an older child is an unimaginable nightmare that I pray I never have to experience. But the fact remains that if others would just use the same tact, compassion, and understanding before they speak, that they would use for those bereaved parents, they could greatly help us in our grieving or at least not add more pain and anger to it.

If a ten year old child is dying of cancer, no one would say to the parents, "Don't hold them too much or take pictures, you don't want to get too attached. It will only make it worse". Or "You mean you still call him/her by name?" Yet people have no problem saying these horrible things to those of us whose children died before or just after birth. Many people are surprised that we name our babies, take pictures of them, hold them, and try to remember everything about them. No one would go up to the parents of an older child who died and say "I am really struggling to understand why this is so painful for you." You don't have to experience that in your life to realize that the pain must be unbearable. Yet people are often surprised that after losing our babies, the pain we feel is SO intense.

"I felt completely dead inside for months... lost and disconnected from the rest of the world. The world kept turning, but I had no desire to take part in any of it. As more time passed, my shock and numbness slowly gave way to other stages of the grieving process. Gradually, there were periods amidst the deep despair and torment where I was not completely immersed in my grief. That is when the inevitable stage of anger began to take more of a stronghold. I began oscillating back and forth between the rage and the deep despair. Gradually after more than a year, I began slowly finding periods of resolution and peace. I was functioning in the world well enough, but still felt somewhat disconnected. At that point, it seemed that for every step forward, there was another one backward. In retrospect I can now see that the steps forward greatly outweighed the others, but at the time that was difficult to realize.

"I wish everyone could understand that the pain over losing a child isn't something that can be fixed or spoken away with words or phrases. It has to be experienced by the bereaved parents and all of the stages of grieving have to be gone through. LISTEN to them, hug them, and cry with them. Allow them to express all of their often seemingly irrational emotions without facing judgmental comments. This is one of the greatest gifts a friend or family member can provide the bereaved parent.

I find it sad that all this needs to be spelled out and explained to much of the world. But I have found it necessary to do so, even to many who have children. It seems as though people with children should at least be able to find empathy, just imagining their own experience with labor and delivery. Only instead of it ending in joy, if they could only imagine knowning the whole time that their sweet baby is dead. If they could just imagine through it all knowing in the end, all they would be able to do is hold their child's tiny body for a short time... then say goodbye for the rest of this lifetime. Instead of leaving the hospital to plan on showing off this new person to the rest of the world, they leave the hospital to plan their child's funeral. That is precisely what I have lived. How difficult is it to then imagine the incredible devastation this has brought into my life?

"I wish that everyone could know that a new baby does NOT replace the ones who died.

"A subsequent baby is a precious addition to the family. They are individual and unique, but they do not replace a child who has died.

"The grief over the death of a child is a grieving for the future that is lost. It is a pain that is ongoing, through each holiday, and each birthday without that child. It is a pain that is amplified each day by the visual reminders of other infants/children the exact age that our child should have been. It is no wonder the grieving over the death of an unborn baby is such a prolonged, horrid, lonely, process for the mother."

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