POSITIVE ACTIONS

Obstacles to Grieving - Things to Avoid Doing

This section is about truth and pain. I know that it can be so hard to feel confident in doing or saying the right things to help a bereaved parent. No one wants to add to the pain that is already being experienced. That is why this next section is so important. It is my hope that my words, although they may seem confrontingly honest, will be of help to those wishing to be supportive. It is important to me that other grieving persons are not subjected to a societal urge to control difficult life experiences through sublimation. Below you will find actions that are innappropriate and comments that are hurtful. Some may seem completely bizarre but I assure you, bereaved parents the world over have heard them all.

The sky over Mt. Manganui, New Zealand

Please Don't Change the Childs Room or Grave Parents are in shock after the death of their child and need time to begin coping with their loss. If in an effort to protect the parents from pain (an impossibility), you remove all their child's things from their home without their consent, you will not be protecting them, you will be hurting them. Not only will you be inhibiting the expression of their grief but you will be erasing all traces of their baby. I would find this very disorienting and it would make me think that my child wasn't important to you. Many parents need to see momentos and reminders of their baby. I can't think of a more painful scenario that to return from the hospital, without our beautiful children, to a home that holds no trace of them. Parents want their baby remembered not removed. The decision to put away their child's things belongs to them alone. It is insensitive to pressure them to do this before they are ready simply because it will make you feel productive. Some parents will never feel ready.

I have an aquaintance from a support group that moved house shortly after their baby died. Feeling very troubled about the move, she asked for ideas about how she could take a bit of her childs memory with her. One mom suggested taking a jar of dirt from the grave. Another, cuttings of plants and flowers from their area. Photo's of the hospital were mentioned. All excellent ideas I thought. Once in their new home, the first thing they did was reassemble their baby's room. They didn't want her left behind. She said that she felt calmer, more relaxed and closer to her daughter by doing so. I was impressed with her ablilty to follow through. I am sure that many people would have told her to not do these things, mistakenly thinking that remembering in this way only prolongs grief and encourages an unhealthy sense of morbidity. But they could never understand how reassuring and centering it is to have this familiarity. Our home is filled with photos of Heloise, Imogen and Søren. Not a day goes by where I don't feel a sense of pride and comfort in seeing their beautiful faces.

"No light that was born in love can ever be extinguished."
~Darcie D. Sims. Ph.D.~

Please Don't Make Funeral Arrangement Without Consent From the Parents Parents need to have some control over what happens to their child after death. They will be in a state of shock, finding it very difficult to focus and may really need your help. Please give it but don't dominate all the decision making for them. This deprives parents of the only opportunity they have to follow through in honouring their child the way they see fit, to express themselves. It can also have the effect of making them feel weak and powerless, that everything is beyond their control. Parents need to be allowed to take their time to prepare this important event themselves. This is their opportunity to say their final goodbyes. Encourage them to make the most of it. It is very important that they have the freedom to do whatever they need for this occasion, otherwise they may be faced with feelings of regret. Also, following through with what they need is empowering. There is a lot to be said for taking the time one needs to prepare for a funeral. The funerals we had for Heloise, Imogen and Søren didn't happen for one full week after they died. I will be graphically honest; their bodies experienced some deterioration in this time. But it was a slow progression that we could handle.

We had Imogen's viewing on the Saturday, three days after she died. By the time we had their funerals, they still looked beautiful and we were as ready as we ever would be to say goodbye. It was time that we needed to spend with them. During those weeks, we made funeral and wake arrangements without time pressures, made plaster casts of their hands, feet and faces. We even brought Imogen home for an afternoon and took her for a drive to the beach and to the chapel where we held her funeral - all things we had wanted to do with Søren but didn't, for fear of what other people might think. We now know there is no reason in the world to fear what other people think. Kieron with Imogen at Little Bay, Sydney Australia.

"Out of love comes suffering; out of suffering comes love. That is the mystery."
~Louise Cordona~

Please Don't Compare Losses This is not helpful, and often fills parents with anger. Parents do not benefit from any comparisons. I have had people try to compare my own 5 losses with each other. I'm amazed that anyone would expect us to participate in this exercise. We lost all of our children in different ways, each is unique to their time and place in our lives. They all hurt. They are all not here with us. Comparisons make me uncomfortable. After Soren died, someone said to me, "This other couples situation is much worse than yours....." I found this incredibly thoughtless and rude. My son had died! At this point in my life, how can anything be worse than that?! And it made me feel very protective of all my babies - I felt that they all were being mistreated and rated in importance. No parent should be made to feel that their loss is somehow 'less' than someone elses. This is not how loss and pain work. I can think of only one reason that someone would make such a minimizing statement and that is to make themselves feel better, not us. Conversely, I've just recently had someone say to me, "Your loss is so much worse than mine because....." I gently said, "I know you are feeling so much pain. Please tell me about it."

I am especially uncomfortable when another suggests that my pain should be less because my children were babies when they died instead of adults. This is a terribly upsetting thing to hear. These persons don't seem to realize that having few memories does not lessen pain. I can't think of anything we would like more than to have had more time with our children, to have memories that were simple, happy and joyful. It is not possible to rate pain. No one knows how deeply another person's sorrow penetrates as there is no such device to measure. Thankfully, pain-o-meters do not exist. Pain is pain. I know that I can only really know how things feel for me and so, I try to stay true to these feelings. We do live in a world where comparisons and critizisms seem compulsory. But when it comes to children dying, I don't see the point. All this does is hurt grieving parents. The bottom line is that a child has died. A child that will never be again. Some deaths may be gentler than others, some more shocking and unexpected, some the final moments filled with suffering. Aside from wanting our children to be free of physical pain, there is no good way to lose a child. Once they are gone, they are gone for good.

"All who have been touched by beauty are touched by sorrow at its passing. "
~Louise Cordona~

Avoid: You must be really strong, I could never handle the death of my child. Comments like this might seem complimentary, but a bereaved parent often will not think so. This isn't the time for compliments. The parents will hear that you think they are not sad enough and that the death of your child would be so much worse. Its a comment that makes a judgement about their grief. The death of ones child is overwhelmingly painful to experience. It is every parents worst nightmare to live. After Imogen died, quite frequently I heard comments like "You are really handling this so much better than you did Søren." These comments really anger me, making me feel indignant and fiercely protective. I wondered why my grief was considered "in proper control this time" and more importantly, why that would be a good thing.

One of my good friends puts it so well in an email: "I remember when I was getting to know a new friend, while I was pregnant with Celeste, and I shared with her the fact that I had lost C.J. when I was five months pregnant. She was pretty horrified, and said that "she would never be able to survive that." I appreciated the fact that she recognized that it was awful, but it sort of made me mad, too. I mean my god, it looks like you survive it, but you don't -- you get made into a different person. I felt like she was implying that I somehow didn't feel as deeply as she felt because I was able to "live" through it. Then of course I lost Celeste, and I always wondered if she thought somehow I was a lesser mother because I lived through that, too." It's important to understand that grieving is sometimes a quiet affair, but no less painful for its silence.

We believe that lives are measured in memories, not years."
~The Make a Wish Foundation~

Hurtful: You can always have another baby "Or, oh well, just keep trying." These are particularly destructive because such comments suggests that the death of a much loved, much wanted, much missed child is unimportant, replaceable and trivial. So painful! Attempts to diminish the impact and tragedy of a childs death, is very painful and wrong. Not only does it not acknowledge the preciousness of someone who is very special and very loved, it also may not be true. There are parents that will not have other children. These parents may have suffered through years of infertility, felt incredible elation at falling pregnant, looked blissfully forward to this true miracle, only to have their child die. The cruelty! This child is their only child. Imagine how belittling and excruciating it would be to hear from someone, "Oh, you can always have another baby." Please. Don't say this. No one would say to someone who's father died, "You can always have another father." Considering that we have had 5 children die, I often feel like saying, "My 'another baby' died too."

Avoid: I just KNOW you will have other children. I have a feeling about these things....... This is hard. While I know that some people, maybe many people, would find this kind of talk encouraging, I personally do not. I really do understand that when a person says this, they are just trying to be positive and hopeful for us. But this placating comment is still difficult to hear. I am not at all a pessimistic dreary person, but that doesn't mean that I am not realistic in turn. After having our 5 children die, there is nothing we know quite so well as the fact that terrible things happen that are beyond our control. I feel we have earned our right to be cautiously optimistic. The deaths of our children are real. We accept that. Please, accept it with us and don't try to patronize us with comments that are not applicable to our real life experiences. Some parents may not be as bothered by this. Follow the cues that you get from a parent, that is always your best course of action.

"God has written the promise of resurrection, not in books alone, but in every leaf in springtime."
~Martin Luther~

Hurtful: Maybe You Aren't Meant to Be Parents This needs no explanation except to say, a child has died. A child that has parents...... Avoid Anything That Starts With 'At Least...' or 'Never mind,...' or 'yes, but.....' Such as 'At least you lived...' - this isn't very consoling; most parents wish from time to time that they hadn't. Or 'At least you still have your health....' - most parents don't feel healthy and will not appreciate that you think that having their health is a rational trade off for their childs life. Or to a parent who has lost one of their multiples 'at least you still have one (two) left' Or 'at least you still have the other children...' - parents want ALL their children with them. Or 'Yes it's difficult BUT look to the future' - the future doesn't fix things etc. Living children should not be treated, either now or later with a new baby, like consolation prizes. You can probably see how such belittlements and rationalizations only succeed in telling a parent that their childs death is considered trivial and that they are completely replaceable. Also included in this are words and phrases like 'It could be worse' or 'It's for the best'. This is so incredibly damaging.

Once I was told,"Think of all those people who are worse off than you & then concentrate on all the good & positive things that are happening to you." While I know this person was trying to be helpful, they instead provided an inappropriate and unsolicited solution to my pain and succeeded in making me furious for trivializing Soren's death. I have a right to respond with grief to my personal catastrophes. My son died. Please, don't try to minimize the impact a child's death has on a parent by saying these hurtful things. You will not be sparing the parents pain with these platitudes. The pain parents feel with their baby's death is absolutely real and probably one of the most intense life experiences they will have. A childs death is not part of the natural order of things. Children are meant to outlive parents. Please Don't Say: I know exactly how you feel No one knows how a bereaved parent is feeling unless you yourself are one. Even then, each parents' experience is different and cannot be compared. Someone actually said to Kieron, "I know how you feel, I haven't been able to find a job this week". We have yet to figure out how this has anything to do with our child dying.

"We are each of us angels with only one wing. And we can only fly embacing each other."
~Luciano De Creschenzo~

Avoid comments like: Well, now your child is in a better place. Parents feel that their child should be with them. This is the very best place for a child to be. A parent alone, wandering the house sleeplessly at night, wondering why their child had to die, will not find this reassuring or comforting. Kieron often feels like saying something sarcastic like "Where? Paris in the springtime?" This is a comment that makes him feel as though he should be happy that his children have died.

I have noticed that this particular platitude is most often spoken by an elder person with the best of intentions. As time passes, I am more able to react with care, offering a simple reply in return. I certainly don't want to upset someones grandmother or great aunt. I try to remember that these are the comments that were offered to them in their time. I hope that the passage of time will eliminate this and all types of comments as people become more aware of the support that parents really deserve and need. Had I not had my own children die, I would not know these things myself. I feel times are changing and I have a lot of hope that future parents won't have to hear these things.

"One must care about a world one will never see."
~Bertrand Russell~

Hurtful: 'He was only a baby' or..... 'At least you didn't get to know him' or 'Thank God she wasn't older' or 'He was just a preemie' (cringe!) or 'She would have been handicapped anyway' (ouch!!!!) etc These are particularly damaging and insensitive words to hear. These words imply that the longer one knows their child (or the less problems they have) the more they are loved. Following this logic, one would love their 5 year old more than their 3 year old who they love more than their 1 year old. Of course, you can probably see how pointless this is and realize that parents love their children, regardless of their potential in life, right from the very start and are devestated when they die. Hurtful: 'Miscarriages are common', or.... 'Everyone has had a miscarriage', or 'sometimes this happens' I don't know why there are those that insist upon thinking that common equals painless. Comments like this can be interpreted very negatively by a bereaved parent. It would seem that the persons who say such things think parents don't have the right to grieve their loss simply because of it's frequency in nature. The 'commonness' of miscarriages in completely irrelevent.

No, everyone has not had a miscarriage, so don't say this. I usually find that the persons who feel this is an appropriate rationalization are the same persons who have never had a miscarriage. Also, 'sometimes this happens' can be considered very insensitive to a parent who's future has just been completely destroyed. How can words like this be comforting considering the level of excruciating pain that accompanies the loss of a child? Please Don't Place Time Limits On Grief There is no right and wrong way to grieve. There are no rules. There is no statute of limitations. Realize that parents do not 'get over' the death of their child. Time does not heal - that is a misconception. WITH time, parents may experience a sense of peace or balance, but the scars remain and the wounds feel fresh at times. Each individual parent has their own distinct wound. A childs death and the opportunities their life promised are never forgotten. It is not up to anyone else to decide when or how or even if that wound is healed but the parent themselves. So please, do not offer any "buck up" sorts of speeches just because you are tired of hearing about it or because you think it is "time".

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart."
~Helen Keller~

Special Care for Death by Miscarriage Miscarriage is the most unacknowledged of losses. Many times, devestated parents are told to forget about it and go home to try again. Current medical practice rarely investigates the cause of a single miscarriage leaving parents with no specific answers. Investigations often do not begin in earnest until 3 miscarriages have occured. This is a tremendous amount of pain to endure, alone and in a vacuum. Physically, a very early miscarriage may present itself as a heavy period. Or at a later point, one could have tremendous physical pain as I did when we lost Aurora. A death that occurs before the 20 week mark in pregnancy is medically defined as a miscarriage but the mother will physically go through labour and birth, delivering her child. Parents themselves may have a wide range of reactions to accompany their differing experiences. As a support system, you might not know all the details. Avoid judging - "you must have eaten, done, thought, the wrong thing". Avoid comparing - "miscarriages aren't as bad as....". Avoid assumptions - "You didn't want another baby anyway". It can be absolutely horrible to lose a much wanted child and have someone wave their hand, saying, "Oh it's not like it was really a baby anyway." Such cruelty persists in the case of death by miscarriage. It hurts terribly to have your child referred to as 'a fetus' or 'a blob of tissue' or 'not really real'. Even writing this brings stinging tears to my eyes.

Sometimes, as a way of protecting themselves from pain or because of outside pressure, a parent may be the one to refer to their child this way. Gently encourage them to think otherwise if they seem open. Drop it if they don't. Follow the lead of the parents. Don't assume that a parent who appears ok about their loss, actually is ok about it. They may feel inhibited to express their heartbreak for fear of what might be said in response. A beating heart can be seen on ultrasound between week 6 and 7, the baby is fully formed by week 12 and a pregnancy loss that occurs before week 20 is technically called a Miscarriage. Also babies as young as week 23 have been known to survive with current NICU technology. These technologies offer first hand evidence that a beloved child is not 'just a blob'. I have to ponder the thought process of a person who says this - exactly when does a baby become real? I think that for most people, it is when they themselves first see the child. Certainly, even Heloise, Imogen and Søren are not real enough for some. Technology provides us with the ability to know when we ovulate. We can see the size of our eggs through ultrasound, we can know the exact moment of conception. More couples are taking advantage of the advances made in assisted reproductive technology (ART); parents who could not become pregnant, now have a chance. This means that a far greater number of parents know if they've miscarried at far earlier points in time than the previous generation. Attitudes must change along with these advances so that these parents can grieve their loss.

"How wonderful it is that nobody need wait a single moment before starting to improve the world."
~Anne Frank~

Special Care for Very Young Mothers and Dads It broke my heart recently to hear from a young mother who had lost her beautiful child. She was young, just 18 or so, and really grieving completely alone. It seems that those around her were treating the death of her child as an 'opportunity' for her to get herself together. Things were said like, "Well, now you don't have to take care of a child at your age" or "Let this be a lesson to you so you don't get pregnant again". Unimaginable cruelty! A child's death is not a mother's lesson, no matter how young. Understandably, when an unplanned pregnancy occurs, there are many conflicting emotions experienced by everyone involved. Quite possibly many of these emotions are negative.

I cannot comment fully as I have not had any personal experience with this. But I can imagine the incredible pain; to have one's child die after weeks or months of feeling overwhelmed, fearful or alone. It seems a cruel trick to be given this chance, however unprepared one may be, to only have it taken away. Please don't torture a young mother or father more by calling their loss "a blessing in disguise" or any other such sentiments meant to downplay their loss. No matter what you think is best, these parents feel pain and need proper support. Be stronger than your convictions and offer it. Just because a mother is young doesn't mean that the right support should be held in reserve. Additionally, mothers who adopt their child out may experience similar feelings of loss and are also very vulnerable, needing support. Please help them receive it.

"The people who say you are not facing reality actually mean that you are not facing their idea of reality."
~ Margaret Halsey ~

Please don't attempt to control a parents thoughts and feelings Many parents need to go over and over the chain of events leading up to their loss. They need to talk through things, they need to ask difficult questions like 'what if' and 'if only'. Sometimes this can be hard to hear, it may seem to you that a parent is blaming themselves for all that has happened. It's important for parents to have the opportunity to verbalize their fears, to share their concerns. The best thing you can do if this should happen, is to be a good listener. It is simply impossible to not feel some level of responsibility when one's child has died. We all have to ask ourselves if we did all we could do to help them; we need to know that we were good parents. We need to be able to draw our own conclusions from these very deep and difficult questions. It does not help to have others tell us not to think a certain way. This will keep us from finding balance with these issues. Grieving parents have so many difficult thoughts and feelings to work through - whether they be feelings towards other pregnant people, or other people's seemingly troublefree lives, or feelings of regret within themselves. If you have some concerns, perhaps provide them with a pamphlet for a local support group or accompany them to see a grief counselor for some added support, rather than telling them to stop talking about these difficult things.

Please Don't Force Your Opinion On A Parent About Their Situation This is quite unwanted. You cannot know what a parent is going through or what you yourself would do if you were in their shoes. Do not tell them how or what you would do or how you would behave. This is an extremely negative thing to do to a parent. The resentment the parent may feel towards you could last a lifetime. You simply cannot know what you would do in a particular situation, especially the death of a child, without personal experience. This includes forcing your opinion on parents who have been given a bad prenatal diagnosis or who face a decision about ongoing treatment for their very ill child. Parents need to decide for themselves if carrying to term a baby who may not/will not live or who will be severely handicapped is something they can do. You may think you know what you would do, but you must put these thoughts aside in order to be supportive to the parents. Parents in this position are faced with an impossible dilemma, to watch their child die now or later. This is not a 'choice', this is a nightmare. One parent I know said that she recently realized that no matter what she would have done, she would still be met with opposition, "Somebody always thinks they know better." were her exact words.

"When you are sorrowful, look again in your heart and you shall see in truth
you are weeping for that which has been your delight."
~Kahil Gibran~

Please Don't Give Parents the Third Degree - Do Not Be Deterministic When something goes wrong, there is oftentimes no reason for it. There is nothing that could have prevented it, there is nothing the parent did or didn't do to cause it. Parents don't benefit from having someone else pick over every detail of their pregnancy, as if trying to pinpoint the exact moment when things 'went wrong' (or to have someone insinuate that they themselves did something wrong). I have had people imply that the food I ate, the activities I did or didn't do, the fact that I am older, right down to the thoughts in my head are all reason's for our tragic losses, presumably an attempt to provide a clear chain of causation. My neighbour asked me (after Imogen died) if Søren died because I swam in the pool! Firstly, NO. Secondly, I never even swam in the bloody pool! I've also had someone ask me if my baby died because I lifted too many heavy boxes! Firstly, this is inane. Secondly, why on earth would he think I had a lot of heavy boxes to lift?!

What does this person think I do all day, work for UPS? This kind of help is not very helpful. These are preposterous speculations that implicate me, the mother, in the death of my child, with no factual basis pertaining to anything. It is impossible to hear such pernicious offerings without feeling a lot of anger and bitterness. I find the people who make speculations about my 'thoughts' very troubling. What I glean from such interactions is that if I could only control my mind and the thoughts in my head, I could avoid all the terrible things that have happened to us. This is incredible B.S. My thoughts can no more control a child growing inside of me than they can a person standing before me. If peoples minds were this powerful, then I see no reason for death or tragedy to ever occur. But it does. Millions of people prayed for Imogen; Kieron and I kept a constant vigil and remained determined to give her a positive life experience. Søren and Heloise were on dozens of prayer chains. If minds could change outcomes, wouldn't millions of minds be able to?

"All the darkness in the world cannot exstinguish the light of a single candle."
~Maria Gautier~

Please Don't Offer Unsolicited Medical Opinions This one really peeves me. Only my doctors are qualified to offer an opinion on what happened. They were there. And only my doctors are qualified to offer an opinion about the management of my pregnancies. Again, they were there. I don't mind advice if I have asked for it, but it seems that with our losses, we have been offered a lot of unsolicited advice - amazing advice in the form of old-wives tales to statistical analysis by people who don't have any idea about what they are saying - things that are completely irrelevent to what has happened to us. I have had people say to me things like, 'Next time you shouldn't do anything - you should just go on bedrest'. My own doctor doesn't say so - he has never implied that I have done anything to hurt my babies! Or, 'Some women aren't strong enough to carry a child'. Ouch! painful! Just slice me open! Or, 'Well, there must definitely be something wrong with you'. (painful again!) Or, 'Preemie boys don't do as well as preemie girls'. Cringe - No doctor said that was why Søren died.

Additionally, we have people who want to believe that Imogen's unknown genetic anomaly came about because I am over 35 years old and "asking for trouble". This is B.S. While it is true, certain genetic conditions increase with the mothers age (Trisomy 21 - Down Syndrome), the increased risk does not preclude the probability that a perfectly healthy baby is most likely. When one is faced with a 1 - 2% chance of Trisomy 21 (the age-related risk for a woman around 40 years), doesn't that say to you that they have almost a 99% chance of not having Trisomy 21? Imogen had an as of yet unknown genetic anomaly causing growth restriction. The chances of this are in the 1 in a million category. I appreciate it when people are suitably respectful of this awe inspiring fact. So please, don't discourage an older mother from trying again just because you have been reading the latest medical advice from 'Cosmo' or 'Newsweek'. Only a genetist knows the truth about genes. I trust ours implicitly. Her words, "I hope that you two try again. There is no medical reason to think you can't bring home a wonderful healthy baby" mean the world to us. Thank you, Ann.

"Some win eternal life only after many years, others, a single hour."
~Talmud~

To illucidate further: Avoid the Blame Game I find it frustrating and annoying when I hear things like, "Your doctor must not know what he is doing." or "If you were back here this wouldn't have happened." or "You must not be receiving proper medical attention." Kieron and I receive that best and most up-to-date help that the medical community has to offer. I am originally from the USA and we currently live in Australia. Some people talk as though we are living in a tent in a third world country! With us, there is not likely to be another couple with exactly our set of circumstances. I have a cervix that does not function properly. This is not easy to fix in my particuluar case. It can really get my goat when others think they have the answer to this problem when our own specialists are stumped. I have had many different types of cerclages(stitches) and they have not worked. This would be the case no matter where I lived or where I received my specialist medical interventions. I currently have in place an abdominal cerclage. Thankfully, the head of OB and GYN at our hospital knows how to put one in because this is a very rare cerclage to have placed. There would only be a handful of specialists world-wide who would know how to do this. We also are not immune to feelings of anger and concern over what has happened with us. In fact, we do have issues with how my delivery and birth of Søren was managed.

We feel that they waited too long. They waited until Søren had become incredibly stressed before performing an emergency c-section. This added stress compromised his ability to rebound and fight the infection he acquired before birth. But then from their side of it, they didn't know he had this infection until he was actually born. There just is no way of knowing ahead of time if a child is ill with an infection or how ill they would be until they are born. One of our doctors described it like this, "All we have to go on with an unborn child is heartrate and ultrasound pictures. Imagine if the only information a doctor had about a patient was their hearbeat and a photograph. It's like trying to make a diognosis from inside another room." They thought they were doing the best thing for us by attempting a vaginal birth. In retrospect, Søren should have been born 1 or 2 days earlier. He might be here today if he was. But knowing this doesn't change the fact that our doctors did the best they could at the time with the information they had. In hindsight, all the unknowns become clear. But in the middle of it, only a percentage of this is knowledge. I know it can be so hard to understand the details of why a child dies. It is hard to understand why a child dies no matter if one knows the details or not. Yes, sometimes a doctor is to blame. Sometimes negligence was involved, or hospital protocol has gotten in the way of managing a risky situation in the most optimal way. But if the parents do not feel that their doctors were wrong, I don't see why others would know any better.

"God is closest to those with broken hearts."
~Jewish saying~

Don't Gossip Please Do not talk about bereaved parents behind their back. Do not assume the knowledge of facts that have not been told to you. If you want to know what happened, just ask and then, listen. Parents need to talk about their child. If you want to be respectful of a parents pain and suffering, don't gossip. And whatever you do, don't point and whisper! (You may feel insulted by this but it actually happened to me!) Remember That Fathers Are Grieving Too Fathers suffer tremendous pain when their child dies, and may feel as though they failed in their role as protector of the family. Oftentimes, people ask how the mother is doing and don't ask after the father. This is very damaging. A father may feel a lot of pressure to be the strong, supportive and protective one. These feelings are reinforced by the tendency of others to focus on the mother's pain. Without opportunities to express their pain, it becomes internalized, possibly destroying their longterm health and well-being. Some will think that fathers feel less pain because they didn't carry their child inside of them. I think the opposite. I think that not having this opportunity and observing it instead is just as hard. Talk to him. Let him know you are listening. Also, there is no shame in a mans tears. It takes great courage for most men to share them.

Grandparents Are Suffering Too Although I am not a grandparent myself, I can understand how hard it must be to watch your own child in pain as well as feel tremendous pain yourself at the loss of your grandchild. A double dose of pain. Please be gentle with grandparents. I think that my mother must feel a similar pain to my own when she sees all the grandchildren that her brothers and sisters have around them. She has lost 7 grandchildren; 4 newborns, 2 miscarriages, and 1 adoption. It breaks my heart to know that people can be insensitive to this, asking when her kids are going to get busy...... Please Don't Be Overly Cheery I know it's hard, but please don't cover up your fear of saying or doing the wrong thing with a bright and happy face. I know that when people do this, they are trying to appear positive. However, this action can be interpreted as a lack of compassion on your part. It feels like a cover-up, which in turn, suggests deceitfulness. It can be very painful and disorienting for a parent who has just lost their child, to be greeted with a big, slappy-happy hello. Be observant of a parents overall mood and adjust yourself accordingly.

"Absent in body but present in spirit."
~Corinthians 1:3~

If You Yourself are a Parent, Please Don't Complain About Your Child This can be very hard to endure, listening to another parent continually complain about caring for their child - such as hearing about the aches and pains of pregnancy, or the daily grind of changing nappies, and breast-feeding; or if older, about how hard it is to run around to soccer practice and ballet lessons. There is nothing a bereaved parent would love more than to be able to do these things with their child. Be conscious of this when you are with a bereaved parent. I actually had a mother tell me after Aurora died that, "Kids are a lot of trouble anyway." I wondered how this was supposed to comfort me. Maybe it wasn't. Another friend told us that we were "so lucky" because we could go to all the movies we wanted to see whereas he has to help with the kids. That didn't go over very well. Recently, I encountered a group of friends, one who had just had her little son. She had been gushing about him, just beaming, like all new moms do.

But as soon as I approached, her whole dynamic changed. With a somber expression, she focused on the less precious aspects of her new role with comments like: "Oh, he cries all the time" and "I'm just so tired now" to "He's alot of work". It seemed as though she wanted to downplay the whole experience with me around, as though she would be able to diminish my pain by making motherhood seem like a big chore. It didn't work. No bereaved parent is going to be convinced into thinking that taking care of a much loved child is a big ol' bummer. While on the one hand, I was appreciative of the fact that she tried in her own way to help, it was uncomfortable for me because I felt like such a party pooper. I felt left out in so many ways - I wasn't allowed to feel joy for her or to share the joy I have towards my own children. I appreciate how this was an awkward moment for us both but still, I felt excluded from motherhood.

"There is no end. There is no beginning. There is only the infinite passion of life."
~Federico Fellini~

Don't Keep Looking For The Silver Lining In the last 20 to 30 years, there has been an awakening of a desire in people for self-exploration. A trip to your local bookstore will provide you with an opportunity to select from a wide range of self-help books from autobiographies to books covering specific topics. I think it is wonderful that there is more open discussion about life experiences. A word though, to any bookshop owners out there: Could you please move your books covering the topic of child loss to a different area than the Pregnancy and Child-rearing section? Thank you. While I think this is positive, there is a tendency to wrap difficult life experiences up into neat packages. I don't like the push to find good in everything bad that happens. I've been in conversations with people who can't let a bad thing be bad. I think that this is the genesis for many of the comments that bereaved parents hear; people don't want to believe that life can be unimaginably random and cruel. A former friend said to me on the phone after Imogen died, "You HAVE to BELIEVE that this could never ever happen again. It just can't. It simply can't." Her tone, and the other details of our conversation were very disturbing to me. I knew that it could happen again simply because it had happened the first time. I decided that I didn't want to communicate with this person any further and I'm glad of this decision. What on earth would her reaction to Heloise be?

Magazine shows like 60 Minutes or A Current Affair create a biased package of someone elses horrifying tragedy then wrap it up into a tidy 5 minute segment that ends on a positive note. Oprah focuses almost exclusively on the positive, asking guests to share the good things that have come from their catastrophes. The 6:00pm news recently showed a woman giving a press conference 2 days after the death of her husband at an island resort on their honeymoon. She thanked them for the wonderful time she had. Her husband died but she was thanking the resort? This all seems messed up to me. I acknowledge that good can come from bad. Parents don't want their childs death to be in vain. That is why participating in research or donating life-saving organs are so meaningful to parents. However, I will never agree that it has been a good thing to have our children die. If in ten years time Kieron and I appear happier than we do now it won't be because our children are dead. Death is permanent. Clive James said in answer to a question about the 'positive' things that have happened in his life following his fathers death: I would not be who I am today if it hadn't been for the death of my father. Everything that I have done has been in reaction to this. But to praise this is wrong. I would much rather be a nobody with a father that a somebody without one. This is the most truthful statement I've heard yet.

"What we call the end is also a beginning. The end is where we start from."
~T.S. Eliot~

Don't Use Sports Pep Talk Such as: "Oh well, third time lucky." (told to us by someone who at the time, chose to ignore the fact that we'd had four losses, not two) Or "Gee, better luck next time." Or "Just keep trying; you'll get it right sometime soon." as if all we are lacking is skill, talent or expertise. I don't know any parent out there who feels pepped up after such tidbits. These comments are minimizing and belittling, and it is insulting to a recently (or not so recently) bereaved parent to feel that their lifes worst tragedy has been reduced to a quote from a Gatorade commercial. If there is one thing I would like people to know, it is that there is nothing that can be said that will take away the intense pain that this type of tragedy - the loss of a child, or of any loved one - creates. Nothing.

And by offering platitudes specifically intended to minimize the pain, you are in reality, creating more of it. I hope that by reading Positive Actions, you will feel much more confident in the value of silence, the value of a willing, listening presence, and the value of showing the kind of love and respect that a bereaved parent craves. I hope you feel confident in the value of speaking their child's name. I also hope that you understand that whatever pain you yourself feel for the tragedy, the parent's are feeling it so much worse. I hope you understand that the right reaction is to put the parents needs before your own. I truly empathize with the challenge faced by family and friends. And I also know how hard it is to accept being told what to do, or told how to react. I too, once was like you - a person who hadn't lost a child. How I wish I had had this honest guideline then. Know that if you do not know what to say or do, it is ok to tell the parents this. We understand your fears.

Subsequent Pregnancies - Handle With Care

Subsequent pregnancies are pregnancies that occur after a loss. This section deals with the specific emotional needs of a bereaved parent who embarks on this difficult path. A subsequent pregnancy is one of the hardest, most stressful period of time that a bereaved parent will face following their loss(es). So many of my bereaved friends have said that they feel that their innocence died along with their child. What was once a joyful time is now a time filled with apprehensions. Many parents will have frequent pre-natal visits, or may be under the care of a perinatalogist or obstetric specialist. Some, like myself, will be considered high-risk. It shows great courage to prepare for another child. To become pregnant again means to risk death again.

We were visited by these 4 cockatoos on the day we conceived Imogen. We took it as a sign that someone special was on their way. I couldn't wait to tell Imogen that she was brought by cockatoos, not the stork!

"Faith is the bird that feels the light when the dawn is still dark."
~Rabindranath Tagore~

Understandably, Parents Feel Fearful; Respect This Subsequent pregnancies are very hard to face. We know, we have lost 5 babies. This makes us feel very anxious as well as inadequate and at times, hopeless. It doesn't help when people try to brush aside the well-founded fears we have in regards to this potentially terrifying experience. Please don't ridicule or minimise parents' fears of another pregnancy. It helps to have people be positive, but not at the expense of our fears. For example, being positive doesn't mean saying something criptic like, "Oh, just be positive." And being positive certainly doesn't mean arguing with us about our very realistic fears or trying to convince us that "it's all in your head" or that it "won't happen again". Terrible things can happen again(and have for some). It is helpful when this reality is quietly respected, but not dwelled upon. There is a lot to be said for the power of positive thinking in regards to helping one live life. But in pregnancy, we unfortunately know all too well that things can go wrong regardless of how one is thinking.

None of the things that have happened to us happened because we (or as the mother 'I') wasn't positive enough. It's cruel to imply this in such a casual comment. Perhaps instead, try behaving positively yourself instead of forcing a parent to be. Take a moment to think before you speak. No mother who feels that her body is betraying her wants to hear something like, "I hope you don't lose this one too." or "Maybe you'll be able to hold onto this one." Or to a mother who is older, "You are more likely to have trouble as you get older." Gee.... thanks a bunch. As well meaning as these comments are intended to be, they are negative, pessimistic and they hurt! They make me feel responsible for my babies deaths, as if my body is defying me on purpose, and I should be able to control it. And the one about age makes me feel as though I am 'asking for it'. Not true! Also, remember that any subsequent pregnancy should not be considered a replacement for the baby(s) that died. When you learn of a new pregnancy, don't say to yourself, "Whew, now we don't have to think about...."

"I don't know why people think that we want some kind of a consolation prize.
I was ready for a baby, so we had Hannah. Hannah died.
I am still ready for a baby. What's so strange about that?"
~Julie, Hannahs Mom~

Avoid Offering Blessings with Disclaimers Such as these comments recently offered to a friend of mine - "Good luck! You're going to need it!" or "That's great but don't get too excited......you never know what's going to happen." or to someone who is already pregnant, "It's great that you are trying....." Ugg. I know, you are probably thinking that no one could be so outragiously insensitive but I'm here to tell you that yes, these things have been said. And probably more often than we could ever imagine possible. Comments like this infuriate me. Infering that a bereaved parent will need more "luck" than a "regular" parent is insidious.

And when exactly should one get excited about their next child? If one were to follow this advice it would mean constant withholding of love for this new child - literally for their entire lifetime. After all, you never know what is going to happen.... Why would anyone advise or expect this of a bereaved parent? Or any parent? Is this the depth of denial that our society is willing to go in order to avoid feeling pain? This frightens me. Subsequent pregnancies are hard enough to endure without such obtuse remarks. As my friend said, "I don't appreciate people raining on our parade!"

"Courage does not always roar.
Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow."
~Unknown~

If a Couple Is Having Difficulty Conceiving....... Please Don't Say With a Wave of the Hand, "Just relax...." This is important. We have all heard the proverbial story of the couple who tried for years to have a child, only to become pregnant one month after adopting - the result of relaxing, so the theory goes. It's true, this tale does happen, but to a rare few. Realize that when words like this are used, they serve to treat the seriousness of the situation with indifference, and succeed in making a couple feel that their fertility problems are all in their heads. (there's that 'thought control' myth again!) This can be particularly destructive because it may inhibit them from seeking help from a professional. This could waste valuable time.

The reality is, there are many possible physiological reasons why a couple may not be achieving pregnancy. Relaxing does not change blocked tubes, endometriosis, anti-phospholipid antibodies, or a low sperm count or motility; to name a few. A thoughtful friend who knows the details could gently ask, "How do you feel about seeing a specialist? I could go with you." Kieron and I visit a Reproductive Endocrinologist at the Royal Hospital for Women and a practitioner of traditional chinese medicine at the Clovelly Traditional Chinese Medicine. I find our active pursuit of professional expertise a positive way to keep our spirits up and ourselves sane. Also, don't say, " God will give you a child when he is ready." This is oftentimes not as comforting as intended. You may only succeed in making people really angry at God. And also at you. God isn't Santa. The Almighty doesn't dole out children to people like Christmas candy.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.
You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along."
... You must do the thing you think you cannot do.
~Eleanor Roosevelt~

Please Don't Underestimate the Impact of Consecutive Losses It is unbelievably, horribly awful to experience loss after loss. I can hardly believe that Kieron and I have lost 5 children now. There are no statistical tables that account for what has happened to us. Our specific losses are rare individually, and unheard of collectively. Sometimes, I fear that there are those who think that we have 'gotten used' to having our children die. In fact, someone even said to me once, with a little nervous laugh, "Oh well gee. You must be used to this by now." I didn't know what to say to that. I sometimes wonder if our tragedies cause people to become numb. I have noticed that since Imogen died and now with Heloise's death, there isn't much show of concern for us. And Kieron often feels that he doesn't get any credit for the success he has had with his career despite the disabling effects of dealing with layers and layers of grief brought about by a loss a year for over 5 1/2 years.

As another bereaved parent said to me, "One of the things I hate to hear (and seem to hear all the time) are stories of women who experienced a multitude of losses - you know, 10 or 15 miscarriages - then later gave birth to a healthy, living child. While I know people are trying to be encouraging, it really makes me angry because it trivialises each loss. I have to remember that the people who repeat these stories do not understand how devastating - and cumulative - each loss is. When we were certain that this pregnancy had failed a couple of weeks ago, a thoughtful friend asked whether this was more or less difficult than losing Charles. I gave this question a lot of thought, and my answer is that it's both. Less difficult in the sense that I've been to hell and back, and now I know that I can survive. Also easier due to the length of the pregnancy. However, I do think that losses have a cumulative effect, and in a sense I have grieved the loss of this baby AND Charles all over again."

"The aim if reached or not, makes great the life."
~Robert Browning~

A crucial comment to avoid: "If this doesn't work out, you can always adopt!" Firstly, if the parents are pregnant, what the....? I don't think it is unreasonable to behave a little more optimistically! And if they are not pregnant, your alternative plan may not be welcome. Their child(ren) has died. Their child is not replaceable. It's best to avoid making comments that sound as though they are. Secondly, this is not a novel idea. Yet people say this as if it were some kind of 'lightbulb moment' - Hey! Ever considered adoption? I often feel like being really difficult and saying, "Adoption? What is this? I have not heard of this thing called adoption." I haven't yet though. This issue makes me a bit sassy. I feel the suggestion is that we should resort to the 'next best thing' or to 'take the easy way out'. The thinking is that we will be spared pain and that all we need is a child. It doesn't matter how we feel about this or that we would not be biologically related. I would never adopt a child if I held this 'second best' attitude. How awful for us all. Adopting is as traumatizing and painful as any subsequent pregnancy. Perhaps more so. I can't imagine anything more painful than to go through the preliminary screenings required by most adoption agencies. Imagine having to prove to a group of strangers that you are good enough to be a parent when you've already done more than most parents could ever imagine possible. Imagine having gone through infertility or miscarriage or stillbirth or an infants sudden illness and death to be told, nope sorry. You are not good enough. Plus, children do no grow on trees. You can't pick them up at the grocery store. Local adoptions can have long waiting lists, sometimes years long. Sometimes age restrictions apply.

Adoptions can cost significant amounts of money. International adoptions can cost thousands of dollars, upwards of $30,000AUS dollars; a real prohibition for some. Adoption also carries risks. Suppose the birth mother wanted their child back? Or you don't get the child you had been promised. Suppose you adopt from overseas and the host country decides that they aren't going to give you a child but feel obliged to keep your money. We have had many individuals ask us if we were 'going to adopt now'. The first time we were asked was after our first loss. Losing Kae was devestating, but his death did not mean we couldn't try further and to be asked this was quite frankly, insulting. There seemed to be a hint that we weren't 'capable' of having children. I don't want to be told by someone that this is a great option for us or that its a way to avoid having dead children. Nor is it a 'backup plan'. I have wanted to adopt since long before I was married and had children. I think it would be great to have a child join our family from another country, one who would never have a happy life remaining where they were. But this is our private decision. To be honest, adopting a child is not the same as having one's own biological child - not better, not worse, just not the same. These are very personal and private issues, not something that you just toss out there at a dinner party. No one appreciates having their private matters bantered around over drinks. It is not anyone's business. Adoption is an entirely different journey that I feel deserves it's own separate level of respect. Some parents don't feel right about adoption. Other parents don't feel that they could adopt after the death of their child. There is no reason to think that they would. Their child died. It is very difficult to know when or if one is ready to take another risk.

"We must be the change we wish to see in the world."
~Mohandas K. Gandhi~

Avoid Proverbial Stories I think it is wise to entirely avoid telling proverbial stories in regards to pregnancy. Kieron calls this the construction of false experience - or fable making. This could be a book, in-and-of itself! If I hear one more story about the mythological chinese woman, who after squatting in a rice paddy, grunting twice, pops out a big, strong, healthy baby, only to go on to finish out the days work, I will just scream. To be sure, I know she's out there somewhere.........but sofar, she's not me. I could also do without the Greenpeace type comments like, "There are already too many people in the world." , as this has nothing to do with the death of our children or our desire to have a family of our own.

24 weeks pregnant with Imogen; a very unproverbial pregnancy.

"Know in your heart that all things are possible.
We couldn't conceive of a miracle if none had ever happened."
~~Libbie Fudim~

Special Care for Parents with a New Arrival I have observed with my friends from MISS, that going through the birth process and delivering their subsequent baby opens up so many emotions and grief reactions. Going to the same hospital, or having the same room or staff members can trigger tremendously painful memories, almost like the moment of loss is relived again. I hope that all parents surround themselves with excellent care in their sub pregnancies and that the staff caters to their needs. Kieron and I are in a unique situation in that all of our "subby bubbies" have died. We do not have a normal, if there is one, experience of pregnancy and birth. Still, we have felt the huge array of emotions with each new baby that all bereaved parents are likely to feel. I know that when Imogen was born, we couldn't help but be fully aware of what we missed with Soren; such as seeing his eyes, or seeing him move and respond to us. We were delighted to have Imogen, but so sad that Soren, Aurora and Kae weren't there with us. Her presence made their absense more acute. As a support system, it is important to remember that this new child is not the parents first child. I think most parents feel angry when this pretense is adopted. Bearing this in mind, please do not send a card that says "To the first-time mother/father" or that refers to their child as "first child/grandchild".

A simple congratulations card will be appreciated. Also, avoid pressuring comments like, "Now you just need a boy/girl and your family will be complete." No one whose child has died will ever feel that their family is complete, especially after just giving birth after a stressful and scary pregnancy. This also won't go over well if their child that died is the opposite gender from their new living child. Just be happy for them to have their new child here, safe and well. Avoid making judgements, such as "You should be happy now." or "Now you can put all that sadness behind you." If a parent feels sad, they are entitled to it, one of there children is not here. Also, don't make a big deal out of their display of happiness, such as "I am so glad to finally see you happy." If you have avoided the parents since their child died, now is not the time to waltz back into their lives. They are not "all better now" or "easier for you to be around". This new childs birth is not all about you or about what is convenient for you. It is really best if you do not pretend that there never was a child(or children) that died. It isn't the new childs job to replace the child that died, and I don't think it does anyone, and I include the new child in this, any good to act as though nothing has happened. So, don't be afraid to acknowledge the child who has died. Don't be afraid to mention him.

Specifics to Parents in the NICU: Newborn Intensive Care Unit

Kieron reads to Imogen in Level 3, Newborn Care Centre

It is at first shocking, then extremely stressful, scary and overwhelming to have a child born early or ill. The childs early birth may have come as a complete surprise, or may have eventuated after maternal illness or pregnancy complications. A child born at 28 weeks, also known as a 28 weeker, statistically has a 95% chance of survival. But although survival rates are so fantastic, babies still die or have a hard long stay in hospital depending on their individual situations. Both Soren and Imogen were born at 28.1 weeks. Each of them had specific issues that impacted on their potential. I remember how Soren, at 1375 grams (3pd4oz), was a very big boy compared to the 600 gram 24 weeker to the side of him. Yet this tiny baby had a much more optimistic outlook because unlike Soren, he had not been born with an e-coli infection or endured a distressed birth. This section is geared towards parents as well as their families. Below we've briefly outlined some simple ideas for supporting parents in this situation, and some of our strategies for coping in the NICU, should you be in for a long stay.

Our First Impressions Before we ended up in Hospital on bedrest with Soren, I had been enjoying a completely uneventful pregnancy. Then all of a sudden we found ourselves in this very high-risk situation, not knowing what would happen, feeling very worried about our child. Many outsiders did not understand the seriousness of our situation and behaved as though we had nothing to worry about. With media focusing attention towards all the 'miracle babies', people seem to have become complacent. But even though the media occasionally features a story about preemies, no parent is prepared for the NICU. Our NICU is structured so that the sickest babies are in the back. Parents must walk past all the 'growers', babies who are in Level 2 or 1, to get to their child. Hand washing is paramount in controlling the spread of germs. And the unit is very warm - Stephen, one of Soren's nurses was in shorts. The noise is stressful as it mostly consists of bells and alarms, alerting the staff to potential problems. And it is rather dark, with glaringly bright banks of bili-rubin lights over some babies. No parent is prepared to then see their child, who isn't supposed to be born yet, hooked up to a ventilator, covered in I.V's, small and fragile on an open bed, getting suctioned. Soren was so ill, he never opened his eyes. Seeing him for the first time, in this setting, so not the full-term baby of our dreams, was heartwrenching and confusing.

We loved him deeply, but we didn't know how we were going to be able to show him this love when we couldn't even touch him. With each passing hour, he seemed to get worse - then marginally better - then worse again. Part of me was horribly afraid to love him in case he died. But I realized that we couldn't run away, we couldn't protect ourselves from pain. We had to do what we could with the time we had. With Imogen, we knew what to expect from the environment of the NICU, but we didn't know what to expect from Imogen. Our first meeting was very different. As soon as I saw her on the bed, wide-eyed and alert, I said, "hello little girl" and she threw her arms in the air, looking over in my direction. She was so so tiny in size, but so big in spunk. Our hearts filled with unrestrainable optimisim - she was so alive! Imogen's first photo

"Treasure each other in the recognition that we do not know how long we will have each other."
~Joshua Liebman~

For Family and Friends If you are wondering if you should send a congratulations card, do. I cherish the ones I received for Soren and Imogen. If it doesn't feel right to you, send a card that isn't geared towards the traditional baby message. Send one that allows you to write your own message. Whatever you do, do not send a sympathy card. This is not the appropriate sentiment to convey. It will seem as though you think their child's birth is a tragedy. While it is important to acknowledge the seriousness of the situation, parents are very proud of their children and incredibly grateful that they are alive, even if they later become the rare parent who will face their child's death in the NICU. When Imogen was born, we received books about preemies from a good friend. These books proved to be invaluable for me, validating many of our complicated reactions and explaining never-before-heard-of procedures. This is an excellent gift to give. Much of what I have described in the above chapters applies here. *Providing food is so helpful to a parent who spents 16 hours a day at the NICU. *Child-minding would be so appreciated so that parents can focus on their ill child and participate in their care.

*Looking at photos and complimenting their strong beautiful child will give them energy. *Offering to field phone calls or to send out emails detailing their childs progress is helpful to an exhausted and stressed parent - just make sure you have all the facts correct. Also, crib toys are allowed for bubs that are in for a long stay. If you send one, something small is best. There are specially designed preemie bottles, nappies, snugglies, dummies etc. My mum brought Imogen a preemie dummy and she just loved it. Prior to this we had nothing that was small enough to put in her mouth to help develop her suck. Her eyes literally lit up when she latched on. Imogen with her pink dummy

For Parents - How We Coped Depending on the circumstances in which you find yourselves, the NICU may be a safe environment or a nightmare. With Soren, our time was hair raising and agonizing. Towards the end of his life, our nurses and doctors created an opportunity for us to spend time with Soren. We took it. We held him for hours, read to him, took videos and snapped many photos before he died. This time was invaluable. From our experience, we recommend the following actions. *Ask your primary staff every question that you have. No question is stupid. *Find out the best way to touch your child, and follow through. A firm touch is most comforting. I would often sit at Imogen's bedside with just my hand on her body, or next to her body. Also, we would hold hands. Light stroking was not recommended as it is too stimulating. *Find out all you can about your child's condition. *Adopt the activity of Kangaroo Care. It is so helpful for both you and your baby. Kangarooing can be done while on the ventilator. *Begin storing breast milk as soon as possible.

*Get to know the other parents. Some will have been through the worst with their child and can offer some support. *Go to all seminars about child care and development that are offered to parents in the NICU. *Read to your child. Kieron spent hours reading to both Soren and Imogen. Imogen always calmed at the sound of his voice. *Be there for difficult procedures. Holding your childs hand through something painful can make all the difference for them. *Don't obsess over the alarms and vent settings. It can drive you crazy. *Take photographs and video everyday. It is amazing to look back and see the progress. Take one photo a week of your child with the same toy. You can see how much they grow. *Provide a tape of your voice to be played when you can't be there. *Keep a daily journal - you can then keep track of all the meds and procedures that happen for your child. If you discover you have questions, you can ask them. *Keep visitors to a minimum. Don't allow anyone ill near your child and be vigilant about hand washing. *Stay away or wear a mask if you have a cold. A simple cold bacteria could be devestating to a preemie. *Celebrate all milestones. We had a party for Imogen's 2 month birthday.

More Palliative Care *Listen carefully to your childs neonatalogists - they will be able to provide the best plan for care. Don't listen to anyone who is not directly connected to what is happening (such as family on the phone). They will not understand what you are facing. *There is value to each day lived. Make the most of it. *Express to family that now is the time to visit if they hope to spend time with your child while alive. *Ask to do things that you think are not possible - We went outside with Imogen, while still on ventilation, to hear the rain. It was very relaxing and interesting for her. She rode out in a pram. *Do pleasant things, like baths and cuddling as much as possible. *If you have easy front door access to your home, you may be able to bring your child home on ventilation to live out their final hours or days. *Include staff with your family in your child's final day. They may have spent many weeks/months getting to know and love your child and will want to be present to say goodbye.

*Let your child lead you. They will know when it is time to go. Imogen eventually died in the NICU after nearly 3 months in Level 3. This is a very long time to be in the top level care of this facility. Everyone who cared for Imogen loved her. Some families were celebrating their first 100 days with parties and cake. We did not make it that far, but still celebrated every milestone that we could. Imogen in her final days.

"Resolved, that I will take each precious minute, and relish all the joy within it."
~Kathleen Rice~

Holidays, Mothers & Fathers Day Holidays without a beloved child are excruciating. Many holidays are geared towards children and families. What on earth does a person who's child has died have to be thankful for at Thanksgiving. It is hard to feel thankful and to share thanks when one is in pain. Christmas is the celebration of Jesus's birth and is a poigniant reminder of what we don't have. The sacredness of our own birth celebration has been destroyed with the deaths of our children. Then there is Santa and the glee of children so happy to be getting presents. These celebrations are an incredibly intense experience of isolation for many bereaved parents. There is Halloween, with all the fun costumes and trick-or-treating. There is Easter, which for children is all about the Easter bunny and eggs. There is the 4th of July with the fireworks. There is New Years Eve. And there is Mothers and Fathers Day, special days that are agonizing. Please try to remember that for bereaved parents, these celebrations can also be a time of great sadness. In the immediate aftermath of a child's death, it can seem that such celebrations are intentionally cruel and exclusive. As the years go by, a parent's feelings may become more integrated, but they will still miss their child....so much. 'Missing', is not a big enough word to use.

Do something special to include the missing child in the celebrations; light candles, purchase special Christmas tree ornaments, make donations to libraries or Special Care Units, mention their child in your Christmas card to the parents. You will not be reminding them of their loss because they will have never forgotten. Instead, you will be considered a very special person to have remembered. If you have special items like a Family Tree, or other such things that have everyone's name displayed, please include the child who has died. It is awful to not see their names alongside other family members. And in the case of a family tree, other deceased relatives are mentioned (hence the whole reason for a family tree) so a deceased child's name should be included as well. Do send a card to a bereaved parent on Mothers and Fathers Day. These days are truly awful - in fact, I have spent a number of them in tears, feeling like no one thinks I am a mother. If you feel uncomfortable about sending a traditional card, pick a blank one and write your own message. I remember the Mothers Day after Soren died, my good friend Lisa rang up and said, "You're still a mom!" This call helped me get through the day. In addition, if you know someone who is currently subsequently pregnant, please do not make the mistake of sending a card for Mothers Day that says, "To the Mother -to-be...etc" They are already mums, bereaved mums, and they will feel as though you don't care about their feelings on this. A card like that would have the potential to ruin my Mothers Day.

"In the depths of winter, I finally learned that within me lies an invincible summer."
~Albert Camus~

The Final Word Friends and family of a bereaved parent, thank you for taking the time to read this extensive guide! I hope you have gained some understanding of what a bereaved parent may experience with the death of their child. I hope you feel confident to follow their lead, to listen, to stand at their sides. I know that sometimes the best of intentions are misinterpreted. If this happens, and a parent becomes angry because of something that you have said, apologize - don't make it all about yourself. Just say you are sorry to have hurt them. They will feel better to hear this from you. To parents, we will all hear things that we don't want to hear. It is up to us to educate and forgive. With some distance and practice, I think we all can find our own ways of doing this. For me, it's been really cathartic to share my thoughts here. To close, even if you know someone who has lost a child years ago, you can still send a card just to say you are remembering, and offer some words of comfort and understanding. It's never too late to say you are sorry, or to tell a parent you remember their beloved child.

Karin standing under the street sign for Aurora Terrace; Hamilton New Zealand.

"Recall as often as you wish, a happy memory never wears out."
~Libbie Tudim~

---

This site, and all of it's contents,
is the property of Heloise, Imogen, Søren,
Aurora, Kae, Roku and Seven's parents.
Copyright 1999-2003
All rights reserved.