Experiences of grief

• “This should never have happened. I am furious!”
• “I’m not an angry person but…”

Anger is such a powerful emotion. It might be directed at:

• Ourselves
• Someone we love
• A professional
• Faith
• Even the baby or child that died

Anger is often in response to a deeper emotion (e.g. the pain and heartache we experience when somebody says something unintentionally insensitive). It is okay to be angry – it does not mean you are a bad person.

Listen to what the anger is telling you because bottling it up can impact your physical and mental health.

Some people find physical exercise helpful. Others prefer screaming into a soft pillow. Green and natural spaces are also a wonderful way to reset our sympathetic nervous system, making us feel calm.

• “I don’t think I’ve ever cried so much.”
• “I just can’t seem to stop crying.”

Crying is a helpful response to grief. It can release pent up emotion and communicates the depth of sorrow you may be feeling. Sometimes your tears may fall gently and silently. At other times, tears may come so hard and fast that you need to take short, gasping breaths between sobs.

If you have remaining children, it is good to let them see you cry and allows them to feel more comfortable expressing their sorrow and experiences of grief too.

The death of a baby or child is heartbreaking and no-one should feel as though they need to suppress their tears.

Take time to cry. Sometimes this may feel effortless and other times, it may be a struggle to give in to the tears you want to shed.

It might feel helpful to:

• Listen to certain songs (tap here to go to our playlist of bereavement songs)
• Read
• Listen to podcasts
• Look at your little one’s photos or belongings

Some bereaved family members find that having a good cry can relieve pressure on the run up to special days or certain events.

• “I don’t know how we can get past this.”
• “I can’t bear feeling this way!”

You may feel pessimistic about life after the death of your baby or young child and bereaved family members often question if a state of despair is going to be permanent. It can feel so intolerable at times.

Take heart that this feeling will pass.

Speak to other people with lived experience of the death of a baby or young child.

The Lullaby Trust has a team of amazing befrienders: mums, dads, grandparents, aunts, uncles, and adult siblings who understand and remember. They are here to listen and support. Importantly, they can show you that life beyond despair is possible. They can restore your hope, whilst holding a space for you to talk about and remember your child.

• “I  wake up and I forget.”
• “It just doesn’t feel real!”

Sometimes we can appear “normal”. Our friends and neighbours might say we are are doing “well” because we can’t cry, but it doesn’t feel like that at all. We know what we are feeling is a sort of numbness and disbelief, as if we are witnesses to someone else’s nightmare.

The break from feeling overwhelmed can be helpful. If you are able, use this time to fill your emotional reserves for the moments when you are feeling the depths of your grief. Is there a boxset you could watch or a book you could snuggle up and read?

If you would like the release of connecting with your grief, The Lullaby Trust have a bereavement playlist and helpful podcast suggestions that may be able to help.

• “Why my baby? Why did it happen to us?”
• “It’s not that I would wish this on anyone but…”

We may feel envious of families who have not had to go through these experiences of grief. We might find it hard to be around certain people, especially if their child is a similar age to ours. Seeing their “normal” life can bring into focus everything we feel we have lost: our baby/child, our hopes for the future, our daily routine, our innocence.

It can feel hard to admit we feel envy or jealousy but it is a very normal experience for bereaved families.

Acknowledge those uncomfortable feelings – they will pass.

It might help talking to a trusted other and explaining, ‘When I see Mary, I feel so envious because…’.

Try not to avoid people or situations for fear of feeling uncomfortable feelings as this can make it more difficult in the long run.

• “I should be feeling better by now!”
• “They want me to be my old self again now.”

When we are grieving, it can be really hard to balance how we feel with what we think others expect of us. Expectations from ourselves and others can add to our sense of burden and worry. We are socially programmed to want to please others. In evolutionary terms, being accepted into a group was important: it kept us safe from danger.

However, pushing down your feelings because we are frightened of other’s reactions can hinder your grieving process.

Allow yourself time. There is no schedule to grief.

Be open about the things you feel able to be open about, or the kind of things that feel helpful to you. For example:

• “I feel so low. Everything takes such a effort.”
• “I don’t care about anything!”
• “Thursday are so painful now.

Life can periodically feel bleak when you are grieving and it can take so much energy just to partake in every day tasks like cooking a meal, talking to a loved one, or getting dressed. This may be especially true at certain times such as the day or time that your child died.

If these feelings are persistent over a couple of weeks, and it feels difficult to enjoy little pleasure or a sense of connection to those you love, it is important that you seek help from your GP or therapist.

Set yourself little, achievable goals such as having a shower or changing into some clean clothes. Perhaps you could take the dog for a walk around the block.

Keep talking to your nearest and dearest for support through these experiences of grief. Help each other to recognise and acknowledge your own patterns in low mood. If a particular day is challenging for you, make sure you plan acts of self-care for before and after.

On the better days, it can be helpful to cook double portion and freeze half so that you have some nutritious, home-cooked food ready for when life feels more challenging.

• “Why am I still feeling like this?”
• “Why does everything take so long?”

Frustration and disappointment go hand in hand when you are grieving. You may feel frustration towards yourself, that you don’t feel you are coping as you think you should be coping. You may feel disappointed with professionals or the speed at which official processes seem to go.

It may feel like the world is just not able to keep up with the questions, thoughts or ideas that are racing through your mind.

When frustration is directed inwards: avoid using the words ‘should’, ‘must’, or ‘ought to’. These words are laden with unfair expectation and judgement. What do you ‘want’ or ‘hope for’ instead?

When frustration is directed outwards: write down or talk about it is that you are frustrated with. If you have questions, make a note of them in a special place so you have them when you need them.

Moving can help you release the pent up energy of frustration. Walk / run / swim / cycle/ dance yourself to a calmer place.

• “If only…!”
• “I should have known!”

Feelings of guilt or regret are normal when grieving for a baby or child. But whilst it may be “normal”, in the sense that it is experienced by many bereaved parents, it does not mean that that guilt is reasonable or deserved.

We tend to blame ourselves or look for things we might have been able to do differently, but you did the best you could with the knowledge and resources you had at the time.

Allow yourself the space to talk about any guilt feelings as they crop up. Let them out. Don’t keep them bottled up. If you have a specific question, it might feel helpful to speak to your paediatrician or GP for reassurance.

If you are alone, visualise sitting by a beautiful, flowing river. As your negative thoughts and feelings pop up, imagine placing them on a leaf. Repeat the mantra, ‘I did the best I could do at the time,’ and let the leaf flow away.

• “Please help me!”
• “I don’t know what to do!”

It is not unusual to feel helpless or powerless following the sudden and unexpected death of your baby or young child. You may be having to deal with unfamiliar arrangements and procedures. You may be struggling to care for other family members whilst feeling unsure how to care for yourself.

Reach out for support if you are able.

You should have a Key Worker as part of the Child Death Review process who will be able to keep you up to date with all of the procedural elements following your little one’s death.

The Lullaby Trust Support Team are here to listen, with no time limits. We can also signpost you in the right direction if you have specific support needs or wants.

Your GP, health visitor and bereavement midwife may also be wonderful sources of support as you face different experiences of grief.

• “I’m looking forward to…”
• “I am planning to…”

The good days are starting to outnumber the bad. Your grief is still there but it is gentle, like an old companion.

You now know that love doesn’t fade, and so it is easier to let go of the pain. You are able to ride out the biggest waves and you have learned from experience what helps you to feel better. You feel hopeful that you will be okay – that life will continue to get better.

Gratitude: be mindful of the little things that bring you moments of joy. Sometimes it can be helpful to jot them down in a journal or on your phone. Watch how, over time, more and more joy creeps in.

Do the things that bring you joy.

If you know you are facing into a challenging time, such as birthdays or anniversaries, plan something restorative to look forward to before, during, or afterwards.

• “Alfie was the perfect baby. We were so lucky.”
• “Zainab was delightful. She had the best personality.”

It is wonderful to appreciate your children’s unique qualities. When grieving for a baby or a young child, this normal process is often heightened. It is understandable to remember your little one as being perfect.

However, it is important to remember the thoughts and feelings of other children in the family. Sometimes children can feel as if they can’t live up to the memory of the sibling or cousin that died. They may feel as though they are less loved or sometimes as though it would have been better if they had died instead.

Balance. If you have other children in the family, share special thoughts, feeling and memories associated with those children too. Remind them that they are loved and cherished and would be missed if anything should happen to them.

Find helpful outlets to freely express how deeply wonderful your baby or young child was. Support groups can be helpful places as others will identify with and understand this natural process.

• “I take Alex’s bear everywhere with me!”
• “I had this tattoo done to keep my baby close.”

Following the death of a baby or young child, you may feel compelled to keep something of theirs, or a symbol of them, close to you. You may develop an interest which reflects an element of their personality or character. It is a way of keeping your connection to them close.

Flexibility and an understanding that the way you identify with your little one may naturally change over time. It can be most helpful to allow yourself the freedom to go along with what feels helpful to you in the present day, rather than sticking rigidly to a presentation or object out of a misplaced sense of obligation.

• “I feel up and down.”
• “When people ask me how I am doing, I always tell them I’m fine. Some days I genuinely mean it. Other days I actually feel really low!”

It is normal to feel neither here nor there. Some days may feel ‘normal’ whilst others feel filled with uncertainty about what your life will be like.

A future without the aching of grief might feel hard to fully comprehend, yet vaguely possible at the same time.

Be honest with your feelings: it is okay to not be okay.

If it feels hard to label your feeling with words, try colours or weather instead:

• I’m feeling stormy/settled/cloudy/sunny etc

Notice how these feelings change over time, and note what has happened to make that change. By taking time to purposefully pay attention to your wellbeing throughout the day, you will see that you are never stuck in one place for too long.

• “I just want to hold him.”
• “If I could only see her…”

The need to have our baby or child with us can be so intense, we might worry that we will feel like this forever. It may feel like a weight pulling in the centre of our chest, or it could be the physical feeling of emptiness in our arms.

Engage in activities related to caring for the memory of your baby or child.

Some people find it helpful to care for a plant or tree chosen especially for their little one. Others may tend to a grave. If you baby was a newborn, a memory bear weighted your baby’s birth weight may provide relief to  your aching arms.

• “I love her still.”
• “I feel loved and supported by those around me.”

The death of a loved one can often bring with it profound feelings of love. You may feel intense, enduring love for the baby or young child you are grieving. Sometimes you may feel other’s love directed towards you and your family. Occasionally, you may feel waves of love for the little things in life that never seemed that important before.

The good news is, the love you have for your little one is likely to be your most enduring emotional response to grief.

Allowing yourself time and space to sit with your feelings of love can balance the more challenging emotions.

Some people find it helpful to reflect on their love for their child whilst they are somewhere peaceful. Others may choose to keep a ‘gratitude’ journal where little bits of joy can be noted lovingly.

• “I didn’t think I would ever laugh again!”

You might find yourself laughing from time to time. Allow these moments of light relief – they do not mean you love or miss your child any less. Laughter will nourish your wellbeing, giving you a rush of endorphins which reduce the impact of stress in your body and reduce pain.

This means, when the next wave of grief returns, you will be more able to cope, and will find it easier to bounce back.

It can feel helpful to access familiar “funny” material, like a boxset or favourite film, if you feel like you need a release. The familiarity can help you to relax, knowing what to expect. It might remind your mind and body of happier, simpler times.

When you are able, it can feel good to recall the fun times you have shared with loved ones and friends.

• “Nothing used to faze me but now I feel panicked about everything!”
• “I feel so anxious about going to the party.”

You may feel panicked about a whole range of situations when you are grieving for your child; from being alone to seeing people; from feelings in the moment to what the future might hold.

Things may feel a little out of control and overwhelming.

If you start to feel a sense of panic or dread, try to stay grounded in the present moment. This can be a helpful exercise:

• What FIVE things can you see?
• What FOUR things can you hear?
• What THREE things can you touch?
• What TWO things can you smell?
• What ONE thing can you taste?

Some things may feel out of control but there may be some elements that you can gain control over. For example, if you feel panic related to bumping into someone you haven’t seen since the death, having a set, comfortable reply can relieve some of the worry.

• “I don’t feel right!”

Most people are aware of the emotional experiences of grief, but physical symptoms are also very common. It is not unusual to experience any of the following:

• Loss of / increase in appetite
• Sleeping more / less
• Tightness in the throat
• A knot / empty feeling in the stomach
• Shaking limbs
• Sighing
• Aches or pains in the stomach, chest or head
• Indigestion / nausea / diarrhoea
• Feeling weak or fainy
• Difficulty speaking as usual

If you are concerned, it is always advisable to speak to your GP or health care professional.

Try to keep to a gentle routine as far as possible, to give your body time to adjust. Allow yourself time for rest and try to maintain your usual bedtime routine. Exercise and natural daylight can assist sleep patterns and can also lift your mood. Nutritious food can reduce stress on your body.

• “I can do this by myself.”
• “I’m fine!”

Many of us are too proud to ask for help, even as we’re going through some of the most difficult experiences of grief. Maybe you have always been the person who people turned to for help. Despite our hearts being broken, we reply with, ‘fine!’ when people ask how we are, or worse, we overcompensate to hide how we really feel.

This can make us feel unsupported and it can also prevent people there for us.

Sharing our grief with others helps us to understand it. It is okay not to be okay. In fact admitting you are not okay may help you to feel stronger in the long run.

If it is difficult to share your feelings with those closest to you, a helpline or a befriender might be just the thing you need; a safe space to open up that feels a little emotionally removed from those who know you.

• “Why us?”
• “What would have happened if…?”

Often we find ourselves asking the same questions over and over again in the hopes of finding an answer we may never get. Doing this helps us to connect with our most challenging feelings. This is important in helping adapt and move forward with grief.

Writing your questions down in a special journal can help. Try and answer them as you would for your dearest friend, acknowledging the feelings that arise.

Speak to an understanding person so you can say your questions out loud. Having someone sit with our feelings without trying to change them can provide comfort and release.

• “It is real. They are not coming back.”
• “It suddenly feels so permanent!”

Despite going through many different experiences of grief, there comes a time when the reality just seems to hit. It might feel as if your grief is getting worse. It may coincide with a feeling that everyone else’s lives seem to be getting back to normal.

This may sound like a frightening prospect, but it is an important time where allowing yourself the time to gently go with the pain can allow your heart to begin to heal.

An open heart and deep self-care. The pain you are experiencing comes from a place of love. Allow yourself the space to feel and acknowledge it, and be compassionate to yourself whilst you do. Care for your physical needs and surround yourself with supportive people:

• “I keep retelling out story over and over again, to anyone who will listen.”
• “I feel like I am on a loop!”

In the days, weeks and months following the death of your child, it might feel as though your thoughts are on repeat. If this is happening to you, rest assured that you are not alone and this is one of the common experiences of grief.

Repetition can allow the reality of your experience to sink in gently as we hear ourselves retelling the story over and over. You may feel emotional when telling your story, and at other times you may feel a little detached.

Speak to understanding others when you feel the urge: friends, family, colleagues and neighbours often will provide an understanding ear. The Lullaby Trust Support Team are also here to listen, as are our team of amazing befrienders (all with their own lived experience of grieving for a much-loved baby or young child).

It might feel helpful to write your thoughts down too, or draw if you are creative.

If you feel repeatedly distressed, disturbed or triggered by your thoughts, please speak to your GP who will be able to help you access appropriate support.

• “I can’t stand being around them right now!”
• “I hate how life just seems to carry on as normal.”

Don’t worry, you are not a bad person! Feeling resentful or bitter is not an indication of your moral character, but a symptom of your pain.

It can feel hard to see others’ lives carrying on happily. It can be a reminder of how your own hopes for happiness changed suddenly and unexpectedly when your baby or child died, and that hurts.

It is important that you recognise and acknowledge these feelings when they arise. Give yourself permission to talk about them with a loved one, or trusted other. Bitterness can feel exhausting. Over time it can erode your relationships and your wellbeing. By talking about the things you resent, you relieve the pressure, and loosen their hold on you.

• “I miss them so much it hurts!”
• “I do not know how I still have tears left to cry!”

We can feel so deeply unhappy and inconsolable when grieving for our baby or child. Feelings of heartache seem to encroach on all areas of our life and it can leave us wondering if we will ever feel joy again.

Just as our love is immeasurable, so too seems our sadness.

Connection. Physical touch from a loved one or a treasured pet may bring you some comfort. When we share touch, our body releases endorphins and dopamine which can lift our mood.

Talking to someone can also bring that helpful feeling of connection.

• “I feel numb.”
• “I don’t know what to feel or what to do.”

Shock can make you feel:

• Disorientated
• Numb
• Restless
• Unable to think
• As if you’re just going through the motions
• As you’re an observer to someone else’s story

This is nature’s way of making sure you don’t feel too much too soon.

Self-care is important. Trying to maintain a healthy routine with sleeping, eating and drinking will mean that you have the resources you will need in the coming days, weeks and months.

If you are struggling to think, see if a loved one would be willing to take on administrative tasks for the time being. This will relieve some pressure until you can focus once more.

• “I just don’t recognise myself anymore.”
• “I don’t know who I am supposed to be!”

Everything has changed. Nothing is as we expected it to be, let alone our identity.

Parenting can take up so much of our physical and emotional world, it can feel challenging to adapt to a life where that isn’t the case. We can feel overwhelmed, wondering what to do / say / think for the best.

Sometimes we may judge ourselves if we feel we are “not grieving right”.

Be kind to yourself. Grief is hard work and you are doing it!

It can help to write or draw the values that are important to you, especially if these feel like they have shifted as a result of your experiences of grief. We are continually developing throughout life so don’t be afraid to let go of the things that no longer feel helpful. You wouldn’t wear a shoe that no longer fits!