After a normal and uneventful pregnancy, at 26 weeks Amy began to experience preterm labour symptoms. The couple were transferred from their local hospital in Stratford to a London hospital, and then to Toronto. Owen was born at 29 weeks with a condition called pericardial teratoma (a mass on his heart) and had a lengthy stay in the hospital with numerous procedures and surgery. He died in Amy’s arms when he was 109 days old.

“There are significant dates with Owen that we pause, we smile and we cry. But most importantly we remember. Most parents get years with their children and have many opportunities to share stories and memories. Being a bereaved parent is much different. There are only a handful of dates for us so October 15, Pregnancy and Infant Loss Awareness Day, is one for all of us to be able to share our stories and carry on the loving memory of our babies gone far too soon,” says Amy.

Across the world, October 15^th is marked with an International Wave of Light, intended to represent a continuous chain of light spanning the globe for 24 hours. To support bereaved families, friends and loved ones can come together light a candle at 7 p.m. Candles burn for an hour, representing the global Wave of Light.

For families, the day of remembrance is both healing and inspirational after losing a pregnancy or having a stillbirth. “Remembering their baby, and the hopes and dreams they had for their child, is such an important step in healing from a loss,” says Michelle LaFontaine, Program Manager, Pregnancy and Infant Loss Network. “The day of remembrance provides a safe space to share their pain, receive support and truly be heard.”

The Pregnancy and Infant Loss Network has some tips for how friends and family can support those who have had a pregnancy loss or stillbirth:

1. Attend a remembrance event – Attending and offering a hug can be such an affirmation to families, and shows you care about their well-being and healing.
2. Listen to their story – If your friend or loved one wants to talk about their grieving, spend time listening. Just by listening, you acknowledge their pain and grief.
3. Ask what is needed – Grief impacts everyone differently. Some families may wish to have their loss acknowledged during holidays, others may prefer to grieve privately which might mean missing family dinners or other gatherings.

Amy is now a peer support volunteer with the PAIL Network, drawing on her own experience to support other women and families who have had a loss. On October 15^th, Amy and Rick will gather with friends and family to light candles and remember their son who they call the “biggest little warrior.”

“The love we have for Owen is what got us through all those gruelling days and continues to keep us moving forward,” says Amy.

The post For grieving parents, October 15 is a day of remembrance appeared first on Your Health Matters.

Why was the Butterfly Garden event started?

The idea of having a butterfly garden was brought forward by a registered nurse in our Neonatal Intensive Care Unit (NICU). The staff in the Women & Babies Program care deeply about the bereavement care we provide. Having an annual memorial is our way of ensuring these families know that they are still in our thoughts; as are the babies they have lost. It is so important that we offer a sense of community as well as a space for reflection.

Who attends? Is it families who have recently lost a baby, or families where time has passed?

The Butterfly Garden Ceremony is open to any family who has lost a baby at Sunnybrook at any time in the woman’s pregnancy or thereafter. Family may include the bereaved mother or father but may also be a sibling, an aunt, uncle, gramma, grampa, or supportive friend. Families can remain on our email invite list and continue to come for as many years as they wish; and they often do. We welcome anyone for whom this event is important and healing.

Why are events like this important for families who have lost a baby?

The ceremony is important for so many reasons. Some do not feel well-supported or understood by friends and family and feel best understood by other members of this community. The ceremony is also an important way for some families to commemorate and acknowledge their child’s life and passing. The ceremony offers a safe space to let your tears flow and to feel accepted for however your grief is manifesting that day. Some families greatly value the care they received from Women & Babies Program staff. Sometimes, the staff here are the only people who met their child and who walked beside them through their darkest hour; so reconnecting with these people is very meaningful.

What tips can you offer for family and friends who have a loved one who has lost a baby?

We can feel really helpless when someone around us experiences a pregnancy or infant loss. Here are a few tips:

1. Take your lead from the bereaved couple as to how you can be supportive to them at this time. Listen. Instead of assuming what would be helpful and dropping off the fifth lasagna at their doorstep, start by asking “What would be helpful and supportive to you?”
2. Take your lead from them also in terms of how they are processing this life experience. For example, what language they use, and how they are making sense of this event if they can make sense of it at all. For example, do not tell them to “be strong” if they need to stay in a vulnerable, sad place. Do not tell them “everything happens for a reason” if this is not the language or way in which they are processing this. These comments can be hurtful.
3. People can be uncertain about whether to acknowledge a loss for fear they may upset the bereaved couple. Generally, I encourage people to consider the timing and context of their acknowledgement but I find that people do want their baby to be acknowledged. If the baby was named, use that name wherever possible. If you are uncomfortable speaking to someone in person, sending a card may be your best approach.
4. Remember that for many people, grief is forever. Never assume someone has “moved on” or that there isn’t still a place in that person’s thoughts for that baby. If you are close with the bereaved couple, consider checking-in months or years down the line, perhaps on an important holiday like the child’s date of birth or Mother’s Day to express to them that their loss, and theirbaby, is still in your thoughts.

What is the significance of a butterfly?

The butterfly is a long-standing symbol for perinatal grief. There are various reasons for this. Some note it is because butterflies are feminine and gentle. Others indicate that a baby may only be a part of one’s life a short while but has a great impact; like a beautiful butterfly we see in nature. Alternatively, the butterfly is considered a beautiful thing seen in nature that visits them and reminds them of baby’s life – like a ‘sign’ that baby is still present in our lives even after death. Finally, the butterfly is also a symbol of transformation much like families affected by perinatal loss are forever transformed.

The Butterfly Garden Remembrance Ceremony is held each September at Sunnybrook.
Details for the 2017 event can be found here.

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“We’ve all come to know the stages of grief — denial, anger, bargaining, depression and acceptance,” says Dr. Elie Isenberg-Grzeda, a psycho-oncologist at the Odette Cancer Centre. “There’s a tendency to think these stages go in order and are time-based. But the stages can happen in any order and at any time.”

So, even when you think you’ve accepted a loved one’s death and are done grieving, you might walk by your Dad’s dry cleaner and the sadness could come flooding back.

What can you do when you find yourself having a grief-filled day long after the immediate grieving of a loved one’s death? That really depends on you, Dr. Isenberg-Grzeda says.

Step one, though, is let yourself off the hook a bit.

“There is nothing abnormal about having a sad day after the death of a loved one – even months and years later,” he says. “But one thing that will definitely make you feel even worse is thinking something is wrong with you because you feel sad. Remember, sadness is part of the process. It’s ok to cry.”

If you find yourself flooded with grief, turn to the coping skills you have learned to help you through any time of stress or sadness.

“Distraction techniques can help,” he says. “Things like, putting on your favourite music playlist, or watching a TV show that can’t help but make you laugh or smile. You could take a walk, go for a run, ride your bike. Physical activity works as a distraction and also releases endorphins.”

These distraction techniques tell your brain, “We can keep going. We can do this,” Dr. Isenberg-Grzeda says.

“The process of saying to yourself, ‘I feel sad’ and then doing something that makes you feel a little better is how we can live in this world of stress and sadness.”

Using distraction doesn’t simply mean “fake it til you make it”, Dr. Isenberg-Grzeda says.

“That’s a phrase that’s often used in the grief world, and really, in our lives in general,” he said. “When we experience intense emotions, there’s a common phenomenon of stoicism or the idea of keeping a stiff upper lip. I want to educate people: feeling sad, particularly when someone you love has been lost, is part of the wide range of human emotions.”

If you are feeling sad, it may help to say so.

“I often hear in my office, ‘I’m sure people are sick of me being sad and talking about my sister who died last year so I hold it in’,” Dr. Isenberg-Grzeda says. “That’s just not usually true. A good, kind, well-meaning person wants to help. They may not know how, so try to tell them what you need. Most people, when they know what you need, prove to be quite helpful.”

So if you need to talk about your sister, or to cry because you are having a bad sad day, you could say to a friend or to your spouse, “I need to have a moment. Can you please just listen? I just need to know you are here.”

Also try to remember: Everyone is allowed to have a bad day. Actually, even two. So don’t be too hard on yourself if you are in pieces sometimes.

“There’s not a threshold of bad days to say, ‘This is now a problem and you aren’t coping as you should’,” Dr. Isenberg-Grzeda says. “We all experience emotions. When those emotions are so intense that it is stopping you from functioning, that’s when we need to explore things further.”

If you aren’t able to go to work, or you have quit all your hobbies, or you are arguing more than ever with your spouse and snapping at your kids, it could be time to get some help.

“Reach out to your family doctor or a grief counsellor,” Dr. Isenberg-Grzeda says.

If you are acutely upset and having thoughts of harming yourself, call 911.

If you’ve had a history of a psychiatric diagnosis, reach out to your care provider.

“For example, if you were diagnosed with depression a few years ago and are now experiencing sadness due to the death of a loved one, you may start to wonder if it is actually depression returning. Call your doctor.”

Resources:

Patient and Family Support at Odette Cancer Centre
Coping with Grief by Cancer.Net
Grief and Bereavement by Canadian Cancer Society
MyGrief.ca
Virtual Hospice
Grief is a process that can’t be rushed by Your Health Matters

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“When a loved one dies, grieving is unavoidable,” says Dr. Dori Seccareccia, psychosocial therapist and physician in the Odette Cancer Centre’s Patient and Family Support Program. “Grief is a normal part of life.”

But everyone experiences grief differently. There is no “right way” to grieve. And talking about it can be challenging, she says.

Grief isn’t something that can be “fixed”.

“There’s no one perfect thing to say or do that will make the grief go away,” Dr. Seccareccia says. “Grief is a process that can’t be rushed and takes a different amount of time for different people.”

After someone close to you dies, you may have good days and difficult days. And, they can be impossible to predict.

“As your deceased mother’s birthday approaches, you might think it’ll be a terrible day and the day turns out better than you expected,” Dr. Seccareccia says.

Then a few weeks later, you might smell her perfume in an elevator and be brought to pieces.

“That’s normal. Grief takes time. Our memories for our loved ones are powerful and can trigger emotions for a long time after a person dies.”

Take care of yourself.

As you grieve, it’s important that you are kind to yourself and take care of yourself.

“Different factors such as guilt, fatigue or feeling numb, can make this challenging at times,” Dr. Seccareccia says. “Try to eat regular meals, exercise and get enough sleep. Try to continue or reestablish some of your routines.”

Other suggestions include trying something new that you are interested in, like a dance class, or seeing a movie with a friend.

“This all may seem very hard at first, but with time, the intensity of grief decreases and life seem to settle,” she adds.

Get help.

The symptoms of grief and depression can look the same. Being sad or “feeling depressed” is common to both. Turn to an expert for help in differentiating the two and getting the best support (if you or your loved one has clinical depression it’s important to see a professional and for some, medications may be helpful).

You may want to talk to a professional grief counsellor, psychologist or psychotherapist.

There are also lots of good online resources. Check out MyGrief.ca, which is run by the Canadian Virtual Hospice and has online courses, resources and a community.

For friends: Listen. And just be there.

Listen to your friend and try to be supportive. Say less, listen more. And speak in a non-judgmental way.

You can ask: How are you doing? How can I help you? Is there anything I can do? Respect that your friend might also need time and have days they do not want to talk.

There are some things that are not helpful to say. Things like “Everything happens for a reason” or “It’ll be OK” or “At least your Dad isn’t suffering anymore” have been found to be unhelpful to people who are grieving.

It’s not unusual for people to think “I don’t know what to say”, and so they may even pull away and avoid their friend who is grieving.

“But it’s OK to just spend time together,” Dr. Seccareccia says. “You don’t need to come up with the perfect thing to say or feel that you have to make things better.”

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We are so thankful that so many family members came; it takes courage to step into the circle and grieve together, and we hope that it brings some peace and healing. We also send thanks to Rebecca Collett who shared her glorious voice with us, to the parents who so beautifully shared their stories and read poems, to Kelly for organizing everything so perfectly, and to Brenda our chaplain and Helen our wonderful music therapist who led such a meaningful and lovely program.

Brenda introduced a new and wonderful element to our event this year; she asked everyone to take a small painted stone, and then shared these instructions:

Keep me as your remembrance stone, to hold as a small comfort. When you’re ready to let me go, give me back to nature.

We then concluded with our butterfly ritual, in which every parent wrote a message on a butterfly and hung it on our tree. The wind tried to shake our butterflies loose but Meghan wasn’t letting any of them go! (And thank you Meghan for taking on butterfly duty!)

This next poem wasn’t included in today’s ceremony, and Stephen Spender was not writing about babies, but it does come to mind when thinking of these children and their wonderful families. The entire poem can be found here, but please read this small excerpt.

From I Think Continually of Those Who Were Truly Great …

The post The truly great appeared first on Your Health Matters.

Our Butterfly Tree. Each butterfly was placed by a family or
staff member to honour a baby

We are so grateful to everyone who made today’s ceremony so special.

To Wendy, Maureen and Sonia, our lovely readers … thank you!

To Rebecca who shared her glorious voice with us …  we feel so fortunate that you were able to join us today. Your gift was greatly appreciated.

To Helen who cobbled together the most elaborate extension cord arrangement ever, and so as a result was able to offer us beautiful, healing music … thank you! You are a MacGyver and a musician.

To Kasia who pulled so many pieces together … your dedication and your hard work is wonderful.

To Rohan and his gardeners … your love for your work and your kindness gave us a beautiful place to hold our ceremony. Thank you!

To Anke, who with her kind serenity presides over everything and makes it all feel so healing and beautiful, we are so grateful to you for all that you do for us and for our families.

And to all the families and staff members who came … thank you so much! We hope that you found it a healing and helpful experience, and we welcome you back any time.

Many of you mentioned how much you loved the poem Sonia read. Here it is. If anyone knows the author please let us know!

These are my footprints

So perfect and so small

These tiny footprints

Never touched the ground at all.

Not one tiny footprint,

For now I have wings.

These tiny footprints were meant for other things.

You will hear my tiny footprints,

In the pattern of the rain.

Gentle drops like angel’s tears,

Of joy and not from pain.

You will see my tiny footprints,

In each butterfly’s lazy dance.

I’ll let you know I’m with you,

If you give me the chance.

You will see my tiny footprints,

In the rustle of the leaves.

I will whisper names into the wind,

And call each one that grieves.

Most of all, these tiny footprints,

Are found on Mommy and Daddy’s hearts.

‘Cause even though I’m gone now,

We’ll never truly part.

-author unknown.

The post Love, grief and beauty in our Butterfly Garden appeared first on Your Health Matters.

Preface:

I have been writing letters to my son Charlie for the past four years, since he passed away in the NICU at 24 days old. I let out my feelings, chronicle the days in the life of his surviving twin, Austin, and generally process the reality of living without him.

I have been to therapy, used antidepressants, volunteered, fallen apart completely, rebuilt my life, persevered, and carried on. Throughout all of this, the contacts I made at Sunnybrook have kept both me and my now 4 year old Aussie strong.

Carly with one of the beautiful angel gowns

When the opportunity came to donate my wedding gown to Forever Loved Angel Gowns, it was easy. The chance to give back to the NICU that gave my boys every possible advantage overwhelmed me. It’s a small gesture, giving something beautiful to be recreated into many more beautiful things, but it’s all that
I can offer at this point. Life blindsides you sometimes – it’s what you do the day after that really counts.

– – – – – – – – – – – – – – – – – – – – – – –

Dear Charlie,

Today is the day your twin brother went to kindergarten. He got bigger and smaller, all at once. I watched him walk in line, with his too big hoody and his huge, heavy backpack (feet barely showing beneath), into his new classroom when the bell rang. Today he left me behind without even a glance back. Today he
grew up and so did I. Today Austin went forward, yet I go back.

I went back directly to the place where it all started – and ended – four years ago almost to the day.  I delivered burial gowns for babies gone too soon, created from my wedding dress, to Sunnybrook’s NICU – the place where you and your brother Austin were born. One gown, so full of promise and hope and happiness, became 13 tiny gowns, full of sadness and confusion and death. The emblem of a beginning, recreated into the symbol of an ending.

An angel gown created from a wedding dress

And yet, there is a sense of comfort. There is the knowledge that something beautiful might be passed on. Though my wedding dress no longer represents a beginning, it can still bring peace. Love isn’t recycled but purposes can be. Closure comes in many forms; for me, it begins to come from the knowledge that although I didn’t have anything to hold you in during your last moments, there is another option for others facing their darkest hour. When the tubes and wires fall away, and the silence takes over, beauty creeps in. You were beautiful enough, Charlie. But in the days after, keepsakes become important.

So, today I let go. And in letting go of one symbol and one part of Austin’s life, I hope that it can bring comfort back to where it all began for us.
Today I come full circle.

My personal thanks to Sheila Babineau, one of the Angel Gown seamstresses, and to Wendy Moulsdale, NP- Pediatrics at Sunnybrook NICU who first introduced me to this worthwhile cause.

Wendy and Carly at the entrance to our NICU

– – – – – – – – – – – – – – – – – – – – – – –

Thank you so much, Carly, for writing this beautiful post for us. We thank you for sharing your wonderful words and your wedding gown. We would also like to let all families from our Women and Babies program know that this Sunday (September 14 at 1pm) we are holding a memorial event in our Butterfly Garden. We will be honouring all the babies gone too soon and their families. If you would like to join us, to grieve and to celebrate, you are most welcome.  Please email kate.robson(at)sunnybrook.ca for more information.

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