Video Library
Your Child
Why did I get sick? Conversations about illness
Talking about Esteban's illness
Teaching Foster to communicate
Gia can't tell us how she feels
Foster is the light of my life
Esteban's support dog
Preparing for seizures helps
We live with uncertainty every day
Living with anxiety
I needed to slow down and learn from my kids
Jaxon lived his life very well
Yes, I was a helicopter parent but I still let Jaxon make some choices
Supporting teens
Finding new ways for siblings to connect
Kids deal with hard things differently than adults
It's important to show emotion and to pair it with explanation
The importance of rituals
Talking about the really hard questions
How we helped Tait with his worries about dying
Follow the child's lead in tough conversations
How can we include and support kids when hard things are happening?
Talking with a child about their illness
Staying strong and breaking down
Getting a diagnosis and meeting other children with Cockayne’s Syndrome made J’s prognosis real
It was hard to admit there was nothing left to do to treat Jay’s disease
Let her live until she dies
What makes your child happy?
The five C’s
Opening up the conversation when kids want to talk
Opening the door for questions that kids might have
Asking kids: “What are you wondering about?”
Using art to get those big feelings out
Let some “air out of the balloon” of big feelings
Talking about how we can help with a child who is going to die
Explaining what's happening makes things less scary for children
Share information: Lead the way and then, take your child’s lead
Answering both big and small questions about dying
How kids and teens react to sad news
Talking about how care needs change as a child gets older
Difficult decisions are made with love and compassion
The three W's: what are you wondering, worried about and wishing for?
Why it helps to tell the truth
Why it helps to tell the truth (1)
Taking a deep breath: Processing a diagnosis and new information (1)
Being open with the kids about Xavier’s diagnosis
Talking to Xavier about his brain tumour and about dying
Getting through the shock of Xavier’s diagnosis
Grieving the childhood that Xavier would never have
Xavier’s grief
Your Family
Family, friends and normal activities help
To be strong, take care of yourself
My advice to other families
When strangers approach you
How we've coped
Coping with grief
New priorities guide decisions
Dealing with anger and frustration
Coping with trauma
Managing stress
Making changes at work and home
Grief: I recognized that I needed help
I know how much my son loved me
Finding rainbows
Grief: Learning to celebrate
My son Tait taught me so much in his short life
We celebrate good days
Respite care helps the whole family (1)
Living with dying (1)
The impact of illness on siblings
Talking to our other boys about Foster's illness
Foster's illness is "normal" for his brothers
Reactions and support received can be surprising
Support and friendships
Our daughter has amazing resilience
The myth of marital breakup
When friends let you down
I had support but had to be strong on my own
Respite workers helped me manage as a single, working parent
I didn't want to always talk about sickness
We lived a pretty regular life for five years
Protecting people around me
Living with constant worry was hard
My daughter's childhood was very affected by having a sick brother
I was anxious about something happening to Jaxon
Being a parent and not just a caregiver for a sick child
Trying to make space for the emotions of everyone in the family
How Jaxon's illness affected his sister
When siblings of a sick child feel neglected
It really helps to create memories and keepsakes
A hockey experience
Telling stories and creating memories through legacy projects
Journaling and telling stories
Legacy making: hand moulds
Legacy making: Baby hand moulds
Legacy making: Creating fabric hugs
Legacy making doesn’t have to wait until end of life
Creating and recording fun times together
I didn't want people to feel sorry for me
Working out helped my anxiety
I got knocked down again and again, but my happy child kept me going
My support system and my own conviction kept me going
Helping Aislinn grieve her brother's death
Respite care makes a huge difference
Finding resources to help lessen the financial burden
I'm allowed to be sad
I'm not ready for outside support yet
I was blessed with different kinds of support after Jay died
Feeling safe
Pediatric palliative care supported my grief
Concrete suggestions
I feel like I'm living again
Connecting with other families
Checking in with siblings when a child has died
Feeling connected after a sibling has died
Kids can take things very literally
Creating a memory box
Checking in with siblings when a child has died (1)
Feeling connected after a sibling has died (1)
Kids can take things very literally (1)
Caring for Xavier’s twin sister
Sibling moments stung a bit more
Mackenzie wanted to be there when her brother died
Celebrating Mackenzie and Xavier’s birthday
Mackenzie was present when Xavier died
We always spoke openly to Mackenzie
During remission, Xavier and Mackenzie were able to have a childhood together
Kids are resilient
7 years of ups and downs
Reaching out for family counselling
Hope stays with us
Creating a memory box (1)
Memory making
A photograph that I treasure
Memories are what we have now
Being a mom and a caregiver
Your Healthcare Team
Pediatric palliative care helps with big decisions
Keon’s decision to stop cancer treatment
Helping families make difficult decisions
What is pediatric palliative care?
How palliative care helped us
Palliative care provides reassurance
What does Pediatric Palliative Care encompass
Being referred to pediatric palliative care
Palliative care seemed scary at first
Pediatric palliative care takes care of the whole family
Advance care planning - thinking about the future
Advance care planning will not change what we are doing right now
Our wishes for Gia
Time frames are difficult
Making a decision without a clear diagnosis.
Choices don’t have to be made at the expense of other treatment decisions
Choosing between home, hospital, or hospice at end of life
Decisions can be reassessed and revisited
Including children in decision making
It gave Tait great comfort to be involved in his care planning
We were always prepared with a DNR
How we help families set goals and make difficult decisions
Reframing hope, legacy work and capturing experiences
Conversations about advance care planning can give kids a sense of control
How hope changes over time
Collaborating with your child to make decisions
I'm proud that I spoke WELL for my child.
I wanted my son to die peacefully, on his own terms
How we support parents and children to talk about goals of care
How my understanding of pediatric palliative care shifted
Palliative care is about quality of life
Moving from NICU to a children's hospice was very difficult to accept
We bring what we've learned from families to our work
We're a team that focuses on living
The benefit of an early introduction to palliative care
Creating a relationship with a children’s hospice through respite care
We are "hopeful worriers"
Being honest about hard things can help kids focus more on the good things
Pediatric Palliative Care is not just about life and death
Supporting parents through difficult decisions, regrets and guilt
The importance of respite care
Using respite care
Counselling and support can come in many different forms
Find someone to talk to
My kids really thrived in a community of their peers where people understood their differences
It takes a team to care for a sick child
Respite helped me care for myself
Supporting parents to be parents
What pediatric palliative care hospice has done for our family
Preparing for visits
Guidance from the health care team
We learned all we could and asked challenging questions
Respecting my patient's privacy
What matters is what's important to each child and family
Transitioning from pediatric palliative care to adult palliative care
Palliative care is about partnering with families and talking about the whole picture
Taking a deep breath: Processing a diagnosis and new information
Xavier told us when he didn’t want any more treatment
Palliative care was like having a warm blanket wrapped around us
Your School & Community
Starting a new school
Taking Esteban into the community
Connecting with other families
A space for grief
Questions from others
School was Jaxon's happy place
Starting a new school after Xavier died was hard for Mackenzie
Care at the End of Life
Honouring your children
Marking special occasions
Feel what you feel
How many children do you have?
My son Tait taught me so much in his short life
How Tait will live on
Finding happy ways to honour Jay
I'll tell my future child about Jay
What Jaxon taught me and advice I would share with other parents
I think about her every day
Kids sometimes worry that they’ll be forgotten
Tait planned two celebrations of his life--one for before he died and one for after he died
It took us time to bury Kalyana's ashes
Helping families understand funeral and burial options
A more expensive funeral may not be better
Honouring a child’s life in special ways
Plans and preparations before Jay's death
Kalyana died at the children's hospice
A red carpet goodbye to my daughter
"You can let go": Giving permission to die
Kalyana's last days:Learning to care for our daughter at home
Jaxon's last days of life
What if I'm not there when my child dies?
It was hard, but I'm so happy we decided to move Jay to Emily's House children's hospice
Emily's House felt like home and I'm super grateful for the support we got
Covid has impacted patient's decisions around where they want to be cared for
Planning for end-of-life: The involvement of palliative care and desire to be at home
Rural care
Jay was surrounded with love in his last moments
Xavier wanted to die at home
Xavier’s death was peaceful
I was initially afraid of Xavier dying at home
Xavier had a Star Wars procession at his funeral
Celebrations and milestones will always be difficult
Grief & Bereavement
Living with many different griefs
Feeling safe
Pediatric palliative care supported my grief
Concrete suggestions
I feel like I'm living again
Taking time to heal
We remember differently
Learning to release sadness
Moving through grief
What's normal grief?
Family grief
Missing Stella
Continuous grief
My extended family's grief
Grief reactions within a family
Learning to be strong
Grief is a spiral
I was blessed with different kinds of support after Jay died
I'm not ready for outside support yet
I've learned that I don't have any control over grief
I'm allowed to be sad
When you learn to live with grief, love comes flooding back
We show Aislinn that it's okay and important to express feelings
I'm learning how to grieve in the way that I need to grieve
How I feel about being happy and someday being a mom again
I was relieved that she was no longer suffering
Moving through grief one day at a time
Grieving with parents and families
Giving parents a space to talk about anticipatory grief
My grief built up throughout my children's lives
Tears travel
Grief wasn't what I expected
The first celebrations are the hardest
Kids grieve differently. They "jump in puddles" while adults "walk in rivers"
I'm doing this because she lived
It's wonderful when friends share memories and photos
Answering the question "Do you have kids?"
Figuring out who I am after Jaxon's death
Grieving the death of my child
Giving birth to our second daughter
Alera will always know she has a big sister
Grieving other losses
Xavier’s room and belongings
Getting asked “How many children do you have?”
Grief continues
Living with grief
Grieving as a family