Pediatric Brain Tumor Foundation
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An Open Letter to Bereaved Parents

07/02/21

July 3rd marks National Bereaved Parents Day, with Bereaved Parents Awareness Month recognized throughout the month of July. It is a time when the Pediatric Brain Tumor Foundation community comes together to raise awareness for and honor our Eternal Star parents, those parents and caregivers who have lost a child to a brain tumor. 
 
You have told us this journey is unimaginable and we are committed to walking alongside you and providing you and your family comfort and support, not just today but in the weeks, months and years ahead.  
 
In honor of this month, Eternal Star mom Kelli joins us in recognizing your pain and unique experience with the following letter she wrote for you. As mom to Matthew, Kelli shares this pain, having said goodbye to her son 12 years ago, and acknowledging that sometimes it still feels like yesterday.
 
An open letter to Eternal Star Parents:

Dear friend,  

I’d like to say I know how you feel . . . but I can’t truly know exactly how you feel.  Grief is a journey that is as individual as the children who are no longer with us.  As their parents and caregivers, we all travel that road at different speeds with unexpected detours, roadblocks, potholes and curves.  So, while I know I can’t completely understand your particular journey, I believe there are some common truths we all experience at some point, and it is there that our paths will gently intersect and we learn we aren’t alone.

We are members of a “club” we never wanted to join.  We’ve had to say goodbye to our child.  I said goodbye to my son Matthew in May 2009.  It has been 12 years now – and at times still feels like yesterday. So, here are my thoughts and what I see.

I see you . . .

I see your pain.  The pain that so many people try to understand and relieve for you.  But no one can understand that pain because your loss is yours.  My own husband – who knows me better than anyone – can’t understand my pain, just like I can’t truly understand his pain, because even though we both lost our son, we travel our own grief journey and it is strangely unique to each of us.

I see you . . .

I see you railing at the unfairness of it all.  We aren’t supposed to outlive our children.  It’s not natural, or fair, or right.  How are we supposed to carry on without them?  

I see you . . .

I see you struggling to get out of bed . . . go to work . . . cook meals . . . get dressed.  Some days we just don’t want to do any of the things we “should” be doing.  Give yourself grace.  Seriously.  You are allowed to have those days.  Really.  And if anyone tells you differently, remind them that no one is allowed to tell you how to grieve.

I see you . . .

I see you as you go about your day.  Doing the usual things.  And I see how a wave of grief can come over you silently, and with no warning.  It’s not a “special” day . . . it’s not an anniversary . . . but something triggers that profound sense of loss and you had no time to prepare for it.  These moments will happen.  Do what feels right for you in that moment.

I see you . . .

I see you bite your tongue when someone tries to be helpful, but the words they speak hurt you.  Or maybe I see you as you snap and rail at them for being insensitive.  Hold close what is helpful and let go of what is not.

I see you . . .

I see you as you survive what seems to be impossible, even incomprehensible.  Every breath, every step, every single, simple thing you accomplish shows your strength and your will.  You are a survivor in every sense of the word.  You are not weak.  You are a human who is living through one of the most horrible things any person can experience.

I see you . . .

I see you as you become stronger than you ever knew you could be.  I see you get up, pick yourself up, move forward. I see you bear the weight of your loss with dignity and love. I’m not sure we can ever “move on” and I know we can’t “get over it.” But we can move “forward”.  One day, as hard as it is to believe, memories will make you smile.  One day, the days you celebrate your child’s life will outnumber the days you grieve their loss.  

I see you . . .

I see you smile.  I see you laugh.  I see you experiencing joy.  And you know what?  It is ok to feel joy.  It is ok to do something that brings you pleasure.  It is ok to have fun and enjoy the beautiful things in the world.  There will always be that empty space within you. Nothing and no one can replace the child that filled that space. You will figure out how to continue living life after loss.  I promise.  The love you feel for your child and that your child had for you lives on in you.

I see you . . .


Mom to Eternal Star Matthew

We are here for you. If you have any questions, need support, or know a family in need of support, please reach out to PBTF’s national family support team at 800-253-6530, x306 or familysupport@curethekids.org.


About the Pediatric Brain Tumor Foundation
Every day, 13 children and teens are diagnosed with a brain tumor, the deadliest and most common form of cancer in kids under 15. Every day after, they are in a fight for their life. It's a fight the Pediatric Brain Tumor Foundation is here to help families win. A leader in the brain tumor and childhood cancer communities, PBTF's mission of Care. Cure. Thrive. reflects its commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the patient family education, financial relief, and emotional support they need to navigate their child's journey. A world without childhood brain tumors is possible when we stand together to effect real, meaningful change. Learn more at www.curethekids.org.