A lifeboat for parents drowning in pain

by Andrea Powell, Marketing & Community Awareness Specialist

July is Bereaved Parents Awareness month.  I’ll admit that, under normal circumstances, I would try not to think too much about that fact.  Dying children?  How can you think about something so sad?  But a couple of weeks ago I attended my first Kids Path® interdisciplinary team meeting.  And now I find myself unable to tear my thoughts away from grieving parents.

Kids Path is a licensed program that was founded in Greensboro, NC to address the unique needs of seriously ill children.  HPCCR is proud to be one of the few hospices in the country that offers palliative and hospice services to children.  And after attending that meeting on July 1, I have a newfound respect for how we do it.

First let me say that I truly believe our practitioners who work in hospice care have responded to a calling.  It takes a special person to work in a health care field where patients are not going to get better.  It takes strength of character and enormous courage to invest care and sincere affection in ailing patients, knowing that your time with them will be limited. 

But our staff who work with the children are on an entirely different level alltogether.

I’ll be honest–I had a very hard time making it through that meeting.  As a mother of two myself, I fought tears as I heard about the children who had passed away, and listened to the updates about children suffering from diseases I’ve never heard of, much less can pronounce.  But these nurses, NAs, in-home aides, social workers, and chaplain– the amazing human beings who make up the Kids Path team–visit these children every day and they do so with smiles on their faces and cheer in their voices.  They intentionally try to get closer to the kids, to build an even higher level of trust and affection, all the while knowing that it will be that much harder to say goodbye at the end.  They invest their emotions willingly, give of themselves unselfishly, and they bring joy to these fragile children who have the odds completely stacked against them.

The Kids Path team members have travelled these unfortunate one-way streets many times, and I have to think that a big motivation for coming to work day every day is the remarkable help they provide to the parents and other caregivers.  A child with a serious illness is uncharted territory for most mothers and fathers.  They are terrified, in denial, and desperate.  They look to their nurse, NA, or social worker for clinical expertise.  They need the in-home aide to teach them basic caregiving skills.  The chaplain helps them learn how to answer the difficult questions that children often pose.  This team is literally a lifeboat for parents drowning in pain.

So this month, I’m thinking about the bereaved parents who did not choose to become members of a group that has a month of awareness devoted to them and their grief.  And I’m thinking about the members of the Kids Path team because they grieve every time a child dies too.  But most of all, I am thankful for these individuals who have chosen to devote their life’s work to helping sick children.  The comfort that the Kids Path team offers to frightened parents is immeasurable.  But the love they show to their children is what the parents will remember forever.  When you think about it, it’s a completely different definition of “bereaved parents awareness”, isn’t it?

Explore posts in the same categories: hospice, palliative

6 Comments on “A lifeboat for parents drowning in pain”

  1. Thanks Andrea for the heartfelt account of what the Kid’s Path Team does, to provide care to these families and patients who are in crisis situations. As a mother myself who now has grown children, I too have a difficult time imagining what these parents go through who greive the loss of their precious children. The Kids Path Team could never be paid enough for all the love and great care they give. I see in them how they all feel called to provide this care and the rewards are worth much more than any amount of “Silver or Gold”!

  2. Jim Young Says:

    Andrea, all I can say is that is one of the most moving stories I have ever read. I cannot even fathom as a parent the emotional rollorcoaster they are on, but I am inspired by the focus and affection the response team gives to all involved. This courage to look beyond the inevitable in bringing smiles to a very unhappy situation is overwhelming compassion that touches all involved. I am so proud to be a part of the world of hospice, and this story just strenghtens my devotion. Thank you Andrea, you touched my heart.

  3. Pam Mange Says:

    Andrea, thank you for capturing the essence of the Kids Path team. Your reflections on the work our team provides were moving; I
    know it took some time to absorb the information you heard, as well as put your feelings into words and as a parent of small children, I imagine it was very difficult to put youself in “their shoes”. All the more reason for our team to follow our calling. Thank you for taking the time to highlight our work.

  4. Nicole Wolfe Says:

    What a moving blog! You captured the spirit and compassion that is Kids Path, and the amazing staff who do such meaning work each day! To have the privilege to sit in on a Kids Path IDT, one must truly be prepared to absorb overwhelming grief and loss. To counter that however, is laughter, happiness and the glorious intimacy that goes along with parents who are able to “be” with their children and have the opportunity to say good-bye. For me, I grieve harder for those children and parents who never are given the opportunity to slow down, reflect, talk and love deeper than ever—before the end. Thank you!

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