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Voices of Sibs

Voices of Sibs

Melissa Borth, RN, MSN
melissa.borth@thedacare.org                                         

We know that the life limiting illness or condition of a child impacts a wide community. Siblings find their world shaken and broken.   How do we help these children through the time of their sibling%27s illness and after the death? Children%27s concepts of life/death and dying are impacted by developmental levels which are also impacted by cultural background. 

Cultural factors influence communication styles and parental expectations for children. Cultural background and family experience influence the amount of information considered appropriate to share with children and perception of “appropriate” responses to difficult situations.   Each child and family is unique, and the children themselves can guide us. 

Thanks to Kate Eastman who shared some questions and responses from Remington, 8 years old and Riley, 6 years old, whose older sister died.  

“What do you think is important for people who work with ill children to know or do for brothers and sisters of children with life threatening illness?”  Remington%27s response: “In general?  They need to be patient, and understand and learn a lot from the kids.”  Riley: “They should know that it%27s really hard for a brother or sister to have a sick brother or sister in their life.”

“What was it like for your when your sibling was ill?”   Remington: “I was worried about her, she might die soon.”  Riley: It was really hard because she really couldn%27t get up and play and I only had a stinky brother to play with.”

“Who was most helpful for you?”   Remington: “At school I also went to the guidance counselor to talk about my sister.”  Riley: “My friends.  Since we%27ve been talking about my sister, they%27ve been really worried about me.”

“What has been helpful for you during this hard time?”  Remington: “My mom has a job because we need more money.  The Center for Grieving Children has helped me.  Talking with other people who have lost a sibling.”  Riley: “I%27ve been really getting used to it, and I know she%27s in a better place.”

“What would have been more helpful for you?”  Riley: “It would have been more helpful if Michaela wasn%27t sick, and she could play with me.”

Alan Johnson shares a poem by a 4th grader as her 4 week sister was in the hospital from birth, and then was taken off life support.  The sister drew a picture of a sun setting over the water and then wrote this poem to go with it:

"Faith, you%27re like a sunset...
From the time we first met.
I never want to leave you,
You%27re like a dove and a friendly coo.
You are so beautiful,
I can tell you have a pretty soul.
Love you, Sidney"

The Hospice of the Florida Suncoast%27s pediatric hospice and palliative care program shares two reflections from bereaved siblings.  The first is a poem written by twelve year old Julia after the death of her older sister from cancer.

-Us-

we read the same books
ate the same foods
played the same sports
heard the same news
we played the same instrument
were in the same band
we liked Harry Potter
liked putting our feet
in the sand
we have the same parents
our blood was the same
we watched the same movies
and played the same games
we both liked writing poetry
and were perfectionists
sometimes
we fought over the switcher
we fought over our time!
she used to tickle me silly
until I%27d pee in my pants
we used to have serious talks
in which
I was put in a trance
by her magic words
of wisdom
and grace
she put out her own thoughts
so
I was given a taste
of her view of the world...
this was my sister
whom I tribute these times
whose mind was much smarter
and wiser than mine...
she died
because of cancer
and it made me mad
but it made me see
that just %27cause you%27re sad
doesn%27t mean
that your spirit has to leave you....

Olivia is 14 years old. Her family is German and their belief system is Presbyterian.  Olivia%27s brother died when he was 15. 

Here are some of her thoughts…

When my brother was 8 months old he was diagnosed with CP and failure to thrive.  When I was 18 months old he had his 1st surgery for a g-tube placement.  Before he died he had a total of 12 surgeries.  Some of the doctors understood the relationship we had so they would let me in to see him.  Helping to take care of my brother has inspired me to become interested in the medical field to help other handicapped children. 

It was a scary and stressful time for me when my brother was admitted into the hospital.  I had limited time with him and it was unknown how long he would be admitted.  During the time that he was home my parents involved me in his care and it decreased some of my anxiety when I was old enough to understand his condition. 

I didn%27t rely on my faith system and I sometimes think because of our cultural background it made things challenging, like, I felt I couldn%27t talk to my dad.  I didn%27t know what to say to help him.

My friends have really been helpful to me since my brother died.  I learned how to journal and it%27s really been helpful to write out feelings and memories.  The most helpful people have been my parents, two best friends and Miss. Dee my hospice counselor.

It%27s important that healthcare professionals remember to pay attention to siblings, recognize the bond we have and value our opinion.

Some final words from a young man named Paul from California...

Hello, my Name is Paul and I am 13 years old. A year ago, I lost my sister to Neuroblastoma. My sister, Katie, had battled Neuroblastoma for nearly 4 ½ years. I remember not seeing both my parents or my sister for weeks at a time when Katie was in the hospital.

I also remember being often overlooked. People would send things to my parents and sister wishing them well - but never anything to me. People would ask me how my parents and sister were feeling - but never how I was feeling. The only reason I didn%27t feel completely forgotten was because my parents and sister had not forgotten me. I knew this because they told me they loved me. This was all that mattered. Because during a situation like this, family is all that matters. Your parents and siblings need you as much as you need them. By allowing your parents to focus on the sick child, you were a very big help to them, even if they did not tell you at the time. Your parents, I am sure, are aware of this and that is why they never forgot you.

I am a "chosen sibling”. I made up this term - chosen sibling - to show to other people how I felt about living with sister with a life threatening disease. I chose -  chosen sibling -  as a way of saying we were chosen to do something we did not want to do. We were forced to watch our brothers and sisters go through treatment after treatment. They are amazing - aren%27t they? To go through all of that…. But, we chosen siblings are amazing also. To WATCH our brothers and sisters go through so much – and to worry and be afraid with and for them….. We should feel proud that we were able to BE THERE for our parents and siblings.

We should also be happy that our brothers and sisters are now in a better place.  It is better for them to be free from treatment and pain than to continue the way they were.  You should not feel guilty or blame yourself. We had no way to control events. We should keep our memories and keep going.

The best thing to do is to help others in your situation. Talk to other “chosen siblings” and open up about your experiences. It is not good to clam up. Try talking to an adult in your life whom you trust – parents, a relative, a family friend, a spiritual leader, a teacher, a coach, a counselor. Talking is healing. I learned this by talking to my psychologist, Dr. Sourkes, who understood how I was feeling and has allowed me to voice my experience to other chosen siblings like me.

Many thanks to those siblings who have shared their thoughts and feelings.   Let us listen to the voices of the siblings.  Expressing their thoughts and feelings through words, drawings, and other creative means can be healing.  These expressions touch and teach our hearts and minds to better assist the children on their bereavement  journey.