Monthly Archives: August 2016

A bereaved father’s reflection this Father’s Day

Written by Scott McClenaghan

The night before my son Caspar was born I wrote him a letter.

I wrote of all that I wished for him. That he would experience all the things that life promises, love, laughter, happiness, the attainment of his dreams and the strength to live through setbacks, disappointments and sadness, for no life unfolds without them.

I wished him a set of solid values, a decency, humanity, such that he might bring a sense of integrity to all his choices. And forgiveness, for we all make mistakes. Above all I told him that he would grow up knowing that he was incredibly loved.

I promised Caspar that no matter who he was and no matter where his life’s journey took him that I would always be there for him. Life required me to live up to these promises.

Caspar was born with an extremely rare condition that meant the length of his life would be limited.

It was on the 21st day of his life that we were first able to venture out of hospital. We walked a short distance from the hospital to the surrounding parklands.

All I wanted to do was to sit under a tree with Caspar.

Only if I share you with you the receding hope of the previous 21 days, the powerlessness of watching my son overwhelmed by medical intervention while I hoped that love alone might heal him; only in the context of this grief might I begin to illuminate the exquisite beauty of sitting with my son under a tree.

I suspect few other joys will ever approach it.

The intervening time following his birth had changed our expectations so much, that I had not believed we would ever do this together. And here we were, dappled in sunlight, the smell of leaves and grass and moist earth.

It was under this tree that I was reminded of the miracle of Caspar. It was a miracle that he had found his way into this world and it was a miracle that I was sitting under a tree with my son.

I recommitted myself then to treating each day that still lay before us as a day to be celebrated with my little boy just as I had promised him in the letter on the eve of his birth.

I’d promised my son adventures and each day became one for as long as he lived.

Every Father’s Day since Caspar passed away I sit under a tree. I reflect on the moment that I decided that although the dreams I had of his future were drastically altered, I would embrace every day with him.

I have not done anything extraordinary, except to be to Caspar the best possible Dad that I could.

Whatever strength I found, whatever inspiration I drew upon to carry him through his short life and celebrate each successive moment together with him, I found because of Caspar.

And every Father’s Day I sit under a tree and celebrate the father that he made me.

Very Special Kids supports the McClenaghan family through our Bereavement Support Program. To find out more information about the bereavement services we offer to families, click here.

A volunteer’s reflection on Sibling Day

Family Services Volunteer Maddie Gardam reflects on the rewarding experience of being involved in her first Sibling Day at Very Special Kids.

As I approached the big, white building at Very Special Kids, I felt both nervous and excited about the day ahead. I hoped that I wasn’t so early that I would be the first one to arrive, but then I reminded myself that this is what many of the children attending today’s Sibling Day might be feeling. It was my job as an adult, and a Family Services Volunteer, to take the lead and show them how fun was done.

I’ve been volunteering with Very Special Kids for about six months. After completing my training, I was partnered with a family who wanted a volunteer to spend time with their two boys, aged eleven and nine years old. One is a very special child and the other is his very special sibling.

Today I was here for the young sibling. His mother and I had been discussing getting him involved in the sibling programs because, like many parents, she wanted something special just for him, given the amazing way he adapts to his brother’s needs, offers care and support, and often puts his needs second.

Until now, he had been a bit nervous about attending a Sibling Day, so I was going to be a familiar face for the day, a safety net to make him feel more confident. Sibling Day allowed him to just be a kid for a day, alongside others who share his experience of being a young carer.

Through the theme of Once Upon a Time, the siblings embraced the role of being storytellers for the day. I was delighted watching him run laps of Very Special Kids Hospice with his teammates and instantly make new friends as they searched together for clues in each challenge of the day. Beyond the initial appearance of kids having a fantastic time, you see there is also that extra something special about these young carers.

They have the ability to listen so carefully to each other’s experiences and demonstrate care, compassion, and kindness throughout the day.

As these little kids immersed themselves in each activity, there was lots of laughter and incredible creativity and imagination shown as we all escaped into the characters and stories.

The day culminated in a special performance of our jointly-created stories and a celebration of our day together with each child being presented with a certificate and memento of the day.

Despite the serious, challenging, and often sad side of what brings us together at Very Special Kids, each time I’ve attended sibling camps and day programs I’ve come away humbled by these kids. Each time I have also been exhausted from having so much fun – my face hurting from smiling so much.

I keep volunteering with Very Special Kids because I feel like these kids show me how to be a better human.

Waiting for a phone call that will change Harry’s life

To be able to wake up in the morning with energy after a proper night’s sleep, to not itch all over and to be able to eat food through your mouth- seems like a fairly reasonable request right? Well for Harry, only 3 years old, none of this is possible.

Harry’s parents, Eileen and Trevor Booth, have had an intense 3 years with their youngest son being so ill, his older brothers, Tom and Jake, have also suffered through this tough time.

A difficult start to life

Not only was Harry born 32 weeks prematurely which caused breathing issues, he also had 9 surgeries within the first 6 months of his life. His bladder flooded when he was in his mother’s womb, and he had to have bladder surgery with several tubes being inserted into his kidneys to drain them.

Because of the immense amount of surgeries he had to be on life support to allow his body to rest during this period. Harry is now on the wait list for a new kidney.

Although he has endured some physical development issues, mentally his mother says he is “very switched on, with a wicked sense of humour”.

For someone who doesn’t get to eat properly, he now has a peg and knows everything there is to know about food, with a particular fondness of chicken nuggets!

A special brotherly bond

Harry’s oldest brother Tom is very aware of his condition, and shows an unprecedented amount of support for a 9 year old. He came home to Eileen one day begging to take Harry in for show and tell, which of course they did.

“You could tell Tom was very proud of Harry and loved letting the other kids know about his condition. Tom doesn’t usually say much but I could tell he was proud and enjoyed the show and tell” says Eileen.

Finding Harry a kidney

The happiness that the family has in their life together definitely remains strong, but it is undoubtedly hard, especially waiting for the call assuring them that Harry will receive a kidney and get better.

“We’ve been on the transplant list for two years, two years waiting for a kidney and it’s restrictive, it feels like we’re constantly waiting for that call” says Eileen.

The family are now at the point where they will try anything to help their little boy get better. Harry’s father, Trevor, is waiting to receive test results to see if he would be an eligible donor to give his son one of his much needed kidneys. Although it would change Trevor’s life drastically, the parents will do anything to ensure Harry’s future health.

“If we can get a kidney, Harry’s life will change. For him to wake up in the morning and feel energised, to not be connected to a machine, to not have to eat out of tube, to not be itchy or scratchy, it would be amazing. It will honestly change and save his life.”

When we asked Eileen what it’s like for Harry, she said it was difficult to explain, but almost like having the flu every single day of his life, only worse. She has spoken to other mums whom children have received a kidney, and they have all said they see a dramatic change, especially in their child’s energy levels. “It’d be a new lease on life, Trevor and I want that for Harry more than anything”.

Much needed support

Supported by Very Special Kids, Eileen says she is particularly grateful for their Family Support Worker, Peggy. “Initially it was really hard for me as I find it hard accepting help but Peggy helped me break down these barriers and know that it’s ok to ask for help. She’s been amazing.”

Eileen also attends Very Special Kids coffee mornings and says “it’s important to debrief with other families in a similar situation. I can’t speak highly enough of this support.”

Despite Harry’s uncomfortable condition, his family says he is always smiling, and always laughing. We believe this is because his family loves him so unconditionally, and have promised him the best life they can possibly give him, the Booth family are a true inspiration to all families alike.