Monthly Archives: August 2018

The gift of breath

Written by Sara Crawford, mum supported by Very Special Kids

I recently did something that I had vowed to myself I’d never do.

As a mother of a child with a life-threatening condition, I have told myself time and time again that my daughter needs me, she relies on me and that my presence and watch is pivotal in the fight against her condition.

Her health, her needs, and her happiness come before all else and in a life that has been most unkind I promised myself and I promised her, that I’d always be by her side.

I thought that I knew that nobody could care for her in the same way and on the same level as I do.

Well, guess what? I recently got proved wrong and it coincided with the time that I did what I vowed I would never do, I put my daughter, Piper, 3, in the care of somebody else.

I put my daughter into the care of the Very Special Kids Hospice.

My Family Support Practitioner Angela has encouraged me in doing this from the moment we met and to communicate on a parent to parent level with her. To be honest at the beginning I thought she was crazy.

Piper couldn’t simply be “left”. Parents don’t simply “leave” their children. Just because we had a child with complex medical needs and a disability, that didn’t mean that caring for her was a burden.

But guess what? We got burnt, with all the hospital admissions, the therapy appointments, the constant watch and the constant care, we forgot to breathe.

We forgot that we were human and we forgot that we also had needs.

The time came that I thought that I might very well break, I was weak at the knees from caring for Piper whilst also keeping the rest of my family, including my two other children, going.

I messaged Angela and I said the words I thought I’d never say, I said that I needed help, I needed a break and that I needed a sleep.

Angela immediately spread her angel wings and sprang into action. She not only organised accommodation and support for Piper but also confirmed that my husband and I could stay in the Family Accommodation, close enough to respond to any emergencies but far enough away to reinforce that Piper’s care and required supervision was not our responsibility.

Even so, it felt awkward to us. We were admitted into a facility and the reality of our circumstances hit home.

I wanted to reverse out of there and Angela knew it. Angela remained by my side and gave me a knowing smile. I initially thought it was because she knew that she had tricked me, that the hospice wasn’t as heavenly as she had made out but that it was time for me to surrender but I was wrong.

Angela’s smile was a result of her knowing what was to come.

It was too soon to know what was to come, happiness was to come, support, understanding, and reassurance were all to come and all these qualities were held between the walls of Very Special Kids’ Hospice and in the hearts of the staff.

Complete indulgence and utter spoils were also to come for my little girl. The utmost level of medical care, attention and supervision were strikingly evident and with these observations, I found myself being introduced to a feeling of relief, a feeling that has been yearned for even before I had identified its need.

Perhaps Angela could see this need in me from the moment that we met? Not because I wasn’t necessarily coping or that I was sinking in a deep dark depression but perhaps because she is trained to reinforce to us, that as parents of children with complex needs, it is pivotal that we look after ourselves too.

Our stay at the VSK Hospice reminded me of the numerous times that I have read the safety card on board aircraft were it is simply stipulated that it is necessary to put the oxygen mask on yourself before you place it on your child. Without following these crucial steps neither of you may survive.

From parent to parent, I remind you to allow yourselves to breathe, take the break that both you and your child deserve. I can assure you with a heart full of confidence that the staff at the hospice will envelop you in reassurance.

To all of the people at Very Special Kids, I thank you for the gift of breath that you have provided us.

And to Angela, I thank you for your gentle encouragement, your guidance and committed presence in walking beside us on this journey of caring for our little girl.

 

Returning to work

Written by Kevin Carlin, Family Support Practitioner at Very Special Kids

The challenges
For some parents returning to work after the death of their child can be very challenging. Mustering up the physical and emotional energy to return to the workplace can be extremely daunting.

For the grieving parent whose life has changed forever after the death of their child work can seem not important and no longer have the same meaning it once had.

Having to interact again with work colleagues, sensing their awkwardness and their inability to know “what to say” can be difficult. Some parents have said that they have found themselves actually consoling a work colleague who has been upset on seeing them.

Small talk in the lunchroom or other parents in the workplace talking about their children can be both tedious and confronting. Management not making allowances for the parent returning or expecting them to immediately be working at their optimum level can also be challenging.

Most bereaved parents have financial commitments to meet and do not have the luxury of not working for an extended period of time.

For some parents, work can be a valuable distraction from their grief and provide them with some welcome respite. However, for others, it can become a defining time in their working lives and the impetus to either change jobs or go down a completely new career path. A path that may provide them with greater meaning in their working life.

In the case of some parents, it may be the challenge of returning to the workforce after an extended time away from it caring for their sick child.

What can help?
The following are some suggestions that have been identified from working with some bereaved parents that have helped them return to work.

  1. Initially going into the workplace to just meet management or key work colleagues can just help to “break the ice”.
  2. Endeavouring to negotiate a staged return to work, such as working half days or part-time.
  3. If it is feasible, a parent may be able to work from home rather than having to go to into the workplace.
  4. Transferring to another work site for the same organisation where people don’t know you may help in some situations.
  5. Discussing with management the option of stepping outside the workplace for a short break or leaving early if on a particular day a parent finds themselves really struggling.
  6. Some workplaces fundraise in memory of their colleague’s deceased child and a parent can find this really touching.
  7. In the workplace where other staff does not talk about the deceased child for fear of upsetting the bereaved parent or because of their own awkwardness, some parents have taken it upon themselves to initiate that conversation thereby setting the tone and giving permission.
  8. Sending out an email to colleagues or arranging for management to do it on your behalf, thanking people for their support and letting them know how they could react/respond in a helpful way going forward.
  9. On occasions, a Very Special Kids Practitioner has gone to a parent’s workplace to talk to staff about how they can help support their colleagues return to the work.

Note: Not all these suggestions may not be helpful to other parents, nor relevant to their work situations.

I try to be strong

Written by Daniel Parnell, bereaved father supported by Very Special Kids.

I feel the loss of my son Marcus every day.

This loss is felt more keenly just prior to special days, the sting of it becomes almost too much to bear. Father’s Day is particularly painful for me as every few years it coincides with the anniversary of my son’s death.

The lead up to the day is usually the worst. It is the anticipation of the pain rather than the reality of it.

Around these times the house gets more and more tense and tempers flare more easily than usual. I try to be the strong one, but around Father’s Day I allow myself a little time off from being the one who has to keep it all together. Just a day or so, and then back to it.

Around Father’s Day the reality of what I have lost, not just my son Marcus but all the things he should have done in life, hits me.

What would he be into now? Would he be playing a sport at school? Who would his friends be? What books would he like? But he’s gone and it will never be.

Coping with the loss is all I can do and the only choice I have is how I will go about it.

 

How to get out of bed

Written by, Kevin Carlin Family Support Practitioner at Very Special Kids

Bereaved parents have sometimes said that there were days they would have preferred to stay in bed and not face the day as they were once more confronted with the pain of their child’s death which could be all-consuming.

The world was no longer the place they once knew. They were now seeing it through different lenses.

Parents may have been confronted by the huge vacuum in their life of no longer having to provide for the care needs of their child. However, they were forced against all of their feelings to face their “new norm” or reality; one without their deceased child.

The needs of other children may have to be met and force a parent to get out of bed. However after the children had been gotten off to school, the couch could have become the parent’s sanctuary for a few hours.

Whilst recognising that staying in bed or on the couch, and feeling the devastation can be part of the grieving process, it’s important not to get stuck and be conscious you cannot do that all the time.

As a wounded, bereaved person, caring and nurturing for yourself is important. Remember the little things that used to give you pleasure and perhaps indulge in one or more of them again. Try to establish small achievable routines in your life.

Performing ordinary, everyday home care or self-care tasks can be a welcome distraction. Exercise can be helpful; going for a walk or gardening, noticing the physical world around you, trees, flowers and birds for example. Nature can be healing: setting up a special memory space in your home or garden in honour of your child.

If you feel like talking, share what you are going through with someone you trust. This might be a non-judgemental family member, friend, counselor or perhaps a Very Special Kids Practitioner. Having what you are going through affirmed or acknowledged is important.

If you are able to allow yourself to cry, it can very therapeutic. The outpouring may provide some relief with the pain receding for a time taking you into a calmer, quieter space. Reading, writing, art, music, establishing your own ritual, creative memories, attending a support program such as those facilitated by Very Special Kids can all be helpful.

A combination of feeling and doing can be helpful. Slowly, at your own pace, seek the support you need. Strategies are not prescriptive but rather a set of tools to choose from for each individual.

In the event that you feel so immobilised or stuck that you are struggling to perform any of your “normal tasks,” it is important to speak to a doctor, counselor or Very Special Kids Practitioner.

 

Constant care

Twelve-year-old Kaspar is a very playful child that enjoys art and music therapy. He loves to feel the rumble of his wheelchair beneath him and to be around his large extended family.

Kaspar however, lives with a rare birth defect and life-threatening illness, which creates constant concern for his parents Christine and Mario.

Diagnosed with Agenesis of the corpus callosum, a congenital disorder, only three months after he was born, Kaspar now suffers from cerebral palsy and uncontrolled epilepsy. He is non-verbal, fed with a tube and wheelchair bound.

“When he was eight-months-old doctors said he wouldn’t reach 18. It was so hard to hear. It took a few years of counselling and support to get us pragmatic and realistic” explains Christine.

Kaspar’s siblings Owen (nine) and Ivy (six), also worry about their big brother constantly being sick.

Very Special Kids has supported the Ferra family for over eight years and the relationship built has meant that they can recharge their batteries and have a little normality back in their life. Very Special Kids provides Victoria’s only children’s hospice where children with life-threatening conditions can receive specialised 24-hour care in a home-like environment, and families can have some much-needed respite.

“I myself find it all really overwhelming sometimes but I’m so lucky that my husband and I have such a good relationship and are on the same team. It’s really great to have some respite with Very Special Kids and have time to focus on the little ones” says Christine.

“When you have a child that has high medical needs, you often feel scared to leave them in case they pass away, that’s a reality we live with. But I know my child will get the most amazing care and support that is probably better than what I can offer at home, at Very Special Kids.”

Having a sibling with a rare genetic condition can deeply affect a child. The Very Special Kids Sibling Support Program was created to provide unique activities where siblings have the opportunity to meet other siblings in a caring and safe environment. Owen has been participating in the program for four years and Ivy for two, they both have the opportunity to meet other siblings struggling with similar challenges.

“In a way, the kids all know Very Special Kids is the common denominator. They love the therapy, it’s hidden in play and it’s all about building resilience and friendships. It really helps with their well-being and makes them feel special.”

The Ferra family are also in constant contact with a Family Support Practitioner from Very Special Kids who provides professional counselling and therapy to not just Kaspar’s parents, but Ivy and Owen too.

“Heidi has been a major support for our family, especially when Kaspar got really ill and almost died, she was able to debrief with the children. We are so grateful for her constant help”.

“Death is always in the forefront of your mind when you have a child with high medical needs, but Very Special Kids definitely helps take a little weight off our shoulders.”

“Very Special Kids has made a huge impact on our family and also made our ability to explore the world better. Kaspar’s needs are met to amazing standards” says Christine.

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The D word

Written by Angela Flood, Family Support Practitioner at Very Special Kids

With Dying to Know Day happening today, it is timely to raise the question of how we as a society of many cultures, faiths and beliefs talk about the inevitable d word: death.

Dying to Know Day aims to activate conversations and curiosity, build death literacy and help grow the capacity of individuals and community groups to take action toward end of life planning.

As an organisation that supports a family through their entire journey, it often means supporting up until and beyond the untimely death of a child. This means it is often exposed to the harsher realities of life and the often ‘taboo’ topic of death. It is a difficult topic, no doubt about it, but the fact that it is difficult is the very reason we need to talk about it and by ‘it’ I mean death.

There are many ways of framing the word Death – in fact Google will give you so many euphemisms you will be surprised. From the common ones such as pass away, gone to sleep and expire to the more slang ones such as Cark it, Give up the Ghost and Bite the Dust. There are many ways in which we as a society avoid saying the D word.

When working with families at Very Special Kids, it is important for us to be culturally sensitive and from time to time this means using a particular culturally preferred language, but this does not mean that the death is not spoken of or denied.

So what you might say, why does it matter if we avoid the D word? It matters for a number of reasons.

Some people use the other euphemisms because they feel it ‘softens the blow’ – having worked with bereaved families for a long time, nothing, especially not the use of a slang term softens the blow of losing a child. In fact it can often just increase the isolation they feel, as it can diminish their grief and trivialize it.

An inability to use the words dead, died or death can disenfranchise the bereaved and isolate families further. It can unfortunately send the message that you can’t handle the conversation if you can’t even say the word.

It matters that we use the words death and dying with children. Children are very literal in their thinking, so when we use terms like gone to sleep, pass over or bite the dust, children take that for what it is. They think that the person who has gone to sleep is going to wake up, or the person that bit the dust copped a mouthful of unpleasantness. It’s misleading and leaves them feeling confused on a number of levels.

Children need reality, truth and adults that lead by example and show that it is okay to talk about death. Not speaking the words death and dying is not protective, it is simply denying something that they are eventually going to learn about.

Finally it matters, because at the end of the day, we are all going to die and if we can’t find the words to talk about, speak of the inevitable then our own experience of death and dying and the experience of our loved ones may not be what we need nor want, shrouded in mystery and denial.

Slowly there is change emerging and death education is a bit of a buzz at the moment, almost trendy some might say.

Working in paediatric palliative care however highlights the fact that whilst society may be inching forward in the language of death, people still struggle with acknowledging that children do die.

By failing to acknowledge that children do die, where does that leave their grieving families? Alone.