Sharing experiences & documenting knowledge

Each Team of Life session involved two meetings with the parents in the one evening. The first meeting with parents, which took place while their young folk were engaging in developing their Team of Life, invited open discussion of the issues for families in dealing with chronic illness.

One of the parent groups, which was particularly for families in which a young person had experienced a heart transplant, was facilitated by Glenda Fredman. Glenda created the following document from the words spoken by the parents in this session:

Negotiating the Heart Transplant Journey  

How we are trying to make relationships work: Wisdom from parents

As parents of children who have had heart transplants, we are on quite a journey. It’s not one we chose. These are the cards we have been dealt. This is a document of our words about some of what we have learnt along the way. We have particularly shared here how we are trying to make relationships work.

Effects on relationships

Having to constantly focus on our child and putting all our energy into enabling life can sometimes bring unwanted consequences. Sometimes it can bring difficulties to relationships. It can affect our relationships and sometimes divide families. For some of us it has created difficulties making friends or affected relationships between parents and between family members. Sometimes decisions we make as parents regarding medical treatment for our child impact on our relationships with them as well. This journey certainly has its ups and downs! At times it’s been accompanied by unwanted feelings like resentment or anger (along with sadness, loss and fear).

Recently, when we came together as parents, we discovered we have many questions. Some of these include:

  • How can we take care of our relationships (I am concerned about the rate of relationship breakdown)?
  • How can we help siblings cope?
  • As our child enters adulthood and has more control over decisions regarding their health, what differences will this make for us all?
  • What have we all done to get through the weakest points in our lives (like having to face one condition after another)?
  • If pretending this is not happening doesn’t help, how can we accept what we are going through?

Our ideas about making relationships work

Because this journey can have such effects on relationships, we thought we would share our ideas and knowledge about what we do to make relationships work. This includes relationships between parents, spouses, partners, with children, with siblings, and friends. Here are our ideas so far.

Remembering there is no right way: there is no wrong way

We have learnt that everyone travels this journey differently. For some of us there has been resentment and rage. Others of us are making the most of what we have. Some are putting on a mask. Some are being brave. We do this in the only way we know how. This is true for us as parents but also for young people who all grow at different rates. We try to hold onto the knowledge that there is no right way, no wrong way.

Treasuring the good times

Some of us spoke about ways of treasuring the good times, noticing what is going well. We might focus on small things like the ‘fun part of watching (medical monitoring) equipment disappear from our son’s room’! We look for the positives and the developing strength. It can make a difference when we treasure the good times.

Gravitating to hope

It can make a difference to gravitate to hope. The bonds we have made with doctors and nurses at the Royal Children’s Hospital, connections with family, and getting other children/peers on board, are all significant to us. We seek out those who can travel with us on this journey. We gravitate to hope.

Finding new ways to communicate with family

When on such a journey, we have had to find ways to communicate with our families. We have different ideas about this. It has included accepting each other’s different ways of coping. Sometimes it involves sharing feelings and being understanding. These are times when we are moving together on the journey. Other times, however, it’s significant when we recognise we are taking each other for granted, or when we notice that we are taking our frustrations out on the other person. In relation to our children, some of the things we have learnt about communication include being fair but firm; being up front; and not keeping secrets. As we negotiate the heart transplant journey we are learning new ways to communicate within our families. No doubt this will continue!

Seeing the child first, heart after

We have had to learn to see the illness as separate from the person. It’s not fair to define the person as the problem. We have come to see how the illness knocks the young person off track. Development stops and picks up again. It can take them time to find their feet each time after they go home from hospital. It’s like we all become institutionalised and then have to readjust. Along the way, we’ve found it helps relationships to see the child first and the heart after!

Relearning how to live

We have had no option but to cope. There’s no point thinking ‘poor me’. We soldier on. We hold on. We learn to deal with it. But sometimes when one crisis is over it’s like we have to relearn how to live. We have to try to get back to normal, to get our lives back in gear. This can be easier said than done, but we can use information and knowledge.

Some of us have found we need to give ourselves permission to take a bit of personal space. We all have our different ways. Some of us use work for an escape. Others of us use 5mg of valium. And some of us find a place where we can talk openly and safely about our hurts, anger or resentments. We all do it different ways, but we are all relearning how to live this new life.

Dealing with the cards we have been dealt together

As we said before, this is a journey. We didn’t choose to be on it. And we can’t control the outcome. But we can try to deal with the cards we have been dealt together. We can try to travel the journey together.

We still have many questions. And there are times when this journey can really strain relationships.

In this document we have tried to share some of the things we have learnt along the way.

These are some of things we do to try to make relationships work:

  • Remembering there is no right way: there is no wrong way
  • Treasuring the good times
  • Gravitating to hope
  • Finding new ways to communicate with family
  • Seeing the child first, heart after
  • Relearning how to live
  • Dealing with the cards we have been dealt together

We would be interested in hearing ideas from other parents who may be on similar journeys.

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