'Choice': Navigating the uncharted territory together
“Learning to choose is hard. Learning to choose well is harder. And learning to choose well in a world of unlimited possibilities is harder still, perhaps too hard.”
On the 16th July 2009 Ignatius was born and it was love, instantly. My husband and I had made a choice to have a family, we had made a choice to only have one child, we had always wanted a little boy and here he was our blonde haired, blue eyed, little piece of perfection. One month later, on the 16th August 2009 our baby bliss was replaced with despair when we received the phone call from our paediatrician. He told us that Ignatius had Cystic Fibrosis. I knew what this diagnosis meant, as a child, I had lost a cousin to Cystic Fibrosis. With that one phone call our lives changed and my husband and I began making choices but they weren’t the choices we had planned (or wanted) to make. We didn’t know it yet but we were on a different journey, we had just entered uncharted territory. It was going to be rough and storm filled, full of difficult choices but ultimately this new journey with Ignatius would make us the best versions of ourselves.
At the time of Ignatius’ diagnosis we felt as though our right to make choices had been stripped away and our child’s lifetime of choices had been stolen. I don’t have a lot of memories of Ignatius immediately after that phone call; it’s a blur of immense sadness, grief and fear mixed up with the fact that at some stage we are going to have to bury our only baby. It took me a while to emerge from this ‘fog’ and even today this fog presents as anxiety. Immediately, we had to learn to choose our battles and where we placed our worries. It was going to be a long road full of difficult choices but we could do this together.
Every day we make choices based on Ignatius’ medical needs and on his needs as an eight-year-old boy. Early on in our journey we needed to make choices just to keep our family afloat. My husband and I had to address our own inner dialogue and fears to make sure we could make the right choice when the time arose and most importantly to make sure we were fully available to Ignatius when he required us. We made a choice to engage with our new life head on. We made the choice to make sure that Ignatius would not miss out on anything; that he would experience everything the world had to offer. It was our job to make sure he was not defined by Cystic Fibrosis. It was our job to make sure that he loved life and stayed positive whilst dealing with this relentless disease.
Very quickly we had other choices to make: we could put our head in the sand or we could stand up and keep moving forward. Over time, we have developed (and continue to develop) the knowledge to care for Ignatius. We have learnt to integrate his treatment regime into our daily routines. We have learnt how to manage Ignatius’ care so that it doesn’t invade his life too much. We began making choices for our family to make sure we are always doing the best for Ignatius.
A major choice that we have made is to see Ignatius’ treating team as part of ‘our’ team, they are not the enemy, they are stakeholders in our journey. As a child, I remember going to the doctor and the doctor made the decisions. We did as we were told. Doctors didn’t have ‘conversations’ with their patients about their feelings and what was a priority to them. Patients weren’t allowed to have a copy of the doctors’ notes and there was no such thing as a care team. When it comes to our care team we choose to ask a lot of questions, we respectfully challenge their opinions and we push our care team to make sure they are looking for the best options in care, not just the easiest ones. We choose to believe that our care team respects us and that they appreciate our dedication to Ignatius’ care (they probably think we have moments of insanity, but who doesn’t). We choose to work with the doctors to ensure the best outcomes for Ignatius.
As a family, we have actively made a choice to engage fully in the process, together. We choose to actively advocate for ourselves and others with Cystic Fibrosis. In embracing advocacy, we are teaching Ignatius to speak up for himself. We are teaching him to be heard and how to clearly articulate his feelings so that others will be aware of his needs and limitations. We are also giving him the tools to be able to deal with the hard questions and comments that will ultimately come up around his disease. We choose to express our feelings and thus teach Ignatius to express his feelings. This process has been hard but very rewarding. Sometimes our little people with CF need to hear from us that their treatment does ‘suck’, but together we can do it.
Every day you have choices to make, especially when you find yourself in uncharted territory. Some of the choices have very little to do with Cystic Fibrosis, and some of them have everything to do with it. We believe that learning that the power to deal with this journey is in the choices that we make is an essential part of teaching our children how to function with Cystic Fibrosis.
The choices we make teach our children that they have control and power, they are not Cystic Fibrosis, it does not define them.Shannon is the mother to Ignatius (Iggy) who is a vivacious, energetic and slightly cheeky 8 year old boy (who happens to have Cystic Fibrosis). When Shannon isn’t cheering on Ignatius’ rugby team or driving him around to participate in one of his many sports she is a teacher in a local primary school where she tries to empower the children in her care to become active learners and compassionate members of society. Shannon’s family motto is that ‘we collect memories not things’ and she is constantly on the look out for life’s next adventure. Shannon is actively involved in advocacy for Cystic Fibrosis. She has addressed Parliament, spoken to Parliamentary members at National Health debates, appeared in advocacy campaigns, attended Balls at Parliament House to lobby for access to new drugs, participated in the hospital peer review process and been a member of the managing committee at CFACT. Shannon credits Cystic Fibrosis for helping her achieve some wonderful goals including running the New York Marathon with her husband in 2012 to being awarded the 2016 Governor General Award for Consumer Advocacy and Networking. Shannon is the first to tell that she is not an expert on anything Cystic Fibrosis related, she believes that the power to be able to deal with the tricky situations that Cystic Fibrosis throws at you starts with empowering yourself with knowledge, asking lots of questions, positive thinking and a good sense of humour.