Parenting a Child with a Life Threatening Illness: The Best Mindfulness Practice of them All?

When my daughter Freya was born, it was clear to all present that something was wrong. Her bottom jaw was tiny and recessed, and her chest was the shape of a bell, narrowing at the top. She breathed really hard and fast. After weeks of investigations and what seemed like an endless queue of doctors, we were told that Freya’s lungs were so restricted that they did not think she would survive childhood. For an instant my world stopped and I knew a part of my heart had been irrevocably broken.

The months that followed were the hardest — we had gone to hospital expecting to leave with a healthy baby. Instead, Freya was discharged on palliative care, and instead of life at home with a new baby, we kept on bouncing in and out of pediatric intensive care with Freya repeatedly becoming critically ill. We left our home behind and lived at hospital accommodation, spending all our time by her bedside.

I constantly felt extremely stressed out and anxious. For the first time in my life I was scared of thinking about the future. I realized I had lived years being addicted to destinations. I’d be happy when I’d get that promotion, when I’d go on that holiday, when I’d tick off another thing on my list against which I measured how successful I deemed myself.

I knew once and for all that this approach would not work. When it came to Freya, all predictions pointed at a destination of heartbreak. Even if things took a U-turn and Freya’s prognosis was wrong, I wondered whether the way I had viewed my life would ever allow me to be satisfied. If I kept thinking happiness exclusively resided somewhere in the future, how could I feel it today?

I was vaguely aware of the concept of mindfulness, a practice that has its roots in Buddhist meditation. I knew it was about developing practices that help us experience our lives in the present, rather than obsessing about the past or worrying about the future. I also knew that if my family and I wanted to survive this new life we’d have to cultivate this kind of thinking. Living in the past, concentrating on things we had lost would only make us bitter. If we spent all our time worrying about the future there would be no space to enjoy today. So I started actively looking into mindfulness. I read books, watched documentaries, and have just finished an 8-week course into mindfulness.

So what have I learnt?

Thoughts are just thoughts, not facts

Most of us can easily think of a time when we have jumped into a conclusion and been dead sure we were right until realizing we had got it all wrong. Despite knowing that our minds are far from infallible, we often still automatically deem our thoughts as facts. I know I do it regularly even though I find it neither right nor helpful. For example, one afternoon I might look at Freya and think she seems to be breathing harder than usual. My next thoughts might be that her respiratory function is on the decline. Panic hits me. How about if it is permanent? How about if it’s a start of a steady decline? I start imagining what life would be like if her care needs increase. Inevitably, I start thinking of the “what ifs” and the worst-case scenarios. I am filled with fear and dread, and for days I feel like I am walking on eggshells. It takes me days to shake off this feeling, and some of it lingers at the back of my mind much, much longer.

Practicing mindfulness has helped me to reduce the amount of times I spiral into these kinds of unhelpful though patterns. Doing mindfulness breathing exercises allows me to stop and look at my thoughts from some distance in the hope that this gives me some much needed perspective. It doesn’t stop thoughts — it is not meant to — nor is it supposed to be a vehicle to criticize or suppress my thoughts. But it can help me stop catastrophizing simple observations.

Other people’s thoughts are just thoughts, not facts

For a long time, I held onto each word of the poor prognosis and negative predictions that doctors told me as God’s honest truth. I remember the ENT surgeon speaking to us after performing the tracheostomy and apologetically telling us that he thought there was little chance of Freya not needing one for the next 5-6 years. Instead of disappointment, my partner and I felt delighted that someone thought Freya could live that long. The initial discussion of Freya’s poor prognosis had set roots so deep in our minds we could not see there being any other way her future could go.

Two and half years down the line, Freya is thriving despite her complex medical needs. We are not “out of the woods” by any stretch of the imagination, but the time that has passed has given me perspective. If my thoughts are not facts, neither are those of others.

Prognosis, predictions, expectations. These, by their very definition are not facts. Sure, when talking about Freya’s health I put more weight on the opinion of an expert in respiratory medicine, than — let’s say — our postman, but that still does make it make it a fact. Accepting this has been a liberating experience, allowing me to hope for an easier future, but firmly grounding me in today.

There are things we cannot change

There are things I cannot change, but I can (try to) change the way I deal with them.

If we want to live our lives mindfully in the moment, we need to accept that there are things that we cannot change even if we put all of our effort in fighting them. This does not mean giving up; this means that we need to carefully, with honesty and wisdom, identify what are the things in our lives that we cannot change.

For me, it has not been accepting that Freya will not live past a certain, specified age — none of us can with any reliability predict that. But I have had to accept that Freya will always have medical challenges in her life, and that will unavoidably affect our life as a family. I have to accept that our lives have now irrevocably changed. Not fighting what I cannot change allows me to have energy for other things in my life, and frees me from a lot of negative feelings generated by fighting a losing battle.

So has my study of mindfulness led me into a state of eternal happiness and contentment?

No. I still get anxious, I still get sad, and there are days that I feel thoroughly hard done by. I freak out and I get angry. I lose the house keys and forget people’s birthdays. I am still completely petrified of the thought of losing Freya and find myself bawling my eyes out when I read sad news about ill little people.

But I feel it has equipped me with tools that help me to regain my balance quicker. I often find myself reveling in the little joys my life seems to be full of, more so than before I took up mindfulness. It’s allowed me to refocus and feel my feelings — whether I regard them as positive or negative — rather than running away from them. I do not know what the future holds but I am less afraid of it. Like they say, it’s not the destination that counts but the adventure along the way.

A dispute resolution lawyer in her past life, Elina is now a full time mother/personal assistant/carer/advocate for her 2.5-year-old daughter Freya.

Extra special from word go, Freya has been diagnosed with a very rare genetic condition called cerebrocostomandibular syndrome. She has a tracheostomy and relies on her trusted ventilator to get a good night’s rest. Freya is well known at her hospital for being a very cheeky baby with a fantastic wardrobe.

Elina writes a blog about her family’s journey with a child who has a life threatening condition. You can read this at teamfreyablog.wordpress.com. You can also follow Freya’s day-to-day adventures on Facebook at Team Freya.