Our family seems to exist according to the analogy “it never rains, it pours”... Right back to Ned being diagnosed in the fortnight lead-up to my fellowship exams and admitted as an emergency the night before; moving house (under tense legal circumstances) the same day as my final exam in another city; Ned being admitted for a serious infection 2 days before my labour induction to deliver Gilbert; Gilbert being my only non-thriving newborn due to his major difficulties breastfeeding - all while we had a seriously-ill child going into transplant; Eleanor being admitted for severe gastroenteritis a few days before she had to donate her bone marrow; needing to discuss and make serious life-altering decisions on behalf of Ned after all-nighters with the screaming baby; Ned’s continuous immunotherapy infusion (via frequently-alarming CADD pump) causing new, unexpected side effects, grounding him in Melbourne the day before we were supposed to return to Hobart briefly to prepare for Seattle; abruptly discovering Ned’s first development of CNS disease and his horrifying marrow disease proliferation when we’re over the side of the world to our home … and so it has continued. And thus, in similar fashion, after having reserved boat tickets several months ago for our permanent return to our Tasmanian home just before Christmas (anticipating the holidays’ heightened ticket demand), and packing the car up over the preceding weeks, Seth and I mulled over the options despondently as we took his temperature multiple times that Friday morning, hoping his symptoms would suddenly clear and the thermometer was lying, before I resignedly took him in to hospital.
And so, instead, after bookings were altered and the logistical knot was gradually untangled through a sleep-deprived haze, Seth traveled back to Tasmania by boat with the girls on Saturday evening, and I stayed behind in hospital with the boys to continue Ned’s treatment - which included a 2am surgical removal of his ?septic Hickman central venous catheter (now the first time he doesn’t have a central line in 4.5 years!). Thankfully, his symptoms responded to treatment and the admission was short-lived, so after re-packing our suitcases at our flat and saying goodbye to the wonderful RCH staff, the boys and I went straight from hospital to airport, farewelling my parents (who traveled back to Congo the following day), before flying home to a very warmly raucous welcome.
So how is it? How does it feel to be home? How is the transition for profoundly changed and weary people back to a familiar place and community after 18 months?
We are SO thrilled to finally be home, breathing fresh air, waking up to kookaburra laughter, and hearing nothing but crickets and birdsong at dusk, instead of the traffic soundtrack of our high-rise apartment city life and the sterility of our hospital home. Christmas at home together, WITH NED, quietly celebrating our Saviour’s birth with our family and church was far more than anything we hoped for when we were sorrowfully contemplating the second transplant and its grim prognosis so many months ago in Seattle.
But it seems apt that I employ the analogy of post-run exhaustion as I gear up to run another half marathon this weekend. Because if you can, try to imagine the feeling of crossing a race finish line, having given more than your absolute all, and then realising you have to walk another 20km back to the car, parched, heavily-laden, and under a hot sun...
Where there is comfort in established friendships and recognisable settings, there is also apprehension about social awkwardness and naivety after so few interactions outside hospital for so long.
Where there is strength in seeing and being held by dear ones again, there is fragility and vulnerability in bearing one’s soul, suppressing those prickling tears while divulging pieces of the heartache and anguish.
Where there is familiarity in a much-loved home, there is also the unknown of navigating the family dynamics as we re-learn to live together and recognise each other’s new limits, the set-up with our smallest family member now sharing this space, the adjustments we have to make due to Ned’s poor mobility, the social events we now have to decline because he’s too tired, we’re too emotionally over-wrought, or it’s just dangerous for Ned’s immunosuppressed state.
Where there is joy for the kids in reuniting with dear friends, there are also nerves, sadness at having missed out on peers’ milestones, difficulty sleeping and nightmares, new viruses, and ungrounded fears rearing their ugly heads.
Where there is a normal home / holiday routine, there is also the chaos of re-integrating necessary regular hospital appointments & possible unscheduled admissions, the vast amount of physical rehabilitation Ned needs, and the Melbourne visits for several days of reviews and tests every couple of months, with a return to work and school for Seth, Lucy and Ned.
Where there is the attempt to mindfully settle and purposefully unwind from such tight coils of tension, there is also the necessity for hypervigilance (trying not to be paralysed by the constant overwhelm or fear of relapse), staying abreast of Ned’s regular blood counts, numerous daily medications and oft-changing doses, new symptoms, and maintaining the required precautionary measures to keep him as safe as possible - whilst living in a home where our kids are drinking tank water, treading on wallaby poo (or eating it, in Gilbert’s case), and getting very dirty outdoors.
It’s a world where I’m feeling constantly confronted by juxtapositions. I feel like shouting to everyone excitedly that we’re home, but then I feel almost defeated by many social interactions, broken by some, especially when the expectations are that we slip back into the “normalcy” that we lived before, as if nothing has happened. For though we may appear physically the same, there are deep, deep wounds - both the emotional and psychological wounds, manifesting as post-traumatic stress disorder and anxiety, and the physical weariness from years of having to function at 300%, living on minimal sleep, in unfamiliarity and uncertainty, with constant demands and no respite.
Beyond the years of our own cancer battle, some geographically-distant oncology friends have been battling cancer twice over - their young son’s persistent leukaemia, and now the husband’s current aggressive lymphoma. Their faith amidst the darkness and pain has been such encouragement to me. This is a Bible passage the Hantlas recently shared and their words: “ ‘Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.’ So each day, as troubles present themselves, seek to overwhelm, and in light of the whole scheme of things, threaten to capsize us, we remind ourselves of the hope of heaven and God’s care of us, and we trust with each day as it comes.”
Yes, we are profoundly relieved that we have finally returned to live in our home and have some freedom. Though the recovery is long, and the scars will be there for life, we are even more abundantly thankful to God for the miracle of Ned’s life. Living moment by moment, a lesson reinforced so fiercely over our time away, continues to ring true as we slowly try to recuperate and readjust ourselves and our children back to pleasant mundanity.