Did you know that, despite fairly good prognoses and survival rates for childhood leukaemia in this day and age, long-term morbidity is common? Did you know that, if Ned survives till later childhood, there is a great possibility of extensive learning difficulties and neurocognitive deficits (from intrathecal chemotherapy and frequent general anaesthetics)? Did you know that adult survivors of childhood leukaemia have much higher rates of secondary cancers, obesity, infertility, cardiovascular disease, respiratory illnesses, endocrine disorders and fatigue? I know it’s morbid, but I’m a realist and sometimes a cynic (in stark contrast to my husband), and my medical training always intervenes when I least desire it. These are the potential realities of the life Ned will lead, and in order to best support him through the years ahead, Seth and I have to deal with the grief these possibilities bring us now.
People often comment on how well Seth and I are coping, or how strong we are in the face of this life-threatening illness in our family. The definition of “coping” is “dealing successfully with or handling a situation; managing”. In all likelihood, living in this social media-focused world, many only get to see the “published” face of tough journeys – the smiling photos, achievements, and happy anecdotes.
But let me first dispel the myth and frequently-heard compliment that I am an unusually “strong, resilient mother” (and I’ll speak for myself because my darling Seth really is my rock). What Facebook and this blog possibly don’t convey are those many times I abandon myself to gut-wrenching tears in a foetal position on the floor of our bedroom; or those times when I snap impatiently at the kids or Seth; or those times when the negative (and irrational) thoughts about the “unfairness” of Ned suffering intrude; or even those times when I go into social shut-down, and can’t even bring myself to interact with anyone in any way because I know my vulnerabilities are so raw at the moment. This is not just because of the initial diagnosis of leukaemia… because at that stage, despite the enormous blow, we were both coping fairly well and trying to exhibit some kind of strength in how we dealt with it. Ultimately, it’s because of the constant and successive blows we’ve had since that have just worn me down… and I can tangibly feel my emotional reserves and resilience being depleted by the week. Now, as I alluded to in the last blog post, I find it an uphill battle to hold the tears at bay when I’m simply discussing Ned or how we’re faring with anyone.
But how would I not cope? How can a pregnant mother of 2 dependents not cope? I used to be one of those Mums who would thank the Lord several times a day for the kids’ health and able bodies, and, when reading the blogs of grieving, struggling parents about their journeys with their chronically ill children, would shake my head in sorrow and wonder how on earth they “coped” and continued on with their everyday lives. And now I know… Because when you have children relying on you every single minute of every single day, you just have to manage. You re-set your mind and put one foot in front of the other – quite literally, with often a stumble into the arms of a spouse or partner. It’s a rocky, dangerous mountain hike, and you can only get to the top by taking each step at a time, climbing one boulder after another.
Please don’t mistake me – I am definitely NOT writing this as a cry for help! To get to this point, I’ve already had to admit to my vulnerabilities, come to terms with the situation, and talk to people. I have a history of depression, and treat it in patients. I know its signs well, and I’m not in that place – for which I’m abundantly grateful. I am just re-acknowledging the enormous impact and toll that stretched emotions and exhaustion can have on a person’s and family’s wellbeing – to a far greater extent than I’ve ever had to before.
And when I’m sensible, clear-thinking and have had a reasonable night sleep, I then think of how blessed we are that Ned is even living in a country like Australia, where he can access such superb treatment of this nasty disease… while I know that where my parents are living, in Congo, children with leukaemia wouldn’t get a second chance. These facts certainly don’t make me happier or more content about the journey ahead, but they indubitably and decidedly remind me of the many unseen blessings we actually do have in our lives.
Our “mountain hike” and buoyancy are of course boosted by our faith, and the little moments along the way – the childrens’ joy and laughter during play, Ned’s funny little comic routines and incredible resilience (still smiling, crawling around on his casted broken wrist), the hugs we get… not to mention (as I often do) the generosity from others. And may I just take this opportunity to both acknowledge and again show our immense, vast appreciation to all the named and nameless donors – the vouchers, the cash donations, the online donation into our bank account, the nappies on our doorstep… we are so profusely and deeply grateful for the generosity, kindness and love this shows us, alongside the many, many words of encouragement and prayers.