On being the parent of a child with a chronic illness – Part 1

Another guest post from my incredible mum.

Any parent will tell you, it’s their worst nightmare: to have a child with a serious or chronic illness. So, it might surprise you to know that I have a child with a chronic illness and (now!) I hardly give it any thought at all! How can that be?

Laura’s Crohn’s disease was diagnosed about six years ago now and for four years or so after that, it was pretty much all I thought about and, like any other parent, I would have done anything to take the illness away.

At first it wasn’t too bad, just a bit of blood in the toilet, and I encouraged her decision to go down the ‘alternative’ medicine path; months of boiling up smelly Chinese herbs for her to drink, acupuncture and remedial massage. Shane was beautiful and supportive and caring – we trusted him and wanted to avoid the medical treadmill – and while I absolutely believe that this route is more than helpful in many ways and under many circumstances, Laura did not improve, in fact she got worse, and I still live with the uncertainty. Had I not encouraged this treatment, if we had pursued the medical path sooner rather than later, would things have been different? Would it have been nipped in the bud before it became too serious? There can be no room for regret – no point in even contemplating this – just move on!

I don’t even remember the first time I actually heard the Crohn’s disease diagnosis. I don’t remember the where or when, only a vague recollection of knowing someone in the distant past with the disease, and knowing that it was ‘bad’, but very little else – very little else because her disease had been shrouded in mystery, spoken about in whispered tones and never within her hearing! Now I know why! Way back then, I think I had a vague idea of some sort of wasting disease that resulted in one becoming like an old crone! I certainly wasn’t aware of any spelling variations! Little did I know how much more it would mean to me another twenty years down the track!

And so we stopped the ‘alternatives’ and pursued the medical path. We were blessed with great doctors, such supportive and caring medical staff, but I still remember so clearly the fear and uncertainty. I remember waking up in the night in a panic: how could I be letting this happen to my beautiful daughter? Surely I should be ‘doing’ something. Surely I could not just be going on with ‘normal’ life when all this was happening to her! But I did and the illness progressed through a litany of phases, disasters, medications, possibilities –and impossibilities.

I guess having had the experience of a temporary ‘loop’ ileostomy made ‘the real thing’ so much easier. We knew the freedom of it, the reality of it, but still, unlike the initial announcement of the illness itself, I remember in the greatest detail the day we knew for sure that permanent surgery was imminent. It was my birthday: 17/9/13. We (the three of us, Laura, Mikey and I) went to see her surgeon in the morning. It seemed the temporary loop, while relieving the symptoms, had not done anything towards healing the large intestine by resting it, which had been the hoped for result. We went there to discuss the options; all three of us trusted him, our lives in his hands (literally in Laura’s case) but I don’t think any of us had acknowledged the reality: that we would walk out of his office a short time later knowing that, in just one week’s time, what had been temporary would become lifelong. In just one week’s time Laura would have major surgery to remove her large intestine, her rectum and colon – it would be irreversible – once it was gone there would be no putting it back! I think we were all a little stunned, and, at the same time, hugely relieved. A decision had been made. It was Laura’s decision but a decision in which we supported her totally – although again, I would wake in the night in the days that followed, screaming in my head: Don’t let them do this to my daughter!

After our morning visit, Laura went to work as if nothing had changed – well, what else would she do? Mikey and I had taken the day off and met up with Sue and Beth, dear friends from Melbourne, with whom we went out for lunch to catch up and also to celebrate my birthday. I could relate every minute detail but suffice to say my fragility came home to me with a vengeance when I heard Mikey trip and fall outside the restaurant, and I lost it completely. I cried uncontrollably, I couldn’t take another thing and I couldn’t cope if Mikey had hurt himself – which he hadn’t – I was at breaking point myself.

Waiting in 2South

But in my heart, I knew the decision was right; it was what had to happen. A week later we saw her off and then filled in the long waiting hours, a meal at the Bank hotel down the road, then sitting in the foyer of 2South watching as each patient returned from surgery. Would this be her? Had she made it through? And oh the relief when she returned!

I think that day when Mikey fell was one of the few times I really let my emotions show. I know I cried when she returned from surgery, but again it was only Mikey who saw that (and the lady sitting nearby also waiting for a loved one!) As a parent, of course you want your child to know how much you love them and care for them, but it also feels as if you must be strong, not let the worry show, not seem too concerned – be confident and calm. And so it is . . . life goes on . . .

In her recent post, Facing Our Fears, Laura spoke very honestly about her fears: about never getting better, about leaving the house and soiling her pants, about fear of the unknown. And her greatest fear now: Will it come back?

For me, it’s a little like those days of being calm and coping but waking up in the night in a panic with that screaming voice in my head: Don’t let this be happening to my daughter! Occasionally, when I am very tired or feeling stressed, I still come suddenly upon that feeling of I-must-do-something, I-can’t-let-this-happen-again. If I was to dwell upon it, if I took my awareness there, if I let my brain take over – well of course I KNOW that Crohn’s disease is chronic. Of course I know that it cannot (at this point in time at least) be cured; it could come back anytime, anywhere. But then, as I am prone to say, I could walk out the door and be run over by a bus. Like Laura, I can’t spend my life waiting for it to come back. And so we will talk about it in the past tense – we will know that she woke from her major surgery feeling that all the ‘bad’ had gone, we will celebrate all the good things that have resulted from her illness and we will live life to the full, right here, right now. And we will give thanks always for what is now.

I am the parent of a child with a chronic illness – and I hardly give it any thought at all! Honestly, what more does it deserve?

Someone asked us recently, “Is there any limitation to the body’s ability to heal?” And we said, “None, other than the belief that you hold.” And he said, “Then why aren’t people growing new limbs?” And we said, “Because no one believes that they can.”  – Abraham Hicks.