To all those parents of children who live with chronic or life-threatening illnesses…

We, too, now share with you in…

- the bone-aching sorrow for your child’s possible future, the impact of their illness on their happiness, schooling and personal development, future health, any relationships and friendships, the development of co-curricular, stimulating activities and hobbies… and, worse, the gnawing anxiety within that they may not even have a future;

- the constant emotional and physical exhaustion of never-ending worry, by day or night, and the associated social faux-pas, misunderstandings, and complete lack of ability to cope every time something new or freshly challenging confronts you;

- the recurring thoughts of every evening possibly being the last time you kiss your child goodnight;

- the daily battle to stave off engulfing negativity about what lies ahead;

- the unfounded guilt at perhaps being responsible, in some way, for your child’s illness;

- the despair of being powerless to help or change any outcomes even though it’s your very own baby in so much trouble;

- the constant barrage of questions from a sibling, and the poignancy of hearing their simple prayers for healing;

- the loneliness of the journey – the constant appointments, the seclusion and isolation at home without visitors or play dates, the obsession with blood counts and germs;

- the challenge of being the only playmates for your child day after day;

- the inflexibility when making appointments, organising work days/hours; and by contrast, the flexibility required by others for social engagements or best-laid plans;

- the tears that flow so freely at the sound of touching words or song lyrics;

- the dashed life plans for the upcoming months and years;

- the keen futility felt when unable to assist other friends, mind others’ children, attend others’ celebrations;

- the difficulty engaging in small talk amidst social interactions;

- the frustrations of seeing others not take advantage of and responsibility for their own and their children’s health;

- the grief when watching other physically-able and strong children of the same age playing and tussling delightedly with each other;

- the dread of awaiting serious test results… week after week;

- the inability to commit to any social activities, festivities, future plans or holidays, and thus the unrewarding responsibility of not disclosing any “plans” to the children until they’re actually happening;

- the anguish and hurt you feel at losing friends who haven’t wanted to share in the arduous journey or simply don’t make time to;

- the heartache, and then eventual pride that emerges from seeing your child, in all their vulnerability, endure so much pain, and ultimately adapt to new routines, the discomfort of procedures, incessant medications, and strangers at their bedside.

At the moment, I feel constantly exhausted and constantly fearful. Living in “limbo”, with ongoing uncertainty for so long has certainly taken its toll on both of us. The days stretch out before us; the hours ticking by ever slowly towards any answers we may get in the next few weeks. As much as we don’t want to hear a negative test result, we do, in fact, merely want to get this test result out of the way and dealt with, regardless. But ultimately, I know God has us in His hands, and we’re travelling a path that He has foreseen, and this gives us some solace from those fears and anxieties.

I know not all of you believe in God’s unconditional love for each of us, but, for Seth and me, the hope and peace that our faith affords us carries and upholds us through these bleak and turbulent times. And, during perhaps the most grueling time in my life thus far, the words of the song “In Christ Alone”, sung on the day Seth and I began our life together, are so poignant, and aptly articulate why we feel this peace about Ned’s life:

“In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My comforter, my All in All,

Here in the love of Christ I stand.

No guilt in life, no fear in death,

This is the power of Christ in me;

From life’s first cry to final breath,

Jesus commands my destiny.

No power of hell, no scheme of man

Can ever pluck me from His hand;

Till He returns or calls me home,

Here in the power of Christ I’ll stand.”

Edward Isham