Dealing with longterm illness

A DIAGNOSIS of a long-term medical condition in a child will bring on a major upheaval in the lives of the whole family involved.

It also leads to a long-standing relationship with health-care personnel.”

I’ve lifted this straight from the internet. I’m not going to bother putting it into my own words. Never mind that this sentence is colourless — it’s true. And it does the job. So there you have it.

I won’t describe what major upheaval feels like as a parent, either. No way. Not in 800 words I won’t; I’d only touch the surface. It’s just too long a story.

In 800 words, for maximum impact, I’d have to poeticise it. Seamus Heaney or Stevie Smith could have done it justice. But even if I wanted to have a stab at describing this major upheaval, I can’t because I’m too distracted preparing for hospital; admission is on Sunday but I’m leaving today to meet the outreach nurse, and I haven’t done a thing.

Another thing I’m not going to describe is the long-standing relationship with health-care personnel — other than to say my husband and I sometimes think we owe as much by way of gratitude to our consultant as we do to our mums, and that’s saying something — because again, it’s just too long a story.

But what I am going to do, before I make a start on the packing, is describe what I’ll be bringing with me to hospital:

1. Babyliss hairdryer/hairbrush all-in-one wonder-tool. Hospital hair is the pits.

2. The Earth by Emile Zola, though I may as well just rip out page one and bring that, since all I’m going to be doing is reading the first paragraph over and over again.

3. Pyjamas fit to be seen in public.

4. Mantras and apothegms; mainly my mother’s — which will be familiar to regular readers by now — such as, “Life is good if you don’t weaken”, “Beware of self-pity” and “Keep the heart up, love”. But I’ll be bringing some of my own too. “If you don’t cry, you die” will definitely be coming with me, and “Grace under pressure”. You always need those.

5. My laptop, so we can all watch Orange is the New Black (top telly) on Netflix.

6. Two pairs of slippers for the patient, so as to avoid hot, sudden foot-shame in lifts.

7. A feeling of vulnerability such as you might feel if someone held your heart out over a swimming pool of crocodiles.

8. Manners, as important in hospital as anywhere else. My nursing friend Vanessa has never forgotten being called a “poxed-up whore” by an elderly patient as she tried to pull up his pants.

9. Elizabeth Arden Eight-Hour Cream. You age a year a day in hospital.

10. Totally fearsome bloody-mindedness. Held in reserve. Just for emergencies. You should see it — it’s mighty stuff — there’s nothing on earth more bloody-minded than a mother frightened for her child.

11. Fear. Seriously, I haven’t got time to describe this fear. But Ranulph Fiennes’s description of climbing the Eiger, while suffering from vertigo springs to mind: “Horrific.”

12. A surprise gift for the patient.

13. Patience. For all the waiting around.

14. Nicorette gum. Not the time to be discarding that old habit, what with all the waiting around.

15. Nerves of steel. Hard to describe — but Fiennes, vertigo and the Eiger spring to mind again.

16. Faith. In whichever god will listen — I’m not fussy.

17. The A-team. For this trip, my husband, my eldest son, Vanessa, two sisters, and sister-in-law.

18. Hope.

19. Ear-plugs. A crucial aid to nightly oblivion.

20. Love.

And last but not least, I’ll bring the patient — way too old now to be distracted by teddy-bears, Angelina Ballerina books (or if all else failed, chocolate buttons). And she will lounge about on the hospital bed — all long limbs, elegant ennui and flicky-up eye-liner — like an expensive kitten.

And I will look at her, chatting and smiling through it all and think, for all I’ve taught her, she’s taught me so much more.