Q is for questions

Sam Bowen's avatar

by Sam Bowen

Questions, I find I have a lot of them. In fact seven years on from Lucy’s diagnosis, I probably have more now than I did at first. Why? (There’s another one!) because once you have a bit of knowledge or experience, it unlocks a door and you need to find out more.

It’s a bit like that children’s book, ‘If you give a mouse a cookie’ one thing leads onto another and in the end it’s not unusual to find yourself back at the start asking that initial question again as you realise now that it was never fully answered in the first place.

I have a day to day list of questions that runs though my frazzled brain. These include:

Why us?

Why did the IVF clinic not run the relevant test that would have discovered a genetic problem?

How long can we keep on lifting Lucy and when will we need a hoist or WAV or stairlift etc

When will she walk? – Actually most days it’s 'will she ever walk?'

Will she sleep tonight?

How long will she live?

Draining isn’t it? And all of that commentary is running alongside the day to day questions like:

What are we going to have for dinner?

When’s our next hospital appointment?

Is it the blue bin or the green bin that goes out this week?

It’s like having two radios on in the room at the same time.

Then there are the times when really I should have been more focused or better planned with my questions. Like the appointments with another medical specialist that we have waited months to see.

Those times when time is precious and every question counts, what happens then?

I often either dry up and can’t think of anything to ask or go full throttle and ask things that really aren’t relevant to the situation.

Why do I need to ask them if they are well; had a good holiday; been busy that day?

Seriously they are not my friend so why do I feel I have to normalise the social setting?

Perhaps, a part of me is screaming out to do just that. To divert the horrible questions that I really don’t feel I can manage the answers to. To pretend just for a minute that everything is ok, is normal, is fixable.

Questions you see can be a double edged sword.

Partly because we don’t know if we are going to like the answers until we get them and partly because on the whole, answers are somewhat subjective.

What one Doctor will tell you, we have learned from bitter experience, can vary widely from what another will say.

Do you keep asking all of them until you find and stick with an answer you like the most, excluding all others?

I think perhaps honesty or method of delivery of medical facts varies quite a bit culturally too.

I once asked a Swedish Epilepsy consultant who we had not met before, “what would happen if one of Lucy’s seizures happened in the night and went on without us knowing?” to which she simply replied “she would probably die”.

Whilst this may well have been a rational answer, it certainly wasn’t given kindly. 

It did however jerk me into action and by the end of that week I had bought an epilepsy alarm which Lucy now wears every night.

 It’s saved her life twice, so I’m glad I asked that particular question.  

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