Wednesday, March 19, 2014

The helpful (& a few not-so-helpful) things people have done while we've had a sick child


Last week I wrote about how our year hasn't exactly started off as we had expected with our daughter being very unwell.  The list below is completely drawn from my own experience and from what I've learnt from chatting to others with chronic illness in their families.  It's very personal so I'm sure some of you will look at some of these points with a totally different response.  But I still write it, partly for myself (so I can look back and learn from this time) but also so that others can maybe gain some insights from my experience.

The Helpful

1. Offering to pray for us.  It's been hard to pray when we just feel stressed.  I have really valued friends patiently texting for updates so they can pray, even when nothing's changed.

2.  Being understanding when we've just had to bail out of so many commitments.  Not just activities for her, but needing to have a parent to be a full-time carer has involved a 'spot' of rearranging.  We've had to bunker down a bit just to get through normal family stuff.  And being anxious non-stop for eight weeks is surprisingly tiring (imagine what it is like for people coping with long term chronic illness).

3.  Little gifts to cheer her and us up. She's experienced a real wave of love and concern as friends and family have thoughtfully dropped over a mountain of DVDs, tubs of ice-cream, mailed parcels of craft and lollies, get well cards with little treats.  A friend sent us a Coles online order of just indulgent stuff like fizzy drink and ice-blocks and that was just a fun thing in the midst of what has been a lot of 'hard'.

4.  Reminding us of the basic truths of God's wisdom and goodness in this time, is precious.  A well-timed Bible verse is amazingly powerful to keep our eyes fixed on God's big perspective on our lives.

5.  Being patient when I want to vent because I'm just feeling overwhelmed.  It's boring to listen to I know.

The not-so-helpful

1.  Asking me if she was sick because she was feeling pressure from us to perform well.  I don't think that's why she got sick, she has a virus, but when you're feeling pretty vulnerable and uncertain, you start wondering if you are indeed to blame for this happening.

2.  Telling us stories of viruses gone wrong.  When you have a child with extreme fatigue, a lot of the anxiety comes from wondering what the future holds for them.  We still don't know.  But being presented with worst case scenarios is tough.  Stories of recovery are good!

3.  Suggesting alternative therapies that we should definitely try out.  I know this is a sensitive topic (so don't massacre me for it) but I've spoken to a number of friends who have either had a chronic illness themselves or had a child with a long-term illness, and this is a repeated bug-bear.  I'm kind of writing this for them too.

Why is it hard?  Because when you're already in the middle of doctor's visits, repeated blood tests and trips to emergency, it is exhausting and overwhelming just managing and trusting that process. Coping with people's well-meaning and heartfelt desire to find answers for you can be hard because when you say 'No, the treatment we're pursuing now is enough for us to cope with',  I have felt the implication then is that I'm not completely serious about getting my child well again.

I have found that medicine does not have all the answers and that's OK because sometimes there are things in life that we just don't know all the answers to.  I'm sure that in time if we feel that we need to investigate other treatments we will muster up the energy for it.

4.  Telling us all the time that it will be OK.  Of course we plan for it to be OK, we move forward as if it will be OK, but that's not where we're at now.  Now it just sucks.  That's all you have to say. 'This is horrible, I don't have the answers, but this is a shocker'.

2 comments:

Richard said...

Wow, I'll pray for all of you shortly .

Rachach said...

I love your honesty Jenny. And I'm so happy to hear that you've been supported (mostly) really well.
We'll keep praying.