My daughter said a lovely thing the other day.
Not a grand proclamation of love, not a universal message
of kindness and friendship and not even an announcement that she was doing her
homework unprompted. (Although to be fair to her, she does do two thirds of
these things; we’re working on the homework.)
No, it was: “Mummy, sometimes I forget you have MS.”
It was such a simple sentence, but such a great thing to
hear.
Not because I want her to live in denial, not because she
thinks I’ve got better, not because I hide it from her, but because I want her
to be able to forget. If not all of the time, then certainly sometimes.
I want her to know that although MS is there, it
won’t take her over. That my illness has never been her world, her
responsibility or her fault.
It’s not easy. She’s a thoughtful and sensitive child who
is very conscious of other peoples’ emotions. Who knows if she always would
have been this way or if growing up with MS has made her more empathetic.
It is incredibly difficult for a child to grow up with a
parent affected by any sort of ill health. A parent who cannot always be
consistent, a parent whose future is uncertain, a parent who might appear to be
leaving you bit by bit, day by day.
That’s a pretty hard mix to get to grips with as an adult
– almost impossible to imagine how it must be for a child.
What we’ve found helps as a family are these simple
things:
* honesty – our daughter knows that mummy’s body doesn’t
always work properly, that she might need to take sudden rests, that she takes
medicine, that sometimes she has to miss things. Age-appropriate honesty and
open conversations can help stop or lessen some of the imaginary fears.
* attitude – having limits is nothing to be ashamed of,
we all have them in varying ways. But recognising and readjusting your limits
then carrying on with pride and confidence is a really good message.
* planning – children need to feel there is always
someone there for them. If I can’t do a school pick up or party drop-off then
we ensure a family member or friend can. It may not stop the worry that I’m not
able to do it, but it eases the uncertainty a bit.
* appreciation – being able to live in the moment is
something kids can do really well. I’ve learned a lot from her on this and we
often talk about all the things we are grateful for. A friend has a daily
positives blog which does this fantastically well and it really makes a
difference to your mindset.
* love – she will never be short on this.
I know my daughter worries about me, I know she probably
always will. But just for the moment, I’m glad she’s able to forget.
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