Sunday, 6 January 2013

At last I've seen the light

The other day we took the family to the pool. Just one of those spur of the moment things 'We've got nothing else to do this afternoon, why not go to the pool?'. Of course, as I mentioned in my last post,  nothing is ever that simple. In the back of my head the thought that it was great physio for my big girl was floating about.

We arrived and the girls began splashing about, swimming, diving, enjoying the fountain, introducing themselves to random strangers and making friends. None of my three girls are the shy and retiring type. To our delight, one family they introduced themselves to wasn't a complete stranger, but a mother and her girls who also attend our school. 'Wonderful' hubby and I thought, someone for use to chat to while the kids play.

After catching up and talking small talk, the mum tells me about how her eldest was recently diagnosed with a bone condition. Nothing too severe but still needing regular check ups and monitoring. The thing that the mum said which stood out to me was 'In the scheme of things, its not that bad. Other people have it much worse.'

If we were to look at it on a comparative scale, maybe that is the case. We certainly have more Drs and specialist visits, long term medication, life long implication, no cure or recovery. But then others have it 'worse' than us. Even more Drs, even more appointments, serious financial hardship. Terminal diagnosis.

I have to admit I am certainly guilty of visiting with friends, friends who are close and dear to me, and comparing how their children are progressing and developing to my big girl. I love my friends dearly but I see how their child is achieving at school, how they interact with their peers and parents, how they don't get frustrated because they can't make their body do what they want it to. Let's be honest, it hurts like hell. I go home and cry.

After I've had my cry I remember that it's not better, or worse, it's different. The mum at the pool had just as much right to worry about her daughter as I did. She had every right to feel that fear in the pit of her stomach when the doctor gave her a diagnosis she didn't fully understand at the time. Why shouldn't she feel the room spin as she thought about how it was going to impact on her daughter's life?

I am glad that my daughter has taught me to see things in a new light. Not better than, not worse than. Different. Comparative studies don't do you any help. I am certain that before my daughter I looked at people with a disability and thanked God that it wasn't me. I looked at families who had a child with a diagnosis and prayed that wouldn't be me. I didn't want life to be hard. I didn't want my life 'worse' than others. I am glad that my daughter has shown me what 'different' really means.

On the drive home from the pool we had the Tangled soundtrack playing in the car (as we always seem to do. Where did my music go?). My middle daughter's favourite song came on "I see the light". It struck a chord. Lines like:
 'All at once everything looks different, now that I see you'.
'All that time never even knowing, just how blind I've been'
'All that time never truly seeing, things, the way they were'

From the moment I laid eyes on my daughter, everything looked different. Not worse, just different.

Picture from:

PS: The practical thing that came from my conversation with the mum at the pool was I was able to tell her about the Enhanced Primary Carer's Fund - Read about it here.
Also the Patient Travel Subsidy Scheme for those living in regional  Qld areas and have to travel to see specialists. I'm sure other states would have something similar. Read about it here.

Why is it that this information is so hard to find? >:(  We need to share more as parents. We need to create our support networks.

Please feel free to comment or email me if I can be of any help. I'm hoping that this blog will become  interactive! Suggestions welcome!

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