Overwhelmed by generosity and kindness of others this week'
A week which happened to be quite an exhausting one for our purple princess, once again too unwell for Physiotherapy, our session a demonstration of how best to assist Pipers
breathing,
the last bout of seizures today finally came to an end around
5:00pm, taking one and a half hours to gain control of seizures that reoccurred every three minutes, needless to say
we had quite an exhausted little girl on our hands this afternoon, so terribly disappointed when we've experienced quite a number of highs over the past couple of days, I keep telling myself to stop singing Pipers praises each time something positive occurs,
it's almost certain to be followed by a set back!
Although pipers tone has diminished she seems to be upset by pain and frustration which sounds horrible although really is quite good, its wonderful that Piper is acknowledging this discomfort.
Her little hands twitch as she focuses on her toys, these little arms and hands want to reach! the ability gone!
Although determination still shines through!
Little moans say hey! I want that! and the little twitches
in her hands suggest Piper remembers how to get there.
As I move Piper's head up I can see a little smile, as I tell her she's clever, I see the excitement in her eyes, her little head wobbles and flops forward, there
is no control! hands hang by her side, legs flop over the sides of the stroller as her head hangs down.
Some days it seems all is against us, after sleepless nights, seizures, suction, repositioning, medicating, it
all seems so completely unfair, days just seem harder through tired eyes!
My heart shattered when pipers sister Willow said she hadnt anyone to play with, when I suggested she play with Piper something flew out of her mouth that
left me speechless... she can't play! she can't even talk! and you never play with me, you're always too busy looking after Piper! I have nobody! Nobody to play with me!
This day I felt my walls start to crumble.
Willow so adoring
of Piper and such a wonderful little helper, and I'm just so tired, I know I find myself snapping at little Willow, I know the worry of one child perhaps makes me assume the other is less reliant, I know I expect way too much from my beautiful little girl,
I know I'm missing out on so much with her.
I wish I had the energy.
Without a thought I spoke the words.. I can't do this anymore! Without realising it had even been said! without fully understanding where it came from or why!
Willow asked what can't you do anymore mummy? I felt shocked, did I really just say that? My heart aches, I'm not courageous, I'm scared! I'm scared My baby girl will continue this state of regression, I'm scared the next seizure will take her
further away, I'm scared there will be a night I will fail to hear her choking on secretions fail to see she is not breathing, I'm scared to take my eyes off her and I'm scared my big girl will grow up thinking mummy did not have time for
me.
And then there are days where the sun shines through...
People walk into our lives and remain in our hearts forever,
For those Days we are reminded
we are not in this alone.
We have an entire community behind us! we have our little girl at home, we have hope for a better tomorrow! and much to be thankful for.
The world is not against us it's
merely a lesson we are yet to learn!