Hope Love Cure

Through tired eyes
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!


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Sue Watson | Reply 30.10.2013 08:52

Summer and Michael.... Stay strong and you will go on and raise two beautiful daughters because you can... Some days will be the pits, others will be easier....

Skye Sparkes | Reply 18.10.2013 00:08

Sum & Mick you are both doing an amazing job, I'm lucky enough that I see how truly amazing you are first hand and you inspire me every single day. xxxx

Bec Hawson | Reply 17.10.2013 18:07

You are an amazing and resilient mum to 2 beautiful children. What a brave person to admit when you have a down moment not many do. Sending love a warm thoughts

Lauren Cleary | Reply 17.10.2013 14:52

You are the strongest person I've ever met Summer...don't doubt your strength....you are truly an inspiration. Every parent snaps and you are only human! Xxxx

Fiona Black | Reply 17.10.2013 13:30

Sum you are so close to super human its not funny. Don't be your own worst enemy, your ability to even function is so admirable. You are their wonder woman. XXX

Zoe Black | Reply 17.10.2013 13:27

All my wishes go to you Piper and your family. I really hope you get better and everything gets easier.
Lots and Lots of love. Zoe

Steph Black | Reply 17.10.2013 13:21

You are all so brave going through this, you all are doing a great job. I really do hope Piper feels a lot better.
Love Steph Black

Piña morello | Reply 17.10.2013 12:34

You are such a strong amazing mother x

Courtney | Reply 17.10.2013 11:42

This made my eyes tear up. I'm always reading your posts and you are truly an amazing mother. Thinking of u and your beautiful family often xo

Barb | Reply 17.10.2013 11:04

For every moment when you think I can't do this you can look back and think 1000 times over yes I can and I do. Sometimes even super people are human. Much love

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Latest comments

11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief

07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

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