Monday, April 29, 2013

Eschew...

 
 
You know I often ponder "normal";
what is "normal" anyway?
Does it really, truly even exist?
My wee family is perfectly imperfectly normal
and crikey crivens we shun normal normal -
whatever that may be!
:)
 
 
 
 
 
 
 
 
 
 
 
 
 
and by the way, isn't eschew a fabulous word?
what are your favourite words?
my absolute favourite is
 
 
 
 
 

Monday, April 15, 2013

16 degrees



16 degrees and a day at RHSC:



 


16 degrees is all it took to make me feel as if I am not doing enough for Eilidh.  16 degrees of plantar flexion at her ankles; gastrocnemius stretches well when the knee is bent or flexed, but soleus, darn soleus, is so tight it could ping! when her knee is extended or straight.
 
So new AFO (ankle-foot-orthosis) it is - purple ones this time with butterflies and flowers; Eilidh is delighted so why is it that I don't feel that I am doing enough for her?  Because there isn't enough time in the day and her physiotherapy is one of the first things to suffer, leaving it up to nursery to do the necessary stretches on a daily basis, where they don't stretch her enough because she doesn't enjoy it if they do, where they don't understand the implications of not stretching her...  I don't know how I can make more time in my day and with E starting school this year it means that much more of the physiotherapy will have to be done at home, in the time that we, as a family, don't have.  It just makes me feel like such a rubbish mummy, trying to juggle work and home and the needs of my two gorgeous girls, one who happens to have additional needs.  And it makes me sad that I cannot do more to help her: I need more time in my day. - why is this not possible?

Same day, different department...  From orthotics we went on to see the respiratory physiotherapist as E has struggled a little more with her cough this past month, unable to expectorate or "cough-up" her phlegm (yuck!).  After a course of antibiotics she's better but still struggling in the morning, despite her blowing bubbles... 






We talked through how Eilidh has been and the physiotherapist listened to her chest, "all sounds good with lots of air entry".  I nodded in response, saying to myself "I know, I've listened already".  I felt a little silly for requesting the appointment, it was obvious she was on the mend but the reason why I was there was not that she needed treatment now but rather that we want to be better informed for the future; we want to know what to do when she's unwell.  Our community physiotherapist referred us some time ago because she felt we needed additional input and it took me phoning Dr Neuron directly to get an appointment.  We want to be proactive, not reactive and this is why; this is the SMA that scares me: a child struggling to breath and needing admitted and ventilated, spending nights in this hospital with other scared parents, hoping and praying that their little one is going to be ok.  I need to be armed with the knowledge and skills to prevent this from happening - if I need to do anything, this is what I need to do... I cannot be the parent in the hospital watching as the ventilator works.  I cannot be the parent in this hospital hoping and praying...

So, respiratory physiotherapist, do you see now?  Do you understand why I was there with my little girl with SMA?  Please don't make me feel as if I have wasted your time; this is very important to me because I am scared of losing my precious daughter too soon...







 

Friday, April 12, 2013

Rainbows

 
 
I saw a rainbow last week, a reflection of light, perfect and curved on my hallway floor, beginning and ending here at no.21. - within my home - and, you know what, in that moment I realised that there at the end of the rainbow, sat a pot of gold - my family, my gorgeous girls and my wonderful husband.  Who could ask for more?
 
 
I ventured out that day and found this rainbow in the subway, shining above the west end of Glasgow in all it's glory and I was reminded of my own rainbow at home and considered this: the simplest, sweetest, most beautiful things are often right there in front of us, well within our reach.
 
 
 








Tuesday, April 09, 2013

Dr's Review

 
 
 
 
 
 
 
 
 
 
Sometimes, no matter what, you need to keep on living; you just need to k.e.e.p o.n l.i.v.i.n.g.  Mad pills, my mad pills stabilise and provide a daily crutch for my busy and rather discombobulated life.  I have a very pragmatic attitude to taking them, after being brought to reason by my friendly, supportive doctor; which is just as well really as it's been nearly four years...  Four years - reallyI've been living with depression for four yearsWhere does the time go?
 
Ultimately, however, the mad pills, they do not change my circumstances, they do not alter the reality nor calm the storm within my mind.  Every so often my GP and I "meet" to talk about the day to day: the girls, D, work, my parents and family, and meThe ups and downs; no real change; just ticking along; living my life; breathing in and out.  In and out.
 
Breathing...  Living: it’s all I can do, trying to enjoy the moments; surviving the reality, the every day; striving for better days; finding gratitude in the littlest simplest things, for I am (and we are as a family) luckier than most and don't truly know what real hardship is, no matter how tough the day...  I just have to remind myself of this when times are tough and my mood is low...
 
 
 
 
 
 
If you want to know a little bit more about me - follow the pink links...  Grab a coffee and follow the story...
 
 
 

Monday, April 08, 2013

Salvation


 
Whether you believe or not, last week we celebrated Easter Sunday.  Perhaps you believe that He loves you wholly and truly, or perhaps you do not believe at all...  I'm not sure what I believe anymore.  I enrusted my children to him the moment they became a reality but have no idea what His plans are for my life.  Recently I was asked if I would consider going back to church - I haven't been since Eilidh's diagnosis apart from Christmas Eve with N and a visit to Hallgrimskirkja - and I paused for a moment, thinking to myself "what difference will it make, for goodness sake, what difference?".  I still don't know what difference it will make... 


No matter what or who you believe in, this is a glorious song of salvation and protection, perfect to share on any day (and not just Easter Sunday when I originally hoped to share it!). 












"You are the avalanche
One world away
My make believing
While I'm wide awake

Just a trick of light
To bring me back around again
Those wild eyes
A psychedelic silhouette

I never meant to fall for you but I
Was buried underneath and
All that I could see was white
My salvation
My, my
My salvation
My, my

You are the snowstorm
I'm purified
The darkest fairytale
In the dead of night

Let the band play out
As I'm making my way home again
Glorious we transcend
Into a psychedelic silhouette

I never meant to fall for you but I
Was buried underneath and
All that I could see was white
My salvation
My, my
My salvation
My, my
My salvation
My, my
My salvation
My, my"