Tuesday, July 30, 2013

Writing Prompt: A Prayer for My Child

Sitting by Ashlea's crib in the NICU I could barely pray.  I could hardly speak or think let alone pray.  I had no words to express the horror of watching her cling to life by a thread (teeter on the brink I think were her doctor's exact words).

When words of prayer did come they were pretty basic.

Please God,
LET ME KEEP HER.

Thankfully He did let me keep her.  What a joy and delight she is and how thankful I am.


Over the years my prayers for her have changed.

In the early days of disability it was:

Please God let her walk and talk and eat sandwiches (my measure of severity of disability - if you can walk and talk and eat then you're not doing too badly).

Nowadays I don't care so much about those things.  Don't get me wrong I'm very glad that she can talk and that she has taken some independent steps, but walking and talking aren't what give your life meaning.  It's love.  Ashlea loves and is loved - that's enough.


My prayer is now prayed with Ashlea at bedtime.

She is the one who prays (which is in itself an answer to prayer) and it usually goes something like this:

Dear God 
Thank you for (insert name of whatever toy is favourite that day - eg Thank you for Tom)
Thank you for (insert random event of the day - eg thank you for swinging) 

Thank you for (insert reminder of something she wants me to do - eg thank you that you are going to get me a pink party rocker furby) 

Thank you for Jesus.
Thank you for heaven one day.

She gets to the important bits eventually :)

What more is there to say than that?

Thank you for Jesus and thank you for heaven one day.

Amen and AMEN.



{Writing Prompt}

Thursday, July 25, 2013

Thankful Thursday - 25th July

This week I am thankful for...

- a quiet week with very few appointments - including one ENTIRELY appointment free day;

- the therapeutic benefits of baking - it has overtaken tidying as my therapy of choice;

This week I have enjoyed raisin bread, banana bread, apple tea cake,
and chocolate cake to name but a few...

 - no late notes despite this being Ashlea at 8:15 on most school mornings;



- a win for Emma with a credit certificate in both the Science and Computer competitions at school;

- Peppa Pig tickets secured - well I think so anyway.  To get the accessible seating we had to do a special booking - I have not yet received confirmation we actually have tickets but my credit card appears to have been debited so here's hoping.  Now - how hard do you think it would be to get to meet Peppa? The concert itself is likely to freak Ashlea out but she is a HUGE Peppa fan and would love to meet Peppa to give her a cuddle.  Any ideas?

 - a new home found for Ashlea's first walker.  I have decided to donate it to Blair's Wish - a charity that finds equipment for children with special needs.  In theory I could sell it but people have been so overwhelmingly generous to us that I just can't sell it.  I hope everyone from our old church who raised the money for it are happy with this (let me know if you aren't!).  Ashlea has outgrown it developmentally and physically and it is such a shame for it to sit and gather dust when there are other families who could use it;

First Walker - approx cost $5K - would love it to help another family
who need one but can't afford it - just as we were helped when our Gladesville
church family bought it for us.


- Ashlea's new Second Skin suit.  The photos aren't great but they give you an idea of what it is like.  It is supposed to help her posture and balance as it forces her to use the correct muscles for sitting and walking rather than relying on her increased tone;

If anyone wonders why we need an NDIS see above cost for
walking frame plus this suit that cost $2K.

Yes it has ducks on it - pink ducks


Thankful Thursday

Sunday, July 21, 2013

Remembering

Audrey and I went back to the NICU for a visit last week.

As it was quiet in the nursery I was able to take her in and show her a tiny 900gm baby so she could get an idea of just how little she was.  It was amazing to see Audrey standing beside the humidicrib of such a tiny baby.  When she was still in the nursery we would see older children arriving back for follow up visits and wish we could fast forward to that point - to the point where we could look back and see it had all turned out OK.  How has it been seven years and now - in what seems like the blink of an eye - Audrey is having one of her last ever follow up visits?

We were also able to go and stand beside Ashlea's old spot in the nursery - bed 2 - the scene of so much drama.  Just walking over to her bed brought back a flood of memories and emotion. It's kind of strange that it's not traumatic for me to go back there.  Emotional yes, but not traumatic.  Even though traumatic things happened there I mostly remember the nursery as a safe place.  The place where my babies were kept safe.  The place where they were kept alive.

We were able to catch up with some of the doctors and nurses from our time there which was lovely.  Funnily enough the nurse who was looking after Ashlea on 'that day' was there.  It was lovely to see him.  He still remembers that day too so it was lovely to be able to show him  - and everyone we saw - the video of Ashlea walking.

It's funny how as a NICU parent there is stuff I just know.  Just by looking around I could tell which baby was the sickest.  I tried not to look, not to get emotionally involved in their story but I haven't stopped thinking about them since.  I know what it is like to be the parent of the sickest baby on the unit.  I know that worry and fear, that horror of not knowing if your baby is going to make it through the next day or even the next hour.  I know things that I can't un-know.

I don't know why I still feel such a connection to the nursery all these years on, but I do.  It is an amazing place staffed with amazing nurses and doctors and I am so thankful for the work they do there.  I almost feel like it is sacred ground in there.  Tiny lives hang in the balance, dreams blossom and are shattered, parents made and broken.  It's hard to put into words what an incredible place it is.

Indulge me while I repost this clip of my twins nursery journey - the first half of the video is Audrey, the second half is Ashlea.  Sorry it's long but I really like this song and didn't want to chop it up!






Thursday, July 18, 2013

Thankful Thursday July 18

The last couple of weeks I have been feeling rather overwhelmed and not very thankful - which makes it all the more important to try and stop at least once a week to see the many things I do have to be thankful for.

This week they include:

- my bible study group for listening to my vent about my lack of thankfulness;

- dinner and Abba Singstar with a lovely friend;

- friends who don't shy away from speaking the truth in love;

- finding the perfect Christmas present for Ashlea - and lest you think I am being hasty hunting down Christmas presents in July a certain little duck has already told me to call AND text Santa to tell him she wants a Talking Tom Cat and a Cuckoo Clock for Christmas;

It's a Cuckoo Clock with a duck inside - surely it will be a winner!?

- a timely developmental assessment for Audrey (more on that another day);

- a nice first session in the cricket for the Aussies;

- and of course the swing!  The Long Awaited Swing!

It ended up being the most expensive swingset known to mankind
but she LOVES it so it's all worth it!


- of course we are not so thankful about what happens when it is time to come inside - but at least it shows how much she loves the swing - and for that we are thankful;




Thursday, July 11, 2013

Thankful Thursday: 11th July

Today I am thankful for:

- swing construction under way;



- an OT with a few blocks of foam to help Ashlea climb in and out of the car so I don't have to lift her as much (that's the short version of the story - in the process of working this out we may have removed and then had to put back all the child restraints AND seats from the car);

- another fun day of Minecraft for Emma (otherwise known as a day of respite for me);

- cinnamon scrolls;




- a visit from an old friend;

- a quiet day at home (aside from the car seat madness);

- my little duck who continues to do amazing things.  I put this video on Facebook the other day but it's too good not to share again.  Did you count those steps? Who'd have thought?  






Thankful Thursday

Monday, July 8, 2013

The Way Things Are...

I have spent the last year since Murray's brain injury adjusting to 'the way things are'.  Once again I have had to adapt to a new normal.

For the most part I have just gotten on with things.  I cope because that's what I do - I'm a coper.  I get through the day, my kids get to school, they get fed, do their homework - everything gets done (more or less).

After some encouragement I recently went to see a psychologist.  I'm not an overly enthusiastic patient as I really don't see how it will help that much.  Is she going to come and live my life for me?  Is she going to parent my children?  Or better still mind them so I can get some respite?? Unlikely.

Anyway I went along and had to do one of those tick a box questionares to check for depression and anxiety. I filled it out on a fairly typical day.  Not a day when I was feeling particularly stressed or overwhelmed by things - just an ordinary day.  A regular, typical, feeling OK kind of day.

Anyone want to guess my scores?

On any ordinary day in the new normal apparently I score moderately for depression, severe for stress and extreme for anxiety.

And that's a good day.

The question that obviously comes out of this is - how do I do this long term?  How do I keep coping, keep getting everything done that needs to get done - for the next 5, 10, 15, whatever years?

How do I keep doing it AND be happy?  How do I do it and not score at all for depression or stress or anxiety?  Or is that not even possible?

For those of you who are also in it 'for the long haul' how do you do it?  Do you have a strategy? A plan for the long term?  Until now my plan has been just to take it one day at a time - maybe now is the time to start thinking about how to do that when all those one at a time days run endlessly into each other.

Thursday, July 4, 2013

Thankful Thursday - 4th July

This week I am thankful for:

- school holidays;

- Lego to keep us occupied on a rainy day;

I'm a bit sad that my kids are now old enough to build their own lego.
Do you think it would be OK to buy myself some?

- that the rain stopped and the sun came out for the school holidays;

- Emma went to (in spite of anxiety) and LOVED her minecraft music video making workshop;


- the peace and quiet that having the loudest child occupied at a workshop all day brought;

- another workshop booked for another day of peace and quiet;

- a visit to the Powerhouse Museum and Wild Life World just with my twins;

Powerhouse Museum

I don't know if the Japanese tourists were more excited
to see a butterfly or a butterfly on a cute
blond haired child...

ABC Duck had to meet the real ducks...

- the hospital that kept my babies alive at birth - and the chance to give back a little by helping the current crop of doctors prepare for their exams;

- a school friend over to play with Ashlea and a chance to get to know another 'mum who gets it';

- a swing delivered and a handyman booked to come and put it together (so exciting - I'm hoping I'll be able to show you photos of Ashlea in her swing next Thankful Thursday - it's been a long time coming);

- warm sunshiney days in the middle of winter.

Thankful Thursday