Thursday, January 22, 2015

Repost: If I Knew Then....

I am re-posting this from 2 1/2 years ago because today it got published on The Mighty as part of their series If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?  Some great articles have been posted and I am just a little bit chuffed to be included.  

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If I knew then...

That Ashlea would need a kidney transplant.

That she would have multiple disabilities.

That our lives would never be the same.

Would we have done things differently?

I'm sad to say that we may indeed have done things differently.  If we had been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure we would have assumed that she would have no quality of life and we may have requested she not be resuscitated at birth.  Or if we had found out that information in the first few days of her life we may have decided to withdraw care and let 'nature take its course'.*

But we didn't know.  

Thank God we didn't know!

What we also didn't know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn't know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is.

That she would help us see what is really important in life.

That we would be OK with not getting the 'fairytale ending'.

What an eye opener it has been to live with Ashlea and her disabilities  We possibly would have made different choices if we had known - but we would have robbed ourselves of the joy and the delight that is Ashlea.  We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it - it wouldn't have helped because I WOULDN'T HAVE BELIEVED THEM.

Some things you have to learn by experience.

Thank God we didn't know.


* I know this is a hugely contentious issue but as a 570gm baby requiring full life support and in complete renal failure it was presented to us as an option.


(linking with Ellen Stumbo}

Sunday, January 18, 2015

Pick the twins

Who do you think looks most alike?


The ones that have the same genes?

The ones that have the same cheeky personality?

The ones that are the same size?


The girls had hair cuts today and now Emma and Ashlea are hair twins.  Sometimes I think they look more alike than my actual twins.  What do you think?


Monday, January 12, 2015

New Truths About Holidays

So we are home from our First Holiday Ever and it was FUN.

Yes I did have a freak out on the second day but after that it was all good.  Sometimes being single handedly responsible for our whole family causes me to flip out - especially when away from home and my usual sources of support or respite!

Aside from that the holiday was great and we thoroughly enjoyed it.

We did lots of swimming and lazing by the pool, we went fishing and kayaking and to the beach (I only do the beach once a year due to the degree of difficulty involved so I can cross that off the list until 2016 now).  I even had a massage and we went out for dinner for my birthday.













There is a teeny tiny fish on the end
of the line!

The Gorgeous Ones


I did learn some new holiday truths along the way:

* my friends who describe holidays as 'doing all the stuff you normally do at home with only half the resources' are right;
* I pack too much stuff;
* I'm not a big fan of fishing (too squeamish to get the bait on the line properly);
* It might be time to sign Ashlea up for swimming lessons;
* I think we need a pool;
* Holidays are fun and we need to do this again.  Anyone got any suggestions for our next venture?  

Thursday, January 8, 2015

The Beach

Aahhh... the beach.



So much fun.

So much hard work.

Once a year is enough :)

Wednesday, January 7, 2015

Wordless Wednesday

Emma is the queen of the underwater selfie

Thanks to everyone who responded to my post about holiday anxiety.  Thanks to everyone who prayed and hugs to those of you who also live with the anxiety monster.

Today we have had a very relaxing day just swimming and hanging out.

Swimming is just so relaxing.  I am becoming convinced that we NEED a pool....  Thoughts???

Joining up with Wordless Wednesday for the first time in ages.

Tuesday, January 6, 2015

Post Script to my earlier post

OK, so after my previous post I did the following.

Gave myself time out.

Phoned a friend.

Prayed.

Then made the effort to go do something fun.

It worked for which I am very thankful.

I would not want anyone reading this who suffers debilitating anxiety to think that this is all they have to do and they'll be cured.  Not at all.

This worked for me, today.

There are plenty of times when those things wouldn't even take the edge off.

But today they worked and I had a really enjoyable afternoon swimming and watching an outdoor movie with the fam.

And thank you to those who saw the post earlier and prayed.  I temporarily benched it as I didn't want it to get mailed out tonight without this update - I didn't want everyone freaking out when I was already feeling a lot better.  Hopefully now that I've had my 'moment' we will be fine for the rest of the week?

 Here's what we got up to this afternoon:











Anyone want to take a guess as to what I got for my birthday this year???

The truth about holidays...

The Truth About Holidays.  My truth about holidays….

The real reason we haven’t been on many holidays over the years isn’t because of the ‘degree of difficulty’ involved with Ashlea (and now Murray), or even because of the cost. It’s because I find them highly anxiety-inducing.

See the thing is – I have an anxiety disorder. A pretty rampant one. The only reason most people don’t know about the severity of it is because I work SO HARD to cover it up. And mostly I can cover it up.

Until I am taken out of my own environment.

Cue the panic.

So here we are on holidays and I am feeling so anxious today I can hardly function. I don’t want to tell the kids what is going on as I don’t want to trigger Emma’s anxiety. I think what makes me even more anxious now is that I can’t rely on Murray to take over looking after the kids if I need a break – not all three of them anyway.


Emma was dying to catch a fish.  Fish count: Emma 0 Audrey 2.

We did manage to go fishing this morning before I lost it. I think that was part of the problem – I started feeling really hot and low blood sugary / low blood pressure-y in the heat and then the thought of being away from home and sick (GAH – WORST NIGHTMARE) kicked in. At the moment I told the girls I just need a rest and have sent Murray to the pool with Emma and Audrey while Ashlea and I are chilling in our ‘cottage’ (as she likes to call it). Well, Ashlea is chilling. I am spiraling into crazy territory.

How can I stay here another week? I want to pack up and flee. Maybe Aunty Carolin could come up and take over and I’ll go home and have a week at home alone (to a panicking introvert that sounds VERY appealing).

I don’t know what the solution is to my anxiety. I have tried meds and mostly the side effects are so unpleasant that I can’t persist with them. I’ve tried therapy but in the moment of an anxiety attack I can’t think straight to use the techniques I’ve been taught. I hate it when I am forced to realize just how much my anxiety hinders my life. So many things that we do (or don’t do as is usually the case) are because of my anxiety. I hate how much control it has. But after trying to gain control of it for the better part of 40 years I realize I have made very little – if any – progress.

I am beyond frustrated that God allows me to continue suffering from anxiety. I am in my forties now – surely I should be over this? Why can’t he just take it away? Why won’t it just go away?? Surely it’s all in my head and I should just be able to stop it anyway???

I try to pray when I’m anxious. I know God listens and could take it away in an instant…and yet He doesn’t. I am assuming that means that somehow it will be for my eternal good and for His glory for me to go through this in the here and now. It’s kind of hard to believe that sometimes though.

I have so little faith that God will actually help me when I’m anxious that I’m going to have to rely on the prayers of others – all of you. Please pray that this anxiety would go away (and not recur or pop up in Emma) and that our family can enjoy this holiday.

WOW. That was a bit revealing wasn’t it? After a year of thankful posts that didn’t really give away a lot about me I may have now gone too far in the other direction.   Who cares.   I need your prayers.

Monday, January 5, 2015

In which we attempt a holiday...

Our first ever 'real' holiday.

EVER.


It started with us taking almost the entire contents of our house with us...

Sadly some jobs don't take a holiday

But the day ended here!

And here!!!
Tomorrow: Fishing (Emma's choice).

So much to be thankful for!

Thursday, January 1, 2015

Thankfulness Dec 31

Can you believe it is the end of 2014?

Today I am thanking God for:







I don't remember the fireworks looking so creepy in real life...


1193.  A year of being thankful.  I'm probably not going to keep posting my daily lists here in 2015 but I do plan to keep being thankful.  I am glad I was able to stick with it for a whole year - it has been a good discipline;

1194.  Fun at the Lord Mayor's Picnic this evening;

1195.   A good year for our family.  We have enjoyed good health and little drama and I'm looking forward to what is ahead in 2015.  I feel like for a long time our lives have been on hold - waiting for Ashlea's transplant, dealing with Murray's brain injury etc.  Now that things have stabilised it is time to think about LIVING.  I often feel like other people are living around us and we are standing still, not moving.  I think it's time to get moving.  I'm not quite sure what that will look like but I hope to at least live more deliberately, more in the moment, less fearfully.

Prov 16:9 
The heart of man plans his way, 
    but the Lord establishes his steps.

Tuesday, December 30, 2014

Thankfulness Dec 30

Today I am thanking God for:



1190.  An outing to see the sand sculptures;

1191.  A fun birthday present for me (yes I know it's a week early but I want to take it on holidays next week);

1192.  The girls getting to play Minecraft with their interstate friends.



Why does it always end in a sand bath???


Prov 16:9 
The heart of man plans his way, 
    but the Lord establishes his steps.