Monday, 20 May 2013

What's stealing your joy?

 Life is a funny old thing.

It is easy to become lost in the busyness of it all, that somehow we wake up one day, and the joy that once resided in us, seems lost, and i want to tell you it's not ok. I pray you find a way to get your joy back.

There are so many aspects to happiness, but key in it all is true contentment. Being content NOW, with whatever is going on in our life.
I think we have a warped sense of entitlement when it comes to how life should pan out for us.. and when it isn't going so well, we get down about it.

We have just spent a week in ward 27b in Starship. This is the oncology / haemotology ward for children.

There are teens there trying to cope with the seriousness of a diagnosis of cancer. There are parents trying to hold it together. There are babies, and toddlers hooked up to chemo, and when they are well enough, they wander in to the playroom, drips and all.
What i see there - are seasons of trials for families, at different stages, staring death in the face at times.

But what i see above all else... is hope.

I see the gentle precious love of parents, taking in each moment of joy, laughing when they can, making the very best, of a situation none would wish to be in. Something we have taken on board. There is no such thing as 'make up' time, you need to make the most of the day you are given - today.
Really love the ones you love, and spend time with them doing things together, with little kids it can be hard to do something 'everyone' enjoys.

By everyone - i mean all the children in the family... i found it hard to go to the skate park with my kids when they were little (with all those teenagers on skateboards looking cool) - my husband on the other hand was in his element... but, now i get so much joy hanging out with them, watching them scoot around, and when i am not pregnant, i even scoot myself!
My husband would never have thought himself as someone who could paint cool designs on his daughters nails, nor do i think he would have found that 'fun' - and yet the look on his face when he sees his little girls eyes light up is priceless.

Joy is found not only in the things we know we enjoy, but in sacrificing our pride, and stepping outside our 'comfort zone' (in the little things) for the joy of someone else.

Some 'little' things we find joy in and do a lot:

* sucking the kids hair in to the vaccum cleaner to make cool 'dos' (such fun!)
* build lego houses
* visit skate park/ petting zoo/ beach/ basin or playground
* go to a cafe/ restaurant as a family
* always eat dinner together at the table
*dress the kids up in matching outfits (ok maybe this is just my thing) and get nice family photos - or awful ones    that we laugh about later on!
* bake
* Go carting down our own little 'home made' go cart track
* face painting (and prego belly painting at the moment)
* toasting marshmallows on the patio heater
* the neighbours kiddies come over and they all dress up and do a show that they make up among themselves.
* dance
*My husband plays the uke and we all sing along to our favorite songs

I am sure there are other things too, but without a little bit of effort, and taking the time to just stop, and be with the children, the day would be gone, and our potential moments of joy would be over. It is not always easy, but we have found that with the stress of IV access and now port access, with trips to hospital, and times away, we need to choose to embrace the times of joy, however small they may seem.

Lord, i am thankful for the times of health, and the moments of joy. I am thankful also for the journey we are on, and for the people who walk it with us,  for in it, we too have hope.

Saturday, 18 May 2013

Johns' port, the where's and the why's

We have returned!

 A week away in Auckland Starship hospital where John needed a port insertion.. pics below (not of John) to indicate what i am on about..


That metal thing above,  is a port, it has a tube going off it that is fed into a main vein, so that his medication can be injected by a special port needle (see diag) .

This is needed because he developed inhibitors to the factor VIII replacement factor we were using to prevent bleeding internally, and to stop bleeds when they occurred. Basically meaning his medication was no longer working because his body was building up anti bodies against it.

So for the last few months he has been going without prophylaxis (preventative) treatment, and has been treated on demand (when a bleed occurs internally) with a medicine that only works for 2 hrs in stopping bleeding.

So - from this point onwards he will be having 1000iu of Kogenate FS (the medicine his body is rejecting) every Monday, Wednesday, and Friday. We will need to access the port each time on these days, and we  hope and pray that he does not find this too traumatic.

The idea is that by giving him high (ish) doses of the medicine he is building antibodies against, his body will eventually just give up trying to fight it, and thus, the inhibitor will go away (for good - we hope)

This treatment does mean that he will need to remain on regular doses of Kogenate FS - even after the inhibitor goes, for the rest of his life, to prevent the inhibitor returning.

Our office is now full of medical supplies, so we can do home treatment safely, and lower all chances of infection as much as possible. STERILE, STERILE, STERILE. That's our motto!!

Any way - here is the man himself after port surgery - His attitude to the whole thing astounds us! He is running about as though nothing has happened, eating and drinking normally (as you can see from his shirt!) and other than being a bit tender at port site and on neck (where tubing is put in to vein) he is his usual lovely,  "i do it myself" little man!

 Blessed are we to have him in our lives (just as we are his siblings). We are proud, and we are thankful.
God is good in all things, and we have been feeling so blessed by our friends who cooked dinner for our return, who put fresh orchids in the window, who got in fresh fruit and veges, who also gave us a cake and muffins, and stocked up on milk and bread, plus abundance of delicious teas and coffees, so that when we did arrive home, no rushed shopping needed to be done. And no quick yucky takeaway dinner -  I am greatly thankful and humbled by the hearts of our friends. Hearts of kindness, love, and of Christ.  
We are also thankful for the surgeons, the doctors, the nurses the medicine, the plan. We are thankful to Ronald Mc Donald house where we stayed after Johns surgery with him, without that house, we would have been lost.
Yes, thankful just about cuts it.

Thanks guys!