2011 June - Aria MacDonald

Hello to everyone from New Zealand.

Aria’s service is tomorrow, Friday 1st July at 10am at St Andrews Presbyterian Church in Manurewa (150 Great South Road, parking available across the road behind the shops).

To those in another part of the country or the world, Aria’s service will be available for viewing on the internet HERE or on Aria’s Facebook page. (Thanks to Jono for sorting this out, you’re a champion).

Just a reminder if your coming to please wear purple, pink or orange-Aria’s fave colours.

Please know this will be a kid friendly service. We have a Kids Corner set up in the service were kids can colour a banner for Aria and draw pictures. This will be staffed with supervisors. Parents, your kids are welcome to help themselves to stickers and place them on Aria’s box towards the end of the service.

Please stay for refreshments and visit with us. Maybe there might be a lot of people, not sure. But please know we are approachable and wanting to talk, there just might be a queue.

Music. This church service will be different than normal and there will be singing. Those who know Jesus and are used to this please please please sing loud for us!!! Those who aren’t so used it just listen and enjoy, join in or not, it is ok to do whatever you want.

Dress- Hamish is wearing a tie and I am wearing a dress. Purple!! We want to do this for ourselves but beside our request of colour choices please wear what is comfortable.

Hope to see a bunch of you there and please record some thoughts or memories for us on the pieces of paper that will be available before and after the service.

Please pray for the day tomorrow that God will be glorified, His gospel preached and Aria’s life remembered for the amazing journey that it was and Aria as the amazing girl she was.

Also pray for our adjustment back to New Zealand and for our life here as it begins anew.

See you tomorrow.

Aria’s Celebration Service will be
10am Friday the 1st of July 2011
St Andrews Presbyterian Church 150 Great South Road Manurewa
Please wear purple, pink or orange-Aria’s fave colours.  Sorry to the blokes, you are going to have to be creative
If you can help with sound, videoing, slide show please contact Tony Bracefield.
Children- please know this will be a kid friendly service.  We have a Kids Corner set up in the service were kids can colour a banner for Aria and draw pictures.  This will be staffed with supervisors.  Parents, your kids are welcome to help themselves to stickers and place them on Aria’s box at the end (sorry not coping with the other words to describe this)

Please stay for refreshments and visit with us.  Maybe there might be a lot of people, not sure.  But please know we are approachable and wanting to talk, there just might be a queue.

Music.  This church service will be different than normal and there will be singing.  Those who know Jesus and are used to this please please please sing loud for us!!!  Those who aren’t so used it just listen and enjoy, join in or not, it is ok to do whatever you want.

Anyway wanting to share a memory, particularly US people, about Aria please email Peter Boyd petethepastor (at) hotmail(Dot)com. Once I have his permission I will post his email or search for him on Facebook.

Dress- Hamish is wearing a tie and I am wearing a dress.  Purple!!  We want to do this for ourselves but beside our request of colour choices please wear what is comfortable.  Smart casual, I guess, a phrase that isn’t used in the US we learnt!

Please pray for us and our family, our hearts are heavy and grieving.
Most of all- please come on Friday!  It would mean a lot.

Update:

Aria’s service will be streamed live on the internet for those unable to be there.
There is a link to the live stream (Ustream Live) on the left column of Aria’s Facebook page.

Aria’s Celebration Service will be

10am Friday the 1st of July 2011

St Andrews Presbyterian Church 150 Great South Road Manurewa

Please wear purple, pink or orange-Aria’s fave colours.  Sorry to the blokes, you are going to have to be creative!

More details to follow.

If you can help with sound, videoing, slide show please contact Tony Bracefield.

Thank you for all the comments and emails and outpouring of love.  We deeply appreciate it.

We are busy packing up in Omaha and preparing to say goodbye to our friends both the hospital and outside.

We are planning to bring Aria back to New Zealand.  Please pray for the logistics of this. We don’t have an idea of flights yet, we obviously want to be on the same flight as her but we are waiting for all the paper work to be started and completed.

Details for a service to celebrate her life will be announced in the next few days once we know when we will be returning home.

Our hearts are so raw and broken, I can’t begin to say.

For a while we have been praying that God would heal Aria or that he take her into  His arms for eternity. This morning God chose to take Aria into His arms. She passed peacefully in our arms, gone to be with the one who shed His blood to save her.

We are at peace with this, her five years of life has been one of hardships, struggles, pain, suffering and sorrow; yet we know that she has gone to a place where she need not be bothered by these things any longer.

Revelations 21:3-5 tell us this;

And I heard a loud voice from the throne saying, “Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

Today Aria escaped the drama of this earthly life where the ravages of sin took their toll on her, and she passed into the place where God is, perfect in every way, free at last.

Death, that enemy of all, has no power over Aria, for she is free of sin by the sacrifice of Christ. She is joined to Him in His victory over death and His resurrection.

We will long for the day when we see her again, perfect as God intended, and not perfectly broken as she was in this life.

In five years, one little girl has touched so many, and changed so many lives, including our own. God had a work for her to complete in this life and now she has completed it, and goes to the place where God will say to her “well done, my good and faithful servant”.

Things are still very fresh and raw for us and we have not begun to plan the days that will follow. Please pray for those plans, for us as a family and for those who wish they could be here for us.

We will let you all know when those plans have been made so you can join us in celebrating Aria’s life and the memory of her passing.

Two new tools are on the table today.  Dialysis and the Oscillator.

These were two things we were really hoping to avoid in Aria’s care and mark a decline in her health.

Dialysis is starting today to help pull fluid off her little body and allow her lungs to expand and work better.  It will only be successful if her blood pressures stay stable.

Her vent is on the highest settings and her gases aren’t good.  So far she is managing ok but it is an hour by hour thing.  We really really really don’t want her on the oscillator.  Like really really.  It is horrible.  So we pray she can avoid it.

The team believe these are reasonable measures and we are still working and hopeful that her life can be saved.  God can bless these tools even though we don’t want to use them.

We aren’t done fighting!  Aria isn’t done fighting although the battle is getting harder for her.

James 5:13-15

¹³ Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. ¹⁴ Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. ¹⁵ Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven

The pastor and an elder from GRC in Omaha can to pray over and anoint Aria yesterday.  Such an amazing and blessed time of prayer as we begged God for her life.  We were so deeply grateful they came to pray and lend us their hearts and voices to seek our God.

Please keep praying for us!  Please storm the heavens and seek God’s intercession in Aria’s life.  He can totally heal her!

The words of this post have changed so many times in my head.

Yesterday was a dreadful day.  Aria had yet another episode.  These episodes are scary and we know that they can mark the beginning of the end.  Once we stop being able to maintain her blood pressure and keep oxygen in her lungs and her little heart beating then the outcome of that is obvious.

You need to know we are struggling with this blog currently.  These are dark days.  Our previous dark days, when her first transplant failed and we waited for another round of funding, were not written about on this blog.  There was a sense of relief in that.  Honestly I don’t know what to say or how to say it.  I don’t want to be negative but I don’t want to give the impression that these are rosey times because misunderstanding hurts.

What happened yesterday is really horrible and I can’t bring myself to give details.  But I wish I could  because by understanding details you will know Aria is a fighter and a miracle occurred and the team is relieved.  But you will just have to take my word for it.

Aria can’t seem to get over the hump.  Like a speed bump she gets to the top and just can’t seem to make it over.  Her vent settings are really high (which before Tuesday were pretty low) and perhaps she is heading backwards.

Please keep praying for her, of course I know you will, thank you.  She needs to beat this infection.  Her bone marrow needs to recover.  We need to stop feeling like we are losing her, it is crushing, I don’t know how much more I can take.  God knows and is ministering to our souls.  He is not ready to take her, not today, we are pleading He doesn’t, not yet, not this way.

Aria continues to hang in there with this current infection. Not getting worse but not making much progress. Each day we hope to see a leap forward in her condition and each day we feel a sense of disappointment when we don’t. We would really appreciate your prayers for the two big issues with Aria at the moment, one for the short term, and one for the long term.

Firstly we would really like you to pray for her fluid status and getting off the ventilator. We are somewhat stalled at the moment in the process of getting off the vent with Aria carrying about 3.5kgs (7.7lbs) of extra fluid in her body. This fluid, especially around the lungs hampers Aria’s ability to breathe well and to properly oxygenate her blood and clear carbon dioxide from her body. We would dearly love for Aria to be off the vent again before Nana leaves next week, we think they would both really love that.

Secondly we really need prayer for the return to normal function of her bone marrow. She really needs this to get over this current infection and to have a good quality of life going forward. So far human means have shown little result, but we know the God of all creation can work outside these regular means, easy peasy as the kids would say.

Thanks to you all who support us with prayers, constantly keeping Aria before our Lord and Saviour.

Aria is in the NZ Woman’s Day this week if you are interested

Monday.  New week, new team.  Well same team just different bosses of said teams 😉

Aria hasn’t made much progress over the weekend.  On Thursday it seemed like madness that she would still be on the vent on Monday.  But Monday is here and she is still on.

The main issue is her fluid status.  Still lots of fluid on her.  But she is peeing great and responding well to the meds.

Unfortunately she has been spiking low grade fevers.  And the cultures from 4 days ago came back positive on the 5th day.  This is unusual but it does mean the bug is weak and at a low count.  But it would be nice to get clear cultures soon.  They were taken the day her line was pulled so we are hoping things have cleared but the fevers don’t seem to suggest that.

Saturday was a difficult day.  She was crying a bit which was really hard to watch.  Her little face would crumple up and her vent would alarm as she held her breath.  Obviously you can’t hear her but her little eyes looked so sad.

Today I decided to go in with my listening ears on and my believing heart ready.  The message loud and clear from everyone is ‘don’t worry, she will get thru this’  ‘you can’t see cause you are here everyday but she is improving’ etc etc.  No one is saying Aria is in trouble or she won’t pull thru.  Yes she is in a tight spot for sure but she is a fighter and her little body is fighting.  What with is the question cause she has no immune system!  God’s power is at work within her.

There is just so much sadness, like a heavy wet blanket wrapped around me that I just want to shake off.  I miss my girl!

Ephesians 2:8-10
The New Living Translation

⁸ God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. ⁹ Salvation is not a reward for the good things we have done, so none of us can boast about it. ¹⁰ For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

Let me start off by saying thank you for all the beautiful comments, encouragement and for the compliments on our faith and perseverance and parenting.  We really do appreciate them a lot.  But I just want to set the record straight on a few things.

We hear ‘you guys have such a great faith’ or ‘we are so glad you guys have your faith’ a lot.  It is true, we do have a great faith, but let me share with you, at least from my perspective, where it came from.

My childhood was spent attending a Christian school,  attending Girls brigade, attending church and sunday school.  I was deeply immersed in all things Christian.  I learnt a lot about the bible.  I memorised it.  I read it.  I sang it.  I knew it.  I am ashamed to say I was far to proud growing up about how much ‘bible stuff’ I knew.  But alas, I was given a great gift and so was Hamish.  I knew I was a far from perfect and in need of a saviour and that was Jesus.

I was also surrounded by people of faith in my church.  People who believed the bible was the word of God and lived it out.  I saw God provide.  I saw people having faith that God would provide.  People invested in me, although at the time I took it all for granted.  I am fairly sure my youth pastor spent most of the 1990s with a headache.   Talking to the stubborn and hurting teenage version of me would no doubt cause one to bang their head against a wall.

Once I got thru the angst of being a teenager I got to know my best friend better and we got married.  God was starting to turn that head knowledge around and make it heart knowledge.  But I was a comfortable Christian.  And in my opinion comfortable Christians don’t really make radical faith inspiring Christians at least not in my case!

So we were given another gift.  Aria MacDonald turned up and life got amazing and very uncomfortable.  In those early dark days all that head knowledge turned into a real deep reassurance of life eternal and that God was good and worthy of our complete trust and devotion.  God was and is very much at work taking our broken hearts and turning them into hopeful hearts.  He gave Hamish and I the same heart of faith- another gift. We know without a shadow of a doubt Aria and ourselves are heaven bound because of what Jesus did.

I am a control freak, micro manager who thinks she knows better than God and just wants to live a comfortable life.  God has taken that and made me trust in Him.  There are many days I want to pack it all in and trust in myself.  But I don’t cause God holds on tighter than I.

So my faith is a gift, a gift freely available to anyone and everyone who wants it.

John 3:16 ¹⁶ “For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life.

Yes I have a lot of bible knowledge but it is not just a book, it is a book that can be read and understood and it’s message is Jesus, God’s son, the saviour of the world.

Finally, thank you to the people who invested in me, teachers, friends, youth group/GB leaders, pastors, and extended family. Thanks also to the people currently investing in us here in Omaha and via prayer and encouragement in NZ and other places.   I don’t have permission to share their names on the internet but thanks to, among many, Mr T, A.Y and to P.B- I owe you a couple of packs of panadol!