News - Aria MacDonald

Aria’s story aired on TV One last Sunday. It included updated footage of us back in NZ after her passing. NZ residents can watch HERE

Growing up in a church I have learnt that at Christmas time you pray for the people that have lost loved ones. This year, I understand and appreciate that prayer on a deeper level than ever before.

The lead up to Christmas has been really hard for our family. The whole world seems to sing about how wonderful Christmas time is and how it is the best time of the year. We feel empty and broken and that can’t be fixed with sing song Christmas carols about snow (always weird in summer time!) or excessive amounts of food and presents.

We have felt a real sense of burden for those, ourselves included, whose Christmas time is not the wonderful time we are told it should be. There are many reasons why Christmas time can be tough, lack of money, lack of family, lack of meaningful rest. For some the trials of life simply do not stop because it is the 25th of December.

Personally I felt burdened by the long list of things I felt I needed to accomplish for Christmas day to make it special. Food, presents brought etc etc. I guess for the first time I have had the ‘freedom’ to easily access a supermarket without blizzards or co-ordinating Aria’s hospital care. Yet I did not feel free.

Our Christmas day started in the wee small hours of the morning with me being fairly sick with stomach cramps. I obviously won’t go into details, for your sakes, but it was likely pregnancy/anxiety related. However, thankfully, the idea of cooking and consuming christmas lunch was enough to put me back on the bathroom floor. So Hamish and Asher, who couldn’t care less about the lack of roast lamb, had scrambled eggs for Christmas lunch! Perfect.

As it turned out Asher also couldn’t have cared less about the pile of presents under the Christmas when he woke up. Around 10am he vaguely motioned to one of his stockings which we let him open and then didn’t mention them again until Nana and Poppa arrived in the evening. Again, quite a surprise. Despite it being his birthday less than 3 weeks ago he had managed to compile an impressive list of new presents he wanted. Argh- despite many lectures about how privileged he was and how some people don’t get presents at Christmas time and how Jesus is the real present he didn’t seemed discouraged from his ‘I-wants’

So until about 6pm on Christmas day it was a foodless and presentless day. Asher declared it was the best Christmas ever and Hamish and I felt a huge sense of peace. Oddly the grief of Aria’s missing presence countered by this peace. How everyday must be like Christmas in heaven for her. We never could of provided that for her. Last Christmas she was greatly troubled by breathing issues and the previous one to that she was dying of liver disease. Aria is free from the earthly body that let her down!

We enjoyed Christmas evening with our family. There was food and laughter and yes, presents. But they had been redeemed knowing we could of gone without them and God would of filled us with all we needed.

Our brokenness for Aria’s passing can never be fixed with stuff or things. It can however be healed and soothed by relationship with God and others. We were so thankful to God for His peace and knowledge He too lost a child, willingly for our sake so that we might live in heaven with Him. We were thankful to the people who emailed, text, called and remembered our pain on Christmas Day and before and after. Thank you!

Ooops- forgot to say Nicoleena is Asher’s made up name for the baby, it wasn’t based on any knowledge of gender

Recently I have felt a sense of progress in our life. We are now past that horrible raw crazy grief yuck. Yes- I know- very well expressed by me. Honestly, never in my life have I thought I was going crazy until that period in my life. But hey- we just lost our 5 year old daughter, it is to be expected.

For a time I felt like I could see a little light at the end of the tunnel, it was exciting and encouraging. It is still there but events of recent weeks definitely caused it to be blocked out for a time. Setbacks I guess are just part of life. I wonder if I got too complacent. I remember thinking at a couple of church services I went to that I didn’t cry or even need to bite my lip hard to distract myself. I was so pleased. What do you know? Nek minnit (kiwi joke-sorry US people) bawling at church on Sunday and not that discreet damp eyes, little sniffs crying either. Sigh.

Yesterday, while hunting for some christmas decorations we brought back from Omaha, I opened Aria’s suitcase from Omaha. Most of her stuff is used by Asher except her clothes. Almost the right size for him but totally the wrong colour. What are we supposed to do with them? No clues or ideas. We brought some summer clothes for her which went unworn, thankfully I could give those away because they didn’t hold any emotion. But all her other clothes do, particularly her hospital gowns, which she loved and lived in (even at home, see pic).

Anyway. If you have a moment you can watch this video from Asher. There is some news in there that is exciting and hopeful.

Ooops- forgot to say Nicoleena is Asher’s made up name for the baby, it wasn’t based on any knowledge of gender

It seems like everything we have done since Aria died is somewhat of a mission. Every new thing we take on, each step we take back towards ‘normality’ seems like a step further away from the life we had with Aria.

Moving into a permanent house = hard.

Starting back at work = hard.

Getting going on resuming my studies = hard.

The latest challenge, going back to preaching = hard.

While I am really looking forward to preaching again after a couple of years of not being able to, it is another step towards our new life.

I know that God has this life prepared for us, and that all we have been through with Aria is now part of us and will be used by God, but it is hard not to have Aria with us anymore. We want to honour her memory and cherish the part she has in our lives but it is hard to find the best way to do that and to carry her with us in a positive way.

Until such time as we find that way, we will keep on moving on the best we can, trusting God to make the path forward clear.

Psalm 30:11-12

New International Version (NIV)

¹¹ You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
¹² that my heart may sing your praises and not be silent.
LORD my God, I will praise you forever.

I remember reading the bible when I was a kid and learning about people in biblical times sitting around dressed in sackcloth and putting ashes on their heads.  As a kid I thought this was weird but I kinda get it now.

Actually I quite like the idea, it is such an obvious sign of mourning.  In biblical times your mates would come over and mourn with you.  You would mourn together and be comforted.

I often think that I feel like a big chunk of us is missing.  Again I wish I was missing an arm or a leg.  Such an obvious sign something is wrong.  People can see it and there is no escaping it.

Perhaps now I feel like the hardest part of the mourning process is about to start.  People start to forget.  You appear normal.  I manage to get thru the day without crying.  Just.  At least not in public anyway.  People forget and we try to believe we are somehow normal.

Thankfully though perhaps there are a few people that have forgotten or aren’t sure what to say I am reminded by the messages that arrive in my inbox saying ‘I think of you lots’  or the meals that still keep coming to our house twice a week!   Those are VERY gratefully received.

Truth be told though there are many unanswered emails in my inbox.  I am sorry if you are one of those!  I  will get to you!  It just takes creative and emotional energy and it is in short supply.

Honestly I think we are making progress and then I think we are not.

We miss Aria so desperately.  It is real and sharp and there is no escaping it.  Will that verse I posted ever be true?  Right now I just can’t believe God can turn our mourning into dancing, at least not in this life?  Will we feel broken forever?

Soon we are going to have to decide what to do with this website.  I think we are going to finish up soon and start a new project.  Will keep you posted.

Daily prayer:
“Dear God thank you that Aria is in heaven and us in the world. Amen’

“Us not a family, we have no sister”

“I am alive, see my fingers move. Aria’s finger’s not move”

“I like Omaha, New Zealand is boring”

“Why we leave Omaha?”

Prayer request: We have all been fairly sick. Asher earlier this week. Me now and Hamish likely to follow. Bad colds and trouble adjusting to brrrrrrr NZ houses. And likely fairly average immune systems too.

Yesterday was Fathers Day in NZ and Australia.  We didn’t celebrate Fathers Day in the US this year, we had hoped Aria would be better and off the vent to enjoy celebrating her daddy perhaps in time for NZ fathers day.  Sadly she died the very next day.

Both days have been very difficult for Hamish, a devoted dad who cared very deeply for his little girl.  Hamish was there every night with Aria, often getting little sleep.  He loved spending time with her and she with him.  There is simply nothing, apart from God more important to Hamish than his family.  He gave up his job and life to care for Aria, supported by a society allowing him to do so freely.

We sang a song last night at church it’s first verse was this ‘How deep the Fathers love for us, How vast beyond all measure’   All day I had been thinking of Hamish’s love for Aria and grieving for his loss.  All week I had been struggling with God’s love for me- if He loved me why did he take something so precious to me?

Of course I have no answer to that question and probably never will, not in this lifetime.  But if a human can love a child like Hamish did Aria then I know God must love me 1000 times more.  And maybe the true love of a parent is to want and need your child to be in heaven with God and know that the burden of this world is over for them. God did the right thing by her and our family. But our hurting hearts still have a lot of healing to do.

We miss her. She is smiling in that photo by the way! It’s an Aria smile.

We have pretty much unpacked into our new place.  At least all the stuff we want to unpack, there is still lots in the garage to sift though.

We love the house, it is pretty fab.

Moving into a semi permanent place has been incredibly difficult.  I finally I understand now when people say they are afraid to start crying because they feel they may never stop.  It feels like Aria should be here and she really isn’t.  The sense of moving on is so hard.  Seeing her stuff is so hard.  Missing her is so hard.

It brings up all kind of hard questions.  Like – why did her bone marrow fail?  Why did God rescue her from a failed 2nd transplant and gift her wonderful working organs only to take her a year later?  Why did He do that?  Even if we had just gotten her back to NZ, even for a year, it wouldn’t of felt like we were so desperately robbed.

Yes Aria is in heaven, freed from her body that didn’t work quite right.  But it did work for a good period of time post transplant and it could of kept working for many years.

Actually- here is some home truth- I don’t care she is in heaven, I just want her back with us.  Yup I am selfish, because being back on earth isn’t something she would want or wish.  But I want and wish it.

But some more truth is this.  I am 100% convinced without a doubt she is in heaven and I am 100% sure I will see her again, grownup and beautiful and perfect.  And not because I am a good person or perhaps she was.  But because the only thing I have to cling too is that God put Himself in my grieving place and sacrificed His Son for me.  Jesus’s death makes me perfect and I get to enter heaven.

Not that God and I are on good terms right now.  Actually I feel He is patiently loving and providing for me while I ignore Him and question His goodness to my family by robbing us of a daughter, sister, granddaughter and niece.

Yeah, so not much faith inspiration in this post!  But I share this because it is a process, God holds me and not I Him.  I just don’t know how He plans to pull me out of this dark dark valley.

Today and tomorrow is moving day at our new place.  It was delayed a week while painting and maintenance was completed.

We started shifting boxes yesterday from our friends garage.  They kindly stored them for us for nearly two years, thanks friends.

Hamish did two runs in the car and Asher and I were at the house opening them up.

Asher was well pleased.  All these toys that he didn’t remember, it was like Christmas.

I got a few comments last week that I might find the process of opening boxes exciting, like Christmas.  I hoped it would be the case but in my heart I doubted it.

I stood in the kitchen yesterday overwhelmed with all our stuff, musty linen, dusty plates, the odd spider.  My heart overwhelmed with our life represented by stuff.  A life that Aria was very much a part of and now she isn’t.  I wanted to throw it all out and start again.  But I can’t, we must press on.

We packed up all this stuff (well Hamish’s mum did really) with such hope and expectation.  That we were leaving for Omaha seeking life for Aria.  We now return to NZ without her.  Our mission failed and we return with nothing, just broken hearts and a huge gaping void in our life.  How do we go on without our girl?

So Asher and I are at the beach today and Hamish continues the work, thankfully he finds the memories helpful.

We have a house!

We are really pleased, it is really nice and ticks all the boxes.  And it is a private rental- no agents to deal with or fees to pay!! It is great and we are excited to move in.

We get the keys on Monday and can start moving.  If you have muscles or a truck or trailer please flick us as email. Or if you would like to unpack a box or two that would be great too.  We have the interested job of remembering what was packed up almost two years ago and collecting it from all the lovely people that stored it for us.

It feels hard to be moving on without Aria and not shopping for a few pink/purple/orange items for her room.  We brought Asher these cool farm animal fairy lights.  They had pink cupcake ones there too…..  I miss having a daughter, I miss Aria….

Yup we are still here.  Is this going to be a reoccurring theme?

Life is crazy and confusing.

Always when updated the blog on Aria’s health the blog was pre-written in my head, sometimes over days or hours.  Now the blogs posts in my head change on an hourly basis.  What I planned to say in the morning changes by the afternoon.

I actually expected that life would get a bit easier now we didn’t live in hospital all the time and live with the extreme stress on having a chronically ill child.  In some ways it is.  In some ways I feel a huge sense of relief that Aria’s fight is over and FINALLY she is safe and I no longer have to feel guilty.

But that reality is that going back to normal life is pretty tough.  Some days are just so bad.  Yesterday actually started off ok and ended up a disaster.  Some days are just bad full stop.

Some days we feel so desperately alone, abandoned and confused.  Other days we just desperately miss Aria.  Some days we feel joyous and blessed.

Asher is struggling a lot and his behaviour stretches our parenting to the limit.  He is really unsettled and needs some routine.  He talks about Aria every day which is really nice.

Grief is such a profoundly unrational thing.  People assumed we feel a particular way about a particular subject and the answer is no we just feel completely devastated about it all the time.  There is very very little ability to be cool calm and collected.  Which is odd because that is how we have been for so many years.

Anyway this post feels like a bunch of random strange sentences that make little sense.

Aria was the sweetest, most bravest girl who loved her family.   She packed a lot of love into those 5 years.