News - Aria MacDonald

Aria has been very much on our hearts and minds in recent days.  Of course, she always is but her absence is felt more keenly.

Our family has a new baby brother and we are pretty thrilled with him.  He is healthy and lovely.  Born at full term and weighing in at the same weight as his big brother Asher at 4.5 kgs (10pounds almost).

His name is Abel Joel Aslan MacDonald.  The middle name Aslan  is a nod to Aria in a way.  Her name meant lioness of God and Aslan is the lion from Lion, Witch and the Wardrobe.

Our little family is doing well.  Asher is in his second year of school and doing great.  He still talks about Aria and his sadness is obvious on some days.  He is delighted with his little brother and Abel was an answer to prayer.  Sylvie is also doing great, 2.5 years old now and no long term health effects from her early delivery.  She is a ball of energy and great fun.  She has a mop of curly hair and blue eyes like Asher.

Hamish has moved jobs from Fisher and Paykel to a charity called Christians Against Poverty NZ.  He has been there about a year and it has been a real blessing to be involved in this work.

We still miss Omaha a lot and our friends there.  But mostly we just miss Aria.  I went back and read the blog posts from our first few weeks with Asher, what a life we had.  Aria’s life was very difficult at times particularly around the times of her transplants.  It seems like a lifetime ago but just yesterday too.  She was an amazing girl and we miss her.

It’s been awhile!

Just thought we would pop in with a little update on our family.

Aria’s little sister turned one on the last day of January.   It has been a year since Sylvie arrived three months early into the world.  A year on everyone is amazed at how well she is doing.   We had the privilege of a routine appointment with her child development therapist.  She commented on the fact she doesn’t often get to see babies born that early doing this well.  Did our hearts good to hear that.  I just felt God say to me ‘look evil tried to break it (again!) and I fixed it”

Aria’s little brother has graduated from preschool and is now at school.  He is doing really well and loving school.  It has been a tough transition for our family.  Asher speaks about Aria daily which is nice.  The school had a family fun day and he commented on the fact Aria wouldn’t be there and said ‘poor Aria’.  It was nice to reassure him that it is no longer poor Aria rather poor us for missing her.

Thank you for checking in.

Today was a very special day for our family.  We got a great opportunity to be there when Aria’s Trust and the Kids Foundation presented the Gastro Team with iPad 3s.  Aria loved her iPad.  Actually it was the family iPad but she used it a lot.

The iPads will be used by the nurse specialists to provide patient education with very impressive apps that help parents and kids see in moving 3D the inner workings of our body.  Of course they will be used for a great variety of things such an entertainment while the parents talk with the team and emails on the go.

Lots of people reading this would of donated to Aria’s trust.  Thank you!  Your gift is living on.

It was great to see the team today including the doctors and nurses that worked so hard for Aria.  We really miss them!  I *think* that I am right in saying we formed a great relationship with them and the team in Omaha.  We loved Aria’s team and I am pretty such the feeling is mutual!

We really struggle with the fact Aria isn’t here.  We miss her a lot, today we really felt it.  It is super sad that things did not work out for her like everyone had hoped.  I so very much wish she was here.  She would be stoked to know what we got to do today.

Sylvie is doing well.  Here is a pic of her with Dr E!

A year ago today we say goodbye to our oldest daughter, Aria MacDonald.

That day was terribly sad and terribly amazing as we experienced God’s love in a really powerful way.

Aria was such an amazing girl.  We asked so much of her and she delivered her best fight every time with courage and strength.  She never complained about her life which was very difficult.  Her sense of humour was a real hoot and her smile just filled our heart with joy.

On the 20th of June 2011 God decided that our time parenting Aria was over.  It hurts a lot still and there are many tears and hard days.

We are so grateful to our teams at Starship and UNMC for their hard work.  We miss them too actually, they are a part of our hearts always.

Our family went to the Zoo today and had a lovely time.  Again, God’s grace so heavy on us today that He could turn this day into something special.  We also had a nice family dinner and a time of prayer and singing.

Thank you for your support and remembering of Aria too.

PS Sylvie’s biopsy came back all clear!  Good news, no hirschsprungs disease.

Today we got into a time machine.

We went back to Starship for the first time in 2.5 years.  It was really hard.

We went because Sylvie was being tested for the same disease Aria had.

We don’t think she has it (neither do the Docs really) but if she does it is a minor form of Hirschsprungs.

I can’t figure out how a place that was essentially a second home to us now feels empty and hollow.

We are no longer ‘part of the furniture’ at Starship like we were.

Starship was one of Aria’s favourite places.  She could be quite unwell in the back of the car with a central line infection but when we drove up the hill and she saw the hospital she would always say “Yay Star!”

We had the same pram/pushchair/stroller that she spent many hours sitting in as we pushed her around the halls of Starship/Auckland Hospital, much like we did at UNMC.  Except it was a different little lady in that pram who will never know her big sister.  Tragic.

On the bright side we got to see some familiar faces which did our hearts good.  We miss our lovely medical teams in Auckland and Omaha too.

God brought this verse to mind as we drove home.  Aria’s disease is fully healed, not as we wanted in a worldly sense but fully and totally in a heavenly one.

Sylvie Anne MacDonald

born 31st of January 2012

12 weeks early through the grace of God.

A fighter like her big sister Aria.

Will post the story of her miraculous birth and how God preserved her life and mine soon.

But for now some photos

Three days old. 28 weeks gestation.

4 weeks old or 32 weeks gestation.

Asher's first visit on Valentines Day

Taken today nearly 8 weeks old or 36 weeks. Off CPAP and learning how to feed

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.