Privilege and responsibility
There is what six months of receipts look like. Â Are you thinking- we would much rather see a photo of Aria. Â I agree. Â But I do have a point.
We have the privilege of having Aria’s fundraising money in a Trust account with the KIDS foundation.  The privilege of them having the responsibility of managing and receipting that account.  The privilege of telling people who donate money to Aria it is safe and well and they can have a receipt for tax purposes.  The KIDS foundation is a registered charity and once a year they have an independent audit of their accounts and as Aria’s trust fund naturally falls into that audit.  Hamish and I have the responsibility to keep receipts to account for all the fundraising money we use to have to privilege of being together here as a family in the US.  We have kept all the receipts but given the events of the past six months we have been less than great at organising them!  But here they are in month and date order- now for the fun job and ticking them off with the bank statement!  Thank you KIDS Foundation and thank you to all the lovely people and companies that have donated to Aria.
Now to Aria-
She failed to fly overnight off the vent. Â She still needs that vent for at least 6-8 hours a night. Â That is ok. Â She is making progress every day. Â The vent settings she is on are very minimal. Â The vent is set at 21% O2 (normal room air) and CPAP pressure support. Â So it kinda pushes air into her lungs as she takes a breath. Â Naturally we are really disappointed but it is ok because her kidneys aren’t quite perfect enough to go home with anyway. Â The Gastro Doc joked to us yesterday that Aria’s gut could of gone home weeks ago! Â We laughed cause he is right-it was the intestine that rejected first up last transplant is doing awesome- not a hint of trouble. Â Which is fine cause that is the make or break one and the reason we came to Omaha
Hamish and I are doing most of Aria’s cares now. Â The PICU nurses have been very generous teachers which is lovely considering that isn’t really their job as such. Â Teaching is mainly done on the ward. Â Aria loves having mummy and daddy do her cares and she is an excellent helper. Â I was teaching Hamish how to do her wound dressing yesterday and she was busy poking herself with a Q Tip- so funny. Â She has a bit of thrush in her mouth so we have had to give her meds directly into her mouth so we encourage her that she is helping us. Â It is a sales pitch that works too! Â Honestly she is such a good girl and really embracing her life rather than fighting it (most of the time!)
Unfortunately I have let my guard down in regards to getting Aria home. Â I let my mind start to dream and hope. Â For almost 8 months now, since before we left NZ, we only plan life in 24 hour increments. Â Sadly I am at the point where I get anxious if I have to plan ahead even a day or longer. Â Simply because I can’t and it really hurts. Â I wish we were normal and living at home as a family. Â Asher cries now every time we leave the hospital. Â He loves hanging out with Aria now she isn’t a blob in a bed, which she has been for so long. Â Breaks my heart every time. Â So I need to get back to ‘coping’ and ‘taking it one step at a time’ which I hate cause what choice do I have. Â Hamish’s parent’s arrive on Thursday and for some reason knowing help is on the way makes the next 3 days seem like a lifetime! Â It will be fab to have them here and the kids are really excited (as are we!)
I have some really fun pics of the kids to post tomorrow.
THANK YOU for reading Aria’s blog. Â It is a privilege that you do and we don’t take it for granted.
27 Responses to “Privilege and responsibility”
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# 5 Jul at 6:41 pm
It is a privilege to have you share Aria with us 🙂 One step at a time is ok, you have so many people walking those steps with you, and it is going to be awesome when we can all walk kms worth of steps with you xoxo
# 5 Jul at 6:53 pm
I agree with Natalie – thank you so much for sharing Aria & your life with us. Sending you so much strength for coping & getting through each day. Lots of love & prayers from us xxx
# 5 Jul at 7:10 pm
It’s so fantastic that Aria is moving in the right direction and in no time at all I’m sure she’ll be home and you guys won’t know yourselves. In fact you’ll actually have so much time to choose how you’ll spend it. I remember wishing for ‘normal’ and thankfully I have it now. Your turn will come in the near future. Blessings to you all and it’s great you have Hamish’s parents visit to look forward to.
# 5 Jul at 7:14 pm
Opening your lives and hearts on this journey is an incredibly generous thing to do. I’d be blocking out the next steps if it involved reconciling bank statements too 🙂
Hope you all have a great time with Hamish’s parents.
# 5 Jul at 7:32 pm
isn’t it amazing how many reciepts we accumulate over the months (well, accumulate if you have to keep them anyway!)….. what a big job!!
Can’t begin to put into words how wonderful it has been to see Aria doing so well the last few weeks, I am so thrilled for her!! Keep dreaming and hoping Anita, I think Aria’s progress is very good reason to!!
Sending you all ton’s of love, hope the next few days go quick till Hamish’s parents arrive!! xxxx
# 5 Jul at 7:59 pm
Wow all that paper work!. That sure is another side to your life at the moment.
it susre is sad that she couldn’t go overnite without the vent, but I imagine that as she gets during and better at her day time breathing without assistance, so she’ll go longer at nite without the vent, and before you know it shell off the thing altogether.
Keep up the posting.,looking forward to the picutes tomorrow.
# 5 Jul at 8:20 pm
The privilege is ALL ours! Thoughts with you as always, and what a thrill to have family with you again very soon.xx
# 5 Jul at 8:27 pm
Thinking of you guys all the time. You guys cope amazingly so don’t beat yourself up. Aria will be home with you before you know it and everything you have gone through to this point will seem a blurr of memories. God is good and this is only the blink of an eye in comparison to what is to come 🙂 Our love and prayers are with you.
# 5 Jul at 8:32 pm
Just wanted to let you know that we are the privaleged ones that you share your feelings and honesty with us – thank you for letting us take this journey with you and your family.
# 5 Jul at 8:36 pm
Hi guys, I check in every day but never comment – bad netiquette I know. It’s so great to see how Aria is coping and progressing each day, and such a blessing to share in your ups and downs in such a candid way. Your in our prayers always. Lots of Love, Moira
# 5 Jul at 8:39 pm
I too want to thank you for sharing Aria’s life with us.Being able to share in the prayer life has indeed done so much for me. Seeing all the wonderful things he has done for her and the medical staff who treat her has been such a testimony to many.You are great parents and Asher and Aria are so fortunate that God chose you to be their parents. Praying for your needs to be met.
# 5 Jul at 8:44 pm
I check in most days without posting too, I feel so lucky to be on the receiving end of the news about how Aria is doing.
Every day I look at my wee girl and hope that Aria will be able to do the things she can free of all the machines and the hospital environment.
Big hugs to you Hamish and Anita!!
# 5 Jul at 8:57 pm
So happy the Macs can make it over there! What awesome grandparents! Take care of yourself Anita, we continue to pray for you all and are delighted to hear of Aria’s progress. Hugs and kisses to everyone xoxoxoxox
# 5 Jul at 9:39 pm
The words of a negro spiritual come to mind as I read your update. I heard it years ago on Radio Rhema in NZ:
I’m only human, I’m just a woman
Help me believe in what I could be
And all that I am.
Show me the staircase I have to climb
Lord for my sake teach me to take
One day at a time.
One day at a time sweet Jesus
That’s all I’m asking of you
Just give me the strength
To do every day what I have to do
Yesterday’s gone sweet Jesus
And tomorrow may never be mine
Lord, help me today
Show me the way
One day at a time.
God has special strength for you both TODAY and just think, when tomorrow comes He will give you what you need for whatever tomorrow holds!
# 5 Jul at 10:02 pm
It is a privilege to pray for you all. You have no idea how much my foster children adore seeing your blog and deciding what to pray for today. Aria has brought this children the hope of God and pray into their lifes and shown them what parents to for their children. She has played an integral part in helping me to get them to pray for others who are in worse situations than their own. It is such a shame you are so far away as they would adore seeing and meeting you all.
Praying that you have the strength to look ahead to the future and keep that dream of Aria safe and home in NZ safe in your minds and hearts. xx
# 5 Jul at 10:30 pm
Thank YOU for writing Aria’s blog – reading it is like a little ray of sunshine in every day – yes, sometimes there are some cloudy bits, and other days there are beautiful rainbows – you both do a great job – and congrats on doing all her cares – nursing career coming up for either of you perhaps??
# 5 Jul at 10:32 pm
Oh Jake used to hate leaving hospital too – he still loves being there, and now so does Lara (bizarre huh!). I know its not normal when you relate to how others live, but it is your normal right now and it won’t be your normal forever. you will be able to look ahead when you are ready, it is very scary thinking about leaving your ‘safe’ place and it is all you have known in Omaha. Hey but you guys can cope with anything and this change you will cope with too, it will be fabulous and be at the right time for you and Aria. I’m always grateful that you are able to share your lives and Aria with us, we miss you so much.
# 5 Jul at 10:42 pm
I’s just grateful that you allow me to share with you. I look forward each day to the posting and in the time I’ve been reading, Aria’s improvement is so marked. God go with you ALL the time.
# 5 Jul at 10:43 pm
Wow what a lot of paper you have to accumulate & store. Add a new title to your existing list…Accumologist…sounds more professional eh amidst the chore of sorting.
Don’t feel to down abt Aria needing a bit of vent overnight, she hasn’t failed at all. When the body sleeps all organs have to learn how to function & ‘do their thing’ on there own as the body rests & recuperates. After being on the vent for so long the lungs have to relearn how to breath when she not awake doing it for them…if that makes sense. So pls do not feel too disheartened, it will happen as she has already made great strides. That is being manifested by the sign of Asher being upset leaving her. They are meant to be together full time & they will be soon.
You are all doing so well.
Blessings to you all.
PS make sure the door is shut in the room where all your receipts are neatly laid out…last thing you need is a gust of wind blowing in haha!!
# 5 Jul at 10:44 pm
Take it a day at a time and God will do the rest
# 5 Jul at 10:49 pm
HUGS
praying for Aria to make continuing progress
and for you to dear Anita
# 6 Jul at 2:12 am
I too deem it a privilege to be a part of this journey you are on. I really look forward to reading your blog, rejoicing in the ups and sympathizing in the downs. Praying that Aria will be home soon so you can feel like a normal family at last. Yours in Christ,
Judy.
# 6 Jul at 4:44 am
Hm, paperwork… 😉
# 6 Jul at 5:18 am
I think everyone has said it, WE ARE THE ONES PRIVILEGED, BY YOU OPENING UP YOUR LIVES TO US. Thank you so much. If, by you, sharing your life with us, helps you, then I for one am thrilled and blessed.
This is an incredible frightening journey for you, but you have open our eyes by sharing. Thank you again.
With love and prayers ……….. God bless you
Eve
# 6 Jul at 6:25 am
My support is prayers interceding for you all especially for Aria. Its God’s will for me amen. Expect miracles always amen!!!!!!!
# 6 Jul at 4:55 pm
don’t feel disheartened anita, aria is doing so well. this is only a minor hiccup, that she’s not yet ready to come off the vent at night. from a life time of being a very sick little girl, to a future of being well & healthy is major progress. god has her safely in his hand & all will work out according to his plan. 4 years ago, when she was born, only one doctor gave you hope for her survival, and only family & close friends knew of the miracle of her life.
now you have a huge support team, some of those people you will never meet. but we’re here, praying for your family & cheering you on, via the net.
stay strong anita, god is with you, and guiding aria’s doctors & nurses.
just think how lovely it will be to celebrate the birth of our lord & saviour this year, as a family, and to be able to give thanks for this amazing, heartbreaking (at times) & courageous journey you have travelled, as a family.
love & prayers from thames nz.
# 6 Jul at 8:47 pm
Thank yous for letting us into your lifes, yous are amazing i truly admire yous, i don’t think i could have the energy to do all the writting so thank yous once again. Love and hugs.