Crazy tired
We are crazy tired. Â Tired. Â Tired. TIRED. Â Sleep for a week tired.
Despite the change in ABX yesterday Aria still spiked a fever in the morning to 39.4.  Her worse one yet.  Even morning without fail.  She sleeps well from 10pm to 3am and then starts to spike a fever and is unsettled from 3am onwards.  By 6am I am so tired I start to get emotional and teary at the sleep deprivation.
The plan is to give the change of ABX another 24 hours and that should do the trick. Â I am not convinced at all and not excited about the plan but that isn’t a good reason to switch ABX a third time. Â Hopefully I am wrong.
Last night was my night at home to get a full nights sleep. Â Except Asher was sick last night and I was up and down all night. Â Torture. Â I was SO tired and it was hard to get up. Â But what’s a mum to do when her little man is not happy?
As Aria and I were leaving the carpark and driving home after her last admission on Friday she said ‘thank you mummy and daddy for doing sleepovers with me’ Â It was really sweet and out of the blue. Â I think she understands that sleeping on a narrow lumpy pull out couch isn’t fun for anyone.
Current plan tonight is to leave Aria in the hands of of the nurses for the night and for both Hamish and I to get some sleep. Â Feels hard but there is only so much we can handle.
Did I mention that Aria has lost all her eyelashes and eyebrows?  The skin on her scalp used to be able to be flaked off, now it just peels off taking her hair with it.  She has big bald patches.  I don’t know whether to leave it or not, there are no patches of healthy scalp and it will all come out eventually.  There is something troubling about being able to peel your daughters hair off and she doesn’t make a sound.  The stares in the elevators are getting particularly hard.  My current trick is to place myself between her and people like a shield, saves the stares and the chatting.  Failing that my next idea to wear a tshirt  ‘I am a New Zealander, we don’t talk on elevators’
Yeah, today is a hard day. Â Grumpy much?
17 Responses to “Crazy tired”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 14 Apr at 3:30 pm
I can almost remember those days for me and to know that you are doing it 100% harder! is overwhelming for me. I praise God that you know Him, I know others that walk your walk and don’t know our Saviour.
I think leaving Aria may be hard but you both need sleep so much and in the long run, you all benefit. Its so important that you are well for her and Asher and Hamish. You are a pillar to them.
I left my boy at 7 weeks old for two days(I felt so bad) but my other two were really missing me and I had to fly home, I was fretting for them.
You are a fantastic mum, kiakaha and I pray you get the sleep you need. xx
# 14 Apr at 4:01 pm
You are MORE than allowed to have grumpy days. You are both spreading yourselves so thin, no wonder you are feeling the way you are. Sending you four lovely sleepy vibes.
Ali xoxo
# 14 Apr at 4:23 pm
You are doing the right thing, taking a night to get some sleep, hope Ashie has a good night too, Aria will be fine she will understand. Praying for a good nights sleep for all and for improvement for Aria with the change of ABX. Her hair will grow back, you could put on her lovely pink cap when you venture out, to stop the rude stares. Lots of love xoxo
# 14 Apr at 4:26 pm
Go ahead and vent.You have earned it. I cannot see how you and Hamish do all you do except God is with you. Praying for Aria and the meds and yet more rest for all. Will pray Aria has a good night tonight and rest for you.
# 14 Apr at 6:21 pm
You are both amazing. Yes – you need time to yourselves! I can relate to the sleep deprivation thing… maybe also, you might need to have your own medical check up? Is that possible while you are there? Could be that in seeking the best for Aria you have not been able to meet your own needs…just a thought…and although I don’t want to alarm you – your extreme tiredness could also (possibly) be related to something else…it might be wise to check it out. Your own health is important, even more so now. xo <3
# 14 Apr at 6:59 pm
all the above words said in love are just the right ones! you most certainly need to look after yourselves – physically, emotionally, spiritually and intellectually!!!! all those together make an altogether person! and you need to be ‘altogether’ for each other-you and hamish,husband and wife – you 2 and asher, you 2 and aria, you 2 and both children
take time to spoil yourselves sometimes too without feeling guilty!
God bless you all x x xjeannie
# 14 Apr at 7:35 pm
Crumpy grumpy is good. Feel good about taking a night for yourselves too. Carers need caring for as well as their charge and you both certainly need a time for you both to sleep and catch up together. No guilt trips this time!
# 14 Apr at 7:55 pm
Have a good cry,you are doing it tough and I know lack of sleep can bring out the worst in us.do think of yourselves and take the chance for rest.This is a long road for you all but only chosen people are given this journey,God Bless all of you on thisJesus blessed adventure,chrissy 🙂
# 14 Apr at 9:42 pm
Oh you poor poppet – sleep deprivation is one of the worst things to cope with. Absolutely everything seems worse when you are over tired. I know how hard it is for you to leave Aria without a parent, goodness knows you both have dedicated yourselves to having one parent with her at all times, but you are making a good decision for you and Hamish and for the kids too. Aria obviously understands why as her comments have shown so she will be ok. Just don’t beat yourself up about it. I know you must be feeling really sensitive to be worried about her bald patches too so maybe covering them up will just deflect any comments people feel obliged to inflict on you! Scarf, hat, dress up headress etc – go with the flow with what Aria would like and take a stress off yourself. Hope you all get a better nights sleep and that Asher is feeling better too. Hugs xxx
# 14 Apr at 9:57 pm
Aw swweetheart. Jesus says. “Come unto me all you who are weary and heavy laden and I will give tou rest” It’s all been said above. We are all praying for you guys lifting you up before the Father. Grab a moment to look at nature, spring must be coming! in so doing wait on the Lord and He WILL renew your strength!Kia Kaha Brave ones. Heaps of love and awhi.<3
# 14 Apr at 10:17 pm
Hope you get some well deserved rest and sleep. Don’t be too concerned about the stares it’s just human nature for some to fo that. Just know you are giving Aria a fighting chance for recovery and survival. Kia kaha xxxx
# 14 Apr at 11:02 pm
I pray to God you and Hamish can get some proper sleep Anita. Sleep is so vital to physical and emotional strength. So vital. For Aria and Asher’s sake, as well as yours, can you call in shots and favours wherever you can, however you can, so that someone else will take Asher for say 48 hours and the medical staff can be trusted to take care of Aria for the same amount of time? My heart says you need 48 hours of rest and sleep clear. I am praying to God that you get that window. Hurting for you, XXX
# 15 Apr at 12:36 am
Father thank you for Hamish and Anita’s rest and for fixing Aria’s meds and her treatment and for looking after Ashe. Only You know all things Papa and so we thank you for your blessings upon this dear brothers and sisters, thank you Papa in Jesus’ Name amen, amen, amen.
# 15 Apr at 1:15 am
We pray you will both get some much needed sleep to recharge your batteries. Also trust little Asher is feeling much better. Don’t feel bad about taking time out to get some sleep – you need this to keep going. Putting you on our church’s Prayer Link and believing for answers soon!! xx
# 15 Apr at 1:18 am
I wonder if you need to have two nights at home! You sound exhausted. Self depreviation is so tough!!!!!
Would Aria like to wear a pretty scarf or nice beanie when she is being moved to stop the stares?
Will continue to pray. Big hug from Auckland.
JO
# 15 Apr at 1:45 pm
Aww…Anita I wish I could be there to help you, so you can get some sleep! Too bad I live in a different state. I hope the doctors can figure out why her hair is peeling along with her skin. I am continually praying for your family! God Bless!
# 21 Jun at 9:06 am
Its good comical YouTube video, I every time go to visit YouTube website Crazy tired – Aria MacDonald for comical videos, since there is much more material available.