Disneyland and Hawaii
It has been a rough couple of days. Aria seems to run in cycles and we are currently in a down cycle. Hamish mentioned this yesterday. Our girl is suffering and very irritable. We did have a good couple of days actually where she was managing sleep at night. But she is back to having her meltdowns. It is painful to watch because she is pretty much inconsolable yet she reaches up her arms and yells ‘help help’. Then the morphine kicks in and she is ok again. My eyes are filled with tears as I write this because it is so hard.
The past three nights nights I have had to call it quits at about 2am or 3am when I realised I wasn’t going to get to sleep. Aria does manage some sleep but wakes up yelling like ‘bummer I am awake’ So I can’t get to sleep so wired am I. I believe God made mothers to response to their babies cries and it seems hardwired within me. I feel this surge of pain and perhaps adrenaline whenever I here that cry and I remain on edge trying to fix the cries I know I can’t.
We had a honest discussion with the PICU nursing manager and our transplant co-ord today. Never ever had we left Aria day or night without us or nana. But now we are getting to the point where we aren’t getting any sleep at all at night. So we are going to try to leave her with the night nurse from around midnight to 7ish. Aria is still in PICU and getting one on one nursing so she isn’t alone. We have talked to Aria about this and she understands were we are and the nurse will look after her. We are nervous about what people at the hospital will think of us. Because we are new here they don’t know our history but they assured us we were making the right decision. It won’t be every night. But being sleep deprived and pushed to our mental and physical limits isn’t healthy given our situation.
Asher had a great day today at the Arms place placing with Praja and Cury. He ate! And he came home happy. In fact he cried when we got to the hotel room, I think he was disappointed 🙁 So happy for him to be out of these four walls and super grateful to Angie and family for having him.
Whilst I honestly believe I don’t say this in bitterness, I feel like our family has been robbed of many many things. Dreams have been stolen. I was reading Joel 2 particularly verse 21-26, in hope and praise.
Be not afraid, O land;
be glad and rejoice.
Surely the LORD has done great things.
22 Be not afraid, O wild animals,
for the open pastures are becoming green.
The trees are bearing their fruit;
the fig tree and the vine yield their riches.
We are getting close! We are in Omaha, surely the Lord has done great things from those dark early days. Bringing hope, Dr E, preserving Aria’s life many many times, bringing generous fundraising dollars, amazing people into our lives, providing funding (Yes! still excited about that) and getting Aria’s listed for transplant! The Aria’s tree is blossoming but there is still a huge hurdle to jump.
24 The threshing floors will be filled with grain;
the vats will overflow with new wine and oil.
25 “I will repay you for the years the locusts have eaten—
My prayer is- that one day God might see fit to restore us and give us back the years that have been stolen. Not that we deserve it, but in His mercy we pray He might Restore Aria, Restore Asher and Restore Us.
Two things I keep in my head- Disneyland and Hawaii. We very much hope to get to Disneyland and for the kids to have a super wonderful time and for us to enjoy their joy. Together all four of us. And Hawaii, me and Hamish, sorry kids we love you but you aren’t invited. Maybe neither of those things will happen or maybe it will be Rainbows End and Hamilton. But restoration just the same.
13 Responses to “Disneyland and Hawaii”
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
# 22 Dec at 4:16 pm
Oh sweetheart! Firstly know that no one will judge you for not being superhuman, and they have seen it all before, the good and the bad parents and your devotion to your children shines through like you will never know. Think about how you have seen other parents and their care for their children and this is what we seen in you and the nurses and doctors see this too. They are professionals who are paid to work certain hours, then they go home and don’t have this burden with them. You don’t get a choice (well actually you do have a choice to be on this journey!) but you carry on and being a good parent is recognising your own needs and your own mental health. Be at peace with yourselves for taking the time to find peace in your hearts again (and sleep) so you can be the best you can be for Aria. She is old enough to understand this reasoning and to make great friends with her nurses.
Secondly, you will not get back the years that have been taken and you have every right to be angry about this. But one day you will not look back in anger and bitterness, I know this to be true. I still have fear when Lara slips back into poor health and still find those photos difficult to look back at. But you will eventually feel richer for the journey you are on. Asher will not be harmed by the time you have spent with Aria in hospital – i only have to look at Jake to see this he is a happy well adjusted, loving boy and Lara is a stubborn, vibrant, intelligent girl with a zest and love of life. WE have normal kids now and that includes our hospital stays. This is our normal and I will take it because the good times are so good and fulfilling. It is a very intense journey, for sure and a gift with many strings but the rewards are great. Once you are through this most difficult part of the path, you will eventually come to this understanding and you will be ok with it. Your feelings are totally normal, I spent so many drives back home crying the whole way and questioning how we would get through and how split our family was.
It will be ok.
# 22 Dec at 5:36 pm
Anita, dont you settle for Rainbows end and Hamilton!!! Glad to hear you and Hamish are both going to get some sleep, whilst Aria has one on one capable care you should take the opportunity to have a sleep catch up and not feel guilty – you put everything into your care and devotion to Aria, and there is no neglect in making sure you too get a little rest – it will make the days easier to get through and you sure will need all the strength you can get as you all move forward! Life is always slightly easier to manage when we are not suffering exhaustion on top of stress!
Hope you all sleep well tonight, keeping you all in our thoughts xxx
# 22 Dec at 6:28 pm
Tears flow for you all at this time. We have no understanding or comprehension of what you are going through but we do try and sympathise. I am very pleased to hear that you are willing to be away from Aria for those few hours to get some sleep. I pray that whilst asleep God give you peace a great rest to prep you for the following days. Arohanui………Haz and Roi.
# 22 Dec at 7:01 pm
I agree with Sam, you should take nights off and let Aria be with the nurse, she will understand, you have given your all for three and a half years and no one will judge you and there is no need to feel guilty, you need to look after yourselves as well. Your health and wellbeing are important. Aria and Ashie are truly blessed to have wonderful, devoted, caring, loving parents. You can’t continue running on empty so take some nights out to get some sleep and recharge your batteries, ready to face another day. Pleased Ashie had a good day playing with the children.
Much love
# 22 Dec at 8:55 pm
Hi Anita. The first thing I thought of when I read your post was that I wanted to give you reassurance that the nurses and medical teams would never judge you for taking a break, particularly not at night to sleep. I have nursed many families in situations like yours and desperately try to convince them to trust us to care for their child and to get some sleep and time out. Sam is right, that the nurses have to be awake working and have time to spend with Aria doing whatever she feels like and then go home and switch off and sleep. Don’t feel guilty leaving Aria, the nurses will ring you if you are needed and you will be far better able to care for Aria if you have been able to sleep. I hope you all have a lovely Christmas and get to enjoy the experience of snow and ther different traditions you can bring back here with you and keep special for years.
# 22 Dec at 10:07 pm
Totally endorse all the comments. You need to get rest so you are filled up again to cope with the next part of Aria’s journey. Please let it be organs for her soon. Take care.
# 23 Dec at 12:19 am
Hello Anita, Hamish, Aria and Asher,
I agree with everything Samantha says, first comment letter above. You will not appreciate it yet, but the road you have trod so far, very few people have been there. You are the richer for it. It may not and most probably is not the best of experiences, but whatever we go through it is an experience, to be experienced if I am making sense.
You are the richer to be able to empathise with those yet to walk the same or similar path, to be able to help and encourage them as those who have already been there have helped and encouraged you. Thank you for your daily up-dates, I have not missed one so far, we are all with you on this road you are on, there is quite a band of us, urging you along, lifting you on wings of prayer and pouring as much as we can by way of supprt into your lives.
God bless you in a special way this Christmas season as only He can.
With love and prayers.
Eve ……. England
# 23 Dec at 6:54 am
I am sorry you are having such a difficult time! I know it is a hard, & difficult situation for you. Just remember that one day God will restore us all! One day we will be in heaven where there is no pain or suffering; there is only joy, peace, happiness, & love! This life on earth will bring pain, but one day everything will be restored, made new, with no worries! Just remember that promise! God loves you and your entire family!
# 23 Dec at 7:13 am
Can’t begin to understand exactly what you are going through but I’m glad you are taking time out to get some rest – you really need it. Your health is so important in being able to cope with each day. I will continue praying with you for the immediate and the future dreams 🙂 love you guys lots, luv Lou xo
# 23 Dec at 8:08 am
PS Disneyland and Hawaii sound fantastic! Wish I had thought of that as my goal! So far it’s been Mangawhai and Orewa – ha ha but of course any family holiday is a huge bonus for us. Hope you get to experience Give kids the world and florida, that would be my dream but MAW don’t send kids from NZ further than Australia any more. Maybe we could scrounge some dosh up and meet you in Disneyland with the kids – what a dream that would be! Hope you have snow soon – Jake is dying to see snow he is so excited when he sees your photos.
# 23 Dec at 9:32 am
Well if it can’t be Disneyland and Hawaii, always keep in mind you have two cousins in Colombia who would just love to have you come and stay. We live in a beautiful tourist area and you will have an unforgettable time. Hugs for you all.
# 23 Dec at 1:18 pm
So is that Disney land trip include extended family? lol. Thanks Anita n Ham for keeping up your connections with us through the blogging of your innermost thoughts. Praying for your guys day n night with Meegs n the boys.Love you guys heaps
# 23 Dec at 4:30 pm
Trust in His promise that “He works ALL things for the good of those who love Him and are called according to His purpose.” I believe you fit that description to a T. Not only will He restore the lost, stolen years….but will lavish blessings on you that you can’t even comprehend at this moment. Oh….how He loves you!!!!! I KNOW it’s hard. I KNOW there are times when you physically and emotionally want to crawl into a hole! When you feel you just can’t go another step. At those times…..crawl into His lap…..cry out to Him…..let him hold you…..and allow Him to speak His promises over and over to your aching heart. HE is our comforter…..HE gives strength to the weary…..and perseverance to those in waiting.
Our stories are similar….and yet so very different. But regardless of the details….we serve the same SOVEREIGN LORD. I have witnessed His power and faithfulness. He creates the good days as well as the bad…. and uses them ALL to paint an AMAZING – BEAUTIFUL work of art.
Can’t wait to see yours…………..
Love you!!