Hospital life
Hospital life sucks just quietly or maybe not so quietly now that I have just posted it.
Permission to have a moan?
Came in this morning to the end of a PT session with Aria.  Apparently they sat her up on the bed and dangled her legs and she did well.  I was mad and upset at this.  No one told us they were planned to sit her up and it would of been nice to have the opportunity to be there to support her and perhaps enjoy her a tiny bit.  Yes- we live in a strange and bizarre world where your child is not actually yours but really is the child of the hospital.  We sit at her bedside and try desperately to play some meaningful role in her life.  I looked up and happened to glance around the room and saw ‘Aria weekly schedule’ stuck up on the wall.  No one told me it was there or gave us a copy or consulted us on the specific times.  Lovely.
Moan 2
Our life is bursting at the seems.  Almost four months in a hotel room in completely doing my head in.  We have stuff for four people in a hotel room space.  You tidy it, it gets messy.  I have one draw for my clothes and trying to find spaces for stuff is proving difficult.  Plus- between spending all day with Aria or running around after Asher who wants to tidy and spend time doing dishes in a space not design for long term use.  Asher does so well but trying to  raise a two year old in a hospital is hard work.  Yes we get ‘The Look’  meaning this is an adult hospital and small children shouldn’t be running around in it.  Well too bad, this is his home- am I going to keep him trapped in either his sisters Picu room or a hotel room.  How is that fair to a healthy two year old?
Moan 3
Relationships- it is hard maintaining relationships in this environment. Â Aria’s PICU room is like Grand Central station. Â Doctors, nurses, PT, cleaners, consults from all the teams involved. Â It is impossible to have a private conservation. Â For me, I am a private person and like to be able to talk to people- like my husband, without someone else in the room. Â Hamish and I have a lot to talk about and it is hard and frustrating having to text and skype instant message cause it is the only way to maintain privacy.
Not to mention communicating with others.  This blog is a blessing and a challenge.  People can read all about us and Aria and unless we make the effort to communicate personally one on one with people we lose out. Perhaps it is modern life and things like Facebook which give us all the perception of human connection without the reality of it.  And often times things are so difficult I feel embarrassed to email personally or simply lack the energy.  But when I do get a phone call it is tough to talk honestly (see above) or an email or letter and feel bad for not replying even though I deeply cherish it but am so drained to reply and then that is also just one way communication!
I am so thankful to the wonderful people in Omaha who have taken us on board. Â I wonder if they knew what they were getting themselves in for. Â When I came here I felt a keen sense of guilt with these relationships. Â I hate to be a taker and not a giver. Â I feel like we desperately need their support yet I am doubtful that I input into their lives like they do to mine. Â And it is hard to ask people for help, to take time and travel and come sit in a boring hospital room with you. Â Plus to be able to cry and be honest with people you have only know 4 months and burden them with your stuff knowing they have their own busy lives.
Yeah so that’s life right now. Â Perhaps I am going to hit the publish button and regret my honest moments or people will judge me as being ungrateful or like I am complaining. Â I don’t mean to complain it is about getting it out and being honest.
How’s Aria? Â Her heart rate is pretty good, the best it has been in a long time in the 120s. Â She appears to have finally come thru her unsettled period and seems ‘happier’ today! Â Thank goodness cause we have really been feeling for her and her struggles.
38 Responses to “Hospital life”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 23 Mar at 11:32 am
Know that there are people all over the world thinking of you all the time. Hang in there. All the things you feel are valid and reasonable; it is not wrong to feel as you do.
As to taking and not giving – perhaps you just have to learn to be on the receiving end of other people’s kindness for a while. Later in your life when all this is past, you will no doubt look out for others in just the same way.
You, and Hamish, and Aria, and Asher, are doing a FANTASTIC job right now. Keep going.
# 23 Mar at 12:27 pm
its good to get things off your chest and have a moan
we arent suppose to go through this life on our own
such a shame they didnt tell you about her schedule – did you say anything about missing out this morning – I would have
re moan 2 how long before you can get into some sort of other accommodation??? I thought you were looking??? Ill pray about that
It would give you some privacy 🙂
I agree with Cath we all care about you and your family
there will be time to give later
I have been reading about the seasons of your life
this is just a season
accept the help and do ask
we want to support you all
we cant if you dont ask – or not as well as we could
you will have time to give later
God has put this season into your life accept His plan
Im pleased you were honest dont regret it
As I said before its good to get it out 🙂
MASSIVE HUGS
# 23 Mar at 12:31 pm
back again sori
I pray you didnt think I was being to pushy about the accommodation issue
I want to thank you for this post
sometimes I dont know what to say
so I either say nothing and feel bad or say something that doesnt feel adequate
we care 🙂 we wouldnt help and support you if we didnt want to
hugs
# 23 Mar at 12:32 pm
We are so lucky and thankful and we think the world of you all xxx
I fell lucky to have met another family who speaks double dutch in Omaha ;o) xxxx big hugs, huge snogs xxx
P.S in times like this .. this is where you make life long friends eh xxxx
# 23 Mar at 12:35 pm
Great to hear that Aria is feeling better.
You certainly don’t sound ungrateful or like a complainer to me. It must be incredibly tough. As I read your post I just had the thought “seasons” come to mind. That is, this is the season for taking, one sided conversations, for putting almost all your available energy into your own family etc. The time will come when you can ‘repay’, and you will.
Hang in there, you are amazing.
# 23 Mar at 12:36 pm
Really feeling for you! Had the same issues with my wee fella when we were at Starship. For us the solution was having regular meetings with doctors and making sure they realised that Joshie was still our child and regardless of the fact that we were in hospital we were still in charge of him and his care. Easy to say I know… Praying tho that you get some relief soon and Aria can be back to being ‘your’ child again.
Just know there are lots of us praying for you all and upholding you to Lord. xxx
# 23 Mar at 12:39 pm
Sometimes, just letting people in to help is all you need to give back. Humanity is basically decent, and to be part of something as important and needed as helping Aria gives people a sense of community, of being included in something good that is greater than their own life. Helping others always rewards the person that helps.
And letting people in is a gracious gift that can be very hard to do. I would feel humbled by such an outpouring of help and love. So, maybe the way you give back is by being you: an inspiration to so many of us. Thank you for being such a wonderful woman 🙂
# 23 Mar at 12:45 pm
God taught me some very powerful lessons when our son was sick in hospital for many years and when our daughter died. It was hard and long and and lonely time. I felt like i was trudging uphill for many years alone even though we had, like you, an amazing group of people surrounding us with prayer and support. We faced many of the same struggles that you do, privacy, communication, feeling like our children werent our own. The most powerful one for me however was that until I truly knew how to receive did i truly know how to give. God had to humble me enough that i had to ask for help, receive help that others offered and it was hard to rely on others. But now that I know what it is like, I give to others in a completely different way.
Know that there are people praying for you. Thank you for being honest and reminding us to pray for these things. xoxo
# 23 Mar at 12:53 pm
Dear Anita, You and Hamish and Aria and Ash are the most giving unselfish, humble people we know and I know people would agree that it is such a blessing for us to do anything for you guys. Whether it’s a phonecall, email, text, or taking Asher for the day, just knowing that it may make life seem a little brighter or less complicated for you at that time is what it’s all about.
As your friends, we feel so helpless as you guys travel on this journey and there is little we can do help but pray and hope that you guys know we are here for you and love you. I know there is so much more we wishe we could do to help make things easier. Please don’t apologise or feel guilty for having a well deserved “moan” – we feel honoured that you trust us all enough to be open and vunerable with us – and give us an insight into whats going on in your world. I only wish we could be there with you for hugs and cries and laughs…
and p.s…texting your husband across the room could be fun and romantic 🙂
Love you guys xxx
# 23 Mar at 12:58 pm
So relieved Aria is doing better. Still praying for you all. life has to be so complicated for you now but this is only temporary. Hold tight to his word. As for the help I think of the hymn “Pass It On”
Accept the help and one day you will be able to do unto another family who needs it.
Praying daily
# 23 Mar at 1:21 pm
thanks for letting it all out-who better to share your struggles, hurts, frustrations, anger, moans and groans with than your ‘family’ of God-you are human after all!!!! it just gives us more to pray for and we love to do that for you! as for feeling like a ‘taker’ and not a ‘giver’-believe me, you are ‘giving’ to these people more than you will ever know, anita! this journey of yours, we are all aboard the train ride with you, who would want to miss out! my 2 little granddaughters love to talk about the little girl on nana’s fridge! somehow they too are on this train ride with you all! remember that God is in charge, not the drs, nurses, staff, etc etc and he will never abandon you-he sees and hears all and like a loving father he loves to wipe away your tears – God bless you all and give you peace-love,jeannie
# 23 Mar at 1:48 pm
Hi guys, I agree with others before me- there are seasons in our lives when we seem to be recipients and have nothing tho give. Well first of all- you ARE giving- a lot- it just isn’t in very tangible ways so you may not recognise it. And secondly- as my sister said to me when I had a young family and hers was older- and she was alwys giving me things- IT GOES AROUND- you might never be able to give back much to the people giving to you now- but you will pass it ON in some way- to someone else- when it is your time- that s how it mostly works. and remember- love doesn’t keep track- of wrongs OR RIGHTS.
# 23 Mar at 2:18 pm
It was good to read you getting things off your chest, having a good moan. I was beginning to think you were too good to be true, as I could not take what you are taking. However you are brought before our Father God daily, nay minute by minute, as I read about the prayers going up for you. We were never promised an easy life, BUT we were promised God’s help for the way …….. and that He would never leave us or forsake us, bless Him. At this time in your life you are experiencing what very few of us, in the rest of the world will ever come near to experiencing. I don’t know why you have been chosen for this special job, BUT God obviously knows you are special and worthy, and He won’t leave you.
With my love and prayers.
Eve
# 23 Mar at 2:29 pm
Never doubt for one second that you ARE giving. Perhaps not in the way you would chose but your simple honesty here touches so many in so very many ways. People are LEARNING from you so it is best for all that you give the balanced picture of life as it is. You never know if stumbling across this blog may be the turning point for some other person to know you CAN get through all the hard times. People are being uplifted and brought together by ‘sharing’ your struggles, all of your struggles, not just Aria’s health. Not to mention, in a nutshell, if you dont have the right to moan a bit then who among us does!!!!
# 23 Mar at 2:43 pm
Hey Doll,
You are giving so much to other people – you are giving us hope, you are giving us lessons in holding onto faith, you are showing us how to be strong. You are giving so much.
I’m sure there is no one out there who is annoyed that you can’t always communicate back with them. Sometimes it is hard for me to find the words to express my support to you.
Take care of yourself Anita – that may sound selfish, but you need to be looked after too, as does Hamish, Asher and of course Aria. Big hugs and snugglies to you all xxx
# 23 Mar at 4:04 pm
Isn’t my sister clever?! I was about to say all the same stuff she said, but she beat me to it. Life is all about seasons. Right now, it is your season for being a “taker”. We all love you.
Ali xoxo
# 23 Mar at 4:29 pm
Anita,
It would amaze me and I would not feel as if you were human if you did not experience frustration and anger at the situation you are in. This is a fallen and broken world and it hurts. It’s ok and perhaps necessary for you to express this. God doesn’t mind, he doesn’t like brokenness either.
Sandy
# 23 Mar at 4:41 pm
I think it is perfectlly normal to feel the way that you do.
You do not sound ungrateful at all.Hope you feel a bit better for having put your thoughts into words,
So glad that Aria is making steady progress.
# 23 Mar at 5:14 pm
Thank you for writing your post Anita. Your life and journey of your family is giving so much encouragement and hope to me and my family….Thank you for giving so much – your very honest, loving and open life. I hear your heart and know the sadness at the situation you find yourself in and the frustrations…. with prayers for ongoing strength and physical/practical solutions….. like new dwellings and open dialogue and relationships with medical staff. Much love my friend, S
# 23 Mar at 6:20 pm
Hi Anita and Hamish. Take on board all the love and comments of the people who have commented. Not just in your head but in your heart. Hang on in there. You have 3 weeks from today before you get into your own accommodation. May your hands be lifted up to give you the strength from Jesus. Time may seem to have stopped for you right now but one day you will be able to look back and realize you have made it through, and all this pain will disappear. Hang on in there precious people.
# 23 Mar at 6:31 pm
Hi Anita, while this might seem strange to you we do appreciate the time and effort you put into this blog. I’m sure very few of us could remotely understand what it is like to be in your shoes! Never feel regretful about sharing from the heart. So many people are praying for you all and so wish there were things we could do to share the burden, but we’re unable to.Sometimes it’s just “your turn” to be the receiver rather than the giver! Besides, I am certain that you are giving in countless ways which you probably never even realise to those around you. Glad to hear that Aria is more settled now; that must be a huge relief for you. Am sorry to hear that things being done with her have not been shared with you – that is rather shocking, but I guess hospitals have their ways of doing things (and reasons) even if they’re incomprehensible to us.
# 23 Mar at 6:52 pm
I can relate to what you are going through as I went through it when my husband was in ICU( not as bad as a child I know) but traumatic never the less.Only three weeks till you move into your apartment so hang in there, it can only get better!! We don’t mind at all that you take out your frustrations on us. OF COURSE the medical team should inform and include you in every step of Aria’s treatment!!
I will pray that God will let them know that this is what they should be doing!
Yours in Christ,
Judy.
# 23 Mar at 7:13 pm
Hi Anita! you know what! if anyone has something to moan about its you and if you want to moan than just do it. Your strength is amazing, not long now till your in your new apartment. You and Hamish are always in our prayers.
# 23 Mar at 8:36 pm
When I’m not in your life I feel like I’m missing out!! I love being in YOUR life. It is a privilege. Funny how I worry that we are hanging around too much or too long. We will see you soon.
# 23 Mar at 8:38 pm
Anita I am sorry that this is soo difficult for you. Please know that our thoughts and prayers are with you. I can only try to understand how hard it is for you right now. I know that for various reasons it is hard to ask for help and that is totally normal and understandable. But please dont feel like you are bothering or only taking. You have no idea what you all have put into our lives hear in Omaha. We see your bravery as well as Aria’s. That alone has had a huge impact on my life. I dont know that I could do what you do everyday with such grace and dignity. Also please call me I would love to come and help or bring you something yummy you have been wanting but cant get out to get. Anyway just know that we love you guys and we are willing to help or do anything you need.
# 23 Mar at 11:08 pm
Did you hear that crash it was me hitting the floor after realise that there are other people dealing with more important things, like the wellbeing of your children and just life away from your support network. free to moan all you like Anita and Hamish, you are doing an amazing job.
Right Thanks for the reality hit.
Donna:-)
# 23 Mar at 11:16 pm
Its good for ones mental health to have a moan. Does Aria have a nursing care manager, someone who is responsable for her day to day treatment and nursing care, if so he/she should be consulting with you both and keeping you both updated and informed. Perhaps now is the time to lean on others I am sure you have supported others in the past and will do so in the future
# 24 Mar at 12:50 am
Sorry , not one of your gorgeous women bloggers – just an old bald headed – one foot in the grave – grumpy old man type blogger. But one who feels for you giving this long distance session – marathon of tender parental love and commitment to your children.They will not in their lifetime be blessed with anything of greater significance, save for the grace of God that will bring them from darkness into the light of his glorious gospel. I should give a scripture from the sacred repertoire, for that alone will bring all your trials into God’s blessed focus. “For we do not have a high priest who is unable to sympathise with our weaknesses, but we have one who has been tempted in every way, just as we are – yet without sin. Let us then approach the throne of grace with confidence, so that we may recieve mercy and find grace to help us in our time of need”.Heb. 4: 15-16.Come to the fountainhead for your needs for the Savior says I shall be in you spring of water welling up to eternal life. Sent with much love Eddie & Joyce
# 24 Mar at 1:01 am
I love your honesty, you are a wonderful person! Wish it were all a little simpler for you…. bet it will be nice to have a little more space soon.
Glad to hear Aria is doing well and a little happier…. Love to you all xxx
# 24 Mar at 2:17 am
Anita, thanks for your realness, its easier to empathise with you when you give us vivid visual descriptions of whats happening around you. You and Ham are the reporters on your intrepid journeys…What a privilege it is to be privvy to your reports. Keep sharing every burden and blessing. peck for Aria and Ash xoxo
# 24 Mar at 2:57 am
ay Anita i can relate on a lesser degree – when i accompanied Cody to out of town Hospital I felt very lacking in support and not having another adult to talk to was really lonely – the lack of privacy for you and Hamish must be very trying – am praying that tomorrow will bring relief and a bit of space for you and Hamish to have much needed couple time plus i hope that the hospital includes you more in the care of Aria they should be including you in everything to do with her care – hang in there guys hugs
# 24 Mar at 4:35 am
Moan away 🙂 We don’t read here for a sugar coated version of your life, we read because we genuinely care. Understanding the harsh realities of your lives right now is important so that we understand your prayer needs and from your end letting things out is much better than bottling them up and stewing on them alone. I admire you all for your strength, courage and amazing faith.
# 24 Mar at 6:14 am
Don’t you for ONE second regret publishing this!!!! No one has lived in y’alls shoes….sure there are many of us who have lived our own share (and can sure empathize with you both!!!)….but what you are living….MOST people will never have to experience. You are amazing!!!! Hotel/hospital life is not ideal for a 2 yr. old (I can’t even imagine!)…but you just keep on keeping on….ignore the stares…and know a day is coming when the Lied will not your home! Yes, you have EVERY right to complain a little…to vent….to get it all OUT!! Your life right now is HARD!!!!!! HARD!!!!! HARD!!!!! But also remember there are HUNDREDS if not THOUSANDS of people praying for you guys on a daily basis (and all over the world…so we have the various time zones covered!) 😉 There will come a day when it is YOUR TURN…Your turn to be the giver! But right now….rest in the place God has put you and be a sponge! Absorb baby! Take in everything every one is willing to give. Remember what a blessing it is for you to GIVE?? Well, that’s how we all feel. We LOVE knowing we can help (if even in the tiniest way) to help carry this enormous burden for you guys. It is a BLESSING!!!! And above all else…just know HOW VERY MUCH everyone LOVES Aria and your sweet family. No one expects anything in return. You just live and try to get over this giant hurdle….for one day SOON….you will be back HOME enjoying a wonderful life with your 2 precious kiddos!
We love you SO MUCH!!!!!!!!!
Todd, Lori, and fam
# 24 Mar at 8:56 am
Praying for you Anita and Hamish! Can’t even begin to imagine how tough it is, but don’t feel bad for sharing–it gives us an even more insight on exactly how to pray! That’s what it’s all about! Each of us needing and asking for prayer (and other things) and then having a turn at giving what’s needed–prayer, a shoulder, an ear, goodies, whatever! That’s the way it works and I think it makes God SMILE to know that as Christian brothers and sisters even those we don’t know we can love on and pray for and lift each other up!
So hold your head high and rest in the knowledge that as much as “we” love you, God loves you even MORE!
Love you
# 24 Mar at 12:34 pm
God blesses us with friends to listen to us, because He knows we will have frustrations, & trials in this life. God is also our friend, & He wants us to be honest with Him & come to him fully. Think of it this way: He wants you to crawl up on His lap, He will give you a hug, & He will listen to you. He is our loving Father! We are your friends! Never be afraid to tell us the honest truth, about what your family is going through! I’m glad to hear that Aria is feeling better! God Bless!
# 24 Mar at 10:45 pm
Anita, I can’t imagine a single person who wouldn’t moan if they were in your shoes! Hope you feel better for getting it all off your chest. We’re all cheering for you over here in Oz. In the last issue of the mag, I printed another article about Aria’s progress since last year. I don’t have your email address but will send a copy of the article to Janet so she can pass it on. Keep on truckin’! 😀
# 25 Mar at 5:10 am
Moan away Anita! You don’t even NEED to ask anyone’s permission, and let little Asher RUN those halls as it is his home too at the moment, and little boys NEED to run! 🙂
Sending much love and prayers for a better day for all of you. ((((HUGS))))
# 25 Mar at 9:44 pm
As I read, my heart akes for you guys.
As I drive my truck, hours between towns,
the radio goes off, and I pray for you.
Good to here the not so good as well, you are real people with real feelings, DONT apologise, we are with you in thought.