Say it isn’t so
Today marked a new decline in Aria’s health and we are so sad.
Asher and I had a brillant day out at Carol and Cordells. It all seems a million years ago now strangely but in some ways I am so thankful because it gave me strenght to face what I was about to see.
Hamish and Asher were going to go the Cornhuskers game. I got home and Hamish was rushing out the door and really stressed after a terrible day with Aria. He wanted to escape and I decided to be brave and take look after both kids. I really wanted him to get some time out as I had today while Carol looked after Asher while Fran and I went shopping. Because Hamish had been with Aria all day we think he perhaps didn’t notice what had and put it down to tiredness.
Asher and I went to see Aria around 6pm. As soon as I saw her I noticed something was up. She wasn’t making eye contact with me. She would look at my eyes but had this vauge crazy look in her eyes. Reminded me very much of her sodium overdose. Then she started saying the same words over and over. After about half an hour I realised I was out of my depth so buzzed the nurse and she agree that Aria was off.
Everyone is surprised Aria has remained so well and her mental status has been fine. Until today. I had to call Hamish back because we have been dreading this part of her condition and hoped it wouldn’t come. When you have liver disease it does effect the brain, not permanently, but the mental state of the person does decline.
Hamish had to come back and took Asher and I proceeded to the the same conversation with Aria for over an hour
Aria “Finished!”
Me “Are you finished?”
Aria “Yeah”
Me “Ok then”
Pause, repeat.
It was awful and horrible and horrible and horrible.
The ammonia in her blood is high and the give her a med that binds the ammonia to the contents in her stomach and she poos it out. But hello she can’t poo! So they are going to have to come up with something new, Hamish is there waiting for that answer.
There is numbness as I write this, like perhaps I am talking about someones else child.
I was speaking to my sister today and she was saying how she looks forward to the real Aria being back after transplant. Hamish and I know that the real Aria is now left the building and what we currently have it this strange crazy Aria. Our little girl is gone now and wouldn’t be back without a transplant. Perhaps she will have more lucid moments, maybe this is just today. Looking foward to rounds tomorrow to hear what the doctors have to say.
1 Peter 5:6,7
6Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.
In my heart I feel the need to tell God He is wrong and that organs should have arrived weeks ago. But He is God and I am me. He loves me and Aria and Hamish and Asher. It is His call. But I just want to beg Him not to take her but please keep her with us and return her to us. See that smiling girl to the right of your screen? That’s Aria.
39 Responses to “Say it isn’t so”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 31 Dec at 4:36 pm
you are in our thoughts. x
# 31 Dec at 4:48 pm
Thinking of you and praying so hard for you all. Aria is in the right place and organs will come…..trust in your faith.
Huge hugs to you all.
# 31 Dec at 4:53 pm
Don’t know what to say….just so sad with you.
Sending lots and lots of love and prayers.
# 31 Dec at 4:57 pm
you are all in our thoughts and praying for you all.
God bless
big big hugs, I oh so wish i was there to give you the hugs
# 31 Dec at 5:03 pm
Thinking of you all. I dont know what to say. Continue to hope.
# 31 Dec at 5:11 pm
Praying and loving you guys lots. Wish I was there with you xo
# 31 Dec at 5:19 pm
thinking of you all. hope organs come very shortly
# 31 Dec at 5:23 pm
We are friends of Carol and Cordell, therefore, friends of yours too. We have been praying for Aria and your family and will continue to do so. Keep looking UP, our God is a great God. Hold tightly to your faith.
# 31 Dec at 5:24 pm
Lots of hugs to you Anita, and to Hamish and Asher (and of course Aria) too. Our thoughts (and hearts & prayers) are with you.
# 31 Dec at 5:37 pm
I am so sorry Anita, Hamish and Asher, I have tears rolling down my face for you. I wish I had the words 🙁 Love to you xoxo
# 31 Dec at 5:49 pm
Lots of love to you. I think of you often and hope that the organs for Aria are not far away.
# 31 Dec at 6:04 pm
Im sori
HUGS
Praying the organs will come quickly and youll get your beautiful girl back real soon
# 31 Dec at 6:04 pm
Thinking of and praying for you all, all our love.
# 31 Dec at 6:09 pm
Dearest Anita and Hamish. Prayers are with you and your precious Aria. With love, tears and prayers.
# 31 Dec at 6:41 pm
oh no! Sending you all an enormous amount of love. Keeping your sweet girl firmly in our thoughts xx
# 31 Dec at 6:52 pm
Oh hun
Sending a huge cyber hug for all of you
Love Neak
# 31 Dec at 7:14 pm
Hamish and Anita…what can we say except that our thoughts and prayers are with you. Oh Lord…carry Hamish and Anita through this time and provide what is needed in Your will for Aria. Thank you that they are not walking this road on their own and we pray that you’ll draw close to them at this time. Amen.
Hugs and prayers at this time
Gordon, Coralie & family
# 31 Dec at 7:50 pm
this is so sad and horrible for you guys – i cry for you. healing strength – words words words – i don’t know you guys well but are sending you big hugs heartfelt support
# 31 Dec at 7:51 pm
Anita, Hamish, Aria & Asher.
All my biggest hugs, love and everything coming your way. I wish for organs everyday.
Lots and lots of love and strength
B
xxxx
# 31 Dec at 7:53 pm
Our thoughts are with you.
# 31 Dec at 8:39 pm
Huge hugs,our thoughts are with you.
# 31 Dec at 8:53 pm
Oh my, we are so sorry. Sending you our love and are thinking of you xxx
# 31 Dec at 9:19 pm
Thinking of you often. Huge hugs for you all
# 31 Dec at 9:44 pm
All my love, to you Aria, and your family. I’m so sorry to read this update. A gentle mwah!
xxx Lou
# 31 Dec at 10:14 pm
Thinking of you all and uplifting you in this trying time.
All my love
Sheryl
xxx
# 31 Dec at 11:01 pm
there is nothing I can possibly say that would help- I pray that things will pick up again. bless you all
# 31 Dec at 11:03 pm
Praying for you through my night shift. May this new year bring back the real Aria. Love Katherine
# 31 Dec at 11:51 pm
Our heartfelt love to you all – Here is hoping 2010 will bring the answers to everyones prayers for Aria – Hope you get some rest tonight.Blessings to you all.
# 1 Jan at 12:24 am
i am spending this early new year day praying hard for Aria and praying for you Anita and Hamish and Asher – Much love, hope and hugs
# 1 Jan at 1:19 am
On my knees this morning-
# 1 Jan at 2:18 am
🙁
Don’t know what to say except thanks for letting us know so we can keep hoping and praying for you even more.
Our love as always
xoxo
# 1 Jan at 3:54 am
Again everyone has said it for me. You are held up by so many people who love, care, feel, sympathise, empathise. We place all of you in God’s arms, His loving, comforting, peace giving, healing arms.
With love, and heartfelt prayers.
Eve, (England)
# 1 Jan at 4:41 am
We reach out our arms to you all four and hug you tightly, drawing you close,close,close to the heart of God. Lean heavily on Him. See Him? He’s right there beside you and . . . He is feeling your pain. We are too.
Love you soooo much
Kathleen and Anita
# 1 Jan at 9:12 am
Anita, Hamish, Aria and Asher,
May God give you strenght. May he hold your hands and your hearts and always know the HE is there.
Much love to you all – May 2010 bring you all the best xxxx
# 1 Jan at 9:51 am
I don’t know what to say, except that my thoughts & prayers are with you! May God comfort you & bless you!
# 1 Jan at 10:51 am
Our thoughts are with you and hope 2010 brings good news to you all.
Thinking of you.
# 1 Jan at 12:21 pm
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