Bittersweet
My husband has a great perspective on life and faith. Â I rang the PICU at 7.30am to find out how Aria was doing post extubation. Â Aria’s nurse broke the news to me that they were reintubating very soon because her gases were bad. Â There was something good about someone else telling me the bad news. Â It is hard to hear bad news from your husband or wife. Â So he passed the phone to Hamish and we talked about God’s plans for Aria and the positives of a trach. Â Mostly likely Aria will only be on the vent at night and during the day she will go on oxygen and be able to go for a walk.
You must know how awesome and brave Aria was during the almost 24 hours off the vent. Â She fought and struggled but her body was not able to accomplish what her mind wanted. Â She was so brave and did everything requested of her, coughing and allowing the nurses to put a tube down her nose to suction her (not pleasant). Â Aria is simply amazing, I will never be able to express that. Â She endures so so so much, sometimes I simply can’t blog about how tough her life is or how strong she is cause I would just fall to pieces and that’s not something I can do.
We have moved into our new place. Â We sent our first night there last night together. Â It was wonderful and horrible. Â How do those two things go together? Â They don’t except in this crazy world. Â It was beautiful to escape the hospital and have a house and space. Â Asher is having a great time and is loving it. Â He can have a bath and lots of room for his toys. Â Stephanie took me shopping and Brad watched Ash for a bit (thanks guys) they stayed for dinner and we laughed. Â But there was emptiness and guilt. A big part of our family was missing and it hurts. Â It hurts her clothes are still in the suitcase and her room is empty. Â Guilt that we were relaxing while she is lying in a PICU bed.
We haven’t sorted the logistics of how things will work with our new place. Â It is about a 20 min drive and I dont have my license (yet- that is another post) so it is going to be tricky for a bit. Â I want Hamish and I to spend every min with Aria- never do I want her to be without a parent. Â BUT the reality is in this country, without family and the length of her hospital stay, that isn’t realistic for Asher or our marriage and sanity. Â Please pray for wisdom.
Thank you for your support on extubation day. Â I know the good news posts always get more comments because everyone cheers on and it is hard to know what to say when things aren’t going so well. Â Thank you for cheering Aria on and praying for us.
28 Responses to “Bittersweet”
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# 17 Apr at 10:06 am
Taryn says:I read this on a blog today:
—
“Keep a Quiet Heart” is a little book that has been by my side for over ten years.
Elisabeth Elliot shares her stories and lessons throughout.
This morning I will share with you some of Elisabeth’s thoughts on trust she learned from
missionary Amy Carmichael:
“Some of you are perhaps feeling that you are voyaging just now on a moonless sea.
Uncertainty surrounds you. There seem to be no signs to follow. Perhaps you feel about to be engulfed by loneliness. There is no one to whom you can speak of your need. Amy Carmichael wrote of such a feeling when, as a missionary of twenty-six, she had to leave Japan because of poor health, then travel to China for recuperation, but then realized God was telling her to go to Ceylon.
“All along, let us remember, we are not asked to understand, but simply to obey…
‘And only Heaven is better than to walk with Christ at midnight, over moonless seas–‘
I couldn’t feel frightened then. Praise Him for the moonless seas–all the better the opportunity
for proving Him to be indeed the El Shaddai, ‘the God who is Enough.'”
Let me add my own word of witness to hers and to that of the tens of thousands who have learned that He is indeed Enough.
He is not all we would ask for (if we were honest), but it is precisely when we do not have what we ask for, and only then, that
we can clearly perceive His all-sufficiency. It is when the sea is moonless that the Lord has become my Light.”
—
May the Lord continue to become your light, Anita, Hamish, Asher, Aria.
# 17 Apr at 11:38 am
joyce says:I can relate to you in that when my family was in crisis and I was helpless to do anything I just gave it to the Lord and trusted him and it all worked out ok. Since that time I have learned to do that from the start and trust him. Sure saves me lots of worrying and I have peace. I believe you are at that point and will find peace through Aria’s journey to good health.She is such a strong little girl and between her and GOD she will be safe. He will keep you all in his care.
# 17 Apr at 11:53 am
Lori Hollingsworth says:bittersweet…you’re absolutely right! You have now moved onto chapter #2864 in Aria’s story (ha)…..and we are praying, praying, praying as we try to walk this journey with you guys. Look at where you were the beginning of Dec, and look at you now. No, not everything is how you would desire it…but can’t you see God’s hand in every tiny detail? It’s amazing. HE IS amazing!!!! We are going to continue to TRUST His ways (though we don’t always understand them).
Love you ALL!!!!!!!!!!
# 17 Apr at 1:00 pm
Kathleen and Anita says:Bittersweet. You couldn’t have chosen a better word to describe your situation right now. GOD understands, and cares so much.
We think you are a very brave little girl Aria. God bless you!
# 17 Apr at 2:11 pm
fiona says:We are naturally questioners- what? when? how? and of course- WHY? Unfortunately (?) God in His wisdom does not just hand us the answers- I guess because He wants us to just lean into Him and keep trusting. I think you are all awesome- and have been learning so much more of God’s love than we can who are not going thru all this. I pray that God will grant you a BIG measure of His peace and wisdom as you sort out this next phase.
# 17 Apr at 2:19 pm
jen says:I have been thinking about how awesome and brave Aria is the last few days
I pray that God continues to give her the strength and determination to get better and endure all she has too
try to enjoy your new house
something that helped me when I lost my youngest for a few months last year and part of that included absolutely no contact for 3.5 weeks was to set his room up in the hope and belief he would be coming home one day. It wasnt easy but it was lovely to be able to go in there and smell and hold his clothes. Just an idea.
praying for you all
# 17 Apr at 2:28 pm
Donna Wallis says:As well as Aria being brave and enduring alot, Her Parents and little brother are also brave and endure alot. Keep strong and know that sometimes laughter is the best medicine and that its ok to do it.
Kia Kaha
🙂
# 17 Apr at 2:50 pm
Josh says:Hey, you guys are on TV in NZ RIGHT NOW (TV1)- I’m recording it if you’re interested, though I didn’t quite get the start.
# 17 Apr at 2:52 pm
Tiffany Keller says:Aria is definitely a very brave little girl! I wish I could be there to help you!
# 17 Apr at 3:11 pm
Vicki says:I have just watched Aria and your story on Attidude this morning and felt so compelled to jump straight on my computer and find the update on one amazing family, the other thing that stuck out for me on the show was the loyal warriors jersey that Hamish was wearing, keeping the faith is so appropriate in this tough time and I want to pass on my prays, support and good vibes to help your amazing family thru this journey that can only make all of us appreciate what we have today. Go well in each day and know that people in New Zealand are wishing you all the best x
# 17 Apr at 3:20 pm
Shirley Davy says:Oh Anita my heart aches for you – that horrible ‘split-heart’ syndrome where you know joy and pain, laughter and tears – it’s just plain hard and that’s just how it is and I SO get it! Just an hour at a time, day by day adn the Lord is with you in every step and feeling… praying for peace which is beyond human understanding as you support each other as you support Aria – what a tough amazing little warrior! Much love my friend and looking forward to a skype sometime when timezones and crazy lives permit! X S
# 17 Apr at 4:03 pm
Marilyn says:Feel sad to hear that little Aria is still having such a struggle and you are also finding it difficult to be living away from the hospital but you are a very strong family with great faith and I am sure you will cope as you always have. Watch this post everyday and can’t wait to read that Aria has turned the corner and finally well on the road to good health again which I am sure will happen when all the inner healing has taken place. Thinking of you.
# 17 Apr at 4:15 pm
Lara says:I watched Aria’s struggles this morning on TV One. As a mother, I can not even begin to imagine the endless struggle of seeing your beautiful little girl so unwell but your positivity amazed me. I hope that little Aria is doing better today and I wish there was more my little family could do to help yours.
# 17 Apr at 4:40 pm
Meredith says:I have just seen the ‘Atitude programme’ here of your family and was very moved to see your dedication to achieve firstly the very best for Aira and for you all as well. Rest assurred that your christian faith in Jesus and the knowledge that He has promised to always be there for you and that He has taken the responsibilty to provide for you in every situation and circunstance of life such as you are all facing and going through now. Even He had to take time out with rest do not feel guilty if you have the opportunity to ‘ rest’ a while you must take that. Aria is in the palm of His hand and there she is safe and secure and although it is hard as parents just continue to trust as you have done this far. May you continue to know that His grace and love will uplift and hold you close to Himself.Bless you.
# 17 Apr at 5:12 pm
Bronwyn says:I too saw your beautiful family on “Attitude” this morning. Please be assured that from now on I will be following your progress with Aria and praying from my heart for your family, and this precious little angel of yours. God has entrusted her to you as her parents – you are ALL very special and deserving of his continued peace and presence with you right now. Stay strong and keep trusting.
# 17 Apr at 7:28 pm
Bridgette says:Sweet Anita and the rest of the MacDonald family- we have not stopped cheering for precious Aria- OUR cheers may seem unsuccessful but the Lord has such bigger and better plans- I love that he can see the WHOLE picture the one we only get tiny pieces and glances of. Anita cling to the Father knowing he sees it all and rest in knowing that we have not stopped cheering on sweet Aria!
# 17 Apr at 8:39 pm
Samantha Sutherland says:Oh sweetie, I knew you would have taken it very hard having Aria re-intubated. It is important to have one of you with their head in a different space and that was Hamish. It is a step sideways not backwards and lil miss fighter just needs a bit of help again. It will NOT always be like this ok.
I hated that our family was split for so long, Home never felt like home without Hamish and Lara there too. I don’t know that you will ever feel whole until you are all back together in your home together but you WILL get through this. You keep finding ways to cope – look how far you have come and coped and adapted (kicking and screaming sometimes!) so far since Aria was born. you don’t have to like it but you can do it. Is there such a thing as hospital volunteers or grandparents that can sit with Aria so you can take the time out together? If you could find someone who can be a regular ‘friend’ to Aria that she can bond with it might put your mind at ease when you take this time out. As much as it feels so wrong to you, you are right in knowing that you must take time out together to get through this. Aria would be without you for a couple of hours if she was at kindy or similar if this helps you get your head around it and I know it is different because you hate leaving a sick child.
Aria you are always in our hearts and you are such an amazing fighter, so strong and determined!
# 17 Apr at 8:55 pm
Judy Palmer says:Just remember that you need time out to relax to prepare you for the next stage of Aria’s journey, so there is no need to feel guilty. Praying for Aria to get much stronger and for you all to know God’s peace and reassurance.
Judy.
# 17 Apr at 11:33 pm
Natalie and Cody says:I would love to wave a magic wand over you – amazing MacDonald family – it’s such an arduous journey for you and one that not many people have to experience. You are going thru herculean strain and stress so please be gentle on yourselves and be free from guilt as you are wonderful parents to your two children and so young to be coping with all this – i take my hat off to you — sending hugs to you
# 17 Apr at 11:59 pm
Ann says:Every time I read of the struggle and how brave Aria is I get a lump in my throat, I wish I could make it all better for you all. I am not a praying person but when I read your blog I do send up a heart felt prayer for you all.
# 18 Apr at 12:58 am
Josh says:The program that was on TV this morning:
http://tvnz.co.nz/attitude/s2010-e6-video-3469284
# 18 Apr at 2:53 am
Viv says:It’s hard to know what to say when it’s not good news. Sometimes we are out here cheering Aria on and it’s easy to say “good luck” or “well done” but harder to express what we want to say when things aren’t going well. We’re here every day, checking on how things are, sometimes in tears because we want things to have turned out better than they did, other times shouting with joy when they are going well. Each day I jump onto google reader, you’re the first place I check, sometimes the only place.
Sending lots of “get well soon” wishes. I’m so glad that you are sustained by your faith and the wonderful people surrounding you.
Aroha
# 18 Apr at 3:10 am
Emma Abrahams says:Just watched Attitude on TVNZ On Demand and cried through it. You guys constantly amaze me. God couldn’t have entrusted Aria to a better family. He so knew what he was doing when he gave her to you.
# 18 Apr at 4:26 am
Warren MacClure says:Thoughts & prayers for little Aria and the whole family. Just take one day at a time. Glad to hear your faith is sustaining you.
# 18 Apr at 4:43 am
Belinda - LF says:((((HUGS)))) Anita.
Always praying for sweet Aria.
Sending lots of love and best wishes to you all. xxxooo
# 18 Apr at 2:53 pm
Julie says:Our family watched you all on TV too. Was great to watch. What an amazing example of faith you guys are. May God continue to sustain you.
# 18 Apr at 9:56 pm
Rebecca Breen says:Thinking of you all. xxx
# 20 Apr at 8:31 pm
Neala says:Just catching up but wanted to send a big xxx from us.