The Little Things
Aria’s health at the moment is pretty frustrating. While she isn’t terribly sick, things still aren’t right.
Her skin is still an issue, although the extra steroid doses she is on have helped. However the flip side of that ‘solution’ is that increased steroids always cause increased outputs. Her outputs are still high and made even higher by the steroids. So she is still off feeds and on TPN, and has a central line and things just seem to be stuck in a not so happy place for us.
To top this off we are still working hard at trying to get her to sleep through the night. Between being itchy, her nunu (ostomy) falling off at inopportune times and whatever else keeps her up at night, she sleeps pretty terribly still. I think she has slept through the night perhaps twice since transplant. Anita and I tag team through the nights, the one who is least tired bouncing up to check on her. It is hard to just try and ignore her because with her health situation, the ‘what ifs’ mean that it pays to check that everything is alright just in case. This leaves Anita and I weary during the day and unsettled at night too.
Given all this at times we are feeling a bit sad about things at time. We long for the days when Aria was on full intestinal feeds and she didn’t look like an extra in a zombie movie. We have been told that it is just a matter of time but we would really like time to be up and things be right, right now.
When things are feeling a bit grim like they are now, it is the little things that make us smile and help us to get through the day.
Yesterday we went to the circus courtesy of Child Life at UNMC. It is put on annually by the Tangiers Shrine each year and it was fun. Wheels the clown took good care of us and got us some great seats. What made this time special however was just a few fleeting moments when the dancing elephant was performing and for a time Aria lit up and danced along and was really enjoying life. It just made me warm and fuzzy inside.
Other times it will be something as simple as Aria and Asher pretending to be pirates or her doing something nice for Asher when he is a bit upset that makes me appreciate that even with all the craziness of her health, she is still a happy, kind little girl underneath it all.
When the big things are out of control and feel too heavy to bear, it can be the little things that make the days worthwhile. Through these times we fall back on our trust that God ultimately has things in his hands, that the timing of these things is under control and that he is doing what is good in these things. We are weary but he is not and we look to him for our strength.
Isaiah 40:28 Do you not know? Have you not heard?
The LORD is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
14 Responses to “The Little Things”
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# 28 Feb at 9:00 am
With God’s strength, you guys are AWESOME! Praying for some “better days” for you all!!
Love you,
C&C
# 28 Feb at 9:49 am
Always praying for each of you. Showers of His greatest blessings upon you all.
In His mighty love,
Carolyn O’Cain
# 28 Feb at 10:20 am
Thanks Hamish for the wonderful update of little things that shines thru for you and making you smile. And thank you Papa for answering the longing of your hearts to be able to have a normal life of sleeping well at night and a wonderfully healthy Aria and all of you as a family. Wow reminds of what our Lord says in John 14:12-14 He who has faith in me will do the things I have done and he will do even greater things than these because I go to the Father. Ask anything in my Name and I will do it. Jesus is the Name above all names He will surely answer the desire and longings of your heart. Having faith means you can feel the pain just as our Lord felt compassion for us and cries with us in our pains. Love Isaiah 40 thanks for sharing your lives with us, despite all the pain, God is still God, He is still good and very faithful indeed amen. The word for today from Psalm 139:16 God has planned and ordained each day of our life and written the story of our lives before we were born…and I am sure being with Him and knowing Him as children of the Mighty God, I am sure we will all come to the successful ending of such a story as in Hebrews 11 amen. Love you all MacDonald family, pray continously with you.
# 28 Feb at 11:46 am
Thank you for sharing the good and the bad. Praying that things will get better soon and you can get some much needed rest. What a trooper Aria is and all of you.
# 28 Feb at 11:56 am
Praying for you all – I agree in tough times it is important to celebrate the small things – God is in all of these too as you rightly point out.
In Christ
Tony
# 28 Feb at 12:05 pm
I cannot imagine being in your situation, but I know God is with your family! You & Anita are amazing witnesses for Christ! I’m praying that God will help the doctors to know what to do for Aria, that He will make her feel better, and that He will continue to give you strength through it all. God Bless!
# 28 Feb at 12:13 pm
hold tight to those scripturesin the knowledge of the truths they contain-God bless you all x x jeannie
# 28 Feb at 2:07 pm
Praying that Aria will soon be well and all the little health niggles will be sorted out and that you can all get a decent nights’ sleep 🙂 Our prayers are with you always. Blessings 🙂
# 28 Feb at 2:11 pm
Great post! Love to you guys constantly x
# 28 Feb at 3:51 pm
We are humbled by your journey, and send you our love and thoughts constantly. Can’t wait till you can come home to NZ with your gorgeous children. There must be a zillion people sending you their love and prayers right now. We are priviledged to be part of that zillion. God be with you all day and all night. XXX
# 1 Mar at 4:00 am
Thinking of you always and in my prayers. Hamish I will email with some tricks I used to support someone with taking care of their stoma.
# 1 Mar at 4:09 am
I think you guys rock! Hamish, thanks for being real. It blows me away every time I read that Aria is home with you guys. To me that’s answered prayers.
Sleep depreviation is so hard. Used as torture technique in the war! I was wondering if you have some friends who could come over for 2-3 hours in the afternoon so Anita and yourself can have a couple of hours sleep?
I will keep praying for you guys. Big hug from Auckland.
# 1 Mar at 5:44 am
Oh Hamish… gosh.
So so sorry I’ve not been keeping up with you all lately. Lots of things going on on our end as well and I totally understand how you’ve been feeling. I’ve missed seeing how you all are doing with Aria. I’m catching up now and wow… Keep going guys. God is answering your prayers and it’s at His pace. He knows your deepest desires and knows what’s going on even before we do as usual and would never ever give you what you couldn’t handle. We will be praying for peace and that things get sorted out for you all. There’s relief there. It’s coming. Just keep going. Oh and on the non sleeping issue. Have they thought of a way, non medicating, to help Aria sleep for you guys? There just has to be a way, or get something in her system to help thicken the stools just a bit, so that the output isn’t that bad? The reason I’m asking is because I just dealt with steroids myself a couple of weeks ago and the output on mine was greater come to think of it, but I’ve had mine for a long time and just ate something that helped me out a bit. Kept myself hydrated and off I went. It really helped, not to mention lost weight, too.
Anyway.. guys, we’re still here with you. This does get better. WILL get better. Lots of hugs and love and awesome thoughts and prayers are being sent your way. Need anything, please let us know and we’ll be praying.
# 1 Mar at 9:58 pm
I am so sorry that things have been rough for you all, I wonder if pure Alo Vera gel would be helpfull for Aria;s skin, but I suppose the Doctors have already thought of it, I had a terrible rash once which kept me awake and just about drove me mad and that was the only thing that help and healed my skin, anyway thinking of you all with best wishes.