Praying Hard for a Miraculous IVIG #16
I can't remember what a full night's rest feels like. Part of the problem is that we stay up too late, catching up on work and household items that are not able to be accomplished during the day.
But then there's this little guy who likes to wake at 5 AM, or like this morning, up at THREE AM...there isn't enough coffee in the world to make me feel awake.
Yesterday, we started IVIG #16. Hunter had a great day- super happy, chatty, so many smiles and kisses...and then at 3 this morning, my hopes of relief were shattered as he slammed doors, stomped up the stairs, and was up and down until I finally crawled out of bed to shower at 6:45.
Here's the problem with IVIG weeks. He never sleeps. He is up in the middle of the night, either jazzed from the treatment or throwing up/having headaches from the medicine. So I should have known in my confused little mind that he would be up at some point.
However, after seeing glimpses of my happy boy, I was so confident we were headed in the right direction. My 4 month fog seemed to fade as I thought about the miraculous change we were about to undergo.
Have you ever wanted something so, so badly, that you actually dreamed it happening? You imagine your life all bubbly and warm, and you feel like you can conquer the world?
And then, have you ever had your world come crashing down, as reality hits?
Last week, I told Peter that I couldn't even remember life prior to this regression. Had we imagined that we were doing better? Or was he truly in a different place last year?
We have given our all to this child and his recovery. And I have so much anxiety going into this IVIG...
because if it doesn't work...
if it doesn't provide him some relief of inflammation...
what do we do next?
The thought of not knowing, not anticipating, not having a plan scares me more than anything. I have "known" all along this journey certain things. I have "known" when he was ill, I have "known" how to battle insurance to get coverage, I have "known" that public school was going to work...
and I am going to have to admit that I was wrong very quickly if were are not given a second chance with this round of IVIG.
It's not about being wrong that scares me- it's about the trust that I have put into God's plan and just "knowing" that we were going to be held throughout this journey.
I do know that God is here, and I would tell someone in my shoes to continue to trust, continue to pray, continue to have diligence in praising His works...but when everything seems to be falling apart, it is so much easier to doubt than to trust.
Doubting takes no effort.
Trusting does.
I need the energy to trust, to know that we ARE going to get better. We ARE going to conquer. We ARE going to persevere.
Let Mercy Hold You- Jason Crabb
But then there's this little guy who likes to wake at 5 AM, or like this morning, up at THREE AM...there isn't enough coffee in the world to make me feel awake.
Yesterday, we started IVIG #16. Hunter had a great day- super happy, chatty, so many smiles and kisses...and then at 3 this morning, my hopes of relief were shattered as he slammed doors, stomped up the stairs, and was up and down until I finally crawled out of bed to shower at 6:45.
Here's the problem with IVIG weeks. He never sleeps. He is up in the middle of the night, either jazzed from the treatment or throwing up/having headaches from the medicine. So I should have known in my confused little mind that he would be up at some point.
However, after seeing glimpses of my happy boy, I was so confident we were headed in the right direction. My 4 month fog seemed to fade as I thought about the miraculous change we were about to undergo.
Have you ever wanted something so, so badly, that you actually dreamed it happening? You imagine your life all bubbly and warm, and you feel like you can conquer the world?
And then, have you ever had your world come crashing down, as reality hits?
Last week, I told Peter that I couldn't even remember life prior to this regression. Had we imagined that we were doing better? Or was he truly in a different place last year?
We have given our all to this child and his recovery. And I have so much anxiety going into this IVIG...
because if it doesn't work...
if it doesn't provide him some relief of inflammation...
what do we do next?
The thought of not knowing, not anticipating, not having a plan scares me more than anything. I have "known" all along this journey certain things. I have "known" when he was ill, I have "known" how to battle insurance to get coverage, I have "known" that public school was going to work...
and I am going to have to admit that I was wrong very quickly if were are not given a second chance with this round of IVIG.
It's not about being wrong that scares me- it's about the trust that I have put into God's plan and just "knowing" that we were going to be held throughout this journey.
I do know that God is here, and I would tell someone in my shoes to continue to trust, continue to pray, continue to have diligence in praising His works...but when everything seems to be falling apart, it is so much easier to doubt than to trust.
Doubting takes no effort.
Trusting does.
I need the energy to trust, to know that we ARE going to get better. We ARE going to conquer. We ARE going to persevere.
Let Mercy Hold You- Jason Crabb
When the road is winding through the darkness,
And the load is heavy as your heart is now,
And you're full of doubt
And the load is heavy as your heart is now,
And you're full of doubt
When your prayers are crashing into silence,
And you're scared that everything you're crying out,
Is gonna hit the ground
And you're scared that everything you're crying out,
Is gonna hit the ground
Every night is holding back a sunrise,
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do,
So let mercy hold you
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do,
So let mercy hold you
(Let mercy hold you...)
It's in the midst of knowing that you're helpless,
When you're left, waiting on the promise and
You don't understand,
When you're left, waiting on the promise and
You don't understand,
So let the valley teach you how to sing,
And still believe, grace is everything you need,
It's only here you'll see
And still believe, grace is everything you need,
It's only here you'll see
Every night is holding back a sunrise,
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do,
So let mercy hold you
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do,
So let mercy hold you
There's a cross, reaching to the furthest place,
There's a love nothing in the world can change,
In it all, one thing will carry you through,
So let mercy hold you
There's a love nothing in the world can change,
In it all, one thing will carry you through,
So let mercy hold you
Joy is coming in the morning,
You just gotta wait for the dawn to break,
Joy is coming in the morning,
Don't lose hope
You just gotta wait for the dawn to break,
Joy is coming in the morning,
Don't lose hope
Every night is holding back a sunrise,
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do
Every storm is shadowing a blue sky,
I know it's hard,
When there's nothing that you can do
There's a cross, reaching to the furthest place,
There's a love nothing in the world can change,
In it all, one thing will carry you through,
So let mercy hold you
There's a love nothing in the world can change,
In it all, one thing will carry you through,
So let mercy hold you
Let mercy hold you,
One thing will carry you through,
Let mercy hold you,
(Let mercy hold you...)
Just let mercy hold you.
One thing will carry you through,
Let mercy hold you,
(Let mercy hold you...)
Just let mercy hold you.
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