needing God more than ever

I usually love when I get a chance to sit down and reflect on my blog. I love to share the sweet things our kids have been up to and the even sweeter things that God has been showing us. This post leaves me a bit anxious though. I don't want to write it...but I do.
Some of you have followed along for a LONG time, some started when Brody was sick as an infant, some when my mom passed away and some when Justin got sick. Either way, I have had some VERY faithful prayer warriors come alongside this family due to this blog!
I am going to keep it short and sweet because I am exhausted. Exhausted from talking about this with only a very small handful of people in addition to a lurking stomach bug. I have been sick more times in the past few months then ever before in my life. When God says slow down...he flat out MEANS it!
Almost three years ago (seriously, almost THREE) our lives changed dramatically when Justin was diagnosed with systemic sclerorsis or scleroderma, ploymyostitis, intersit. lung disease, RA, fatty liver etc and then later avascular necrosis.
It has been a long three years. It has been a good three years because we have made the best of it...but obviously very hard as well. Lots and lots and lots of our time has been spent in hospitals both in town and out of town, emergency rooms, doctors offices, out patient surgery centers, labs etc.
Lots of time. So so so much time.
And, here is the thing. Justin doesn't have LOTS of time. None of us have a promised amount of time here...and I think we all want to spend our time as best we can.
There was an appointment on Friday that just sent us over the edge. Right over it. We crashed and burned off a cliff and we are trying to find our way back to the top. But, as we settle down here crashed on the ground (in the place we need GOD the VERY most) we are kind of thinking this place may be OK.
This is what I mean.... The doctor revealed that Justin's scleroderma in his organs, specifically the "guts" is more aggressive than he has ever seen. However, it is not limited to his guts...it is messing with liver, kidney, bladder and so on. There are some choices to be made. Does he want to bounce from one specialist to another being poked AGAIN for things he has already been poked for? To be told ultimately this is just the nature of your disease? Not really. Not really at all. His rheumatologist made the decision to take him off IVIG. It just isn't worth it anymore. It is too hard on Justin's body for the time that he has to spend doing it.
He is NOT getting off all of his meds right now. But, he will not be taking any new medications/seeking further medical advice. We have tapped that train OUT. They threw the kitchen sink at him almost three years ago and we have been fighting like hell since that day.
The man graduated from college with honors and kicked booty at his job during the first two years...he has more than proved his strength. And, there is nothing left to prove. God has a plan for him and we don't believe His plan is to heal Justin through medicine. Hear me say this: We BELIEVE that God will HEAL Justin...we do not believe that God will heal him through medicine. We are STILL fighting. We are NOT giving up.
So, a time has arrived where all things are unknown. What is next? What does this really mean?
We just don't know. One thing we do know is that we plan to be more intentional with our time than ever before. We have made some legit memories in the past three years and I pray that we have fifty more years ahead to make even better ones. This doesn't mean that we are going to hide in a hole...it just means that Justin doesnt feel good. Like, ever. So we aren't going to push things. We arent going to say yes when we need to say no. We love saying yes, but we hate the guilt we feel when we have to say no last minute. It is hard to be social people who just...can't.
What can you do for us? You can pray for us, but more importantly...please pray for our children. I have some specific pray requests for our kids that I will update soon. But, for now just pray for them...God knows what they need.
Please don't feel sorry for us. We are blessed to dwell in the things unseen and know that it is far greater than THIS. This is a new place for us..down here are the bottom. We don't hate it. We don't love it. We need God more than ever...and we like the way that feels.