Sunday, January 26, 2014

justin update

Today I am updating from my cozy the Methodist hospital. I am exhausted, the kind of exhausted that only black coffee and praise songs can even make a dent in. I feel like I could just crawl up in a bawl and sleep for days....but in the same breath I feel like I could put on my tennis shoes and run a half marathon right now. Weird, I know. God is still holding us so tightly down here at the "bottom"...we continue to need him for every breath. We have no idea what tomorrow brings, next week or anything after that. We don't know if Justin will go home Tuesday, we don't know what his plan will be when he does get him. We don't know why this is happening. We don't know if it will happen again. We don't know anything...except that our hope lies in Him. Justin's every heartbeat is given to him by our Father. He has written a beautiful story and we want to skip ahead to the end to see what happens. But, we just cannot. God's storybook just doesnt work that way.
Here is the scoop...last Tuesday Justin had his chemo treatment. Wednesday he started experiencing pain, fevers and swelling. Thursday  morning he visited with his oncologist and she sent him straight over to have his port removed due to infection in the port. The port accesses his main arteries so infection would no doubt hit the blood stream. Justin's primary dr (who is literally a gift from Jesus who LISTENS to us and hears us) consulted with us and with his oncologist and Justin was admitted into the hospital on Thursday afternoon. We are sitting here for an indefinite amount of time watching blood cultures and white blood cell counts. IV's are busting left and right. Every vein in his arms have been poked and they are swollen and black and blue. The Internal Med Dr here wants to put in a pic line, but that cant be done until we can get more answers on this infection. We are stuck.
There is no place to go from here but to our knees. Justin continuously prays for grace and mercy.
We miss our kids. Please pray for them Pray God's mighty armor will protect their hearts and minds while mom and dad are away...again.
Justin is miserable this time around. He just wants to rest. He is on endless amounts of strong antibiotics and they hurt going in his little tired veins. He just wants to rest. We love you all, but this time around he just doesn't really want visitors. This is hard for me because I want you all here. My mind gets tired and weary watching him be poked and struggling to do basically everything...but God is wanting me to turn to Him right now and I just can't argue with that.
I havent really left except to bring the boys up for a few minutes. I will leave tonight because Justin desperately wants me to be at the Still Water Dinner. It is important to him that I honor this commitment and I am grateful for his selfless heart.
I love of all of your texts. I can't answer them all...we are too loved! I would be texting all day...but I read them and we love them. We love the scripture. It comes at just the right time.
An infectious disease doctor is coming tomorrow to asses the situation and make a recommendation. We are looking forward to that, but we are also not leaving any of this in the hands of doctors. God gave Justin a word for such a time as this. We are waiting expectantly on God's plan and we will scream glory from the rooftops when He takes us to the next place he has prepared for us.

Tuesday, January 21, 2014

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 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 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.

Friday, January 3, 2014

dancing with justin

For some reason I have not been sleeping well lately. Tonight, while I was restlessly arguing with myself about whether to get up and work or take some melatonin....this random song started going through my head. Tim McGraw's live like you were dying from 2004. Why. I don't really prefer country music. It bores me... unless my husband is whisking me around the dance floor.
The song is about a guy in his early forties who finds out he is dying and he begins to check things off his bucket list. He goes sky diving and rocky mountain climbing and he loves deeper and speaks sweeter and he reads the "Good Book" and he forgives and rides a bull and you get the picture. Cute song and apparently very catchy as it showed up into my brain 10 years after its release date. I very much remember wearing a short denim skirt and dancing around the sawdust circle at midnight rodeo with my cute boyfriend to this very song. Adorable. What a care free time of our lives! I doubt we recognized how carefree we were.
Here is where it gets a little less adorable.
My husband can't dance anymore and he is only in his early thirties (31 to be exact) and he sure as heck can't do any rocky mountain climbing. Depressing, right?
For some reason, no matter how tired and delirious I am right now...I just can't be sad. Somewhere along the road of doctors telling Justin to live like he were dying (oh yes, several have said as much) he realized that isn't a bad way to live. It isn't much like this song....because it's better. Living in daily never ending pain with gazillions of meds and appointments and no spark of hope in providing for his family in the near future...wait. That's not better. Waiting for the next "issue" to be discovered and getting 100% wiped out after being out of the house for 2 hours. Not better. Not a bit.
But, what IS better is the opportunity he has to look death in the face and's ok! I am not scared of you. I don't like what I will leave behind, but you are good.
It is just all too cliche for us to declare that we are going to live like we are dying. So, maybe we should all decide to live like the power of Christ is living in us instead. He traded himself for our lowly souls to wander this earth and rush around and be on time and have the laundry put away and make lots of money and wait. No, that's not right....That can't be the reason. Our Father must have had more in mind for us when He allowed His son to die that death. As that temple veil parted and the sky darkened...we were given LIFE. Heaven became accessible. We need no longer fear death. He shed blood so that we may live like we were dying. 

I don't know why this song popped into my head tonight. I don't know why this story is ours. I don't know how my husband smiles everyday. But, I do know that the ending to all of this is far greater than my wildest dreams. I may not get to be whisked across the dance floor to songs I barely like...but I am going to let this handsome man lead me in a dance far greater than any dance that ever hit the sawdust floors of midnight rodeo.

And we will sing a new song...

No guilt in life no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell no scheme of man
Can ever pluck me from His hand
Till he returns or calls me home
Here in the power of Christ I’ll stand!