(Our hospital room is full of Scriptures like this.)
When something tragic happens ... something really hard ... a difficult situation, whatever it may be, it's hard to find words to express how you're feeling and what's going on inside your head.
There's all the typical "Christiany" things you can say ... the same things people will say to you, hoping their words will help. But, unfortunately, they don't. And, unfortunately, everything you read that you think can help carry you through, really doesn't. Unfortunately, there are just no words sometimes. No words you can say to yourself, no matter how much Scripture you have memorized for such a time is this. And, no words that other people can say.
I find the only words I can say lately are "this sucks" and "there's nothing to say."
Have I given up on God?
Let me be TOTALLY honest with you .. the answer is NO.
However, I have had moments where I've felt such despair and felt like I've lost hope. That's the worst place to be. Once you've lost hope, there's nothing to keep you going.
I realize our ONLY hope is Jesus.
When all else fails, He's there, despite what I see and our situation.
There are many times I'm just angry ... angry that this happened, angry about everything the enemy has stolen from us, angry for what my daughter is missing right now as I scroll through social media and see everyone else's daughters getting to experience the things they should be right now.
I have said "it's not fair" in my mind a thousand times. But, we all know life just isn't fair. Not at all.
There isn't a day that goes by where tears are not a part of our day.
We feel sad. We feel alone.
We KNOW that God is with us so please don't misunderstand me.
You can still feel alone all while knowing He is still holding you.
That may not make any sense at all, but that's the best way I can explain it.
We do feel lonely.
This situation is hard and we are far away from pretty much everyone we love. That feels lonely.
The other part of this that hurts is seeing all the families who have come and gone in the matter of time that we've been here. Some have gone with not-so-good news, while most leave out of here better.
My heart has not only ached for our own situation, but for those here who receive the devastating words, "we've done everything we can do" or "they're just not responding to treatment." I cry just typing those words. There are families here who have experienced things far worse than we have.
Tomorrow marks exactly three months that we've been inpatient. January 5th we came with an overnight bag just in case we were admitted and we go into our fourth month continuing to not know when this will end.
La Petite Belle has had lots of ups and downs through this.
The doctors expected we could be released by the end of this week, but don't think that's going to happen. She's been put back on IV meds and her steroids increased again because her GVHD has flared up again. This all happening after being weaned for so many weeks was heartbreaking. Her pain meds have been changed up a bit and a new one added which I think may be helping more than before. Thank God for that. She has started a new anti-viral to get rid of that BK virus that is the culprit causing so much pain. There are risks to it, so we're hoping it works quickly so she can get off of it.
I am ready for a "normal" and boring life. I am ready for a healthy daughter who can enjoy her life again. I am ready to feel like we're a family again. I am ready to get out of here and have a place that we can call home and all be together.
But, I am also realizing that I have to be content. Being content in every situation is what Paul talked about. That's where I'm struggling. I am not content about watching my daughter suffer day-in and day-out. But, I am trying to be content in knowing that God's got us in His hands and everything is under His control. If I say I trust Him, I have to be content.
No matter how dire the circumstances are ... no matter how heartbroken I am ... no matter how many tears I cry ... I STILL have to be content. I have to be content in knowing He's got this. I can't be tossed back and forth every time we get a bad report. I have to trust and continue to be content.
Now, it's not easy. Not at all. Like I said, I literally cry every day.
Then, after I wipe my tears, I rest for a while.
So ... as far as an update goes on our girl and what's expected, I honestly don't know much anymore. Things change so quickly and I'm just trying to rest that, no matter how long we're here, that she will recover and be better for it. This isn't a short journey. In fact, this month marks a year since her diagnosis.
We will keep pressing on ... trusting, crying, screaming, praying, believing, resting, hoping.
Thank you all for continuing to pray and believe for complete healing for La Petite Belle.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg. All funds go to cover medical bills and expenses.