Just logged in to type another blog and noticed this one was never posted from April 2015. So while it’s delayed and it’s not what is happening today, I want to share. And hey, I think we can all use the reminder that God is God and we are not.
We just had a hospital stay last week for four days. Four days for a stomach bug and dehydration. Having GA-1 is no joke. I remember getting dehydrated and going to the hospital for a 1/2 a day to get fluids and then managing my care from home with gatorade, water, soup and crackers. Not so for our little diva!
While at the hospital, I still had to be a mamma bear with the nurses, the pharmacy manager and the hospital administrators. I don’t quite understand why they feel they understand Reagan’s condition more than we do. I know they clearly don’t as there are only a handful of children in Central Florida who have the disorder, so in talking with a nurse I know their exposure to GA-1 is slim to none, unless they’ve had the pleasure of taking care of Reagan in a past hospital stay. Luckily, the Dr.’s tend to follow our lead as we speak with such presence and knowledge about Reagan’s disorder and it aligns 100% with conversations they’ve had with Reagan’s genetics Dr. I feel like we’ve had enough hospital stays now to understand the protocol in it’s entirety. Fluids: (she was at 75ML an hour), an IV bag of D10 (not D5 like a normal kid would get), IV of lipids if she’s not tolerating food or formula and Levocarnatine via IV (not g-tube). Seems simple enough, but when even those orders get messed up or take too long I’m not going to sit in our room twiddling…nope, I emerge like a bear and am the most vocal bear on the floor! Deal with it…grrrr!
We’ve been home for a week now and Reagan is back to her feisty self. Even though it’s been 10 days since we were admitted only now do I feel like we made it through a hospital stay illness. She has to build her immunities like any normal kid it’s just exceptionally frightening for us. It’s scary to know that we could leave the hospital with a different girl, one who could become more disabled due to an illness. So I am grateful to be home in our normal, with the same girl we went to the hospital with. I literally can’t express how grateful I am for that.
While in the hospital my girlfriends came to visit and they just hugged me and let me cry. They prayed over me and prayed for Reagan and Rob and I. As we took up an empty hallway, I said: “God has performed so many miracles in Reagan, thousands of them, I don’t want him to take them away! I want her to keep moving forward and never go backwards.” I logically could never fathom God taking away all that he’s helped Reagan re-gain. Losing all her gains I feel is my biggest fear. My friends said they couldn’t imagine that either. But, you know…God’s in control. I have to remind myself that so many times. He could take it away, but I pray he doesn’t. I pray he continually restores us like he did Job.
I think about Job a lot…he lost everything. “I loathe my very life; therefore I will give free rein to my complaint and speak out in the bitterness of my soul.” – Job 10:1
Hey Job, I can totally relate.
The book of Job goes on for 37 chapters of Job complaining to God, and then in the 38th chapter the Lord speaks. Holy moly does he speak. I’d encourage you to read it. There’s literally nothing Job can offer up when God speaks back to him and asks him a series of questions like,”Have you ever given orders to the morning, or shown the dawn its place, that it might take the earth by the edges and shake the wicked out of it?”
WHAT?! Clearly, we’ve never asked those questions or even thought about something like that! The sun rises in our world, but we don’t give orders to the morning (what does that even mean!).
One of my favorite questions God asks Job: “Do you send the lightning bolts on their way? Do they report to you, ‘Here we are’?” What a visual!
When God says his ways are higher than ours, they sure are! Job 38-42 puts me in awe of God and gives me the perspective I need.
Job lost everything. Reagan lost everything. Job got everything back DOUBLE what he had! And that’s what I’m praying for Reagan and for our little family. God give us back everything that was taken away and bless us in double fashion!
The Lord blessed the latter part of Job’s life more than the former part. He had fourteen thousand sheep, six thousand camels, a thousand yoke of oxen and a thousand donkeys. And he also had seven sons and three daughters. The first daughter he named Jemimah, the second Keziah and the third Keren-Happuch. Nowhere in all the land were there found women as beautiful as Job’s daughters, and their father granted them an inheritance along with their brothers.
After this, Job lived a hundred and forty years; he saw his children and their children to the fourth generation. And so Job died, an old man and full of years.