Last Thursday (8/11/11), I wrote a post begging for prayer. In the last month and a half, Peyton's in-home nursing hours have gone from 84 hours a week to 70 and now they're at 56 hours a week for another week and then they'll be further reduced to 40 hours a week. So, by the 28th of this month, her hours will have been cut by 44 hours per week. If you are familiar with Peyton or her story, then you know how much we need those hours and how insanely ridiculous 40 hours a week is in order to fully meet her needs.
This has totally been a situation where I've just had to put horns on it. This situation, in my mind, exists to frustrate and anger me and to tear me from the Lord. I know it. I know that is what this is. It's also part of a massive budgetary crisis in the State of South Carolina whereby kids like Peyton are unable to receive the services they should be getting because 25% of the population is on Medicaid! Yes, they are receiving services, but not to the extent they should be (i.e. in-home skilled nursing as in Peyton's case). But more than that, this crisis we are in is most definitely from the enemy.
I'm still not happy with the cut-backs. I'm not happy that the best way to get Peyton the hours she needs is to do some research and move to a wealthier state like Maryland or New York. No, we're not doing that, but that's seriously an option that we could be considering right now. I'm not happy at all that Peyton's the one who will suffer. Not that I can't take care of her myself, but I am not super woman and I can't be in all places at one time and I can't keep existing at the pace I will exist at once we're reduced to 40 hours! Been there, done that. I'm on an anti-anxiety/anti-depressant now, thank you very much.
I was rightfully upset, especially those first couple days. I haven't fully come back down from that. Now, the situation is just sad. After Ron spoke directly with the person at the Medicaid office, it's clear how serious the budget crisis is and how it is affecting not just Peyton but so many other kids like her. It's heart-breaking. Peyton and these other kids need lots of prayer. I'm focusing on Peyton - it's her life I'm most concerned with. It's her life I'm afraid will end sooner than I'd like, so it's for her sake I wish we could provide her the very best of everything to help her in that capacity.
It makes me so sad that some things just can't be changed. We could appeal the situation, but that doesn't change that there's no money for the State to provide the services we desperately need. We could risk losing more hours. It makes me feel so helpless.
|Peyton during her July 25-29, 2011 hospital stay|
In an effort to help, Ron called and spoke with someone at the Medicaid office. I had wondered if we could get a non-RN nurse to provide hours so it wouldn't be as expensive (in addition to the 40 hours of RN nursing we will be getting). Well, we can't get an LPN, but we can get an aide. It's clearly not ideal because they won't be able to do meds or provide any type of skilled nursing care. It's more of a glorified babysitter. But it's something. It is being offered to us and we are taking it. I am not turning this down! I think we'll get 25 hours a week with an aide in addition to the RN services. This is good.
In addition, my elbow surgery coming up on the 26th is going to help us to extend the time we have at 56 hours a week. The hours were to drop to 40 on the 28th, but the surgery means that we won't drop to 40 hours a week until two weeks after the surgery. Trying now to think of what other surgery I can schedule before that time runs out!! HA!
This is truly a situation that could rip me apart. It could cause a huge rift in my family. It could tear me from God were I to start cursing Him for putting us in this situation. Another struggle on top of the many we've had to endure already. It could do all that and more. This situation isn't ideal. It's not good. I struggle with how this can possibly be part of God's plan. But it is part of a plan. Maybe it's to test us to see how we handle it and find the light of God through it. Maybe it's to build character. Maybe it's to strengthen us in spirit. I'm not sure what it is.
I love "Praise You In The Storm" by Casting Crowns. I think of this song so often during our trials. I cry when I hear it. I cry out to God. This is just one of those songs that really speaks to me and what we've had to endure.
What I do know wholeheartedly is that I serve a mighty and powerful God. I know that if it is His will that we are in this situation, that He will provide us with a way to endure whatever struggles we might face in the process. I know that God is bigger than this problem. I know that I simply cannot afford to let evil into our lives through this situation. This is a perfect opportunity to let the enemy in. I am choosing to bar the windows, doors, gates and any other point of entry into this situation. It's not happening. The enemy is just not welcome in my life - especially in this situation where my child's life is concerned! If something is going to happen to her as a result of a reduction in her in-home nursing care, then it's going to be on God's terms. His will be done.
Please keep us in your prayers! Thank you.
New Living Translation (NLT)
10 A final word: Be strong in the Lord and in his mighty power. 11 Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil. 12 For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places.
The Whole Armor of God
13 Therefore, put on every piece of God’s armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. 14 Stand your ground, putting on the belt of truth and the body armor of God’s righteousness. 15 For shoes, put on the peace that comes from the Good News so that you will be fully prepared. 16 In addition to all of these, hold up the shield of faith to stop the fiery arrows of the devil. 17Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God.
18 Pray in the Spirit at all times and on every occasion. Stay alert and be persistent in your prayers for all believers everywhere.