This Disability Has Me Down

It's been a rough week - I really wanted to entitle this entry as "Spina Bifida is Kicking my Butt"...but if the kids read this, they will reprimand me for using "potty words"!! :) Monday, it started with a problem that I noticed while looking through our EOB's (Explanation of Benefits) on our insurance web-site. If you really want to put yourself in a foul mood - look through your insurance claims! I am a fix-it type, don't like to have any loose ends, and so I spent two days trying to figure out why Medicaid is billing our Insurance for services they should be covering. It was enough to make me go insane, have stressed filled shoulders, and in the end, it's not really resolved, but I do understand a bit better what is going on. I will say that contrary to what most have experienced in the past, I spoke with a nice lady at Medicaid - she treated me like a human being, and explained things the best she could. I will also say that those reps can't even look at Medicaid billing statements, though, it's like Fort Knox. They told me that there's only one person in the office that can see who Medicaid has billed and how much they have paid out. His name is "Tommy". The situation is complicated, and we have decided to let sleeping dogs lie, especially since I think that all is right, but it was enough to make me nuts.


Then, Toby has just been challenging of late. He doesn't want to obey the nurses, and fights them on everything - from brushing his teeth, to when they do trach care, to whatever care they have to give him. I don't know how to handle this. I feel like the "husband" constantly having to back up the nurse and tell Toby to obey, cooperate, and do what she says. We've tried time-outs, spanking, privileges lossed, etc. (and while I'm on the subject - how do you spank a child who's butt is numb and can't feel it!)...Discipline is tough with Toby; I'm praying hard for wisdom to know how to get a hold of his heart, to mold and shape it to want to obey those in authority over him. I feel at a loss to know how - the methods we used with the other kids don't work...so we start at the drawing board once again.

This morning was the icing on the cake. Every morning (just about) Toby eats a pureed breakfast with waffles, bananas, vanilla yogurt, and milk. Most mornings we have to hound him to eat it, and this morning was no different. I don't know what I'm doing wrong - it's pureed, it's not lumpy, doesn't have chunks, why won't he eat it? The OT encourages me that it's a LONG road to getting Toby to eat/chew solid foods (don't we know that already), and that he's already made significant progress, be patient. I'm wondering if we should just give up, go back to all tube feeds, and be done. I tried discipline this morning to get Toby to eat, I tried ignoring him. Maybe if he didn't see/know how important it is to me (so we don't have to bolus formula through his tube) he would eat. Neither worked..I had to leave it to the nurse to deal with so I could get Conor and Garrett to school.

The icing on the cake was the pharmacist gently reminding me that his liquid solution of omeprazole is a compound, and CVS' policy is that it takes 24 hours for a compound to be made up. She wasn't overly nasty to me, but in that broken down place I was already in, it sent me over the edge and I cried all the way home...it's one of those weeks - special needs' sucks sometimes.

I don't want to leave you with a downer, so I want to share about some encouragement that has been picking me up. Toby received the new Newsboys CD for Christmas "Born Again", and several have been encouraging. Here are a few lines from some of the songs: (titles of song underlined)

Build us Back - "We've been crumbled we've been crushed, the city walls have turned to dust. Broken hands and blistered feet, we walk for miles to find relief. When the thief takes, when our hopes cave, you build us back, you build us back. Though the moutains be shaken, the hills be removed, your unfailing love remains. After all that's been taken, your promise still sacred, you build us back with precious stones."


Running to You- "When everything is broken, there's a door wide open, you'll find me running through, more than just emotion, my broken heart has chosen. Jesus, I'm running to you"


Our Your Knees - "When your heart breaks He'll hurt for you, dreams are out of reach, He'll pull you through. When you lose hope all you gotta do is get on your knees again. Not long now and you're gonna see, no mountain's too high for your or for me, or fall too far if you can believe, and get on your knees again....When you think about giving up, get on your knees"

These last few days, I've been stuck in a valley.  It's been another time of grieving, grieving dreams lost, grieving for a life that was supposed to be normal and predictable - with a child that could eat normal, talk, walk, run, and play - living in a world not made for a kid in a wheelchair...but God is there - He beckons me to my knees to lay it at His feet once again and experience the miracle of His mercy and grace.