It was a rare thing for both my husband and I to get to attend prayer meeting tonight at our church....and as always it seems when we do get to go, the message is just for us, or in this case, for me.
I just love that about God.
Tonight in the short message before prayer, the Pastor shared about this day's reading from the "Experiencing God Day-by-Day" devotional book.
It was on obedience and titled, "When Christ Gives A Command" and the last paragraph was this:
Obedience to Christ's commands always brings fulfillment. When the Lord gives you instructions, obey immediately. Don't wait until you have figured it all out and everything makes perfect sense to you. Sometimes God will lead you to do things that you will not fully understand until after you have done them. He does not usually reveal all the details of His will when He first speaks to you. Instead, He tells you enough so you can implement what He has said, but He withholds enough information so that you must continue to rely upon His guidance. Your response will affect what god does next in your life. Your obedience may affect how others around you experience Christ as well. If there is any directive God has given you that you have not obeyed, obey that word immediately and watch God's perfect plan unfold in your life.
The Pastor shared about his "crisis of obedience" as I call it and asked for others to share theirs...
I'm living out mine as we speak.
My son has been attending an Applied Behavior Analysis therapy center as his "school" or "day program" - whatever you would like to call it. He's been there for several years and has made great progress in different areas. But as he moved into adulthood, it became clear that there isn't really an "ABA" or any program really, designed for their "adult" needs. Many like Brandon have been "ABA'd" all their life and they are tired of sitting in small rooms doing the same manding and discrete trials using the same things. They need adult-sized programs in adult-sized buildings with more social and peer interaction and less small room confinement. They need more current methods of language facilitation and more focus on exploring those possibilities. They need recreation, social skills, and community outings. It's a tough situation, those programs insurance fund have such strict guidelines that there is little room for freedom or practical applications. At least from our experience. There was a time and place for that strict a program, but that time has passed and I continually felt God's nudging in that. It's a tough thing to find a balanced program. The programs that are appropriate don't take those with behavior issues or more specialized needs. The programs that do accept those with behavior issues and specialized needs do not have flexibility.
I am the perpetual Goldilocks looking for the porridge that is just right for my little fish - where more often than not there isn't even any porridge to choose from.
Which is why it made absolutely no sense to do what I did...
At the beginning of the year we had a new insurance and they denied the claims at my son's therapy center. He went all of January and insurance denied the claim. Of course we appealed, but during the appeal I had to pull him out of school because if we couldn't get it overturned, I certainly could not afford to pay the tuition of the month he already attended, let alone another month while waiting for the appeal.
So until we got it sorted out, he was home with me...
Now instead of doing two shifts a day of "life with vaccine injury" I was doing three shifts. All day, all evening, all night, because for many of us, vaccine injury rarely sleeps.
To say that it was one of the most trying times in our life with autism/vaccine injury is a gross understatement. To feel trapped with no way out is a feeling that I hope never to experience again. To think this situation would be the rest of our lives was sheer terror and only those in my shoes will truly understand the meaning of that. My husband and I hardly saw each other when Brandon had a day program, but now that he didn't, when he came home I had to leave to go do what I needed to do, -- errands, groceries, work-out, escape! Then when I got back my husband needed to go to bed. We were reduced to being merely employees of Brandon giving shift reports as one clocked in and the other clocked out. That situation was not living, it was merely existing. It certainly wasn't a marriage in any sense of the word.
Yet it's a situation that far too many call "the norm."
I didn't want it to be ours.
While I prayed (begged) to win the appeal so Brandon could go back to his therapy center, I was blessed with some volunteers at our church who let me bring him there a few times so that I could have a break. It was those slivers of HOPEISM that made me hyperventilate less and think that I could actually survive this appeal process. But still.... as much as I wanted him back, I knew that God was whispering that it was time to move on. I felt God was right, but my survival instinct was that there was no way I could handle having no where consistent for him to go during the day. Even though he only made it to school 4 days a week at best because of seizures, it was four days I could count on. Precious hours those days where I didn't have "in your face" vaccine injury humming at the top of its lungs so incessantly that I often wanted to gouge my ear drums out with an icepik. Again, only those in my shoes can truly know how priceless it is to have a daily, consistent break. Or know what it's like to long for one...
We don't get empty nest.
We won't get golden years of carefree living and traveling.
Our situation is 24/7/365/for life.
What really made me know that God's whispers were right, was that after the very first time I was able to bring Brandon to the church to "hang out" with his friend from the Joy Ministry of our church - the very next day he independently sought out his lunch bag and brought it to me, then led me to the door. He knew the day before I packed his lunch to go to church with her, and so this was his way of telling me he wanted to go back again.
Never in all the years he went to his therapy center has he brought me his lunch bag and led me to the door.
Never.
But the one time he went to the church with this lady, the very next day he brought me his lunch bag wanting to go back....
After nearly a month home with me, my phone rang at like 9am one day. I have such faith that I saw the call was from his school and I refused to answer it. I didn't want to hear that we lost the appeal and Brandon could never go back. I figured hearing it from voice mail would be less of a blow... But she didn't leave a voice mail so I had no choice but to call back...
When I did, she said we won the appeal, he could return to school!
I asked when he could go back and she said, "Today."
We were there within two hours.
It was a blissful day of freedom for me. Just knowing that for several hours a day I didn't have to care for vaccine injury means everything. That we could return to our abnormal routine of actually being home together in the evening to still be constantly interrupted was much better than not ever seeing each other at all.
Life with vaccine injury was once again as good as it could get being the bad situation it is.
I thanked God for answering the prayer, but strangely I didn't feel the peace I expected I would feel. Jubilation, happiness, freedom that I didn't feel trapped for three shifts, yes.
But peace about it?
I'd have to say, no...
Funny thing about obedience is that you can know you're not in it when you don't feel peaceful about it. It was as if God was testing me. As in if he gave me what I wanted would I take it or do what he knew was best for me to do? What He had been whispering for me to do...
On Brandon's first day back, after he got home I e-mailed the school to ask how he did. I was hoping I would get some indication that they enjoyed him being back or that Brandon enjoyed being back! Some conviction that this was the right thing to do, this was the place he needed to be despite feeling God telling me otherwise...
I wanted something to prove God wrong.
The simple response from them with regard to my question was that Brandon had 683 episodes of hand-biting and 2 episodes of aggressive hitting. Nothing more, nothing less.
I know God isn't "I told you so" snarky like I am, but the words, "Be careful what you pray for, you may get it!" came to mind as I was reminded that God had been telling me to move on. It was me not listening.
Reading that e-mail was my crisis of obedience.
Would I trust God and do what I felt he was calling me to do in pulling him out, or would I keep the ear plugs in...
I had just lived nearly a month of knowing what it's like in having no where for Brandon to go. Consistent. Every day. Not just when someone could or would. I had just lived through that hell and now God was telling me that it could be permanent. I mean, during that time he was out of school, I had searched high and low for another day program. There wasn't one. I searched for a place he could go every day, there wasn't one. Other than the few times a friend was able to help, I was on my own. If my son were more higher functioning, it would be different. But my son is an every moment of the day kind of person. A humming every moment of the day kind of person... There is no putting him in front of the tv for a few moments of reprieve. There is no mute button when you need a few moments of peace. There is just constant.
So I did what any faith-filled person would do. For a few more days after that I ignored God's yelling at this point and kept sending him back to school knowing it was not what I was to do, but it was everything my flesh screamed for me to continue doing.
After he was back in his program a couple days, I couldn't ignore what I knew I was being called to do and I choose obedience. I decided to pull him out. At that time I didn't have a plan for what next. I had possibilities, but no permanent plans.
These lines from the above devotional were literally played out before me...
When the Lord gives you instructions, obey immediately. Don't wait until you have figured it all out and everything makes perfect sense to you. Sometimes God will lead you to do things that you will not fully understand until after you have done them.
(ok, so maybe not so much immediately, but eventually....)
I met with some servant-heart women about a possible plan for Brandon in this interim until I could find something appropriate and consistent every day for Brandon where he could have freedom, but still work on goals he needs to and that has opportunity for peer and community involvement. A sweet volunteer was going to be able to care for Brandon at the church for a few days a week, and others would help as they could.
I sent the withdrawal letter to the school.
From that moment on there was no set-in-stone guarantee of anything.
Just stone-cold faith.
I not only stepped a hesitant foot of Faith in the Jordan - but I found the highest cliff, ran for my life, and dove in the Jordan. Actually more a belly flop, but obedience is obedience, right?
I was sharing this deed I had done with my son, and he was like, "So you prayed to win the appeal so he could stay in school, then once your prayer was answered and you won the appeal and he went back to school you pulled him out?"
Yep, pretty much...
The sting of that belly flop of faith haunted me for a solid week. I had this feeling in the pit of my stomach that I made the most horrible mistake of my life. I woke up often in the middle of the night either in sheer panic or drenched in oh-my-gawd-what-did-we-just-do tears.
My mind knew it was the right decision, but my flesh just wasn't feelin' it...
It's been several weeks since Brandon has been in this interim, and while I still don't have a permanent, daily, program for him I do have a sweet attendant care provider who is caring for him a few days a week.
And most importantly, I have peace.
I don't know what tomorrow will bring as far as provision. It is scary out there how little to nothing there is appropriate for adults with autism who wander and need pretty close to 1:1 care. It is a scary thought to have to trust people, to trust that they will care for your adult and keep him safe. I just have to cling to the fact that among all the scariness out there, there is a Savior who has a plan to protect and prosper my son. I must remain hopeful, prayerful, and faith-filled that God has a place for Brandon and an appropriate program for him. One where he will love it so much that he again brings me his lunch bag because he wants to go...
Obedience is hard.
Not having control of your situation, your tomorrow, is hard.
I had been trying to make sense of my "Journey through the Jordan" as I call this time - and couldn't really. But then God used the tail end of a radio clip to sum it up.
It was Lysa TerKeurst and the part I heard was how when we think we can't get through something, how "But then God" helps us, delivers us, saves us, sustains us. I went to her blog and she had "But God" scriptures listed to go along with what she was speaking about in how we think we can't get through something, but then God....
I had to sit at my desk in stunned silence as I realized that from the very beginning of our "From the hell of vaccine injury to the HOPEISM of healing in its many forms" there has been a but then God provision.
Every. Single. Time.
* we were asked to leave a church because of Brandon, but then God led us to a new one with a ministry just for those like him
* we lost our typical friends from not understanding our life, but then God gave us an entire tribe of like-minded warriors who make us better for knowing them
* seizures have threatened to take Brandon's life time and time again, but then God has sustained him time and time again
* Todd was laid off unexpectedly from a job in a place that had become increasingly repressive, but then God brought him to a different job where he once again feels like a person not a slave.
And the but then God blessing we are receiving now because of the (eventual) obedience in doing what God knew would be best - is that the help we have during this transition time is later in the day so that Todd can come home from work and have an hour or two of peace in his own home. Which is as close to empty nest as he'll ever get! He doesn't have to immediately walk in the door to the demands of autism. That is something we've never had before. And it's more precious than just about anything.
I can think of dozens and dozens of examples in my own life, but will leave you with a few I chose of those that Lysa shared on her blog...
Genesis 31:42
"But God has seen my hardship and the toil of my hands and last night he rebuked you."
Genesis 50:20
"You intended to harm me, but God intended it for good, to accomplish what is now being done, the saving of many lives. so then, don't be afraid. I will provide for you and your children...."
1 Samuel 23:14
Saul was in hot pursuit of David.... "But God did not give David into his hands."
1 Kings 5:3-4
"You know that because of the wars waged against my father David from all sides, he could not build a temple for the Name of the Lord his God until the LORD put his enemies under his feet. But now the Lord my God has given me rest on every side, and there is no adversary or disaster.
Psalm 49:15
But God will redeem my life from the grave; he will surely take me to himself.
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Isaiah 40:8
The grass withers and the flowers fall, but the word of our God stands forever.
Jonah 2:6
To the roots of the mountains I sank down; the earth beneath barred me in forever. But you brought my life up from the pit, O LORD, my God.
Matthew 19:26
Jesus looked at them and said, "With man this is impossible, but with God all things are possible.
Acts 2:24
But God raised him from the dead, freeing him from the agony of death, because it was impossible for death to keep its hold on him.
Acts 3:15
You killed the author of life, but God raised him from the dead.
No matter how high the flood waters or how scorching the fire -- remember these lyrics from Tenth Avenue North that are so true when it comes to acting in obedience, in faith, in anything...
I have this hope
In the depth of my soul
In the flood or the fire
You're with me and
You won't let go
With much HOPEISM that the fulfillment of this obedience comes soon,
(like, really soon)
-- an imperfectly pursuing, desperately seeking, and begrudgingly obedient at times follower of Christ who is believing that she will have an epic "but then God" follow-up to this story...
