I need a saving grace
A hiding place
I don't have forever or time to waste
So don't let me be lonely
I wanna shake this winter coat off my sleeve
Dust off a record and just be free
Oh don't let me be lonely
No don't let me be lonely
Those lyrics are from a song by The Band Perry, Don't Let Me Be Lonely. I think lately they've been my "Life with Autism" lyrics. I have felt at times that I just want to hide from the disappointments. I don't have forever or time to waste on these blasted seizures that plague my son. I want to shake the winter coat of "Life with Autism" off my sleeve. I want to dust off my son's limitations so he can just be free.
What made those feelings worse is that the other night after he had been sleeping so very well for a couple nights prior - he decided to be up all night. I had thought I would capitalize on my opportunity to catch up on sleep by taking a Benadryl so that I could get some deep sleep going for once. Bad idea. I started hearing voices. At first I thought I was in a horror film with the villian-doll "Chucky" giving me a tour through Alphabet Town. I kept hearing music and letters of the alphabet and then after brief moments of silence an evil voice saying, "Come and visit the town again, Goodbye!" Over and over again that's what I heard. When I finally realized I wasn't in the middle of a nightmare or a horror film, yet still hearing that evil voice, I opened my eyes to see just what it was I was hearing. In my Benadryl-stupor I half expected to see Chucky standing in the doorway smiling at me with his evil blood-scarred face. But no. No Chucky doll, no horror movie, no nightmare. It was something far scarier. Autism.After.Dark. It was Brandon in his room down the hall, up at 2am playing with his electronic alphabet game. In the dark. As I got up and stumbled to his room to check him, change him, the sheets, and destroy, er hide all the electronic toys, I remember thinking on my walk back to where I was sleeping ---- Why God, why? Why do we have to do this again? He was doing so good. I can't express how disappointed I was as I continued my barrage of questions to God. Are you there? Do you hear me?
I felt so lonely despite knowing that I am far from lonely. I have a wonderful husband, I have family, I have prayer partners in our church, and I have an autism community of friends. Friends I may never get to see in person, but who are always a click away. Yet when it's "Life with Autism" and you're stumbling around at 2am arguing with God in a Benadryl stupor, - you feel alone! At least I did. I guess that's why I have to constantly bombard myself with HOPEISM, with Never Quit, with NDCQ. I have to have a mental attitude superior to my circumstances if I am to thrive in this Life with Autism. If I'm to survive 2am wake-up calls. Those times of disappointments, -the things most often not written about or shared about -- but yet that are as profound and powerful as the success stories you do hear about. We can read all day long about the many hard earned successes and victories in autism -- and we should -- those stories give us hope. I've shared many stories on this blog of hope in our Life with Autism. Brandon has come so very far. But what if you have been on this journey for so long and have done so much - yet still must battle two steps backwards for each step forward? That has seemed to define our journey for whatever reason. What Hopeism is there to impart in that? We tend to not speak of those things. Those stories aren't as pretty as the other ones. We make it sound like if you do this, go there, and spend that, ---that you too will have those successes. Many do. Many don't. And I think "the don't" stories are just as important. How you get through those times. How you still hang on to Hopeism and never let go. How you never quit.
Like Sunday... Oh how I anticipated last Sunday. I have big goals for Brandon. Huge. But for the day-to-day practical goals, I count our days as seizure-free days. I hang on to the Hopeism of 5 days seizure-free. That's a lofty goal for us. And then I sacrifice so much and work so very hard in achieving it. Watching his diet so nothing triggers yeast to flare. Spending such great amounts of time executing "Mission: Supplements" daily. Multiple times daily. Researching proteins for calories for him and the most pure elemental and amino acid protein powders for him. Careful not to over-stimulate. Reading. Researching. Praying. So last Sunday when we hit half a month, fifteen days seizure-free, I cried tears of joy. No one could be more proud of such a victory. No one could be more
humbled by that victory. I savored it as any autism mom would savor any
such hard fought victory. I savored it, celebrated it, and then set
out to break that record. Earlier this year we hit 28 days seizure-free. Almost a month. We haven't hit that since. Once we hit a full week seizure free, my goal was then two weeks. Then a month. If we can make fifteen days, half a month, then we can make it a full month seizure-free. I have to live by that kind of Hopeism no matter how elusive it has been these past four years of relentless seizures. Then Monday morning came. With it, cluster seizures. Talk about a buzz-kill. Laying there beside him in bed that day reminded me of that song again. I had to laugh, in the song there is a line that goes like this: Well the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, Don't let me be lonely... I had to chuckle, the sunrise truly did bring a bitter end to our seizure-free streak!
(But not to my HOPEISM!)
I'm thankful for my faith that allows me to believe in a God who is deeper than my disappointments. Who loves me through my loneliness. My greatest success stories in my Life with Autism have been those that had nothing to do with achievement, but everything to do with having an attitude of accomplishment. And that is really the only thing I have total control of. My NDCQ coin sits on my desk, and on one side it says: I can only be defeated in two ways. If I give up or if I die. And really, as a Christian, death can't even defeat me, which leaves, "If I give up" - which I won't. There is such sweet success in that. Success worth sharing. That's what I want Brandon to somehow know. When he screams in pain or convulses in seizures, I want him to know that I may not have been able to fix it or take them away, but I never quit trying to. That while I couldn't take his autism burden from him, I carried that burden with him. That's also what I want my "other son" Matt to have seen in my life. To always see. That sometimes things don't work out the way you hoped, but you still press on. You have an attitude superior to your disappointments.
It was so odd being reminded of those things by a Country song with lyrics that in places could be deemed quite depressing. But for whatever reason, that song cheered me up from recent disappointments, short-lived victories, and regression in areas I thought we were past. Many lyrics in that song made me think of verses to cling to in those times I feel lonely... In fact, late at night I've been singing that chorus "Don't let me be lonely" as if in prayer to God...."Please, don't let me be lonely in these thoughts, through these disappointments...." One morning I woke up after what seemed like only a few fleeting moments of sleep... I can't tell you that I heard God's voice in the night, I didn't. But I can say that I know with all that is in me that God did reply whether I heard it or not. I can picture him looking down and in a soft whisper answering, "I won't...."
When we give God the keys to our car and the keys to our heart and let him drive, He promises that he won't ever let us be lonely.
Ever.
He promises:
I will give you rest --- Matthew 11:28
I will help you --- Isaiah 54:4
I will supply all your needs --- Philippians 4:19
I will never leave you or forsake you --- Hebrews 13:5
I will strengthen you, I will help you, I will uphold you with my righteous right hand --- Isaiah 41:10
I will fulfill to you my promise, I will hear you, I will be found by you --- Jeremiah 2
I will direct your steps --- Proverbs 3:5
I will take revenge, I will pay them back --- Romans 12:19
It will be worth it --- Romans 8:28
He is my saving grace:
"For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God - not by works, so that no one can boast."Ephesians 2:8-9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9
He is my hiding place:
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."
Psalm 32:7
He is the freedom for Brandon that I so desire:
"Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom."
2 Corinthians 3:17
When I'm laying there weary and worn as the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, and I'm asking God to not let me be lonely ---- all I need to do is "be still and know that He is God."
Psalm 46:10
I just love that song because it reminds me that I am never lonely. As in the chorus of that song, He will never let me be, let me be, let me be lonely -- ever. Not at 2am. Not on a Monday morning abrupt ending of a seizure-free streak. Not in the good, the bad, or the ugly. Not in anything. Not ever.
"I am with you always, even unto the end of the world.”
Matthew 28:20
There is such HOPEISM in that!
My HOPEISM that's such a beautiful thing!
HOOYAH
&
HALLELUJAH
Click here to listen to Don't Let Me Be Lonely
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