A Day In The Life

The last couple of days have definitely been interesting.  You never know what kind of day you’re going to get with Michael.  Some days his brain and body are in sync and you’d never know he was autistic, but then you have days like today….

We started out OK, but he totally hyper-focused and colored for two hours, and I should have known I’d pay for it later.  He went nuts and overcompensated with the sensory processing disorder kicking in.  He was running everywhere, touching things compulsively, pushing his brothers, screaming, squeaking, and losing his communication and self control.  When his therapist showed up in the early afternoon, he sneaked into the cookie jar and ate six Hershey kisses while she and I were in one of the bedrooms talking.  What followed was a 45 minute meltdown which required physical manhandling.  Thank God the therapist was there, it was the first time she had seen him lose it that badly.  She showed me how to wrap my body around his to keep him from breaking free and punching me.  She also kept the other kids out of the room every time they tried to come in.  Michael really took me for a ride, screaming, crying, writhing, wrestling, and flailing with almost no breaks for three quarters of an hour.  We were finally able to talk him down (I would have never been able to do this if I was alone), but by the time we were finished, I was exhausted, shaking, and nearly crying myself.  Thank God Nate came home this evening in time to handle another meltdown because honestly, I don’t think I have another fight left in me tonight.

As I write this, I’m sitting in Gabriel and William’s room, trying to train Gabriel to stay in his bed.  He’s new to the toddler bed and he seems to enjoy keeping William up till very late and jumping into his crib and squashing him.  It’s been a very long day and there’s still a lot to get through tonight.

I have to say though that it helps to remember that this is all important.  It’s a training ground and the foundation for discipline and growth for all of them.  The hard work and effort is totally worth it, and I look forward to seeing the fruits of all the labor in the hopefully not-too-distant future.  I try to use these opportunities to hold these boys up in prayer and remember that none of this took God by surprise, and none of these experiences is wasted.

Hang tough, all of you.

What I Dreaded Has Happened To Me

I love it when God breaks into my existence and rescues me from myself.  I seem to need it a lot, and He gave me a much needed word in church this weekend.  It was Youth Sunday, and I enjoyed watching all the young people using their talents to bring glory to the Lord, and at the end, the youth pastor spoke to us parents about fear.  He told the story of Job, of how he was a great man, in wealth and integrity, and then of his demise and how he lost everything, including his children.  What hit me was when he quoted Job 3:25.

“For the thing I greatly feared has come upon me, and what I dreaded has happened to me.” 

See, I’ve been living in fear again.  It happens a lot.  Despite the fact that God has provided for and encouraged me every step of the way along my children’s health journeys, it seems that all I need is to see Michael regress or hear a new diagnosis for Gabriel, and I’m there all over again, setting up house right in the middle of fear.  It’s one thing to have a concern, to let a negative possibility drive you to overcome and conquer a thing, but it’s another to let fear run amok in your mind, to take over your thoughts and bring you to paralysis.

The last few weeks have been difficult and taxing.  Michael has been sliding backwards again, and this time he’s becoming violent.  It’s hard to watch and hard to deal with, and it’s taking a physical and emotional toll.  I had always assumed that Gabriel would naturally grow out of his limitations, but I just had the talk with his therapist that there’s a chance his brain may not fully recover from the damage the scar tissue created.  I’ve been carrying these thoughts around in front of my face, and they’re blocking my vision and not letting me see beyond them.

It’s times like these that I allow myself to get sucked into a storm of all too familiar questions.

What if Michael doesn’t get better?  What if he continues to be violent when he’s older and bigger and I’m no longer stronger than him?  What if he’s never able to be an independent adult?  What if Gabriel’s brain doesn’t recover?  Will he always be slower than everyone else around him?  Will he be able to function on his own?  Will William have to care for his older brothers?  Will he resent having to care for his older brothers?  What’s going to happen to the boys when Nate and I are gone?

It doesn’t seem to matter that God has reassured me over and over that He’s going to take care of all this.  It’s physically in front of my face day after day, and sometimes my faith wanes and I can no longer see the future that I feel God has promised me.  That’s what I let fear do to me, and it happens more often than I’d like.  I always used to be amazed at how often the children of Israel would whine at Moses while they were in the desert, how often they would forget all that God had done for them, sometimes almost instantly.  And yet, I can see how I do the same, letting the reality of what’s in front of me dictate my level of faith and my attitude and causing me to forget the greatness of God.

Thank God, that’s not where the story ends.  Our youth pastor went on to redefine fear, a holy fear.

 

The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction.  Proverbs 1:7

In the fear of the Lord there is strong confidence, and His children will have a place of refuge.  Proverbs 14:26

The fear of the Lord is a fountain of life, to turn one away from the snares of death.  Proverbs 14:27

The fear of the Lord leads to life, and he who has it will abide in satisfaction; he will not be visited with evil.  Proverbs 19:23

By humility and the fear of the Lord are riches and honor and life.  Proverbs 22:4

 

This is the fear God wants us to have.  A holy fear that acknowledges Him and His role in our lives.  The kind that brings life.  The fear of God and His holy awesome power has the ability to block out the things in front of me and let me say,

It does not matter what I see with me eyes.  My God is greater, and my God is good.

I know that I’m human, and I’m going to need to be reminded of this all over again, that’s why I’m writing it down.  But I am eternally grateful that our God has a limitless supply of forgiveness and love, and He’s not ever going to get tired of rescuing and redirecting me.  I know I can trust Him with my children because His plans for them are good and to give them a future and a hope.  And when things look bad all around me, I know I can say:

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.

I Asked God To Break My Heart With Something That Broke His, And He Did

Yesterday, I spontaneously decided to go to our region’s annual Autism Awareness walk.  I’ve really been thinking and praying a lot lately, and I know that I am dealing with all these special needs for a reason.  I am looking to see how God wants me to use my experiences to help others.  I wanted to see what this community looked like, to see what the needs were, and I was just overwhelmed.

The need is so great and on so many levels.  As I walked around, I could see families everywhere, supporting their handicapped loved ones, out early on a freezing cold Sunday morning because they want to see them get better, to do something to stop a growing epidemic that no one truly understands.  There is great love and great hope, and I commend these families for doing the best they can with the information they have to make life better for those who are on the spectrum.

And yet I was incredibly frustrated.  Here is where we wade into the emotional and controversial and so for now I will keep things vague, but I was saddened to see people who, I felt, were misguided.  There are so many programs out there, and desperate parents are running from thing to thing, searching for an answer, and yet there are many therapies that I feel don’t help, or worse yet, propagate problems.  The place was filled with junk food, vendors handing out candy to children while politicians made promises they couldn’t possibly keep to people who are ready to grab at anything that appears as help.  Two things that can cause terrible damage.  The lack of education was saddening.

The need is so great, so overwhelming, and I could feel my heart breaking over it.  This isn’t the ministry I would have chosen, and yet I feel as though I have been chosen for it.  It’s the work of a lifetime, and it begins with my own family, and yet I know it is never, ever meant to stay confined there.

I am watching, learning, thinking, planning, and praying, always praying.  There is work to be done here, and it will need the hand of God.