You're Not Alone

2017... oh I know I should have something good to say about you, but seriously you don't deserve much more than rolled eyes and a shaking head. You began with seizures, more than we had ever had. 30+ trips to the ER, 31+ shoulder dislocations. 8 shoulder surgeons, 78 phone calls to the insurance company, tears that can't be counted, and stress that no human can endure alone. After 200 units of botox injected, Two shoulder surgeries, 17 shoulder slings, two HEAVY metal braces, and one 32lb cast. I will give you that a great many lessons have been learned. 2017 has shown us who our friends are, and it has sanded us to our bones.

Yep, 2017 is not a year to look back on with much fondness.  

I know that I should and am grateful for the lessons learned, however right now I'm still licking my wounds. I've at least earned the right to be a tad bit sarcastic with 2017.  

In all that chaos and sadness, through the darkness so many kindnesses, so many people have stepped forward to try to ease our pain. Friends have called and begged me to let them help me somehow. A very dear friend paid for and donated the over $2000 in botox that the procedure required. When my friend Michelle texted me from her VACATION... I was so humbled by her concern. Her rare trip, her NEVER get to be away from autism, and she still worried about us. Michelle and her husband are hiking, and it reminded me of a trip we took to Kauai about 15 years ago. It was before autism beat us into submission and taught us that the "breaks away from autism" were to be extremely rare. Yet she thought of us and texted a quick word of encouragement. Thinking of other autism families even when it was her moment to forget about living in the war zone.  

That's what got me thinking about Kauai. About people who care about others when they hardly know them. In the autism world, we all experience so much suffering with so little understanding. So few people even accept WHY our kids are autistic. About that same number are willing to really LOOK at how much suffering and sadness go with it.  The everyday struggle, the exhaustion, the never knowing what is really the right thing to do. It wears on a family. It's the reason so many of us spend so much time on our knees. Only God has any answers for us.

I believe it was 2005, we had been given a trip to Kauai by one of my former personal training clients. She became a good friend, and offered us a trip at minimal cost. Ecstatic who could say NO to that? Hiking is what we love, and so it was one of the first things we wanted to do. We had only been once before and we didn't know much about hiking there or how early the sun went down. But some friends of ours had gone a few months before and told us of being caught up on the volcano in the dark, and encouraged us to never repeat their mistake. So, we started our hike around noon, it was suppose to be a three hour hike. Hour and a half up and an hour and half down. We encouraged the couple we were with to keep a steady pace. Unbeknownst to us they were NOT hikers. (Their white shorts should've been a clue that hiking was not something they did very often.). There is so much to see and lots of awe inspiring views. But we pressed them, trying to drive home the truth of how fast darkness can fall. We had been warned a few years before from a story told to us by some friends who were caught in that darkness. The blackness of the volcanoes when the sun dives into the Pacific is inky and unsettling. Our urgency didn't really seem so important, so we "lollygagged" up to the top, and we were left with one hour to make an hour and a half hike back down.

As the lackadaisical hiking proceeded, Randy and I began to pick up the pace. It had rained some, and so the rocks were snot slick. One of our friends did not have on proper shoes and did a lot of "dancing on the rocks" trying to keep from messing up those white shorts. An impossible feat. She was wearing red mud within minutes. Broke lots of finger nails, bled all over the place. The darkness chased us, like a pup after a fox and we were to unaware to see the danger. Why oh why didn't we pack flash lights? A mistake we have never repeated since. Lesson learned. *There weren't flashlights on cellphones back in the day.

At about 45 minutes into our descent the sun was barely peaking over the horizon and we were already in shadow. We all swallowed the fear that reality served up. We would not be getting down before the darkness enveloped us. The ledge was about two feet wide, and it's a good 900 feet plummet off the edge to get to the ocean.  
I swallow hard now, just remembering it. We eventually put our backs to the wall of rock and clasped hands as we side stepped down the volcano. Shuffling down takes a really long time, and as we scooted down we came along other inexperienced hikers who had also miscalculated their hiking time. Nearly three hours of nail biting, slipping, near death experiences and we still had hours to go. When we got about 10 minutes from the bottom, Randy and I ran the rest of the way. We had hiked it before and we ran to our car and pulled it up to the bottom to shine the headlights up as far as they would go. By the time the last hiker slid to the bottom it was 7pm. You could not see your hand in front of your face.

We had never even SEEN the 8 strangers who ended up clasping hands and helping each other down. 12 strangers. 6 couples who had been caught in the same scary situation, held hands for hours, drawing hope, peace and encouragement from each other. Two couples on their honeymoon, two couples on anniversary trips and our friends and us.

Total strangers who with sweaty death grips had encouraged each other. Kept each other from slipping. Saved total strangers from plummeting to certain death. We had laughed and cried for hours. It was strange as they came down to the bottom and the light put faces with voices and the supporting hands that had given us courage. It's an experience I've thought on a lot this year.

As the majority of the hands that have held me are not people I've ever met before. They are autism moms, from families that struggle with the same scary life I struggle with every day. They clasp my hands and encourage me. They send me messages on facebook from as far away as Australia. They offer peace, hope and encouragement. Someday I hope to "shine the headlights" on their faces, and actually hug them for getting me through.

Britton has had 3 good days in December. THREE, that's it. It has been the last month to end a year that I will NEVER forget and pray to never repeat. There have been more difficulties than I care to recount. On top of how much pain and sickness Britton has suffered. Randy and I have had so little sleep that we both have had days that we just sit down and cry. We've argued, we've yelled at each other. *We don't argue and we don't yell, we never have. It's been a solid year where we averaged less than 4 hours of sleep nightly. Because we are operating on less than optum ability to think or function... we've made lots of mistakes, forgotten to pay bills, waited to the last second to do important things. Taken care of the urgent while the important was left simmering on the back burn er. We've made family and friends, people we love mad. Hurt peoples feelings without meaning to... Never more than this year has it been driven home to me that "normal" lives cannot possibly mix well in the "war zone" of autism.

Not all autism is as complicated or severe as others. 50% don't have seizures, (thank goodness) 50% are verbal. (sounds like a dream to me.). I don't know how many are as medically fragile as my son, but health is indeed a gift. Autism families learn how to manage every single day, what would be a tragic occurrence to any other families life. Autism families stand together, pray for each other, help each other. Arm in arm they encourage, they suggest help, they lend a listening ear. They even offer each other money, and they mean it. This year more than any other I've experienced the concern, the love the strength of those other families. I cry out and they clasp my hands and promise to hold me in the darkness.  

This morning when I woke up there was a song playing in my mind. I don't remember hearing it before so I googled it and up came -Oh My Soul. I've cried off an on most of the day since reading the words. They have been medicine for my soul. I'll share the chorus and my favorite verse.

Oh, my soul

You are not alone

There's a place where fear has to face the God you know

One more day, He will make a way

Let Him show you how, you can lay this down

'Cause you're not alone

Here and now

You can be honest

I won't try to promise that someday it all works out

'Cause this is the valley

And even now, He is breathing on your dry bones

And there will be dancing

There will be beauty where beauty was ash and stone

This much I know
https://youtu.be/DjNZf878ISQ

We've had some really amazing years in the past. Years of health, and progress. Two years ago Britton began to type, and it was the best year we ever had since autism had tried to drown us. Typing changed everything. Knowing who he is, and what he knows made autism seem like an even crueler punishment. But we had reached him in his silent prison and the world began to hear him.  

25 years of silence and on April 15, 2016 he typed his first sentence. It has seemed like a battleground for his health almost from that day forward. It is not lost on me that it is his left shoulder, his dominant shoulder has been nearly destroyed. He has spent months without being able to type. Between the pain and the inability to move the arm, typing has been almost lost. 

Once again, autism has silenced my son. As I look forward to 2018 I believe for much better things for all of us. That the arm will heal, that seizures will be a thing of the past, that typing will again flow. That Britton will blossom and step into the destiny that God so graciously placed in his path. That we will remember what happiness feels like, that we will be so changed by the sanding of 2017's trials, that compassion will pour out from us onto others who suffer. That we will be able to comfort others with the comfort we ourselves have received from God. I pray that God uses this. This is the place where FEAR has to face the God I know. That is a big thing for me, and it is an agreement God and I have. That He promises NEVER to waste any suffering. He promises that I can trust Him with the fear and pain. He promises me, and He also makes the same promises to you if you choose to believe Him.  

So in the darkness, as I reach for the invisible hand of God. I clasp the hands of strangers in His stead. Strangers from all over the world. Strangers who suffer the same grief, the same difficulties. Each having to watch their own child drown under the ailments which have been categorized as autism. It's good to know that we understand each other. It's good to know that when I reach for help I will always find it. Because in holding hands, and seeking healing for our children, the love of God flows through each hand to the other. Bringing God's peace, God's love, and God's healing for our souls.