I wake up to shrill screams and high pitched shrieks.
My husband had gotten up with Lilli at 6. I had been up earlier, gotten the baby back to sleep. and had dozed off.
I lay there, trying to block out the screaming, thinking of thankfulness.
Five things. Think of five things to be thankful for.
Ok think of three things.
Ok... think of...one thing. Just one.
The air conditioner hums in my window, almost drowning out the screaming, but not really.
Air conditioning. That's what I'm thankful for right now.
I am thankful for the air conditioning unit in my bedroom window. All six of us have been sleeping in this bedroom for the hottest weeks of the summer. We only have two, and the other unit is in the kitchen. Even though I wish for central air on many days, that is a first world problem. I am thankful to have a cool bedroom to sleep in, even if it is as an entire family together.
More screaming. I cannot block it out. I sit up.
I stumble blindly as I put my glasses on and head towards the awful early morning sound. It's coming from Chloe's room. I glance at my husband down the hall in the living room, He is sitting in a chair, calmly putting on his shoes like nothing is happening.
"What?" I ask simply with exhaustion and confusion.
"I don't know. I was getting ready and she just started screaming. I have to go to work," he says distractedly as he ties his shoelaces.
This "waking up to a twelve year old, screaming crying" scenario happens almost daily. We are used to it. It is our lives. We take turns letting the other spouse sleep while getting up with Lilli, who never sleeps in. She wakes up loudly anywhere from 3am to 6am...a rare 7am if we are super lucky. She instantly wants a movie, and if it's not the right one, look out. There is no reasoning with autism. Life with autism is a never ending walk on eggshells, keeping all the spinning plates balanced on sticks. When we have visitors or we visit someone, we hand her the iphone with Youtube immediately. No one wants to hear that crying. So visitors don't know what it's really like. Because on regular days when it's just our family, we say "No. No you can't have the iphone at 5am." And we endure the meltdowns if we have the strength.
I push open the bedroom door.
She is laying on the floor curled up in fetal position, shrieking with all she's got in her.
I stoop down and put my hand gently on her leg. She pauses. I ask her what is happening, even though she can't speak to answer me. I brush back her hair from her wet, tear covered face. She does that hiccuping sigh thing kids do after a hard cry. The first thing I do is pull her long bangs back from her face and pin them up with a barrette. Her face is covered in gold glitter. I inspect to see if maybe she got glitter in her eye. No. doesn't seem so. Like a detective, I know what happened without being told. She had a meltdown out in the dining room where her sister had spilled glitter the day before and we hadn't gotten it all up yet. Lilli puts her hands on her face when she is having a meltdown. She was crawling on the carpet and got the glitter on her hands, then rolled on her side and put her hands on her face in anguish. I've seen it a hundred times.
So now she is angry, frustrated, and covered in glitter.
I lean over and put a tape in the ancient VCR that she loves. The screen fills with a snowy veggie tales movie. She hands me another tape. She doesn't want Veggie tales Jonah. She wants something else. I try two more tapes that she hands me. Two different Elmos. Finally, she settles and gets up and walks out of the room. I sit there, groggy from being jolted out of sleep by a meltdown and no coffee yet.
Another mysterious meltdown is over. Something mysterious set her off, and something mysterious settled her down.
|Glitter. Not on purpose.|
I know from daily experience that it is very difficult to have a thankful heart when you have an autistic child screaming throughout your house every day for hours. This has been most of my summer. Crying and screaming.
It's just plain hard to be thankful sometimes.
Lots of things cover up gratitude.
When you are mentally and physically drained.
When you are experiencing a very difficult time in life, it can be hard to be thankful. Sometimes even the "gratitude journals" in the bookstore seem trite. Bloggers with empty meaningless posts about trivial things are irritating to me and seem pointless. To take a break from the endless stream of negativity from Facebook, I search Pinterest and I am overwhelmed with projects of free printables in frames that say "JOY!" or "LIVE LAUGH LOVE" void of true meaning to me, overusing words and stealing away their power.
How are we to press on and remain thankful during the difficult seasons of our lives, when things seem bleak?
I made up my mind to find out.
I decide to do a "thankfulness" experiment.
This experiment will not be easy. But it will not be trite. It will be a sincere challenge to me. I can barely clear my head to think in the midst of my daughter's constant meltdowns, let alone focus on thankfulness.
This is no way to live an abundant life.
If I can find a way to be thankful in even the most trying circumstances, then I will feel like I have won at life. Like I have won the life lottery, figuring out the secret to finding true joy.
I google "Gratitude Journals." And I am not impressed with what I find. I don't like the sappy sugary "write down three things you are thankful for each day," or five things, or ten things, or one thing. Listing things? I don't want it to feel like a chore. What if I don't get to write it down one day? Will I feel like a gratitude journal failure? What if I can only think of TWO things, not three on that day? If I can't think of anything at all, how will that feel? And what about the bore of constantly saying the same thing? I am thankful for my family. I am thankful for my home. I am thankful for food and hot water and heat and plumbing....blah blah blah boring.
I found an article that helped a little bit, but...only a little bit. I liked the title, though. It made me feel like I wasn't the only one who felt this way. The article was called I Hated Keeping a Gratitude Journal - Here's What Worked Instead
So I wasn't the only one who wanted to have a unique experience, not a cookie cutter Hallmark card experience. I was kind of on the right track to finding a way to keep a gratitude journal that wasn't like...keeping a gratitude journal.
I was looking to be inspired.
For weeks, I search.
And then I find this:
Take the Joy Dare
The Dare to Find Joy Through Eucharisteo
It was an older blog post, from 2014, by one of my favorite authors, Ann Voskamp. She has a book called "One Thousand Gifts." It is about giving thanks for even the smallest of gifts we have in life, and finding grace and joy, She tells a story of her life, with raw, genuine emotion and pain, and how she kept her own list of gifts based on a dare from a friend. She reached a written list of one thousand gifts, and kept going because it was life changing for her. To be thankful and recognize the many gifts she had from God...even the ones borne through pain. Her book is amazing. She has inspired thousands of others to follow her on a journey of finding joy through thanksgiving.
Eucharisteo is a word that she uses often. It means thanksgiving. The root word charis means grace, and the derivative is chara, meaning joy. When we give thanks in good times and in bad times, we find grace and true joy.
I was hooked. This was no trite "write five things each day" journal experience. Ann Voskamp loves words and fits them together like an artist paints a portrait. She is also a photographer, and she captures glimpses of the gifts in her life with her camera, weaving them among her words. Her 1000 gifts journal provided writing prompts. Prompts to inspire me to look at the world in a different way. Almost like an artist, or a photographer would. Oh that idea went straight to this former elementary teacher's heart, and I instantly loved it. I printed out her entire year's worth of writing prompts and put together a makeshift notebook in a binder. I was all set to begin my thankfulness experiment and my 2016 journey toward eucharisteo.
But it was...August.
No matter. I started my year of things to be thankful for ...more than halfway through 2016.
I fumbled a bit at first. Was I supposed to do every single writing prompt? Could I skip some? What if I had my own thankful thoughts that had nothing to do with the prompts? What if I missed a day? What if I missed a week? Do I number each thing? Do I write down the prompt first or just the answer? I overthink things. I make everything into a "It has to be done a certain way or it will be wrong" task. I didn't want to set myself up for failure by missing anything.
It was a sloppy beginning.
I missed a lot of days. Then on other days I wrote a lot. I decided it was better to be free flowing and number as I go, not caring about what day was what.
Instantly I noticed an internal change in me. It might have been small, but it was significant enough for me to notice it about myself. A shift in perspective. These prompts were helping me to think outside the usual "I'm thankful for my family, my home, food, hot water...etc."
I was thankful to look out the window and see my two middle children swinging and laughing together on our old swing set - that a sweet neighbor passed on to us years ago and it has blessed our lives so much more than they will ever know. I see that swing set every day. But seeing something is different than actively looking for gifts to be thankful for and writing them down. I don't know why it's different. Maybe it's more meaningful. Pondering the gift of my children swinging on the gift of an old swing set makes it deeper. I thought about my neighbors and wondered if they ever would even know how much having this swing set means to us.
It is one of Lilli's main sources of pure joy, to be pushed on a swing. Thinking about it all made me...thankful.
I was thankful to have my toddler sit next to me and scribble on a paper with crayons while I sat writing. And then I took the picture when he was finished coloring, and put it in my "One Thousand Gifts" binder.
I started slipping pictures and notes from the kids into my binder. Instead of letting these tiny gifts get lost in piles of paper all over the house, now I had a special place to keep them, with the purpose of collecting them as gifts. I had to add a bunch of page protectors to keep all of these little love notes and trinkets and pictures.
|Handmade anniversary gifts to us from Chloe and Josh|
The prompts were unique, and my list became interesting.
I was taking the time to really notice things around me.
Gift #15: A gift upside down: Josh doing flips on the trampoline and yelling, "Mom! Watch!"
Gift #16, 17, 18: Three gifts in water: The kids laughing and playing in our pool. Walking under a waterfall with Chloe. Chloe delighting in playing in the rain with her friend until she's soaked through.
|Chloe and me... and other random strangers. Before we walked behind the waterfall.|
I wrote my own gifts without writing prompts too, whenever I felt inspired. This experiment was helping me to see things in a new way. I was learning to look for the tiniest gifts in life to be thankful for. The big things are obvious. But life is really not made up of big things. It is really made up of hundreds of tiny gifts strung together everyday to make up our daily moments and hours. It's like an amazingly long necklace, with millions of tiny beads. Every once in awhile, there's a big, amazing, sparkling bead. But mostly the necklace is held together by the many small beads.
These are the moments of life. The little beads. The gifts we search for, to be thankful for.
Gift #109: Lilli's smiles yesterday and today - laughing and happy all day yesterday.
Smiles. I was so thankful for smiles. Would I have thought to be this thankful for these little things a year ago?
And then there is the hard eucharisteo part.
And I think this is the part that makes me really love this experiment with gratitude.
Every month, there is a prompt to describe hard eucharisteo.
Ann Voskamp defines hard eucharisteo as "the hard discipline to lean into the ugly, the hard times, and still be able to give thanks, find joy, find grace."
Being thankful in the hard times. Being thankful when life is tough and everything is falling down around you. Being thankful in moments of anger and despair. When everything is going wrong, finding something to be thankful for even when it feels like there is nothing good at all in that situation.
Oh my heart. That was what I needed the most - to find a way to be thankful in the tough moments. To be thankful despite the screaming. To be thankful even though my heart is continually breaking, weary, and either becoming numb or succumbing to despair during the continual letdowns, meltdowns and frustration that seems to intensify every year of being a caregiver for Lilli.
Maybe being thankful, hard eucharisteo, was what would save me. Restore me.
I still think about my post about restoration, and I still pray often that God would restore me. Now I would add to that habit by practicing hard eucharisteo. Seeking desperately to find gratitude for the gifts in my life... in the midst of difficulties.
This was stretching me. One month I wrote about a fight I had with my husband, but good came out of it. Mining the good stuff out of the bad, searching for the gifts to be thankful for...this was what I wanted.
140 gifts later...
September 9th is a turning point for me. I stumble across my newest favorite verse: Ecclesiastes 5:19-20.
They seldom reflect on the days of their life. .....They don't sit around and feel sorry for themselves.
Because God keeps the, occupied with gladness of heart..... because they are so busy being thankful for what they have going on in their lives at the present, they don't have time to get down.
So this is a gift from God. To be able to enjoy what you have. This is a prayer we all should be continually praying.
Dear God, please keep me thankful, please help me to accept this lot in life you have given me and be happy in my daily work. Dear God, please keep me occupied with gladness of heart.
December 31, 2016New Year's Eve day. My turn to get up with Lilli. I turn on the movie and the light for her before I even get coffee. I turn on the coffee pot and wait...it takes me forever to realize there is no water in the pot and I am just trying to percolate dry grinds.
Lilli is unhappy. She cries and falls on the floor in sobs and anger. She pulls on me. She puts things in my lap. She opens up all the cabinet doors and leaves them open - a pet peeve of mine. She whines and cries and I think she will wake up the other kids, so I give her an iphone to watch movies on. Because I can't take it today.
She quiets. Later, I find her hiding, huddled over the phone in a back bedroom. She has had a potty accident. She didn't come to me. She is deep into watching Elmo on Youtube.
I take her to the bathroom, and as I pull down her pants, the "accident" rolls out onto the floor. I don't know why, but tears well up and I feel so depressed when that happens. I have been taking care of Lilli's potty issues for almost 13 years. We have been potty training her for 8 years now.
I'm on my hands and knees, and tears fall as I clean her up and clean up the bathroom floor, I think about awful things like will I always be doing this? Will she have to go into an institution one day when I get too old to take care of her? Why isn't she making progress with this? Maybe I should give up potty training.
Then, out of the blue, these words pop into my head:
I stop crying and think about what I can be thankful for. It's hard. I can't really think of anything at the moment. I feel sad. And so alone.
But later...it's just the boys and Lilli and me, and I pull Play Doh out to keep the littlest one occupied. Soon my six year old comes over and joins in, and we decide we should just make some of our own play dough. He happily helps me mix it up. My two year old is delighted to squish it and explore with all the many cookie cutters and tools we have. My six year old says adorable things that make me smile.
My heart is thankful for this moment. I couldn't figure out how to be thankful for what just happened with my daughter, but I can still find other gifts to be thankful about.
Later I reflect on it all, and I feel thankful that I have matured as a caregiver. I can handle a lot of bad stuff. I can handle awful things with a strange calmness. I get sad, but I get through it. I feel lonely, but I am not alone. I may experience despair, but later it is replaced with thankfulness when I focus on the many other good gifts in my life.
New Years Day 2017
We are jolted awake in the early morning by Lilli having a seizure. The dark cloud that always settles over my husband and me after she has a seizure, drifts in silently and we try to fight it off. We pour our coffee and try to sit together to drink it and talk. We are interrupted by Lilli crying, and our two year old who comes running out wanting to be held.
I cannot think of a thing to be thankful about with the seizure experience. It actually breaks open a new container of fear inside me, which seeps out slowly and threatens to depress me for weeks. To explain exactly why would be another entire post. I cannot wrap my brain around hard eucharisteo with Lilli's seizures right now.
But one day, hopefully, I will. One day I hope to look back on these years and be thankful for what I learned during the tough moments somehow.
But in the hard stuff, despite it, I can find thankfulness. I have many good gifts.
But in those moments, if these words pop into your mind:
Then you can get through it. Because you know that life is about the little moments, you can focus on the good in the little moments and you know that one day you will think of something to be thankful for about tough situations. And being thankful helps you to find grace...for yourself, and grace for others. Because we all are struggling in some way, and we need to show each other grace.
And then you will know that having a truly thankful heart...despite your circumstances....means that you have true joy in your heart.
Here's to a year of being thankful for 1000 gifts in 2017. If you want to take the Joy Dare challenge like I am, you can click on this link to Ann Voskamp's blog post and print out all the prompts here:
Joy Dare Prompts
Her challenge may have been to readers in 2014, but the idea is timeless. I will be continuing to fill up my journal with gifts in 2017.
As always, a heartfelt thank you to my friends and family who take the time to read to the end of this long post which bares my heart and soul and leaves me feeling vulnerable. But I firmly believe that when God teaches me something, I am responsible for and privileged to share it with others. We all have influence, my pastor says. Use your influence for good.
Wishing you a blessed, happy new year, filled with many gifts to be thankful for in 2017.