Attempting RV Camping - Part 1: Neurotic Craziness Before the Trip Craziness

Neurotic Packing

We leave in three days.

My house is a complete wreck with cooking and packing. I tell a friend, "I'm excited and terrified at the same time. I read on the campground website that there's spotty wifi at the campsites. Pray for us!" 

We laugh together. She gets it. Like me, she has a child who has autism and an addiction to Youtube. We laugh, but it's no joke. The meltdowns that ensue from spotty wifi with a child with autism consistently, negatively impact our family life. We have to have good wifi for the survival of our family.

The weird things I have to think of to pack for Lilli. With my other children, the list is normal:

Clothes. Books. Beach toys. Hats. Sandals. Board games. We are so excited for this, we cannot even stand it. 

At the top of Lilli's list: Seizure meds. Handicap placard. New movie download onto kindle. Extension cords. Add extra data onto phone plan. Bags of legos. Make a movie choice book. Extra cheesepuffs.

Seriously.

Clothes? Oh yeah, those too.

I have spent hours figuring out how to keep Lilli happy on this trip. I have gone above and beyond with the planning for her.

I am torn down the middle with happy anticipation and fear. We have never camped with all of our children. My husband has taken Josh and Chloe camping. But I couldn't go. I stayed home with Lilli and baby Nate. We didn't think Lilli could handle tent camping. So we split the family up. I could've figured out how to take a baby camping and it would've been easy compared to taking Lilli. It was just something we had to do for Josh and Chloe. Sometimes it's hard to figure out how to do things as a family with special needs.

Camping with their dad

I hate splitting up. But we could not figure out how to camp. And then one day we came up with this crazy idea that maybe, just maybe we could all try camping together if we rented an RV. 

The RV is purely for Lilli. We have this plan and we think it might work. If it works, life will change for our family.

Is this crazy that we are attempting this? Why is it such a big deal? It is a big deal because we have to think about things for Lilli that we don't have to think about for our other kids. I'm barely thinking about my other kids, not concerned at all about how they will do on the trip. Sunscreen? Stuff to do? They will be fine.

But what if Lilli has a seizure while we are on the trip? How far will we be from a hospital if we need one? What if I forget something very important for her? What if she cries a lot? What if she wakes up at 4:30 in the morning (extremely likely) and screams and sobs loudly and everyone in the campground can hear her? (quite possible) Will the air purifier that we are bringing do a good enough job of clearing the smoky smell out of the RV if we have a campfire for the other kids? (Who brings an air purifer on a camping trip?)

But...what if it's great? What if Lilli is super happy? What if it is the most fun trip we have ever been on together? What if this is the best thing our family has ever done, to go camping in an rv?

I have both anxiety and excitement.

I can't wait! But I'm scared.

Temporary movie choice book I made just for the trip. I wish I would've taken a picture of the bags and boxes I packed JUST for Lilli.

The Day Before

Lilli wakes up at 5. The sleeping pills are not really working. But 5 is better than 4, I guess. I wake up teary, feeling defeated. I am woken up this way very often. But then after a cup of coffee, I feel better. It's going to be a good day! We are going camping tomorrow!

We have three therapies today, all crammed in at the beginning of spring break before we leave town. I have a list of cooking to do today and still the packing and never ending laundry. I had already packed the kids' bags a few days ago, but then I had to pull clothes out from them for them to wear. So. More laundry and re-packing. Just goes to show you that sometimes, being a last minute person is actually better. I was trying to not be a last minute person. But I did it wrong.

I begin researching hot spots and I call Verizon at 7 am to buy more data for Lilli. I've got to make sure this piece is in place. 

I am an envisioner. I spend weeks and hours playing out scenarios in my mind. Before my husband and I got married, every night for months leading up to the wedding I would get in bed and fall asleep thinking about walking down the aisle. I would look around in my mind as I walked down the aisle at all the details, enjoying them ahead of time, fixing and changing things in my mind.

Then I would get up and make lists. 

This is how I handle most big things for our family. Envision. Make extensive lists. Brainstorm potential problems. Work out the smallest details to be preventative and make sure we avoid the worst case scenarios. Pack every possible item that we could ever maybe need in the weirdest situation that might arise, to make sure things go ok. 

So for this camping trip, well I have been RVing in my mind for over a month. Imagining what it will be like. How Lilli will be. Thinking about the setting, like the background and props on stage in a play that I practice in my mind. Trying to work out the kinks ahead of time and make lists so I can think of absolutely every detail and prevent any meltdowns or problems before they can even begin. I know, because I have three other children, that this is not regular motherhood. This is motherhood on crack.

This is because of autism life.

If I can pack everything to keep Lilli happy, then the trip will go ok. This is truly what I am thinking. The equation in our family is:

Lilli is happy = our family can enjoy life. Lilli is melting down = life stinks.

I know this is wrong. I should not balance everything else in our family on Lilli not having a meltdown. I just...can't really explain it well. We have four kids. Like four wheels on a car. If one of those wheels goes flat: Lilli's wheel, this car ain't going nowhere. I have to try and make sure we don't get a flat.

I am envisioning the following scenario: My husband and I will be sitting outside the RV in camp chairs next to a campfire. Nate will be running around with Josh, picking up sticks and rocks. Playing with hot wheels in the dirt. We have a small baby pool that we will put sand or water in with toys for Nate to play in. That will hopefully keep him occupied and not so likely to wander away from our campsite. Josh will be hitting things with sticks and climbing any trees, if there are any. Digging holes in the ground. Finding bugs. Chloe will be into cooking things over the fire, chatting and playing board games with my husband and me, and laying on her picnic blanket with her ten year old feet up in the air reading books. The five of us will be doing all the things that people enjoy doing while camping. 

And Lilli. 

Lilli will be inside the RV, crouched on the floor with legos spread out all around her, with her DVD player going and youtube on her phone at the same time. And maybe a bag of cheesepuffs open next to her. She will be separate from us, but happy. Hopefully. She will have her own space with her familiar comforting things around her, and she will be happy. 

And we will enjoy this trip as a family, separate, but together.

If my plan works, then heck, we are going to buy a camper and camp all over this country. As long as there's full hook ups wherever we go, that is. Oh and wifi. 

Envisioning things in your mind is a way to plan. But there is a serious flaw to this method of planning. You see, life rarely works out the way we plan. There are always hidden surprises. We cannot predict the future. There are twists and turns everywhere. And expectations are set too high for us to ever attain. A therapist once told me that I set my expectations too high, and that's why I'm always disappointed. She told me to work on lowering my expectations. 

So maybe I need to lower my expectations for this trip.

Let's see... hmm. Okay. If no one is miserable, it will be a good trip. No? Not realistic enough for a family of six? You're right. Let's go lower. 

If we don't crash the RV, it will be a good trip.

If we don't lose any of our kids, it will be a good trip.

If we make it back, it will be a good trip.

I think that's low enough.

Some of my lists from my trip list binder. Some, but not all. This is about half.  I had an entire binder devoted to a three night, two day camping trip. Neurotic? I think maybe a little. 

The Morning We Leave

It's pouring buckets.

Great. We have spent $300 to rent an RV to go camping in the pouring rain.

The "positive" setting on my envisioning is currently out of order. And we are tired, From all the packing for this rainy vacation where we will load up an rv with about 50 bags, drive for hours to park and sit in that rv for rwo days together in the rain and try not to drive each other completely nuts.

Lord please let us have a little sunshine in the next few days.

But just in case, I might go pack the kids' rain boots. Cause why not. We have packed practically everything else we own.

I walk by my toddler who has stripped down to his diaper, and is currently wearing a dirty colander on his head that he pulled out of the recently loaded dishwasher.

I wonder if we will ever even get out of here.

Help me out here, kid. We are supposed to be in the car right now.

...To be continued in Attempting RV Camping - Part 2: The Actual Getting There

Easter Morning Hope

Easter Morning 2017

The sun has not risen yet. After awkwardly stumbling down the dark hallway, Lilli opens the cupboards in the dark kitchen, looking for the iphone. She accidentally knocks the mug holder that is on the counter onto the floor. Mugs clatter and roll.

It is my turn to get up with her this morning and at the sound of the fallen mugs I already feel my temper rising within me.

It is Easter morning and I wanted to wake up differently.

Not this way.

Not this way that we wake up every day here in this house with a teenager who has autism and cerebral palsy.

I didn’t want to take her to the potty and wash her 13 year old hands for her. I wanted to sleep. I didn’t want to have to drag the baby gate out and put it up so she won’t repeatedly go down the hallway and open up all the bedroom doors and turn on the lights, waking everyone else up.  I didn’t want to have to hide all the devices quickly in the cabinet before she came looking for them, crying for them. I didn’t want to have to push the table back against the wall that she always yanks out because the lego bin is tied to the legs of it  because she always dumps the legos. All of this before I get my first cup of coffee.

I didn’t want it.

Lillil's current corner. The table I push back every day. I have to give her a corner to try and keep the legos sort of in one place. The laundry basket is tied to the table in hopes that she won't dump the entire basket multiple times a day.  She tries. My plan doesn't really work that well. 

I feel anger, but my anger is strangely directed. It is not toward my daughter.

Whenever I feel this anger, it is because I feel so alone. I feel angry at people who judge us for looking for answers to help our daughter, and judge the decisions we make.  I feel angry at people who have formed opinions about us, yet they will never have to live this life we live. They have never walked in our shoes. They have no idea what it is like. Others come to help and go. But in the end, we are the ones who are left to deal with how our daughter is. This is why we are always searching for ways to figure out what happened and how we can help her. It is because I worry about the future, and I see years of this same scenario playing out before me in my mind with no relief. I think about how I will be living this same morning routine when I am 70, and it hurts my heart more than I can describe.

She falls on the floor and cries. I want to cry. I am so not up for this today. She comes to me a dozen times, pulling on me. Crying. She finally gets settled with watching Cinder Elmo on her mini DVD player, probably the 25th one we’ve bought for her since she’s broken all the rest.

And then I sit down with my coffee. I take a breath, and I think, it’s Easter.

Thank God it’s Easter. Thank you Jesus, I need today. We all do.

Tears fall. Tears of sorrow and relief at the same time. Sorrow for the deep pain we all experience in this life. Relief that there is hope.

These words I have clung to for the past few weeks:

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while.

What does that even mean? Wonderful joy ahead? It means we don’t even know how amazing it is going to be when we get to heaven. Because this life is darn hard, and only getting harder. And this hope we have, through Jesus Christ, of heaven after this life is over...this is what gets me through. And these "trials" in life? Wow, I don't even know what a true trial is. I am blessed. Despite our daily challenges, we have freedom in this country and so many blessings to be thankful for in life.

The current verse above my doorframe.

Easter is Better Than Christmas

Easter is truly the best day of the year. It is the holiday of hope, of miracles, of redemption and salvation. Easter is love and joy and thankfulness. Easter is the most amazing day we have. It’s better than Christmas! I tell my children.

Ahhh, wait a second, better than Christmas? I don’t think so… some of you are thinking right now.

I explained to my kids that we celebrate Jesus being born at Christmas, and that’s an amazing thing - to celebrate his birth! You could argue that we wouldn’t even have Easter if we did not have Christmas!

But we would not have the eternal hope we have if we did not have Easter.

Without Easter, Christmas is just someone else’s birthday.

Yes today there will be chocolate, and baskets, and an egg hunt in our back yard. There will be hours of family time and food and laughter and hugs. We will truly enjoy today together. But we will remind our young children why we are celebrating today. My seven year old would tell you that it’s because Jesus died on the cross for us. But it’s not just because He died, it’s because he rose again. This is nonsense to many. Others do not know why we believe this. Why do we trust so deeply in something that others joke about and see as complete ridiculousness?

I would say tell me what faith is. Tell me what hope is. Tell me what you think this life is about. Why are we even here? Is this life all there is?

I hope for things in this life, but I have no guarantee of anything of what will happen on this earth. But I have a guarantee in heaven. And that is a hope I can count on. That is why I celebrate. That is why I can go on. Because of this:

1 Peter 1:3-7  (NLT)

The Hope of Eternal Life
3 All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, 4 and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. 5 And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

6 So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. 7 These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

I pray that my children have an understanding of true hope as they grow up. Because this life is hard. But today gives us a reminder of our hope. Blessings to you and yours on this beautiful Easter morning. Enjoy your families. Enjoy the eggs and chocolate. And be reminded of HOPE.

Hebrews 13:14 NLT

For this world is not our permanent home; we are looking forward to a home yet to come. 

The Gratitude Experiment

July 2016

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...

.....

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.

Physical pain.
Bad news.
Bitterness.
Anger.
Exhaustion.
Depression.
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.

Gifts.

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?

Hard Eucharisteo

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.

***************************************************************

September 2016

140 gifts later...

September 9th is a turning point for me. I stumble across my newest favorite verse: Ecclesiastes 5:19-20.

19 Moreover, when God gives someone wealth and possessions, and the ability to enjoy them, to accept their lot and be happy in their toil—this is a gift of God. 20 They seldom reflect on the days of their life, because God keeps them occupied with gladness of heart.


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, 2016

New 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:

Hard Eucharisteo.

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.

Here is why we all need to pray Ecclesiastes 5:19-20 for every single day of our lives: because life doesn't get any easier. Things will always be hard. There will always be sorrow and disappointments. There will be sickness. There will be moments of crying on the bathroom floor.

But in those moments, if these words pop into your mind:

Hard Eucharisteo

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.

 

The Color of a Miracle

We visited dear friends a few weeks ago.

In my memories of the visit, I wish I could paint an abstract painting of what it looks like in my mind.

It is painted with the colors of an incomplete rainbow.

A swirling storm of colors in a tornado. The heavy, blackish brown of Lilli's many cries, tears, yells of anger and frustration when we were out in public on the two days we visited and tried to do some sightseeing and went to an amusement park.

Bright, shiny yellow streaks of her shrieks of delight. Broad strokes of pink distinct and delightful laughter. Deep rose swirls of her sweetness when kissing Elmo and giving Elmo tight hugs, and the girl inside the Elmo costume breaking character later and telling us quietly and discreetly that Lilli made her day. Sky blue with the sound of water sprinklers splashing on her hands against a bright blue sky, her mouth in a wipe-open smile.

Red swirls of the hundreds of unspoken words she tried to convey physically, through hugs, and in pushing us away. The red-orange intensity of her physical efforts trying desperately to compensate for the absence of verbal communication.

Glittering gold of her strong, gripping hugs. grabbing our faces and looking intensely into our eyes for seconds that feel like a year-long trip into vast blueness, her soul yearning to speak volumes and convey with just one long look.

Black splotches. A seizure the first night of the visit. My husband and I whispering urgently to each other and working as a team in the middle of the night. Darkness and then sudden light in unfamiliar room while she has the seizure and everyone else is sleeping. Our six year old sleeping through the whole episode, inches away. Then turning off the light after it is all over, and laying in the dark. Two sets of eyes, open. Staring. Thinking. Listening to the sounds of all the breathing in the room. Trying to calm and slow our rapidly beating hearts. The sorrow. The worry. Gray splotches of trying to let it go, move on. It's over. She's OK. Sleep.

The purple-gray of my heartbreak and defeat so many moments as we try to create a special time and memories for our other three children. But Lilli is crying with despair and shrieking in anger, drawing startled looks of confusion, sympathy, silent questions from strangers all around us. I hold hands with my younger children and point out interesting things, read facts from museum plaques while trying to block out the unhappy noises streaming from my oldest, because there is nothing else we can do or try to make her happy.

A bolt of shiny silver in one single moment. I push Lilli in her oversized, special needs stroller through a museum that she hates. Her angry cries are echoing through the rooms, accompanied by our shushing and muted notes of Elmo music coming from her mp3 player. A look. A split second seared with a knowing, loving connection. A mom, pushing her little boy in a wheelchair through the rooms with us. She sees my heart and lets me know with one look. She knows. Silent solidarity.

Only moms of children with special needs have this look. I give her the look too. It is all the colors of our rainbow at once. It is every emotion at once. It is a one second long, life connecting friendship, over in an instant when we both look away.

Deep dark purple-blue of me sitting at a table with my friend, late at night. Confessing my feelings of sadness, discouragement, frustration in the deep valleys of raising a child with special needs.

And then, in the middle of the color tornado: a speck of green.

A new tiny seed, sprouting.

The words of my friend, coming out of the seed. White. New. Clean. Perfect. Renewing.

"Remember that you are living in the midst of a miracle. She is a miracle."

She was there the night Lilli was born. She was there. She stayed with me all night. She was there with me for everything when it all began.

She knows and remembers the miracles.

Lilli and my special friend giving her a kiss on the skyride.

She reminds me.

I have forgotten.

Lord, forgive me for forgetting the miracles in the midst of my exhaustion and feelings of defeat.

We are not defeated.

She is a miracle.

She is twelve years of miracles put together, walking, breathing, smiling, running, laughing, hugging. Pedaling a tricycle. Dancing. Jumping.

She is one miracle, growing into more miracles.

What color is a miracle?

It is a color we have not seen yet. It is a color we cannot comprehend. It is a color in heaven, that we will see one day when we get there. We will open our mouths in wonder and awe and understanding, staring. It is a color that exists, but we cannot see it right now. Our eyes are not created to see the color of a miracle here on earth, but we know it is there.

One day we will see all of the colors together. The ones we can see, and the ones we cannot see.

A complete rainbow.

And then the painting will finally be finished.

Riding on the merry go round with my girl.