Lilli

Lilli

Sunday, January 1, 2017

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.






 



















Friday, July 22, 2016

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.










Sunday, June 12, 2016

Dragonflies and Lilies Blooming







We have experienced much change in the last year since moving. I truly believe most of the changes have been good. We have each struggled in our own ways to adapt and settle in here in our new home in the mountains.

Throughout this past year in all the ups and downs and in my never ending search for hope, I began to look for signs from God that he is with me. That he has not forgotten about Lilli. That he has heard my prayers over the course of her whole life. I know he has never forgotten us. Often, I feel very alone. But feelings can be wrong.

I am never alone. And God never forgets. 

I had just reached a point so low that I was looking everywhere to hear from Him.


Knocked Over



A tsunami rose up and knocked me over recently. Something happened that reminded me of the trauma of Lilli's birth. I cannot write publicly what it was that happened. But stuff like that comes up in life all the time. 


Reminders of the tough things we have been through.

They sneak up and knock me over from behind, and sometimes I am okay. But sometimes it takes a long while to recover.

Those long recoveries are times when I am especially searching for hope to cling to. With this incident, both my husband and I were affected, and we found ourselves confessing feelings and thoughts about Lilli's birth that we had not yet shared in 12 years. There is always so much to process. I cried a lot, in the bedroom with the door shut. He understood. 

Lilli's birth was so traumatic that I still carry it with me. I still lay awake sometimes and think about it in the middle of the night. After 12 years. I still think about the things that went wrong. The things the doctor should have done or should not have done. The mistakes the hospital made. Her time in the hospital nursery when we were not with her (because I was in recovery from an emergency c section and my husband was taking turns being by my side and by her side) and she began to have seizures. I still think about all of it and the pain is still there. 



After all this time.

You would think that the pain would have diminished even a little bit after all these years. And most days, it has. Most days, I do not think about it or dwell on it. Just sometimes it comes back to my mind. Some might tell me to let it go. But I think the opposite has happened. Because now I see what Lilli is like 12 years later. Because of who she is and what she is like, I still think about it. I have over a decade of perspective now. I did not know on the day she was born how very difficult her entire life would be. 


I just did not know. 


So when things are hard now, sometimes I think back to how it all began, with her difficult birth. To the start of the story that we are right in the middle of now.


Why did things happen the way they did? I know that God is big and that we do not understand his ways. I know that he has a plan specifically for Lilli and for our family throughout all of this. And I know that this side of heaven, I will never know why things happened this way. I continually have to come back to God and tell him that I trust him. 

I do trust him. Even when everything is so hard. 


Mind Wandering in the Grocery Store


My heart has been especially broken lately. It hits me at odd times. One evening, I was in the bakery section of the grocery store by myself. I was looking at the french bread, and tears just sprang up without warning. 


The tears came because I had been trying to figure out yet another small mystery about Lilli, and it was heavy on my mind.

While pushing my cart past the banana display over to the french bread, I had been thinking about how earlier in the evening Lilli had pushed  the word "bye" on her ipad several times. I didn't know what she meant. She had been upset with me. Was she being a snippy tween, telling me "Bye"? Like, go away mom. Bye


I had mentioned something about school and her friend, and then I thought, was she trying to tell me something about saying goodbye to someone at school? To her friend? 


Maybe she didn't want to say goodbye. Maybe it's because she never got to say goodbye to her teacher, who suddenly quit last week with no warning, just before the end of the school year. (Another heartbreak). There are so many things that go through my mind when she pushes a button with just one single word. It kills me. It is the most frustrating thing ever. 


You might think that it was just an accident or maybe she was just pushing it for the heck of it. And maybe, yes, sometimes, maybe it is. But you would not be giving Lilli enough credit if you thought that all of the time. Lilli has so few words on her ipad to use. There is a neurological disconnect in her brain. She knows what she thinks in her mind. She cannot get the words out of her mouth and she cannot get her fingers to express it accurately by herself through a device. It is stuck in her mind, with no pathway out.


How do I know this? Because when she has something to say, she puts her hand on her neck. All the time. Anyone who knows her well knows this. How can I describe it? It's as if you tie bandana over your child's face covering only their mouth, and then you ask them a question. They point to the bandana, as if to say, I can't talk, I have a bandana over my mouth, remember? 


That's pretty much Lilli all the time.



Selfie with Lilli. I said, "Lilli, smile! Lilli, say cheese!"
I don't know why I always do that.
She can't say "cheese." Sometimes, she tries.


This is right after I said "Say cheese!"
She's silent.
She's saying cheese, I think.. Internally.


























When she pushed "bye" several times, I sat there across from her at the table and I said, "Lilli, why are you saying bye?" Then I asked her more specific questions about it, trying to guess. 

But there is no button that says what she is thinking. 

It could've been, "I want you to make a goodbye gift for the staff at school." Or, "I don't want to say goodbye to my friend." Or, "I never got to say goodbye to my teacher." 

She put her hand on her neck and looked at the floor, silently. It was no accident. She was trying to express a thought but she only had one word to do it. 

Bye.


My heart. Hurts. Every time. 


Sometimes I get sad. Sometimes I get angry. Sometimes I get depressed. Sometimes I waste time questioning why things are this way. Sometimes I get motivated to try and make things better, or work on teaching Lilli something.  Sometimes I steel myself against the hurt and just ignore it all to save myself from pain - her pain and my pain. Just move on. Do normal life things. Get up and put the dishes in the sink and act like she wasn't just trying to tell me something important and I will now never know what it was.

This all happened last week - the something that happened that reminded me of Lilli's birth, and the crying near the french bread in the grocery store. And then came the morning when I got perspective from a lilli flower. And a dragonfly.


The Lilies and the Dragonfly


I was in the backyard with little 20 month old Nate. I was watching him toddle all-around in the bright morning sunshine as I was trying to just keep myself together emotionally. It had been a tough morning and I was trying to keep from falling apart. The rest of my family had gone to church and I stayed behind because I was so upset.


If you ever think you are too upset to go to church, you should make yourself go. You are probably missing a message that is meant just for you. Later, I found out I missed a message on finding joy in tough times. I wished I had gone to hear that message.




I stood in the yard and looked at all of the orange tiger lilies blooming. All around, blooming everywhere. 

My Lilli was not named after the lily flower. She was named after my mom, whose name was Lillian. But most people called my mom "Lilli." She died when I was 13. Before Lilli was born, we had decided to name her Lillianna. We made it a little different, but still she has the same nickname as my mother. 


Because of these two very special Lillis in my life, the lily flower has special meaning to me, and it has always been my favorite flower.


As I stared at one beautiful bunch blooming in front of me, I noticed a dragonfly. Last year I gave beautiful bead and wire dragonfly ornaments to a couple of special people in my life. Someone had made them and had written the story of the dragonfly's life to go with it. 


One of those special people that I gave a dragonfly to was Lilli. 





The dragonfly spends four years in the mud and muck before it finally crawls out and becomes a beautiful dragonfly. 



According to http://www.dragonfly-site.com:


"Once the dragonfly eggs hatch, the life cycle of a dragonfly larva begins as a nymph. A nymph looks a little like a little alien creature. It hasn't grown its wings yet and has what looks like a crusty hump hanging onto its back. Dragonfly nymphs live in the water while they grow and develop into dragonflies. This portion of the dragonfly life cycle can take up to four years to complete, and if the nymph cycle is completed in the beginning of the wintertime, it will remain in the water until spring when it is warm enough to come out."



Do you know how hard it is to get a good picture of a dragonfly? See mine below with the orange circle. a terrible picture! 
Then do yourself a favor and google image photos of dragonflies. They are all spectacularly colored and different.


I was standing still, looking at the dragonfly thinking about it and what it had to go through before becoming this beautiful huge green shimmering dragonfly on a leaf in front of my face. It makes the butterfly's metamorphosis seem like a short lovely trip down easy lane.



The dragonfly was right next to the amazing, perfectly blooming orange tiger lilies. 


I looked at all of the tiger lilies, knowing all of the sudden deep in my heart that God had put them there just for me.


The dragonfly was hard to find in this picture.
I had to enlarge it and really search.
I circled it above in orange. If you can't see
it, trust me, it's there. Green and beautiful.


Some people believe that things like this happen in life by random chance. I guess that takes away from the magic of life doesn't it? Because I believe truly that it was meant to be that a person who lived in this house decades before me planted all of those dozens and dozens of tiger lilies. And for some reason, that person must have really loved lilies and didn't even know about the future people who would live in this house....us. With a little girl named Lilli.


But I believe God was thinking about the future.


I believe God knew that a little girl named Lilli would be living in this house one day many years later. 


Blooming there. 

And God knew that the little girl's mother would need to be surrounded with signs of hope. Signs that she needs to just keep trusting. And keep hoping. Signs that God has not forgotten her and her daughter. 

That person could've planted anything. Tulips. Daffodils. Hyacinths. They could've mixed it up a little and planted a little bit of everything. 


But no. 


Only lilies. Just lilies. Everywhere. 


Consider the Lilies



Sometimes you hear Bible verses your whole life, but you don't really think about them deeply until one day, bam, there it is right in front of your face. Real and genuine as can be, deeply meaningful. 

There's that verse in Matthew 6:28 that talks about lilies and how we should not worry.


  "Consider the lilies of the field, how they grow: they do not toil or spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. "



Lilies along the side yard next to the deck.

I've heard that verse a hundred times. And yet there I was, standing in my own backyard staring at dozens and dozens of lilies. And I was truly considering them for the first time ever. 


That verse is talking about not worrying, because God will take care of our needs. It is part of a bigger passage about not being anxious or worrying about anything at all.



All along the back of the yard.
I could not even fit the whole row in the picture.





The lilies, they really don't worry. They don't need anything. And they are beautiful.


I didn't plant those lilies. Somebody did. But after they planted them, I guarantee they never did another thing to help them grow or flourish.







Last year, our first spring in our new home, we looked around the yard at all of these green leaves sprouting up and my husband said, "I think those might be lilies!"

I said, "If those are all lilies, then I am going to cry because that will be amazing."


And then they bloomed. 


They all bloomed and I was overjoyed and brought to tears by their beauty and the crazy coincidence that my mom's name was Lilli, and my daughter's name is Lilli, and my favorite flower is a lily.


But consider these lilies. I never did anything to these lilies in my yard. We did not water them even one time. We did not weed around them or prune them or fertilize them or anything. They just came up, and they bloomed beautifully all on their own. 


God takes care of the lilies. 


And God takes care of my Lilli.


There I stood, "considering the lilies." 


I am so worried about my Lilli, and I so want her to be able to do certain things.I get anxious and impatient all the time, with all the waiting and with how long everything takes for her to learn.

If I had stood in front of those flowers in March, crying and hoping and wishing for them to bloom and open right in front of me, they would not have opened. Because they were not ready. They were not to open until late May. 


Even in April, knowing how close we were to May and summer, had I stood in front of them and hoped and prayed and wished for them to bloom, they would not have bloomed. Because it was not time yet. 


That made me consider my own Lilli. God's timing is not my timing. Just because I wish and pray for her to do things right now on her own, well, it's not up to me. If I had known that it was going to take Lilli seven years to learn how to pedal a bike, would I have kept trying to help her learn after one year? Even after six months? Seven years is a really long time.

It has taken Lilli a very long time to bloom. She is still blooming, and many things in her life are still just a seed. 

18 months to learn to crawl.

3 years to learn to walk.
5 years to learn to run.
7 years to learn to jump.
8 years to learn to kick her legs in the pool and move around in an inner tube
6  years of feeding therapy to go from baby/puree foods to chewing regular food. 
6 years to learn to go up or down steps.
7 years to learn to pedal a bike.
8 years of potty training and counting...
11 years of physical therapy
9 years of speech therapy
10 years of occupational therapy.

Yes, we are worn out. Keeping our chins up all the time is really exhausting. 


God is taking care of Lilli. And she IS blooming. She is blooming on God's schedule for her, and God's timing is perfect. In some ways, she might be a little bit like the dragonfly right now, with some things hidden and stuck in the mud. But I have to keep having hope. I have to wait and not worry.

Most of my friends have seen this on facebook.
This is Lilli on her new bike. Pedaling it herself. It really did
take seven years of people manually pushing her feet around on the pedals for
her to get the motor memory for how to pedal by herself.





This verse I love:


 "He has made everything beautiful in its time." (Ecclesiasties 3:11)


In time, we will see the beauty. In time, we will know. Right now, I only know in part. One day, we will know the end of the story.


 "For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known." Corinthians 13:12. 


I need to hear this, so I am reminding myself. I am writing it out so that I can remind myself again and again. But maybe someone else that is reading this needs to be reminded of this too. This is not your typical message about waiting on the Lord. This is about agonizingly long waiting. 


Many. many, long years of waiting. 


I hope that through my struggle and story about waiting and continuing to look for hope, you find hope too. 


When you are searching for hope in the long-waiting, remember the dragonfly. 
Sometimes, good things take a really long time. Think of the dragonfly nymph, spending years in the mud before if finally emerges with wings shimmering and beautiful, dancing in the air with more agility than a helicopter and more grace than a ballerina.

 And look for the "lilies" along your way. The reminders that you are not alone. God is here. 
He knows the end of the story, because He wrote your story long before you were born. Hang on a little longer, have faith, and have hope. 



A bunch in another corner of the yard.
Lilies all along the back



Lilies up the driveway