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.
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 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.
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.
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.
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|