The First Week: "It Will Get Better."

The First Week. March 2015

Her constant crying is heartbreaking. I feel sorry for her, I feel sorry for me, even though that's so awful of me to have a personal pity party. You might think, geez girl, it’s only a little crying, just ignore it. But has been several days straight of this. For hours at a time, everyday.

Just...straight crying.

Sometimes it's sad crying. Sometimes it's angry crying. 

It is wearing on me mentally. I can figure out what is going on if it's one of my other children crying. The baby's easy. Change him. Nurse him. He's good. Josh and Chloe? A hug for a boo boo. They can tell me what is bothering them. Is it a crying tantrum? I can easily ignore a tantrum from my other children. Just walk out of the room.

But not with Lilli.

As always, this is different. It's not a tantrum. It's so much emotion wrapped up into one small outlet. She cries and hands me a movie case. Lilli cries because she wants a movie. But there is much more beneath the surface. The movie is just her way of escaping. She is trying to find her place here in our new surroundings. New house for her to navigate. The furniture is haphazardly placed temporarily. Stacks of boxes in every room. She is tripping and climbing around things, and trying to figure out what to do with herself. She might be crying because she is completely thrown off in every way from this move. She misses her old familiar house and things.

This is all so new.

She might have a million things to say, like, I don't like this house. I don't know where anything is. I miss our old life, our old house. 

Her crying is unnerving to me. Lilli has always affected me differently than my other kids. I cannot figure her out, even after all these years. She cannot consistently, effectively communicate to me, even after everything we have tried. It's still a guessing game much of the time. Sometimes I just don't know what she wants to tell me, and her frustration can completely unravel me in mere seconds.

I have learned over the years that I need to explain things to her. It took me way too long to learn this. When you have a child who does not speak, you sometimes lose sight of how much they need you to explain everything to them anyway. Just like any other kid. And also, it's hard to explain something to someone who cannot talk back to you. It takes some getting used to. You don't know if she's listening or if she understands, if you're insulting her because she already knows, or if she is even more confused and has questions she cannot ask. I explain something as I drive in the quiet car, hearing only myself talk, and then...silence. No feedback. Never know what she thinks about what I just told her.

I give Lilli pep talks. I tell her things will get better as we unpack and get settled and learn about our new town... that it will not always be like this.

I tell myself this, too.

I am strong, but only in certain situations. And only for a certain length of time. After awhile, I start to break down a little myself. I really think anyone would if they were in my shoes.

Lilli is not handling this move well at all.

During the crying, (and in-between unpacking), I try different things. I spend time with her, I talk to her, I try to help her. She keeps crying. I ask her questions that she cannot answer. She gets mad and pushes me. Then I try ignoring her.

Nothing works.

I think questions to myself. But they do not have question marks, because I know that there are no answers.

Why.
What should I do.
How can I help her.

What if it’s always like this.

She is completely lost. No schedule. All I can handle in this mess is feeding the kids. Everything is a wreck with piles everywhere.

I know she is bored. She’s unhappy. She's even angry at times.  This is not what she is used to, and her routine is totally thrown off. Routine and predictability are important to Lilli. And a familiar place, with familiar people coming to see her, like her teachers and therapists.

She has none of those right now.

Little things make her mad. Like the fact that she can't turn on the light switch in the new bathroom, because it's a dial...from the dark ages. Well, no, just the 60s.

The bathroom light switch. Really?

She doesn't know where the light switch is in her new room, because it's behind a huge tower of stuff.

She trips over something in every room. I try to clear paths between boxes and piles, but there is just so much. I try to concentrate on unpacking one area, and it makes me just want to sit down and cry. I try a different method of unpacking randomly as I go from room to room with the kids. I try getting Chloe and Josh to help me unpack.

No, that doesn't work.

I have been unpacking and cleaning, and my husband is working. I don’t know where everything is, and the disorganization and stacks of boxes are making me crazy. I cannot pay enough attention to my four, differently-needy children right now. I'm trying to make this house a functional home. Thankfully, Josh and Chloe play together and entertain each other for hours. The baby sleeps in the swing in-between feedings. But Lilli has only so many things she can do for self-entertainment. We've got movies, music, and legos. That's about it right now. You think, well that's okay. That sounds fine. But come to my house and tell Lilli, "Well...you've been watching the same Sesame Street movie over and over for about six hours straight now, it's time to take a break and turn it off for a little while."

You'd see.

It's just not the same as with Josh and Chloe. I can send them off to do any number of things. Unpack this box. No, no more movies right now. Put these books on that shelf. Unload the dishwasher. Okay now go outside together and run around in the yard. I'm so thankful they have each other and they play so well together.

Lilli doesn't play with them. Lilli doesn't know how. Chloe tries to play with Lilli, bless her. Josh is still figuring Lilli out. He doesn't understand.

Lilli has been pushing me a lot lately. As in actual, physical pushing. She hardly ever does this. She will pull us to things she wants, but pushing, well, that's different. Pushing comes when she is extremely unhappy and frustrated. Pushing is the lowest, simplest way of her telling me that she wants something or does not want something. It used to not be such a big deal, because she was little. We’ve always said, Don’t push, Lilli. Use words.

Which isn’t really the right thing to say, because she has no words.

Now she is bigger. She is eleven. She can practically push me over onto the floor if I don't see it coming. Her communication device can only do so much. When she is crying mad, she doesn’t use it very well. I’m sure if I were having a complete sobbing meltdown, I would not be able to type or text very well.

She didn’t use to push this much. It’s increased in the last few months. Really since the new homebound teachers and our difficult fall began. And now the move. She has so much frustration, and pushing is a way she uses to get us to “listen” to her.

Whatever it was that made Lilli melt down into anger and tears on this particular morning during our first official week in our new house (and I really do not know), our day begins horribly, with angry crying soon after everyone wakes up. Maybe she just is mad that we are still here in this new place. And she just wants an old favorite movie to block out all the newness.

I don't know.

Chloe comments, “This sound, I’ve heard it all of my life and I hate it!” The sound being the screaming and crying. There is nowhere to get away from it in the house. I am determined to not give her a movie the second she wakes up. We have tried so hard to cut back on her screen time. We know it isn't good for her.

The crying continues for an hour and a half. Throughout that time, I put various music on to try and calm her down, make a batch of pancakes for all the kids, and try to clean up the kitchen. She follows me around, crying and pushing me. I walk her back to her room several times, thinking she can play in there and calm herself down. Her sobs escalate into screams and growls of anger. I know if she could talk, she would tell me off.

It is unnerving and I feel like I might lose my mind.

Finally, calm. She comes to me with the Nova Chat, her communication device, silently held out to me. I turn it on for her. It has a tiny button on the top, and she still cannot turn on herself, I dislike that very much. It takes away her independence. She tells me she wants to watch Learning about Letters, a movie she has had for at least six years and has watched hundreds of times.

I give her the movie.

I give it to her because it has been a long time, for Lilli. An hour and a half is a long time for her to try and calm herself down and do nothing but wait. She is now calm, and she is finally asking for it in a nice way. I want her to learn to ask for something without pushing, screaming and crying. This is much more difficult than it seems. It takes extreme patience and consistency.

I am not very good at it.

It is much easier to just give her a movie and get her to stop crying. It is much harder to wait until she finally gets through all the emotions (which can last for a long time) and comes to me silently, calmly with her communication device to ask for a movie.

Some might think, Sheesh, you just moved, your lives are all turned upside down... just give her the dang movie, don't make her wait and cry.

But I would respond, you do not know all there is to know about this situation. When she woke up and angrily started crying and pushing me, I could not just give her a movie. Wouldn't that teach her that all she has to do is cry and push me, and she gets a movie for that behavior? And trust me, I mess this up all the time.

All the time. ALL THE TIME.

Some days I am consistent and strong. Organized. I have plenty of caffeine pumping through me and I've had time to wake up and get mentally prepared. Other days I am surviving, and I give in because I am overwhelmed.

It is a difficult, daily struggle with Lilli. If I let her, she would watch movies every second of her entire life. We are always trying to get her to try to do something else. It's not easy. It's not at all like when I tell my other kids to turn it off and go do something else. Lilli's not independent like they are.

Her movies are comforting to her. Most of the time, she doesn’t even sit and watch it. She just wants it on in the background, kind of like when people put on the radio. Many times she begs for a movie, and then as soon as I push “play,” she walks right out of the room. We did not understand this about Lilli for a long time. I think it is the familiarity of it…the fact that she can probably recite every line in her head, she knows what is coming next in each scene. Maybe it’s like listening to a favorite song.

It is predictable.

Unlike her entire life right now with this move and all of the changes.

She plays with her Duplo legos on the floor next to the movie. She can’t really make anything out of the legos, she just places them differently all around on top of pillows and blankets and books. In the past year, she learned to put two square Legos together. But she still can’t build anything with them. Not yet. I hope she will one day.

Anyway, that was Monday.

The next three days were the same.

Crying. Screaming. Pushing. Frustrated. Movies.

I am so discouraged. I didn’t know this transition would be so difficult for Lilli. I am writing this down because I hope that one day I can look at it and say, Look, see? It got better. It started out pretty tough. That first week? Wow, glad we won't have to go through that again. But it got way better.

I hope that’s true.

We officially moved a week ago, on a Friday. 

We moved on one of the coldest days of the year, and when we arrived, our steep driveway was covered in a sheet of ice. The U-Haul truck, that my husband slowly backed down the driveway, got stuck. It skidded on the ice backwards crookedly into a stump in the yard, and there was no going up or down. On Saturday, he and the friend who helped us move went to three different stores to find rock salt, which was sold out almost everywhere. They were out there with the one shovel we had, and the rock salt. They got the U-Haul out, but had to put the washer, dryer, freezer, and piano up on our carport. They had to stay there until the ice melted and we could find a way to get them all back down the other driveway to the lower level of our house. (As I write this, the piano is still out there. One of these days we will find someone who will be willing to help us move it down the driveway.)

Stump behind the back right tire. 

We plugged the freezer in through the living room window and stuffed a Superman beach towel in the window crack. With all these appliances and a piano on the carport, it looked really trashy. We sure were glad to be making such a good first impression on our new neighbors. All we needed was a couch out in the driveway and a few six packs.

Then it began to snow like crazy. Beautiful thick fluffy flakes fell from the gray sky for hours, and made my new neighborhood peaceful and still, covered with quiet whiteness. Chloe and Josh were ecstatic to go out in it. They spent hours in it, sledding and building snowmen.

On Tuesday morning, I felt inspired to take Lilli out in the snow. I hoped she would like it, but I can never predict. Josh and Chloe had already been out in it since breakfast. When my husband came home from work on his lunch break, I left the baby inside with him and bundled Lilli up and took her out in the snowy front yard.  

Two children are happy, one is not.
 This was a brief moment of "I'm not miserable, but I'm not exactly thrilled about this."

She was quiet for a moment as she checked it out. Then, she began to cry and walk to the front door.

 I said to my husband, “Why don’t you take her down our driveway on the sled, maybe she will like that.” At least our steep icy driveway was good for sledding.

Josh and Chloe. The driveway is under there somewhere. And that stump.
 At least the U-haul is gone.

She didn’t like it.

I stood at the bedroom window with the baby on my hip, taking videos of all of them sledding down the hill.  Lilli was silent, sitting in my husband’s lap as he sledded with her on the saucer. When they got to the bottom, she cried and walked to the house. He looked up at me in the window and put his arms up in the air like, I tried.

Lilli hates cold weather. So we didn’t take her back out.

After my husband went back to work, I put Lilli in bed for a nap. I positioned the video monitor on her face, and went to take care of the baby. I was watching Josh and Chloe play with the neighborhood kids in the front yard, out in front of our big picture window in the living room. Chloe came running across the lawn toward the door, crying. She’d been hit in the face with a snowball. I hugged her and gave her a little love and a pep talk, and sent her back.  As she walked away, I glanced at the video monitor, and became filled with dread. I turned and ran to Lilli in the bedroom.

She was having a seizure.

She was okay afterwards, but I was not.

Later that night, after my husband got home from work, I drove out in the snow to get a box of diapers from Wal-Mart. Growing up in the north, it is not intimidating for me to drive out in a little snow. No one was on the roads, even though they were fine. I had the store practically to myself. I wandered in the eerily empty Wal- Mart for a little too long, carrying my box of diapers and looking for nothing else, really. Just shopping for calmness. A moment to myself.

When I pulled back into my white driveway, I turned off the engine and just sat there. Not really thinking about anything. Just feeling drained. From the moving. The unpacking. The boxes everywhere. The constant crying. The seizures. Trying to homeschool Chloe in the midst of all of this. (What am I, crazy?)

We will get through this.

When I finally got out of the car, I stood there and looked up at the night sky with the snow drifting down onto my face. I looked at my warm, lit up house and saw my children through the large picture window in the living room. I wasn’t quite ready to go back in yet. I saw Chloe chase Josh by the window. He must have taken something that belonged to her, again. Lilli came into view, stepping awkwardly over things that were scattered all over the floor. Her movie was playing on the tv. My husband was in our not-completely unpacked kitchen, trying to start dinner while keeping the baby entertained in the exersaucer.

I took a long, deep breath and looked up at the branches of the trees silhouetted against the twilight sky. Fluffy snowflakes landed on my face. I wanted to stay out there longer, in that peaceful night snowfall. I didn't really have any deep thoughts. I just wanted to be still.

In those rare moments of being still... in the quiet, I remember that God sees me. That he sees all of this. That He knows this is not easy. But that He alone is the One who can give me hope. And He is there. Always.

For a few brief seconds, I close my eyes and remember this.

I do not feel better. I do not feel renewed. I still feel drained.

But I just remember.

Truth is the same whether you feel it or not. We need to hang on to the knowledge of truth through the rough times, when our dark feelings get in the way. God brought us here. He has plans for us here. I remind myself of these things.

Chloe and Josh building a snowman.

This first week has been very emotional and stressful for me. Aside from the unpacking and complete mess, I'm nursing a baby who is completely off schedule from the move and not sleeping through the night. Lilli’s constant crying and frustration is unraveling me. I feel lost with her. I don’t know what to do. Maybe this is how parents feel when their babies have colic. It’s draining. It’s depressing. It’s frustrating. It’s exhausting in every way possible, physically and emotionally. I feel like I need someone to swoop in with a superhero cape and save Lilli from being so frustrated and unhappy. I knew the move would be tough, but I was thinking only about the actual move itself. As in, the heavy boxes and stuff.

I hadn’t thought about how Lilli would cope with everything being new.

All I can do is hope that it will get better, and I will look back on these days and be glad we got through it.

This was the night our heater broke and we had to lay mattresses down, find every blanket we had, and sleep in the kitchen, using the oven to keep warm. Had no firewood to use the fireplace, but even if we had, it would've been a tough decision because smoke triggers Lilli's seizures. Anyway we have heat now, so that's a good thing. My kids will remember this night as a "cool" slumber party. Note the piles of boxes around us, 

Smack in the middle of this first week, my redheaded little four year old boy turned five. We pushed every other thing going on out of the way temporarily to bake him a chocolate cake with Skylanders on top, and wish him a happy fifth birthday. When he remembers this time, I want him to only remember that he had one of the best weeks of his first five years of life, sledding down a huge hill with his sister for hours on end all week long in his new neighborhood, with new friends that live right across the street.

It doesn't matter that I am extremely stressed, and kind of homesick even. Chloe and Josh are ecstatic to be here. They are in heaven, loving everything about being in this new place. They are not complaining about moving. They are excited about their new rooms, their new friends, the new house, and the tons of snow. This was such a good change for them.

I desperately want it to be a good change for Lilli. It is difficult for her right now, but there must be something good for her in this new town. Everything is still unknown for her right now, with school, therapies, and who she will meet here. Will she meet new friends? Will she be able to go to school? We have many questions to answer in the next few weeks and months.

I remind myself of what I wrote in February, that I believe it will be better for Lilli. That there are surprises waiting for her in this new place.

The unknown in life can be scary, yes, but it also can give you hope for something good. For something different. For new chances. In a few months, I want to write these words:

Look, see? It got better.

The New Folks in Town

We have been here in this new town for almost four months now.

It is a very small town. I am torn between posting about it and keeping things move private now, because it is so small. If anyone in this little town begins to read my blog, I might feel like I cannot share things openly like I once did.

Small towns are different.

My husband and I met in a small town fifteen years ago. I am quickly being reminded of small town talk as we get settled in here. Everyone knows everyone. Everyone is connected in some way. In one meeting I had with Lilli's new teacher and several therapists, we were wrapping up the discussion and I said, "If you want more information about Lilli or you need anything, feel free to call me." And one of the therapists joked, "Oh, well, I know where you live." And another therapist said, "Yes, we all know where you live."

I smiled and laughed. We all laughed. It was funny, but inside I was really thinking, What?! How do they all know where I live?

It's been a few months since that meeting.

Now I know. Everyone here knows where everyone lives.

We are the new family in town. People know who we are. Our neighbors are connected to us through school or through my husband's practice. Strangers have come up to me and asked me if I am Jasen's wife. They recognized me from my picture at the office. Phone calls I have made for various reasons have surprised me with reactions of people already knowing of us. One call I made about enrolling Josh in preschool, when I told the person our last name: "Ohh! I know who you are!" I visited a church one Sunday (Jasen stayed home with Lilli as we have to take turns visiting new churches right now). I snuck in late and thought nobody saw me. I was wrong. After the service I was surrounded by six people who already knew who I was. "Excuse me, are you Dr. ________'s wife? I thought so!"

It's almost kind of intimidating, to know that people know who I am already, when I don't know anyone. This is because my husband came here long before I did, commuting for about eight months before we finally moved here. He has met a lot of people through his work. His practice is well known in town, and word travels fast.

It may prove to be a wonderful thing for my children, to grow up in such a small, close knit community. It also could make me paranoid about things, knowing that not too much is really private in this town. After living in a more densely populated area near a small city for the past five and a half years, I do have an appreciation for being somewhat anonymous in a community. Especially when shopping and running errands.

My husband hasn't helped this issue at all, as he decided to advertise his business on the shopping carts at the local grocery store here. This happened a month before we moved, when he had still been commuting. He thought it would be a good idea to advertise in a place where everyone goes, because we were going to be new in town. He took a picture of the two of us holding baby Nate and put that on the ad.

The first time I went to the grocery store after we moved here, I went to get a cart and I almost fell over. I gasped in shock, and then laughed at the rows and rows of carts lined up, all with my picture on every... single... cart.

Great. So much for anonymous grocery shopping.

I pushed my cart through the dairy section and an older man looked straight at me and smiled.

Well, this is something, I thought. He is either

1. Just a nice friendly, smiling man who is being nice to strangers
2. A creepy guy checking me out
or 
3. He recognizes me  from my picture on every single cart in the store.

I'll never know for sure.

Oh my. Who the heck are those people? I'm covering that up with my purse.

Why is that woman taking a picture of her grocery cart? What a total weirdo.

You might know from reading about my shopping experiences with Lilli that I prefer to keep our shopping trips short and anti-social, because Lilli has a very hard time with going to stores. "Hard time" meaning: loud crying, shrieking, pushing, collapsing on the floor, running away. As if shopping is pure agony. (It is to many people, we just don't all act out our feelings.) We almost always draw a lot of attention to ourselves. I have not attempted to take her to this grocery store with me yet in our first four months of living here.

That day will come eventually. (Maybe.) But for now, I am happy about the fact that the grocery store is two minutes from our new house, and I can leave the kids with my husband and dart out by myself to pick up food.

The ads were only supposed to be on all the carts for one month, but a bunch of them are still hanging around. Maybe the ones that were in the far corners of the parking lot on the day they were supposed to be changed. Last week I had Josh, Chloe and Nate with me at the grocery store while Lilli was at summer tutoring for an hour. As I pulled out my wallet to pay, Chloe said loudly to Josh, "LOOK! Josh! That's mom and dad on the grocery cart!" She pointed to the cart at the end of the register next to us. "SEE? SEE? Look, it's Baby Nate!"

"Yes I SEE!" yelled Josh. Both of them looked at the cart and discussed it loudly for another moment.

I just kept on rummaging through my purse. Crazy kids. I don't know what they're talking about.

I have several posts that I've written since we moved here, that I will be putting up here soon. At first I held back from posting them, because I did not want to be a downer. Things started out pretty tough here for Lilli. I even wrote the gentler version with some of the crazier stuff edited out. I can't put it ALL out there, I never know who is reading this stuff. I knew it was going to be tough, but I didn't know that the beginning would be that challenging.

But as I had hoped and prayed, things did get better. And they are still getting better every week. Just so you know I am being genuine, life always has its ups and downs and when I say it is "better," I don't mean it's all rainbows and fluffy clouds and kittens all the time. It's better because we are through the tough transition period.

Well, sorta. Almost through.

So things are settling down a little. I wanted you to know about how things got better, instead of leaving you all hanging.

It is a new adventure. The story isn't over yet.

Driving and Moving Towards Our New Life

I am driving on a mountain road, following my husband's car. I have all four of our children, who happen to be sleeping or quiet at the moment. My husband has our dog and a bunch of empty boxes, which we spent all weekend unloading at our new house. We are driving back to our old house. We will fill these boxes back up, to get ready for our last big trip up in two weeks.

I am excited, hopeful, and also concerned at the same time for this big move. Moving means new hope to me. New opportunities for Lilli. New opportunities for all of us. I have decided that instead of being scared of the unknown, that I am going to be hopeful. Hopeful for her new school and new teachers. Hopeful for some real friends for Lilli. More time together as a family. More chances for us to relax and enjoy each other. More rest. These are things we dream about and talk about often.

Most of my dreams are focused on Lilli at the moment. We just had an IEP meeting for her, looking ahead for next year. This has been a very rough school year for her, so I am hoping it will get much better in this new place.

My rear view mirror is tilted just-so, focused on Lilli who is sleeping in her oversized special needs carseat. Every few minutes, my eyes glance over to the Diastat kit (emergency medicine to stop a seizure) which is sitting on the center console next to me. I know that it is there, but I can't help but continue to make sure. It's a nervous habit I've developed over the years. She had a seizure at the new house this weekend, on the air mattress we are using to sleep on the floor. Maybe that is partly why I am so paranoid as I drive. Maybe it's because of all the unpacking, and being off schedule. We never really know for sure.

We are exhausted. But this is currently our "normal." We are used to it.

I know that my husband is watching us carefully in his rear view mirror right now. If I make the slightest move to slow down or move to the side of the road, he will pull over immediately and leap out of his car, running to mine. Seizures in the car have happened so many times before, I have lost count. One of those times, we were moving. He was driving the big Penske truck in front of me. I was driving the mini van with Lilli and Chloe, and Josh was seven months away from being born. We were inching forward in a traffic jam on the interstate.

I saw Lilli start to have a seizure in the rear view mirror, and I swerved to the shoulder. Jasen swerved the truck over too, and ran back to me. I called 911, but I didn't know where we were. Chloe was yanking on her car seat straps, yelling about having to go potty. People drove by slowly in the thick traffic and gawked.

I even remember what I was wearing that day. It was July. I was wearing a blue sundress, and it was hot. Nauseous with morning sickness, I ran down the shoulder of the road in the windy heat to see the number on the next mile marker sign, so I could tell the 911 operator where we were so an ambulance could get to us.

To this day, when Lilli falls asleep in the car, I make a mental note of each exit as I drive on the highway, in case I need to call 911 and tell them exactly where we are.

It's experiences like this that make me high strung and paranoid.

As I drive, I think about the past six months and how much we have experienced. I have been quiet on this blog for a long time now, deeply troubled by a negative reaction to a past post. I haven't stopped writing. Just stopped posting. Tentatively, I will start to open back up a little bit.

I will look back on these past six months and say that it was a season filled with extremes.

Extreme joy. We had our fourth baby in September. He is a beautiful, healthy baby boy who has done nothing but make me smile since he arrived. His name, Nathanael, means "Gift from God," He is laid back, easily soothed, and he fits right into our noisy, busy lives and goes with the flow. Quite a gift.

Extreme exhaustion. We have been packing, moving, painting, and traveling back and forth from the new house (an hour and a half away, with a newborn) since December. Moving OR having a newborn are each a big deal by themselves. Put them both together and you have to hang onto your sanity with a tight grip.

Extreme frustration. Lilli's school year will be difficult to describe. I do not think I can covey the amount of daily meltdowns, screaming, tears, and frustration around here in the past six months with school. It was not like this in the past three years.

I am afraid I started getting used to it.

And it's not supposed to be like this.

In the beginning, I braced myself for it each day because I figured it was a transition. I assumed it would get better. I never saw Lilli act like that for her past teacher, Ms. Leslie. I figured, new teachers, new routine... it will get better eventually. 

It didn't get better.

At the pumpkin farm we go to every fall. Lilli hated it. Even though it's heartbreaking, I chose this picture because it sums up our fall.  Lilli was pretty much extremely unhappy for most of it. Josh and Chloe were happy, and the baby slept for most of it. The entire fall, I'm talking about, not just the pumpkin farm.

Even this week, screaming and crying that hurts my heart and makes me want to cry. It seems so unfair that after all the progress Lilli has made in school, that we would lose it all in just a few months' time. We took huge steps backward. I really struggled to remain positive this past fall. It was hard to remain hopeful about her academic progress, even after everything we have experienced with Lilli. I felt like the gains we had made were all slipping away. One person suggested that Lilli did not "regress" so much as she just stopped progressing. 

I'm not so sure about that.

I believe this school year has been particularly challenging because everything was NEW for Lilli. And new is not necessarily good for a child with autism who likes everything to be the same.

We had been with the same teacher and therapist for three years, and then everything changed. Lilli also no longer had ABA therapy hours. This felt like a huge empty hole in our days. I felt like she was floundering, forgetting many of the skills she had worked so hard to gain. I was overwhelmed to suddenly not have that support in our lives. As a result, I felt like I could not keep up. I had to prioritize.

No, it was more like survival.

All that work to keep her shoes on? Gone. She's barefoot again. The ABA therapist's awesome success with Lilli putting her own earbuds in and listening to music? Not happening. Watching too many movies and not enough books? Yep. Meltdowns, tears and anger are daily now with school. If anyone reading this has the least amount of judgement in their mind, please keep reading my blog. You are the reason I write.

School this year - still homebound services in our home - was a new time of day (afternoon, which totally stunk but that was all that was offered to us). Last year it was 8 am to 11, and it worked perfectly. This year it was 3 pm to 6 pm. All parents of young children who lose their minds just before dinnerime, let that time sink in for a minute.

New teachers - three new homebound teachers. That was honestly the hardest part.

This girl. Oh Chloe, you have no idea what an
amazing sister you are. 

And our schedule was totally new and different. My husband started a new job with a new schedule which required him to commute 3 hours each day. It's a great job. We are so thankful for it. But it was another change. We were used to having him come home on his lunchbreak, and home for dinner. Now, he was gone from 6:30 am until 7:30 or 8 pm, and this brought new stresses into our situation. I know Lilli was affected by it. It was a long day for all of us, with Lilli having school at the end of the day. That is partly why I say it was survival.

Let me tell you what you might miss in this
picture. We are standing in a parking lot
at the local museum.
Chloe is holding onto Lilli with a tight
grip so that Lilli will not run away, into the
parking lot that is busy with cars.
Yes, Chloe is different. She has Lilli for a
big sister. She gets it. 

The biggest change for Lilli was that we were about to have a new baby. Lilli had been through it three times before, but it was a challenge each time for her to have her mom morph into a huge, waddling, moody, tired mama. Lilli requires a lot of physical help with bathing, dressing, toileting, and some lifting. She still wants to be picked up. You can tell her no, but she will literally climb up you like you are a tree. I just couldn't be the same mom for her while I was pregnant.

Right before Nate was born in September.
 I know what you're all thinking. Pop!
Don't ever, ever say the word "pop" to a pregnant woman.
 I'm dead serious.

Changes in routine can be tough for anyone, especially children. But it can completely throw a person with autism off for the entire day.

Or as in our case, the entire season of autumn 2014.

Lilli's new baby brother arrived at the end of September. Lilli absolutely needs consistency and routine, and there was very little of that around here with a newborn.

On top of all the big new stuff, we found out that Lilli had been dealing with new teeth.

In mid-December, I took Lilli to the dentist, who told me that Lilli had lost several molars since her last appointment six months ago. What?! Never saw a molar fall out. Tooth fairy didn't know to come. Holy mackerel, no wonder tooth brushing time was such a challenge. This is the kind of thing that happens with a non verbal child. The dentist estimated that the teeth were lost two to three months ago and the new ones started coming in. (How do you lose molars unnoticed? But it happens. One night Jasen found one of Lilli's molars in his work bag. We don't know how it got there, or when. It was a beautiful, perfect pearly white. We put it under her pillow for her and she got her tooth money.) So Lilli had been suffering with loose molars, lost them, and had tender gums with new teeth coming in around the same exact time that she lost her ABA therapist and got new homebound teachers at a new time of day, and a new baby brother.

No wonder she cried a lot this fall.

We had even taken her to have a doctor check up, but nothing was said about teeth. We thought she didn't like her new teachers. And maybe she didn't. We thought she was having trouble with all the changes. And probably she was.

Even the room in our house where she had school changed because one of the new teachers was male, and I felt uncomfortable with the idea of Lilli being closed back in her bedroom with him at the end of the hall. So we moved school out to the sunroom, with a windowed storm door to keep things feeling separate. This might seem like not a big deal, but when everything else in Lilli's world was changing, this was one more adjustment for her to cope with.

Every day during school, Lilli pressed her face up against the other side of the glass storm door to the sunroom, sobbing, looking into the kitchen with pleading eyes like she was a caged, tortured animal. It would almost have been funny, the way her cheeks and mouth pressed against the glass, except that it was absolutely heartbreaking. I hated that she hated school now. She was not like this at all for the last three years with Leslie.

Behind Lilli, on the other side of the door, the new teachers tried to figure Lilli out.

It takes a very long time to figure Lilli out.

Our only saving grace with school was that Lilli's previous teacher, Leslie, was still connected to her, but in a new way now. Leslie came to briefly visit twice a week to assist the new teachers in the transition. We also arranged for Leslie to be Lilli's assistant for the one hour she went to visit the school each week. When Leslie was here visiting, Lilli was happy. But as soon as Leslie would leave, Lilli would almost always fall apart and sob.

Whenever people asked me how it was going with the new baby, I always said the same thing. "The baby's easy! It's Lilli that's hard." I really meant that. I tried to remain hopeful, but I began to dread Lilli's afternoon school time.

I would be sitting in the rocking chair in the living room with my sweet new baby, completely stressed to the core by listening to Lilli's growly screams and shrieking crying. This happened every day. Sometimes she cried angrily for long periods of time. Sometimes she would bang on the door and sob with sorrow. I cannot describe how stressful, puzzling, heartbreaking, and upsetting those hours have been, for months straight.

Often I went out to the sunroom, carrying the baby,  and tried to see if I could help. Sometimes I thought it might be best to leave them alone and not intervene. Some days I have been teary and discouraged. Some days I have just been mad. I have wondered, why couldn't someone else just figure it out? Some days I have been frustrated with Lilli because of acting this way for the new teachers. Was she manipulating them?  I was sick of trying to figure it out. I was tired of making suggestions, tired of Lilli tantruming and crying every day. I was just... tired in every way possible.

The days were long.  I would think about wives who had husbands that traveled for work or served in the military for months at a time, and tell myself to quit complaining, that I had it good. My mother in law was my lifeline, and came over to help me in many ways. A small church that we do not even go to sent us delicious home-cooked meals for two weeks, and I will never get over their kindness. They had no idea how much they helped us during those chaotic afternoon-dinnertime hours. I am not sure how we would've survived without the help of that church, and my in laws.

At one point in November, I said to my husband after another awful school afternoon, "These teachers are going to quit. I just know it. No one would hang in there after all this time of crying and doing nothing."

And sure enough, one did quit. He said it was because of other reasons but I wouldn't have blamed him for giving up. I overheard him through the storm door one day saying firmly, "Point to the number 6, Lilli. No, the 6. No, that's not the 6. Look. Point to the number 6."

This was crazy to me. Lilli knows numbers. Lilli can do addition and subtraction. He was taking it down to the simplest level of number identification. She would not point to anything he asked. It was obvious that he was frustrated with her. She would not do math for him, or anything else. She would not do any of the things we told him she could do. Did people think I was making it up? Oh yes, she can do math! Sure. For three solid months, every day for three hours a day, he never saw her do anything other than cry, chew on Legos, and play on Starfall.com.

In the beginning, I was highly motivated to convince the new teachers of how much Lilli has going on in her mind. I kept saying, "She's smart. She can do math. She has been doing addition, subtraction, multiplcation, and fractions. She is doing 3rd and 4th grade spelling words. She likes to be read to, and Leslie used to read grade level social studies and science books to her." I knew I wasn't crazy. Three professionals had just spent the last three years seeing all of what Lilli could do.

I felt stupid after a few months. She never showed the new teachers that she was capable of any of that. I stopped saying, "She used to..." because it seemed hopeless. I didn't know why Lilli wouldn't show them. Here she was supposed to take a computerized grade level state test in the fall, and she wouldn't even point to the number six.

She had completely shut down.

I continued to tell Lilli that she needed to show other people how smart she is. She needed to prove to others that she could do this schoolwork, so that her teachers would continue to believe in her. Lilli didn't seem to care about that. She was just angry. I didn't know what was going on with her, I only knew that she was incredibly unhappy and frustrated.

The director of special education even came to our house for two days and observed, trying to help. Then we got a new teacher to replace the one who quit. A third new teacher within five months. She started at the beginning of December.

Others asked me why I wouldn't just homeschool Lilli and teach her myself. The long answer would be another post. The short answer is this:

I can't.

I need others to help me with her. We do so much to help Lilli for twenty one hours of the day, it's not too much to expect help for three school hours from an experienced teacher.

Maybe Lilli was not regressing. Maybe she just hit the pause button when everything changed. Everything was so new and different and frustrating for her, to have new people who did not know or understand her. Not only did they not understand her, they were very frustrated with her. It makes sense. Sometimes I would hear one of the teachers saying over Lilli's loud crying, "WHY are you acting like this?! WHAT is wrong?" But the sad fact is, Lilli could not answer the teacher even if she wanted to. This is the point of having the teacher here - to teach her to use her communication device. But Lilli was not able to answer a question like "Why are you acting like this?"

It must be awful to not be able to speak. All Lilli could do was cry.

It was just a very hard season for Lilli. But we have new hope heading into this move.

Soon we will meet with the new school district. Soon we will make new decisions about Lilli's education, and already I see big changes coming. Good changes.

In this year of 2015 we will begin many new things. New home, new schools for three of our children, new community, new church...all with a new baby. I laughed one night and said to my husband, "Well let's see, are we doing this right? In 2013, you graduated from school, got a new job, we bought a new house, we fixed it up, and moved. In 2014, you got a new job, we had a baby, we bought a new house, and we will be fixing that one up and moving again. What will 2015 bring?"

If you were raised in the church, you might be familiar with the passage of Proverbs 31. It is about being a wife and mom. The woman in that passage used to seem to me to be unrealistic and completely, impossibly perfect.  But no one is perfect. Through reading and teaching the Bible to my children, I have only in recent years been able to start really imagining these people in real life situations as I describe them to my kids. It used to feel distant to me, in black and white Sunday school drawings in my mind. But now I can see real people.

[a]A wife of noble character who can find?

    She is worth far more than rubies.

11 Her husband has full confidence in her

    and lacks nothing of value.

12 She brings him good, not harm,

    all the days of her life.

Now I have come to realize that Proverbs 31 is not about being the "perfect" wife and mother. I am certain that woman had her failings and times of discouragement, they just are not pointed out to us. She surely had her moments when she was exhausted and covered with baby spit up, and dinner was burning while she yelled at her children to clean up their messes and help her. That part where is says she gets up while it is still dark? I used to imagine a serene, lovely, perfect woman waking up and gliding out to the kitchen humming like Snow White. But now I really think she woke up exhausted to a crying baby at 5 am and dragged herself out to make coffee like any typical mom, praying for strength for the day and mentally running through her upcoming schedule. She is a woman I aspire to be like, in attitude and skill. She is not perfect. She is just a hard working wife and mom with a good attitude about life.

She considers a field and buys it;

    out of her earnings she plants a vineyard.

This part? I think of it as, "She considers an inexpensive item at the local thrift shop, and buys it. She sells it on ebay and uses the profit to pay for her kid to go to preschool."

When it snows, she has no fear for her household;

    for all of them are clothed in scarlet.

My version is "When it snows, she is not worried, because she bought snow pants on clearance last May."

When you read it, imagine a real live mom. It's not so crazy if you try to put it in a modern day situation. It's simply about a woman taking care of her family. And that's any mom, whether she is working or at home. This woman is both, because she works from home.

20

I hadn't looked at it in a long time, so opened my Bible up to Proverbs 31 to check it out. I wanted to re-read the one line I really remembered: "she can laugh at the days to come." And I smiled to myself, because when I flipped to that passage, the only line I had underlined on that whole page...was that line.

She is clothed with strength and dignity;

    she can laugh at the days to come.

She can laugh at the days to come.

What does that even mean? I want to laugh at the days to come. Not in a cynical way, but in a hopeful, trusting way. I want to look forward to the future, to be excited about the unknown, to have hopes and dreams. I want to keep on laughing, because I am laughing right now. This is crazy - to be moving again and starting all over. I will have to go through this new-teacher thing with Lilli all over again. But I have learned a lot from 2014. And I am excited about 2015.

There are good things to come. I really believe that.

Though there will be many days, I'm sure, where there will be tears of frustration and exhaustion. I really hope that the laughing outweighs the crying. Or maybe that when there is crying, that we can laugh at the same time.

A happy moment, taken on December 2nd. This was taken in the afternoon, before school at 3:00. 

Selfie with a gingerbread house that Lilli helped decorate. This was pretty much my "look" for the past six months. I post it with no shame. I am a make-up-less, pony-tail wearing, tired mom with a newborn. 

It is easy to have hope and faith during the good times, when things are going well.  It is really tough to have faith and hope when everything is going wrong and you're feeling discouraged. Faith that is not tested is really not worth much. I think that this fall, my hope was tested.

I just read through my previous post about having crazy hope. Sitting here at 5 am in my quiet kitchen, I am teary with a thankful heart that God is good, and He is faithful and gracious. He does not promise that life will be easy. When we face our toughest days and we are at our absolute worst, there has to be something we can grab onto and hang on. I hang on to the knowledge that God is good, no matter what.

I need to remember that He loves Lilli more than anyone does, and He has great plans for her. Many days I have a hard time seeing that. Many days I am filled with discouragement, and I don't know what to expect.

But I can say that God always surprises us. He really does. My husband has a new, amazing job. All fall, we searched for a place to live near his work, and for awhile the circumstances were looking like we were going to have a lot of trouble finding a new home and moving there. Jasen continued to commute, handle everything that comes with a new business, and look for a decent place for us to rent and raise our family.

Remember what I wrote about in my post about hope? About how God gives us immeasureably more than all we can ask for or imagine?

In December, I stood in my new back yard of our newly-purchased home and looked around with tears in my eyes. I looked at my husband and said, "Now this is immeasureably more than all we can ask for or imagine."

It wasn't an amazingly perfect house or yard.

It was the fact that it was perfect for us.

It was so perfect, I'd never even stepped foot in it until after we bought it. When my husband saw it, he just knew. He called me and sent pictures. I said, "I know this might be insane since I've never even seen it, but I think you should make an offer."

He responded: "I already did."

Happy belated New Year to all of my readers. My hope for you is that this year, you can laugh at the days to come, with joy and gratitude for this life we have been given. As always, thank you for caring about our family, our journey, and for reading and commenting on here, or on facebook. Your encouragement is invaluable to me.

Reality Versus Hope and Faith: Why I Choose Crazy Hope

I’ve been thinking about the concept of “reality” lately.

I realize that some may have thought over the years that I am slightly out of touch with reality. All you have to do is look at us from a short distance, and my hopes and dreams for the future will seem ridiculously out of reach.

For example, in the past when I have expressed the hope that Lilli will speak again one day, I know that there are some who feel sorry for me, because they think that, realistically, it will never happen. This is based on well known, research-based statistics that say that if a child does not talk by the age of six, they will never talk.

Well I don’t care one bit about that stupid statistic.

If you just read that last sentence and shook your head, thinking, She’s nuts. She can say that she doesn’t care about statistics and reality but that doesn’t mean they are not true, well, this blog post might irritate you all the way through. Because I am going to try my best to explain our view of reality... and crazy hope.

I am pretty sure hope and faith would not make sense to someone who is focused on reality all the time. It is a completely different perspective on life. Am I saying that I live with my head in the sand, completely out of touch with reality? No. I am choosing to focus on hopes and dreams instead of setting my sights on what is right in front of me, and on what others think is realistic.

I have hopes for Lilli that do not make sense to others. I hope that Lilli will do certain things independently one day.  I hope many things for Lilli.

Here is a list of some of my hopes and dreams for her: (many may seem lofty...or "unrealistic")

• That she will talk. Any words at all. She used to have a list of words. I dream that they will come back. Very often she will "say" something and it sounds so much like a real sentence - real words you can pick out...but just garbled up. 
• That she will be completely independent when using the potty.
• That she will type completely independently, and read independently with some sort of e-reader. I mean hold it and read it herself.
• That she will feed herself with utensils – an entire meal.
• I hope she will help around the house one day and complete simple chores like picking up clutter and wiping the table.
• I hope she will dress herself, even if it’s in an elastic waistband pair of shorts and a pullover shirt with no buttons.
• I hope she will put on her own shoes – even if they are Velcro or slip ons.
• I hope she will participate in a class at a school and work on grade level to independently complete challenging academic work, even if it is adapted through a computer or on an ipad. (Right now she is doing this with help.)
• I hope that one day, she will have real friends that she can communicate with independently and spend time with. I hope she will learn new activities and be able to participate in them independently with satisfaction.

I used the word "independently" a lot. Which is not very realistic, because she really isn't independent with much at all...right now.

These are things I hope for, whether others think they are unrealistic or not. How can I not hope for these things to happen one day?

I don’t really care if other people think I am focused on goals that we may never attain. All of the goals we have ever had for Lilli have been "unrealistic" in someone's eyes. Way back to when she was in the NICU and had a feeding tube in her nose and I still had lofty dreams of breastfeeding her. She had so much trouble even taking a bottle. I remember sobbing and sitting on the couch trying to nurse her for two weeks after she came home, so extremely frustrated. 

It took a long time, but she finally got it. I was crazily determined. And then I nursed her for two years. 

Then there was the speech therapist who said, "I don't think Lilli understands that a picture represents an object," when I asked if we could try the picture communication system, so Lilli could have some way to tell us what she wanted. We tried an experiment with pictures on a board. Lilli would not pull the pictures off. She just sat there and cried. 

We could have given up then. But we didn't. We found other therapists who shared our hopes and kept trying... and eventually, Lilli "got" it. She used the picture exchange system for years until we got the ipad.

I see everything else Lilli has ever learned in her whole life as being just that way. Taking forever, seemingly impossible, with some other people sympathetically saying, "It's ok, she's different, she just can't do this, and it's OK."

No. 

That's not how it is with Lilli. Lilli is like climbing a mountain where you cannot see the top. I don't know how big the mountain is. I don't even know if we will ever get to the top. But we still have to climb. Otherwise we'd just sit on the side and cry.

Would you think it would be better for me to just say, “Well, that’s it. We tried for a few months, but she just doesn't get it. I have to be realistic, she has brain damage, so I guess we will just put her in an institution and move on. Oh well.” 

That's how I feel sometimes when people think "realistically."

Reality

I'll focus on reality with Lilli for a moment. All of those goals I listed above that I hope for, well, they might sound crazy. Because she’s not even close to any of them. Just not even close.

If I were to look at my life with stark reality right now, I would say these things:

Lilli cannot talk. She has brain damage. She used to say words when she was one, and then they all disappeared. 

This is reality.

Lilli has been potty training at the pace slower than glaciers melting, for the past seven years. She has absolutely made progress. But she is nowhere, nowhere near independent. This is reality.

Lilli does not feed herself, dress herself, put on her own shoes, complete household chores, or complete schoolwork independently. Reality is that we help her do every single small thing all day long, and very often, that depresses me and exhausts me. I have many moments every day when I sigh to myself and feel utterly defeated. 

Like climbing a mountain, indeed.

Reality is that Lilli does not have any friends that she spends time with. Lilli has never had a playdate. She does not have friends that call. She has never had a “friend” birthday party. We would not know who to invite. She has never been invited over to a friend's house to "hang out." I really do not even know any other ten year old girls around here. Last week Chloe made my heart hurt when she looked at Lilli playing with Legos by herself and commented, "Lilli needs a friend."

Yes. She does.

Reality This Week

ABA therapy is over. It ended in July. All of the skills and goals Lilli has been working on for three years...right now the depressing reality is that Lilli is just not getting that therapy. It’s done. It’s done because the state says “You only get three years.” No matter what. So that’s it. We went from 29 hours of ABA therapy a week…to nothing. Even more depressing, our beloved therapist, Morgan, moved away to another state. 

School is starting in two days, and Lilli does not have a homebound teacher. Yet. They are working on it. 

Lilli’s beloved, wonderful homebound teacher of three years, Leslie, has just taken a full time position in the school, and we do not yet know what will happen with Lilli’s homebound program.

We just had three amazing years of intense ABA therapy with Morgan, and with Leslie, our fabulous homebound teacher coming every day, and now, all of that has changed. I do not know what comes next. I do not have a clue.

I am stumped as to how this school year should look. Every day I have waited on news from the school district, waited for the phone to ring...to know if Lilli even has a new teacher. Thursday, I got news that things are in the works. We just need to be patient. Maybe God will send us a new, incredibly awesome homebound teacher this year.

I really hope so. It's Saturday, and school begins Monday. 

These realities are difficult to type out. But they are truths. It is our reality.

For right now.

Hope Doesn’t Always Make Sense

The thing about hope and faith is, well, they often do not make sense. In fact, most of the time, it might seem just plain crazy to other people. 

I always look back to our past in order to learn and remember that hope always comes first. 

Hope comes before things become real.

If we all focused on reality - what we know for sure -  all of the time, what kind of depressing life would that be? We would never do anything challenging. We would never take risks. We would never dream or hope for something that seems out of our reach or completely impossible.

People who accomplish amazing things in life start out with crazy hopes and ideas, and often others think they are out of touch with reality.

And where do we put our hopes? If we put hope in ourselves, we will fail. Because we are human. No one is perfect. We all, always make mistakes. No one is even close to being perfect. 

If we put hope in other people, they will disappoint us. How many married people can say that they put their hope in their spouse, and they were deeply hurt or disappointed? How many can say that they put their trust and hope in their parents, teachers, friends, pastors, or some other trusted person in life, only to be shocked by hurt or deep disappointment? 

But I am talking about putting hope in God. Hope comes from God.  He made it. He gives it to us. We don’t find hope in ourselves. We don't find it in other people. Big, crazy, impossible hopes are easy for God. He can handle anything.

I hope for big, seemingly impossible things, because small hopes are “realistic.” When you hope “realistically,” you put parameters around your hopes. You see an end result in your mind that you think you can accomplish on your own. They are not really hopes, they are more like "goals." You are only hoping for something that you think you can control yourself. When people say, "I don't want to get my hopes up," I think that means they are afraid to hope, because they know they are unable to control the outcome themselves and they are trying to avoid disappointment.

Big hopes are for when faith is required. Big hopes seem crazy to others. Big hopes are for miracles. Big hopes are when you ask God for something, because there is no possible way on earth you could ever do it on your own.

Immeasurably More

This is a verse I have always loved:

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
Ephesians 3:20

It is describing that God can do so much more than we ever hope. This is where reality is left in the dust. It’s not just “more.”

It’s “immeasurably more.”

It’s not just “what we ask for.” It’s “more than all we ask or imagine.”

When we only focus on our reality, there is nothing to hope for. But when we look at our hopes and our dreams, that’s where God steps in and surprises us, when they are things we could not possibly accomplish on our own. I might not think this way if I had not experienced it in the past. I think all of us have experienced it at some point in life, but some may just not recognize it.

What is something you hoped for, and then things in your life turned out way better than you ever even imagined or hoped? A better ending than you had ever even dreamed? Surely there is something.

This is how I look at the story of Lilli: it is not over yet. It has barely just begun, and I really have no idea what life will be like for us in ten or twenty years. We are only in the beginning chapters. I have a choice. I could sit down and cry about how I think she will never be toilet trained and how I might as well give up on trying to get her to type because she’s just not getting it and it’s not realistic to try and teach a child with autism and cerebral palsy to type.  I could give up on a lot of things, because they are not “realistic.” I could sob for weeks and just resign myself to the fact that she will just need to go into an institution for full time care and "this is my life." 

Or... I could focus on my hopes and dreams for her, and wait to see what God has for us that is “more than all I can ask or imagine.”

Crazy Hope Makes a Person Look…Crazy

Here is just one story of how I learned about crazy hope.

Six years ago, this was our "reality":

We lived in Virginia. Jasen was a middle school teacher with a steady income and insurance coverage for our family. We owned a home. We had two children, and I was a stay at home mom. We were extremely frugal and were careful to make ends meet on his new teacher salary so I could stay home, because Lilli needed me home and I had baby Chloe. We had friends, belonged to a church, and had a routine. Life kind of made sense, in many ways. Jasen worked hard to pay the bills and care for the big things around the house and yard. I worked hard to care for our young girls and take care of all the things a stay at home mom takes care of.

Yet, things changed drastically. God sparked a dream in Jasen’s heart. We began to pray earnestly about making big changes. God was leading us in a direction that was completely unknown.  It seemed crazy! How could this be? Why would we “fix something that wasn’t broken?” Many circumstances brought us to this new perspective in life, and we were certain that God was leading us in a completely new direction.

These became our hopes back then:

• For Jasen to take organic chemistry, apply to chiropractic school, and get accepted. 
• For us to apply for and get gobs of school loans.
• For us to sell our home (in a dead market, on a street with five other homes for sale).
• For Jasen to quit his job, trusting that this was the right thing to do.
• For us to move to another state, where Lilli would attend a new school, have new therapists, and Jasen would attend chiropractic school for almost four years. 
• For Jasen to graduate and open a practice somewhere. 
• For us to own our own home again. Maybe have more children.

It was ridiculous. It was not “realistic.” And it certainly did not make any sense.

Who in their right mind would do such a thing? So drastic! Such a crazy risk! What? Take out loans? Begin a new career at the age of 42? Jasen already had a perfectly good career. We had a home and a life. Why in the world would we ever leave that, to venture into the unknown?

Because of hope. That’s why. We hoped for bigger things. Crazy things.

And because of God. Because He can do immeasurably more.

Our reality now… was only crazy hopes and dreams six years ago. Back then, whoever we told our plans to thought we were absolutely nuts.

Our Crazy Hopes Became Reality

We sold our home in record time (before all the other houses on the street, for a good price). That was amazing. We did not do anything more special than anyone else trying to sell a home. We moved here, and Jasen completed his doctorate and graduated at the top of his class. He now (as of three weeks ago!) owns his own practice. We own a home, unbelievably. Buying this home was a small miracle, for so many reasons I cannot explain here. We were blessed to have a third baby in the midst of all of that (Josh). And now we are blessed to be having a fourth baby in less than two months. We were blessed beyond belief to have ABA therapy for three years with Morgan, and homebound for three years with Leslie. These young women helped change our lives. We were blessed to finally find a loving speech therapist who truly believes in Lilli's intelligence and potential, and has worked hard to help us make immense progress with communication devices. We were so blessed to find all of these wonderful people here, that God put in our lives for so many reasons.

I never saw that coming. I had no idea how amazing some things would be when we moved here.

Was it easy? Heck no. Was it crazy? Yep. Was it impossible? Not to God.

And don't think for a minute that we ourselves made any of that happen. You could argue that Jasen worked hard and studied all the time. You could argue that we worked hard to make our home nice so it would sell. You could argue a few things. But not really that much. We had nothing to do with the crazy buyers who purchased our home overlooking the TWELVE STEPS up to the front door. We did not have anything to do with the amazing teachers and therapists that were put into Lilli's life to help her. We were amazed to find our church, where Lilli has her own class with awesome volunteers and Jasen and I can actually drop her off and go to service together. And was it a miracle that Jasen was able to actually focus, study and be so successful in school with three young needy children (who didn't sleep much) around him all the time? You bet.

We had so little to do with all of the incredible things that happened to us. 

This is what I have learned. When I look at my life with the perspective of “reality,” there is little room for hope, or faith. I set my sights on a future that only I think I can achieve.

When I hand my future over to God and put my hope and faith in Him, He is the one who makes things happen. He alone is the one who can open or close doors. When we think that we are making things happen on our own, we make God very small and insignificant. Many people think that God is distant, mysterious, or does not exist at all. They cannot fathom why a person would ever put faith in an invisible god who seems to be a figment of imagination to many.

I struggle to explain to others why God is so real to me. That He reveals Himself to those who truly seek Him. That He is evident, everywhere, all the time, but only if you are truly looking to find Him. If you don’t look for Him, you won’t find Him. If you don’t believe that He might possibly be real, you won’t experience meeting Him.

Reality Now: Time to Have Crazy Hope Again

The story of how Jasen came to have his own practice is a chapter of its own. During the past seven months, we found out we are going to have another baby, Jasen worked incredibly hard to acquire this new business, Lilli’s ABA therapy came to an end, Lilli’s therapist Morgan moved away, and her homebound teacher is moving on to a new job. I decided to homeschool Chloe for the first time ever, beginning this school year. The baby is coming in a month and a half. Meanwhile Jasen is commuting, and we are just waiting for awhile until after the baby comes to figure out all the moving details.  Doors are closing and opening all around us, faster than we can keep up. Reality is that we are in transition, and we are not sure what comes next for Lilli, school, where we will live, when we will go, and how we will eventually transition to the new location an hour and a half away in a new state (where Jasen has his new practice) by next year. 

Reality is that I have mounds of paperwork ahead of me, getting new specialists, doctors, therapists, and teachers for my children, along with a very likely battle with insurance and new state waiting lists for various services for Lilli.

You may think we are crazy. You may be thinking, What? New house? New job? New teacher? New baby? Homeschooling? (What?!) You're going to move again? New state? You just moved! You just bought that house! You just fixed it up! (and it's not even finished!) You’re having a baby! How are you going to homeschool? What about packing? What’s going to happen with Lilli if she doesn’t have an ABA therapist or a homebound teacher?

And actually, I know more than some are just thinking these things. Because many of these questions have already been asked to me in disbelief by others who know what has been going on.

Well, we do not know about any of the answers. Realistically, I should just sit down and cry about all of it.

But we did not just get here on our own. God has led us to this point. We know this is what we are supposed to do for now. I do not know all the answers. But we have hope.

We trust God. He is the one who is leading us. That's why I can choose to have crazy hope.

And I have crazy big hopes that whatever happens in the next year, wherever we end up, it will be better than...more than anything I can even ask for or imagine.

Immeasurably more.