Sunday, July 12, 2015

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.

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, "'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.

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