Saturday, January 26, 2013

Thoughts Before Making the Cake

Today is Lilli's ninth birthday. Everyone is still asleep except me, and I am blissfully enjoying my coffee in the quiet dawn. In a few minutes, I will begin to decorate Lilli's birthday cake.

Last year I wrote a tear jerking post about Lilli's birth and what a miracle she is. This year I have not felt like I have had any wise thoughts lately, or anything worthy of posting. Frankly I have been a little overwhelmed with the little stuff of life for the past few weeks. So no tissues needed with this one.

I wanted to write down that this year is yet another event with new perspective. This year I spent more time planning Lilli's birthday than I ever have before. That is because I now know that she really has an opinion about the little things. Lilli can tell me a few things now with her ipad, but it is still tough to get a lot of information and opinions at once. We started to plan a couple of months ago by asking her yes or no questions and giving her choices. Things with Lilli almost always take a long time.

So based on Lilli's preferences and requests, we are having a simple, Muppet-themed, family birthday party today. This is on a small scale/budget, mind you. I am definitely not that Pinterest mom that posted all about her kid's fabulous Muppet party with over-the-top (awesome, I must admit) Muppety decorations, favors, and food. No, I made our cheap Muppet decorations with cut-up Muppets Valentines Day cards and some scrap book paper. Chloe and Josh and I colored Muppet coloring sheets, and Lilli painted Kermit with Morgan's help. I will decorate a cake with some Muppet on the top after I post this...I'm thinking Beaker? She loves him. Lilli's cousins and aunts and uncles will drive down for the day and celebrate her birthday with us. It will be fun.

Little thoughts that enter my mind about today are...

What if Lilli gets overwhelmed and distances herself from everyone and just wants to sit in her room by herself and watch movies?
What if we try to get Lilli to open gifts and she pushes them away and runs out of the room?
What if Lilli doesn't outwardly act like she likes any of her gifts that her relatives get her, even if she does like them? 
What if she cries and pushes the ipad away when we try to get her to say thank you?
What if she pushes people away when they try to hug her and say happy birthday to her?
What if after we open her gifts for her, she won't pay attention to any of them and she goes back to playing with her old favorite toys?

...Because based on how things usually go, all of these things will probably happen at some point today. Lilli gets overwhelmed easily. It takes her awhile to begin to play with new toys because she has to learn how to play with them. We have to teach her how to play with something. She loves her cousins, but she will probably want her space today and leave the room. Even though it is her own birthday party. I know this because I know Lilli. But I have to brush these thoughts away and focus on the reason we are celebrating. It is her day.

I want anyone reading this to know that you should never take these kinds of things personally from a child that has autism. Her outward actions may be disappointing to others. But I know that at the end of the day, Lilli will be happy about her gifts. I know this because the gifts we got her are really cool. I know that she will be happy about the Muppet cake and decorations. I know this because...I just know. I know that however Lilli acts today, deep down she is just like any other kid. She just has all this surface stuff on the top that gets in the way. I've said it before, her autism gets in the way. I go to draw Muppets with icing. Lilli might glance at the cake I spend an hour decorating for her, for literally one second. She might even look at it sideways, because Lilli does not always make direct eye contact with people or things. A few years ago, I would have been hurt by the fact that she will not stand and study her birthday cake and decorations for long moments with a smile on her face. Now, I feel that if she even glances for a second and then walks away, I'll take it, and smile to myself. Because I know she will still appreciate it inside. And really, it is all for her. So that is the most important thing about today.

Chloe drew this awesome picture of Animal on our window.
Ahhh! Animal!!!

Tuesday, January 1, 2013

Counting Blessings Outside the Walls of Bethlehem

Chloe talking to a woman in the "Bethlehem marketplace." Such a neat experience for her. 

It is Christmas Eve morning.

I sit here and pause, my fingers hovering over the keyboard. Where do I begin? How do I process what happened last night and how I feel about it? My eyes look over to the fridge, covered in artwork by my six year old, and a sweet cardboard wreath that Lilli made with her therapist Morgan. I think about tomorrow and how great it will be to be together as a family, celebrating Christmas. And I realize... I do know how to begin.

We are blessed.

This is how I will begin, reminding myself how very blessed we are in so many ways, as I tell the difficult story of last night.

Last night my mother in law and I took the three kids to a live nativity. It was not just any live nativity. It was a realistic set of the town of Bethlehem you can walk through with actors and costumes and animals...even a camel. Not bad for a free to the public event at a local church. We drove half an hour to get there, so excited to have the kids experience what we usually read about in books and try to explain with pictures. I could not wait for Chloe to engage in a conversation with a "Roman Guard" or meet "Mary and Joseph" with a real baby "Jesus." We had never done something like this before. I could have left Lilli at home with Jasen and my father in law, who were cooking dinner. But I wanted her to be a part of the experience too. I just knew she would love it.

When we arrived, I asked the parking attendant if there was a handicapped spot left up front. He said yes and waved us through, to my relief. We parked next to the plywood walls of Bethlehem where people were lining up to go inside.

I saw the tiki torches as soon as we pulled up, and thought, oh no. They were lined along the top of the temporary wall that surrounded the outdoor event. Not that they had tiki torches in ancient Bethlehem, but they were there to give light and create a more realistic "no-electricity-back-then" kinda feel. But for us, fire and smoke strike fear of possible seizures. Lilli's seizures are triggered by a list of things, and we avoid smoke of any kind...even birthday candles. (When we celebrate birthdays, candles are blown out on our back deck, while Lilli plays inside.) I hesitated and thought to myself, well, they are up high. Maybe it will be OK. Really I was being selfish. We had driven all that way, and I wanted to take my kids to see the live nativity. Lilli had not had a seizure in a month. I hoped since we were outside and the torches were up high, that the smoke would just go up and be carried away. That was just plain stupid of me.

We got Josh and Lilli into strollers. I don't like to have Lilli use a stroller unless there is a lot of walking or waiting involved. We looked at the quickly growing line and decided it would be easier for her to sit in a stroller rather than wait in line and then walk through a crowded Bethlehem.

The first actor we encountered was a shepherd. He came over to us and asked us if we were waiting in line for the census. I said to Chloe, "Why are we here? Do you know?" Chloe thought about it and answered, "To see baby Jesus!"

"Don't tell the Roman guards that," warned the shepherd.

This is going to be so cool, I thought. And educational. 

Lilli had been quiet since we left the house. She did not make a sound during the drive, and she sat still in silence in her stroller. That was a little unusual for her because she usually makes sounds of either happiness or displeasure. She also usually tries to get out of her stroller if she is in it for a long period of time. We figured she was just tired. She had a nap before we left and had a hard time waking up. I was trying not to be concerned.

The next actors were the three kings, who came over to us while we inched forward in the long line. They told us they were looking for the baby, and they showed us their gold (spray painted bars on a platter surrounded with fake gems from a craft store), frankensense (a glittery box filled with what looked like salt, but he let Chloe and me smell it...I guess it was frankensensce), and myrrh (a decorative glass canister filled with a brown liquid which also smelled myrrh I guess). I was wary of the smelly stuff because it bothers Lilli, but I hoped as long as she didn't stick her nose in the containers and smell it, maybe it was OK.

One of the kings looked at Lilli's stroller and muttered to the other kings, "That is one of the strangest chariots I have ever animal to draw it." At that comment, Lilli waved both of her arms and laughed. We loved how they stayed in character. I bent down next to the stroller and said, "You are going to love this, Lilli!"

The line moved up the sidewalk over to the wall where the tiki torches were burning. "Do you smell something?" I asked my mother in law. I thought maybe it smelled like incense, and I was getting worried. It looked like there was a lot of smoke coming over the top of the wall. I had not thought about fire and smells before we came, and it seemed like more than tiki torches. Within seconds of my saying that, we both looked at Lilli and I knew. She was going to have a seizure.

I took off running through the parking lot pushing her in the jogging stroller to the minivan. Trying not to panic, I left the stroller sitting there and got us in the back as fast as possible, slamming the door shut. The next few awful moments were filled with emotion, prayers, and waiting as I looked in her face and said her name over and over. I know exactly what to do during a seizure. But even after eight years of this, I still always have the crazy hope that I can stop the seizure by distracting her. It is really quite ridiculous to think that, but if you were in my shoes, you probably would do ridiculous things too.

The details clicked through my mind. We were a half hour from home. I did not know how to get to the nearest hospital. I had the Diastat with me (emergency medication to stop seizures) but no oxygen. I could yell out to one of the actors dressed in Bethlehem-costume sheets nearby if I needed help. There was no way I was driving anywhere right now with her like this, so I texted my mother in law to go on into the "city" with the other two, and I would call her if I needed her. I was torn between panicking all alone, and wanting my other two children to be sheltered and blissfully unaware of our plight while they enjoyed the experience of "Bethlehem." I was also flooded with guilt and remorse.

I called Jasen and tearfully asked him to pray.

At this point, some readers might be thinking, "what's the big deal if she has a seizure?" Someone actually asked me that once, not being rude. She just did not understand why it was so bad. I think some people might assume it is an inconvenience, but once it's over, life goes on. But it's not like that. Lilli's seizures do not always stop. Years ago we had to go to the ER time after time because they would go on and on. She has seized for over an hour. She has had trouble breathing. Her heart rate skyrockets. To us, a seizure is life threatening. She could stop breathing. She could die. It is always serious when Lilli has a seizure. This is why we live our lives in paranoia, picking activities and environments carefully, avoiding things that can trigger them. It is a constant struggle, to find a balance between living in fear of a possible seizure, and trying to enjoy life and activities outside our little "bubble." Honestly, I hate that part. It feels like a loss of freedom.

When I knew that it was over, and Lilli was going to be OK, I just sat there and cried. I looked out the window at the line of happy people, unaware of our little crisis a few feet away behind tinted windows in the dark, cold van. Tears rolled down my cheeks as I hugged Lilli and looked up at the flickering tiki torches. I thought of the wise men and their gifts, and the smoke on the other side of the wall. Guilt rolled over me like a tsunami, and sorrow for Lilli not being able to experience Bethlehem. I texted my mother in law that we were fine, that she should stay and let Chloe and Josh have fun and take lots of pictures for me. We waited in the van and Lilli watched Veggie Tales on a mini DVD player.

I pulled out her ipad and put the "yes no" page up. I said, "Lilli, are you OK now?" She pushed "Yes. Yes. No No. Yes."

I thought about it and said, "Yes because you are not having any more seizures, but no because you didn't get to go into Bethlehem." Just a guess. She leaned into me, squeezed me and nuzzled my cheek with her nose. I took that as yes, I guessed correctly.

I pulled her into my arms and said, "I don't know why that happened. It's not your fault. It's my fault. I didn't know there was going to be smoke here, I should not have brought you. I'm so sorry Lilli. I don't understand why you have seizures, but I know that God loves us. He loves you and he is here with us. He knows what we are going through, and he really loves you." Lilli leaned over and purposely touched "Yes" on the ipad one time. Then she squeezed me.

We sat there for a few minutes in silence, and then she took my hand and pulled it toward the ipad. She typed, "U sad."

"Yes, I am sad Lilli," I sighed. "Because I really wanted you to experience that. And I feel so bad that you have seizures. I'm really, really sorry." Then I thought to myself, be a strong momma. What would a strong momma say in a time like this to an eight year old?

I took a deep breath. "Lilli, let's imagine what you would have seen if we had gone inside," I began. "You would have seen the Roman guards at the gate, and they would have asked you if you knew about rumors of a baby being born as the Messiah...then you would have walked into the marketplace and seen people making things...maybe pottery, maybe things crafted from would have seen real animals like sheep and goats and donkeys, and even a real camel." Lilli hugged me and sat there, listening. "At the end, you would have seen Mary and Joseph, and a real little baby wrapped up in their arms."

I tried to think of other things we might have experienced if we had been able to go in, and held Lilli on my lap as I attempted to create a picture for her of what was happening behind those walls.

I watched the exit for where my mother in law and the two kids would come out. After awhile, they did, with smiles, bubbling over about what they had just seen. My two and a half year old Josh came running over to the van with excitement. "Mom! MOM! Com-ere! Com-ere!" He waved his little arm, beckoning to me and grabbed my hand. My mother in law encouraged me to just take a peek inside the exit and see, while she stayed with Lilli and Chloe. Josh darted under the piece of burlap hanging in the exit doorway and I chased the quiet place where Mary and Joseph sat on bales of hay. We stopped in our tracks, because we had just stepped into another world. It felt serene. It was hushed and still. The noise from the rest of the "town" seemed muted and far away. We stood in the dimly lit stable area, as a real donkey stood quietly nearby. It was dirty. It was dark, and cold.  It felt real. It felt...holy. Mary was holding a sweet, happy quiet baby, snuggled in a blanket. A little chiminea burned nearby to keep them warm. We were the only ones there. An angel stood quietly up on a platform behind bales of hay, and she smiled down at Josh. Josh beamed. He pointed at the baby and whispered "Look! Look!"

"Who is that?" I said softy. "Is that baby Jesus?"

"Jesus." Josh whispered.

I pointed at the angel and whispered "Angel." Josh repeated it in a hushed voice. We stood there for a few seconds and I hugged him tight to me, filled with a mixture of emotions from the past hour. I wanted to stay longer. But I thought of Lilli.  "Say bye bye to baby Jesus, it's time to go," I whispered.

"Bye Jesus," Josh waved.

We stepped back out from under the burlap into our lives. The night went on with usual craziness. We drove home and realized our coats and hair smelled like smoke from the chiminea. This was not good for Lilli. When we came in, we stripped our coats off in the garage and smelled the kids' hair. Jasen took the three kids and put them right into the tub while my mother in law and I went off to take quick showers and wash away the smoky smell. Later before bedtime, Lilli got sick all over the carpet. We cleaned and scrubbed while Jasen put Lilli back into the bathtub for a second bath. We fell into bed physically and emotionally spent, watching Lilli for more seizures throughout the night while she slept in our bed.

This morning, I pondered the events and teared up as I spoke to Jasen about my guilt. Jasen reminded me that we do not live normal lives. We cannot do everything we want to do. We have to split up the family and do things separately. Next year if we go to "Bethlehem," one of us will have to stay home with Lilli.

Even so, we are blessed. We have a Christmas tree. We have gifts. We have a warm, smoke-free home with running water and plenty of food. We have family. We are so incredibly blessed, and we take so much for granted every day. We will have a good Christmas, celebrating the birth of our savior and thanking Him for giving us hope and life. I will fight the temptation to feel sorry for myself and focus instead on the many blessings we will enjoy over the next few days. And I will remind myself over and over:

We are blessed.