Gift Giving, Toys and Autism, and Putting Elmo to Rest.

It's January and I am so glad. Not just because it is a new year, but because December is over. It was a tough month.

We were all sick on Christmas. I will leave it at that.

There were great things about the December of 2013. Lilli got to go to school and be in a class for Polar Express Day. She went in pajamas with her homebound teacher, Leslie, by her side. She went caroling with her new class that she visits twice a week - other mentally high-functioning fourth graders who have autism. She seemed upset at first. I wondered if it was because she is non-verbal and cannot sing. I took a few pictures and went over and whispered in her ear, "You don't have to sing, Lilli! Just smile! You're just spreading happiness at Christmastime." Then I left to go to Josh's classroom, and whispered a quick prayer that she would just be happy. Leslie told me she DID have a great time and was happy after I left, hugging with classmates and laughing. Lilli has some new friends at this school that really adore her. I was so thankful. (I just didn't get a picture of the happy moments.)

Caroling in the main office. Lilli  is in the back, leaning against her homebound teacher, Ms. Leslie. Not happy yet. But happiness came later. Maybe it was because her embarrassing mom was there taking pictures of her, who knows.

Gift Giving Challenges

As Christmas crept closer, I felt myself begin to slide down into my annual mental pit of feeling upset and frustrated about Christmas shopping for Lilli. This is the part of Christmas tradition that sends me into mixture of excitement and dread.

I love, love to give thoughtful gifts. I think it might be my "love language." I keep a "gift idea" notebook and write down ideas for people all year long. If time allows, I love to make gifts for people. If money were no obstacle, I would haapily act like Santa Claus, all year long.

For the last five years since we made this life change, moved and Jasen went back to school, I started the habit of Christmas shopping at yard sales for my kids during the summer. For obvious reasons- living on student loans with three children- we needed to keep the gift budget extremely small, and I discovered that there are lots of strangers who sell perfectly awesome toys, cast off from their (very possibly spoiled rotten) children, in their garage sales for practically nothing. Maybe these people have money to throw away. Maybe they are very bad at budgeting. Maybe they forgot that they spent $20 each on those four Disney princess dolls in perfect condition, and plopped them on a card table masking-taped together with a $1 price sticker just to get rid of them. Or maybe they just wanted to bless someone who could not afford to buy them new. Thank you, perfect stranger who gave away like-new Disney dolls for $1, Chloe loved them.

My kids had great Christmases and birthdays while Jasen was in chiropractic school, partly because of this planning, partly because of the awesome year-round yard sales here in the south, and mostly because this weird thing happens with me. I just think of something we need or I would like to give to someone, and I find it a week later at a yard sale for a quarter. I sometimes specifically pray to find one thing, and there it is in someone's garage, like-new for a buck. God knows what I need. He knows what I want. He is a crazy awesome Giver. People say "God will provide" a lot, but not everyone knows what that really means. I'm telling you, this one way God provides for us. Ask anyone who knows us well, and look around our house. It's pretty amazing.

Five presents each. One from Santa, one from Jesus, three from Mom and Dad. That's how we do it here. If Santa can give presents, Jesus can too, goodness.

Those lean school years taught me how to get creative and find ways to give great gifts on a shoestring budget. I learned much about money and spending. I learned you do not have to spend gobs of money in a panic in late December on expensive new plastic toys to make a child extremely happy on Christmas morning. You do not have to wait until the weather turns cold and then rack up hundreds on your credit card for a few moments of screaming on December 25th, only to faint when you get the bill in January. It's a weird thing we Americans do every year. It does not make much sense.

Josh and Chloe are easy. This fall I went to a neighborhood yard sale and found Chloe an awesome disco ball light and Josh a huge box of Teenage Mutant Ninja Turtles and superhero action figures for a few bucks. All were things they wanted and asked for. Thanks, God. (We put "from Jesus" on the gift tags. Cause they were.) Gift ideas, and the process of finding them is a thrill - when it's for Chloe or Josh.

We've got almost every super hero now. Even Aquaman and Wolverine are in there somewhere new in packaging. Five bucks for the box, thank you, kind yard sale mom who just wanted to get rid of her teenage son's junk. Chloe wanted Uno Moo a few months ago. $1. 

Lilli, however, is not so easy.

Searching for a gift for Lilli dredges up a mixture of unwanted emotions from deep within me. Inside, Lilli is almost ten. Outside, Lilli is much, much younger. The ages collide for her in many situations. One of them is toys. When I begin to plan Christmas for Lilli each year, I feel a small sense of hopefulness and the challenge of finding a fabulous gift - mixed with sadness and frustration. I have no idea what to get her.

The longer I dwell on finding a good toy to give to Lilli, my oldest child, the worse the feeling gets. I hate it.

I know it must sound so completely shallow. It's just that Christmas shopping reminds me of what Lilli cannot do. Playing with toys is something that has not come easy to Lilli. For Lilli, even learning how to play has been very hard work.

Learning to play is part of her therapy.

For those who are confused by this statement, I will share an experience I had when Lilli was much younger.

Autism and the Hard Work of Playing

When Lilli was four, she received the autism diagnosis. The doctor strongly recommended that she receive at least 30 hours of ABA (Applied Behavior Analysis) therapy a week. Yes, 30 hours a week. We talked to the school district where we were at that time, and they were all, "Huh? What's ABA? We don't do that here, no." (It costs a district money, you see. On a side-note, when we moved here we discovered that not every district is so stingy.)

So I went to a special school for children with autism and paid $500 to take a three-day seminar on ABA therapy. I was the only parent there. I sat with a roomful of special education teachers (from other districts who knew what ABA was) and therapists. I was like that annoying, nerdy non-traditional student who asks a million questions, takes notes and pays close attention to every power point slide. Everyone else seemed to count down the minutes to the snack break and tried not to fall asleep, because they were only there to get credit points toward their certifications.

I was riveted by every video clip example and page of notes. I was hooked. The idea of ABA gave me hope for Lilli.

Several times, we were invited into the special autism school to observe students receiving ABA therapy. They placed me outside a room of a four year old boy, bless them. They did that on purpose. He was an exact male version of my Lilli. He could not talk, and he did not know how to play with toys. He was not potty trained. He cried a lot. He did not know what to do with himself. He was so unhappy. I was amazed to see that my child was not the only one in the world like this. In fact, lots of children with autism are like this. I won't say most, because I really don't know. But maybe.

A therapist and little boy were in this room that was about the size of a large walk-in closet. There was no door. I sat on a child-size plastic chair in the hallway outside the doorway. I balanced my pen and notebook on my lap, and observed. I took it all in, and thought of Lilli the entire time. It was nothing I had ever seen or known about. The therapist, a laid-back 20-something guy wearing jeans and an untucked button-down shirt, was lovingly and patiently trying to teach this boy to play. He took a moment and explained to me that every time the boy even just made an effort to touch a part of a toy, he got a tiny treat. I think it was a tiny piece of a cracker or something.

There was a toy vacuum on the floor. My three year old Josh had one like it last year and he ran it all over the house and pushed all the buttons. This boy just looked at it blankly for a second and then stared at the wall. I watched with immense interest as the therapist showed the boy over and over...and over...how to touch one button on the vacuum to make music play. Then he would encourage the boy to do it.

This was hard work for the little guy. So hard. He obviously did not know how to touch the toy's button to make it do something. No matter how many dozens of times the therapist took his little hand and showed him, the boy would not do it on his own.

It wasn't the cool, fun, vacuum's fault. The therapist explained that this was a new toy this week. He was teaching the little guy how to play with it, and I was fascinated with the whole process.

He tried with other toys too. There were cars, action figures, boxes of awesome toys any typical four year old boy would love to touch, play with, imagine with, zoom around the room while making little boy car sounds. There were a few toys that the little boy did pay attention to. Those were the ones he had already "learned" to play with. He took a small truck and ran it back and forth on the table for about three seconds. That, I was told, was progress. They had worked for a long time to get him to do that. Many hours of teaching, and bags of snacks.

If anyone reading this is thinking, "Why such torture? Who cares if he doesn't want to play with those toys, let the poor kid do what he wants to do." I struggle to covey to you: that's just it. He did not want to DO anything. He sat and stared at the wall and cried. A child's whole job - whole life - is to play.

This little boy did not know how to play. And neither did my Lilli. It had to be taught.

This is autism.

Lilli and Elmo: True Love

For a long time, Lilli did not know how to make toys work. I think it might be called a processing problem. She could not make that connection in her brain that she had to push a button to get a toy to do something. It took a very long time to teach her. Weeks. Months. When she was one year old, she played. She reached out and touched and smiled at toys. She had words - real words, like ma-ma, da-da, dog, we remember she even said "poop." I remember even getting her to say the word "donkey." She began to regress around 15 months. She stopped playing with toys. It was like she forgot how. She sat in a corner touching sunspots on the carpet for hours and looking with fascination at her own fingers, while piles of fun toys sat nearby. She cried a lot. She watched movies.

That's an autism thing too - the sunspots and fingers. She would run a piece of ribbon through her hands repetively for an hour.

We were desperate to get her back. To have her play with toys, talk, be happy. 

The first time I remember her really "getting" how to make a toy work and playing by herself was when she was about four years old - shortly after we began ABA therapy with her.

My sister got her "Dress Me Elmo." If you squeeze his hand, he sings this little Elmo song about how "Get-ting dressed, there's nothing to it, now that we've - learned - how to DO it!" And I could sing the next part to you by heart, about zipping and buttoning...Anyway, Lilli was ga-ga over that little singing Elmo. But she could not get him to sing by herself. I would press his hand for her, and she would crawl off so super happy for about ten seconds. Then he would stop. And she would cry, and bring him back to me.

Fifty times in a row. All day long. The mood swing was ridiculous. Singing: HAPPY! Silence: SUPER MAD! Happy! Super mad! Every thirty seconds. She did not understand that she had to squeeze Elmo's hand, no matter how many times I showed her. This could be due to brain damage, or autism, or both, I don't know. It was very frustrating. Playing with Elmo was an extreme love-hate experience.

We hired ABA therapists who showed me how to take her hand in mine and make her hand press a toy's button, and not do it for her. Sometimes she was rewarded by a treat. Sometimes the music or action from the toy itself was enough of a reward to motivate her to learn. I will never forget that it took days and days of listening to Elmo sing that song and Lilli sob and bring it to me over and over. For hours straight.

I think this was teaching her muscle memory by taking her hand and making her hand do it.

And she finally learned.

She learned to press his hand all by herself.

What a glorious moment that was after days of Elmo torture, when she realized she could do it herself. To this day, five years later whenever I hear that Elmo sing about tying his shoes, I remember that he was the first toy she ever learned to play with by herself after her autism diagnosis. Well, she doesn't do the "dress me" part. She can't zip up his coat or velcro his little shoe. We never worked to teach her that part.

After Dress Me Elmo, I went bonkers trying to find toys that Lilli could play with on her own. Pizza Elmo was another big hit. We would do hand-over-hand and teach her what to press, and after a few days or weeks, she would be able to do it herself. It was a whole new world! We had the most annoying toys ever! The worst one was this big, super loud whirring thing with big buttons that had parts that spun around while music played under all that loud racket. But I was just so happy that she could finally entertain herself. As long as there was a big button somewhere that she could press, she could play with it.

Loudest, most annoying toddler toy ever, with nice big buttons and fun spinning action. Even the therapists hated it. I think we had a party when we got rid of it.

If we took a few days or weeks to teach her over and over where the button was, she could eventually get it. And then I would have a few blessed minutes of "peace" to do laundry or something else while Lilli played with a toy by herself - at the age of five.

As the years went on, we went through dozens of toys with simple buttons. And then we realized that she had more going on in her mind than we ever realized. I started to get excited about technology, thinking that she could use a Kindle to read books, or play new ipad apps.

Soon I realized that even those things would take a very long time for her to learn. It's just how her brain works.

Christmas Toy Shopping for Lilli

On Christmas morning, I want my children to open one fun gift that they love - just one special one that they shriek about and play with all day. One that I spent time thinking about and finding. One that I know they will be excited about when they go to school after break and everyone asks them what they got for Christmas.

I love to find the perfect gift for someone. And each year I have a tough time figuring out what NOT to get for Josh and Chloe. I narrow it down to a few gifts each.

But then there's Lilli.

I will see a toy I would love for Lilli to have. And then I think about it and I usually realize: it's too babyish. Or it's too complicated - she won't be able to play with it because it requires fine motor skills that she does not have. She won't be able to use it by herself, because she won't understand what to do with it. We will have to show her over and over how to play with it, and it will frustrate her.

Maybe it was wrong of me, but as I planned my gift lists, I just did not want to buy her another Elmo. I wanted her to move on. I want to find something that is pretty "cool" for an almost ten year old to play with, that she is able to do on her own. Had she moved on? I was not sure.

Maybe I'm the one that needs the therapy, not Lilli.

What does a ten year old do to entertain himself or herself? Besides watch movies or use a device?

I really was stumped.

I posted a question to the parents of children with cerebral palsy group online. I asked them what their older children did to entertain themselves, other than using an electronic device or watching a movie. All the parents agreed that this is such a tough issue that they all struggle with. They detailed how they are always either entertaining their children, or their child is using a touchscreen device. Because fine motor and gross motor skills make most activities very difficult for most kids who have CP. And self entertainment is difficult for many children with autism. Unless someone is sitting down helping Lilli, she cannot entertain herself unless she has the ipad or a movie, or a simple toy with one button. And kids do evetually outgrow Elmo. Well, maybe.

Was she finally over Elmo?

Not Down with "Elmo Up Up Up"

Right before Christmas, I was still looking for something for Lilli. I went into a thrift shop, and there was an Elmo on the shelf. He even had batteries. He sang a song about how Elmo loves to be picked "Up up up." I held him and stood there for a long time, listening to him and thinking. I felt a little excited that I'd just found a cheap Elmo just in time for Christmas. But then I felt a little sad, and I hesitated. I wasn't going to give Lilli another Elmo this year. It reminds me that her progress is so painstakingly slow. I didn't want her to keep playing with Elmos. I wanted her to move on, but move on to what...I did not know.

After a long few moments of listening to him sing, I gave in and bought him.

I hoped that maybe she would play with him and be excited about him, since I could not think of any other toy to get her.

She was not excited about him at all.

She got some cool clothes. She got new movies from Nannie and Pop pop. We pulled everything out of her stocking for her, and she didn't know what to do with any of it.

She got a "question-a-day" diary. My thought was that we can put the choices in her communication device and she can choose the answers. Maybe if she starts typing better this year, she can type things and I can print them out and put them in the diary. It's a long term, dreamy-hopeful goal.

She opened the Elmo, and didn't care.

Jasen said, "She's over Elmo. She's not into him anymore."

She played with her ipad and watched youtube movies on Christmas morning. Meanwhile, Chloe and Josh each played with their new favorite toys.

Lilli didn't play with her Elmo. And you know what? It's a good thing. She's moved on. Where we go from here, I do not know. But she will be ten at the end of this month. Her birthday gifts will be the next challenge for me. But the fact that she can make choices, and she doesn't care about new Elmo toys anymore....that is a good thing. It's progress.

Almost one per year. Except for the years when she got two. If there ever is a game show where contestants win by singing all the words to Elmo songs, I would win.  

Progress is so slow, it is hard for me to see it sometimes. I need reminders that we are on the right track, that I am doing the right things, that I should never give up.

I don't know where we go from here, but we are headed somewhere new.

Farewell, trusty Elmo toys. We have so many of you. Your songs and voice are unfortunately burned in my brain forevermore. But you are headed for Ebay.

It's almost like a gift...to me.

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 spicy...like 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 seen...no 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 wood...you 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 him...to 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.