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.

So...off 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!!!

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.

This Year's Early Christmas Present from Lilli

Last year, my early Christmas present was Lilli typing on the ipad by pulling my hand toward each of the letters on the keyboard. This year, my Christmas present is Lilli communicating through the ipad completely on her own. This is quickly becoming old news, because I have not posted enough on my blog lately. Each day that goes by before I finish this post, she does something new and I think about how I need to tell everyone (and record the progress for myself).

It is still in the beginning stages, but it is really, truly happening. Since October, we have moved into the next phase of Lilli's story: the phase where she begins to communicate independently - without us touching her arm or supporting her hand. The order went from using our homemade velcro alphabet letter cards to "Yes No" cards to "word cards" and "phrase cards" to now the newest version of her communication app. Looking back we can see how each step naturally led to the next one. And here we are.

In the very beginning, we held her hand. Now, I do not recommend that method for everyone, even though it was life changing for us. If I ever write a book one day about our journey, I will explain in detail why I do not think it is a good idea. We found out the hard way. There are great insights and dangerous pitfalls in using that method. In hindsight, we did need that boost, to know that she can read and understands so much more than she lets on. But then we had to take major steps back, to "start over" so to speak. I know it all happened for a reason. And the ipad in the sink, even though that was a bummer, was an important part of the process because it made us try new things. I think in Lilli's case, typing while supporting her hand helped us know what is going on in her mind much earlier than if we would have waited for her to type completely on her own. That day of independent typing has not come yet. But I know it is coming.

I could write another entire post on how we need to expect more from children with special needs, and give them the benefit of the doubt. Lilli is very smart. But if she did not ever have someone believe in her and teach her how to use an ipad to communicate, she would probably still be sitting in a class somewhere putting blocks in a cup over and over, and listening to Brown Bear Brown Bear. Seriously. Instead she is doing third grade level work, learning about math, science, geography, history,  and reading books that third graders enjoy.

So this app, "Proloquo2Go," and the ipad have been life-changing for us. Lilli is using the app without us touching her arm, to tell us things. She is not typing words, because that is very tedious for her and the keyboard is too small. Instead she is navigating through the communication app to put words and phrases together, all by herself. She is tentative and inconsistent. But let me tell you, it is thrilling. Because it is Lilli. Our real Lilli, talking to us on her own without being touched.

The "velcro words and phrases" phase happened in October. I laugh thinking about it because we only did it for a few weeks. All that printing, cutting, laminating, and velcro. However, it did lay the final part of the foundation in transitioning her to this current phase. This is how it happened. One morning during school time,  Lilli was upset. Her teacher Leslie tried to figure out what was wrong. Lilli would not type what was bothering her, and she fussed all throughout her school session.

A few days later, we came up with the idea to put short velcro phrases on a poster board instead of in a book. This was so that she could go over to it and quickly find a short phrase on the board she might want to tell us, such as "I feel sick" or "I'm thirsty." I also included phrases like "I like this," and "I don't understand." We propped the board up in her school room, and waited to see if she would use it on her own. All we did was point to it and explain verbally to her that she could use it if she wanted to tell us something, instead of typing it out one letter at time.

It worked.

Later that week during school, Lilli was fussy and whining. She got up on her own, walked over to the board, tore off the phrase "I'm frustrated," walked over to Leslie and thrust out her arm dramatically to hand it to her.

Leslie said, "You're frustrated, Lilli? Can you type to me why?" Lilli typed with Leslie's help, "Want to play in playroom but no because school."

Leslie said, "Lilli, I'm proud of you for telling me why you are frustrated. I am going to let you have a little free time right now because you did such a great job telling me what you are thinking. Then we will go back to school work."

Lilli chose the velcro phrase "I'm frustrated" and pulled it off this board.

Leslie said that Lilli happily played with some toys for a few minutes of "free time," and then willingly worked for the rest of the session with a completely new, happy attitude.

What a wonderful thing it is, to be able to express your feelings in "words."

Lilli used the velcro words for other situations. We took them shopping in a small container and Morgan spread them out on the ground at Michael's. (Not a positive experience. Shopping usually is tough.) We took them on other outings and we used them around the house. I used them to ask Lilli what she wanted to eat for every meal. Morgan used them to ask her about activity choices. The whole "word card choice" thing was going great. And then...we got the communication app Proloquo2Go re-installed on the ipad. That was November 1. (We had gotten the new ipad replacement from the school in October but we did not get the communication app right away).

I believe that as soon as we began the transition from velcro word cards to word "buttons" on the ipad, it clicked for Lilli. Proloquo might be a program that clicks more easily for some people, but Lilli had trouble with it when we used it last year. We also made a lot of changes to simplify it so that Lilli could navigate it herself. She is slowly picking it up and learning how it all works.

One day, I was talking in the kitchen to my mother in law about a piece of fleece scrap I had leftover from a blanket I made last year. She suggested I use it to make a scarf for one of the kids. As I held it up and talked about making two scarves out of it, Lilli came running into the kitchen. (Years ago I might have thought it was coincidence, or that she wanted a snack or something. Now, I know that Lilli has excellent hearing and she comes into the room when we are talking about something she wants to be a part of. It's true.) See, I have three children, and I was saying I could make two scarves for the kids. I totally get why she came running into the room! Just because kids cannot talk, that does not mean they cannot hear!

I showed it to Lilli and asked her what she thought of the blue fabric with dogs. Morgan put the ipad down on the kitchen table in front of her. Lilli hovered her finger over the ipad and touched:

The "I have something to say" button - opens a new page with choices of phrases.

The Negative folder opens to give choices of negative words and phrases.  The screens "scroll down" to show many choices below.

Lilli pushed "I don't like it"

Then she pushed "no" for added emphasis, I guess.

We were stunned. And proud. As you can see, you have to push several buttons to get to the desired phrase. This was not an accident. Witnessed by Morgan, my mother in law, and myself, Lilli had told me completely by herself that she did not like the fabric for a scarf for her.

The other night, she was tired and whiny. I put the ipad in front of her and simply said, "What do you want to tell me?" She pushed three buttons in a row to say:

"I want ...to go....to bed."

So I put her to bed, thinking how incredible it is to have another window into my little girl's mind.

Each day brings a new surprise.
Last week: "I want to wear a green shirt."
Yesterday: "Hi. How are you?"
This morning after I told her something good: "I am happy."
At lunchtime: "I am hungry for lunch. I would like a turkey sandwich."

This is only the beginning of yet another exciting part of Lilli's story. With the help of Leslie, Morgan, and Lisa (her teacher and therapists) the app is being continually programmed and improved each day, as we add things to it that Lilli might like to talk about. We are loving this app. I think Lilli loves it most of all.

After all, it is her voice.

Hope and Forgetting to Have It

If you know my six year old Chloe, you know she loves the Wizard of Oz. Her fascination with it all began by my taking her to an elementary school play. I took her to that play last spring. I’ve mentioned before in my blog that I often write posts and then do not post them. Sometimes I don’t like them. Sometimes I decide it is too personal and I keep it for myself. Sometimes I just don’t feel like it is ready. This is one of those posts. It is just how my heart works, I’m not sure why. I wrote this and tucked it away months ago. But this morning I woke up and decided out of the blue, today is the day for that post. It seems random. Maybe it is because there is someone out there who needs to read it this week. Only God knows. I just wanted to explain that it happened almost a year ago. But it was significant enough to remain on my heart and mind all this time. I hope it touches someone else today.

* * * * *

Hope.

I think about it all the time. Hope is what keeps us going. And I am always looking for ways to keep it. Because it can be forgotten, and it can be lost.

Since Lilli started to communicate to us through her ipad, I have felt more positive about having a child with special needs than I have ever felt. The thrill of communicating with Lilli has pushed the other significant difficulties into the background a bit. I am not clueless about what Lilli wants, thinks, and feels anymore, which was most of the frustration before. It is still in the beginning stages, but the thought of her communication getting better, well, that gives me hope for the future. I have to look for things to hope for, and remind myself that God can do anything.  It is part of the reason why I write things down. When I am feeling overwhelmed and depressed about Lilli’s needs, I can go back and read what I wrote on Lilli’s eighth birthday and remind myself that she was born for a purpose, and created to be this way for a reason. Even with knowing all of this, I am only human.  And sometimes, I forget to have hope. Even after getting all teary and pouring my heart out about how Lilli was created by God to be exactly who she is.

I forgot on one particular night, for just a few minutes.

I took Chloe to see a play. Chloe loves theater, singing, dressing up, and all kinds of drama. She creates much of the drama in our house each day, sometimes with costumes and sometimes without. So when I heard about the free performance of the Wizard of Oz put on by a local elementary school, I was excited to take her to see other kids perform a play. I know Chloe will be on stage someday. She uses her plastic microphone and costumes almost every day at home. Since my mother in law was visiting, I was able to take Chloe and not worry about childcare for the other two while my husband was at school. Chloe skipped across the parking lot next to me, delighted about seeing the play. I, once again feeling a mixture of guilt and thrill for being out with one child while the other two stayed home, made my mind up to truly enjoy this short date with my five year old future actress.

We said hello to a teacher’s aide that I knew as we entered the lobby. I held Chloe’s hand tightly as we wound our way through the crowd into the seating area. The auditorium was packed with rows of extended families with cameras ready, and toddlers trying to climb over the backs of seats. Chloe and I picked our way to two seats way in the back, crawling over a few people to get to them. I read the photocopied program while Chloe bounced on the flip-up seat. Finally the lights dimmed. When the curtains pulled back and an eight year old Dorothy began to say her lines and sing, I was blindsided with an unexpected flood of emotion. I got teary and a lump formed in my throat. I was a little shocked at my reaction, but I should have known better. Moments later when an adorable group of elementary-aged munchkins danced around and sang, I put my fingers up to quickly wipe tears from my eyes.

Chloe noticed. She peered at me in the darkness.  She whispered loudly as five year olds do, “Mommy, why did you just do THIS?” and she put both of her first fingers up to her eyes and copied me.

“It’s nothing, sweetie, watch the show,” I whispered back.

I prayed and tried to get a grip. I have these moments every once in awhile. You see, this was Lilli’s elementary school putting on this play. It snuck up on me. Even when we walked in the door and saw that teacher’s aide, I thought I was fine.

That teacher’s aide was Lilli’s teacher’s aide in her class last year.

I thought about how Lilli went to that school for two years, and would still be in that building everyday if she were not medically homebound because of her uncontrolled seizures. I thought a ridiculous, heartbreaking thought that she was the same age as those other kids, and that I wished she could be up there on that stage dancing and singing with them. I went down that mental road that a mom of a special needs child should never go…the “What if” road. As in, “What if Lilli did not have special needs? Would she be friends with those kids right now? Would she be in the play? Would she have been picked to be Dorothy? Or a Munchkin?” I was torturing myself and discreetly wiping away all of my mascara.

Singing and acting talent runs in our family. I thought about how Lilli recently put her hand on her neck and typed on her ipad that she wished she could sing. I wish I had handled things differently that day. We were listening to a kids CD in the morning called “Seeds of Courage.” I love the first song, where there is a solo part that is sung by a young girl. Every time I hear it, I think about how I love her sweet, clear voice. Lilli was standing near me during that song that morning, and put her hand on her neck like she wanted to say something. I pulled out the ipad and asked her to tell me what she was thinking. She typed that she wanted me to turn it off, because hearing that girl made her want to sing. And she can’t. I turned it off and sat down with Lilli. I told her that everyone has different gifts.

I said those exact words to her, and I meant a lot by it. But I obviously just thought the deeper meaning to myself, and did not bother to explain it out loud to her. Hours later, she typed to her therapist Morgan about “opening presents.” Morgan was confused and did not tell me until later. By the time her teacher Leslie came for Lilli’s two hour block of afternoon school time, Lilli was really upset. I asked Leslie if she could figure out what was going on, and she told me Lilli kept typing that “everyone has gifts,” and she wanted to “open them now.”

Oh.

I had to explain to Lilli that there were no presents, and that when I said “everyone has different gifts,” I meant talents. Poor girl went all day thinking that she was going to get a present, because I had told her “everyone has different gifts.” (We must be careful to be literal when speaking to our children.)

But even though it is a hard concept for children to understand, it is true. Lilli does have gifts. She has gifts and talents that I do not have. To see her on the outside, strangers might think she has less than other, “typical” children. But to know her, she is incredibly blessed, and we are only beginning to learn what Lilli is able to do. And bonus for us, she is a blessing to others. There are people in Lilli’s life who adore her, who love spending time with her, and who want to know what makes Lilli tick. She can touch other people’s lives in a way that most cannot. That is a gift.

So back to the dark auditorium, where I am wiping my eyes.  I guess everyone does this in some way or another. We can all mourn the thought of how “things might have been” or “should be.” I think it might be normal for any parent of a child with special needs to have these thoughts from time to time. We can’t help it. We see another child the same age as ours and start to think about the what ifs. You can do that with any situation in your life. Especially the situations in which we had absolutely no control. What if things had been different?

 But that’s just it. This is the way it is.  And it is for a reason. For a greater purpose than we can fathom. There is a verse in Psalm 139 that says, “All the days ordained for me were written in your book before one of them came to be.” This is the verse I go to when I feel like life is spinning out of control. I believe it with all of my heart, but I need to read it constantly to be reminded. To be reminded that God is in control. He has it all planned down to the finest detail. He has my future already planned, and he has Lilli’s future planned. I take great comfort in that, knowing that He has plans for my little Lilli.

All of our children are going to have different gifts and talents. They may not all be up on stage. They might not all be running on a sports field. They may not all be exceptional artists or musicians. But each one will have their own purpose in life, blessed by God and created to do different things. Why do we waste time lamenting about how we wish things could be?

As for hope.

I do not think it is human nature to always have hope in life. We need to be constantly reminded of our hope, and what we put our hope in.  I do not know what the future holds for Lilli, or for any of our children.  But I remind myself of the hope I have in Jesus, and in His word. Because I put my belief, trust, and hope in Him, I have faith that He knows our future. And He has great plans for Lilli. And His plans were for Lilli to be born this way, here, now. To us. That I would be her mother. And she has a purpose for being here. She may be different than all of those kids dancing and singing up on that stage. But she has other gifts.

We just can’t see all of them yet.

Lilli kissing Chloe (who is wearing her Dorothy from the Wizard of Oz costume).