The New Neurologist in the Mountains

It takes 43 minutes to drive to the new neurologist's office. I drive in silence.

No movie, no radio. Just the voice of the GPS lady giving me occasional directions. I watch Lilli in the back seat as I drive. She looks out the window. Every now and then, she puts her fingers on her chin and smiles. A few times she claps and flaps her arms. She is happy about something, that's for certain. What she is happy about, I may never know. Maybe she is happy to be alone with no siblings annoying her. Maybe she is excited to go for a drive with just me. Although I am not very exciting at the moment.

Maybe she is thinking and hoping about this new doctor. I had already told her that she needed to be kind and smile at the new doctor. That we had heard good things about him. That maybe he could really help us. I have learned that if Lilli smiles and is affectionate and happy when we meet someone new, things are much more likely to go well with that person. I want people to like Lilli. I want them to love her and see her like I see her. I figure, if they see her as I see her, they will want to help her.

This is my reasoning for telling Lilli to make sure to smile and give people hugs. No one can resist her smiles and hugs. Maybe that is desperate or wrong of me. I am desperate. Sometimes you get more help when people like you. But Lilli likes who she likes. She can tell things about people. She sizes them up and gives her love out to only certain few. I do not know her reasoning as to why some people deserve her affection and tight squeezing hugs more than others do. I tell her to be nice to the new doctor today, but I cannot really control what she will do.  I have seen her hug and kiss doctors. I have seen her thrash around and scream at doctors, trying to get away.

When we arrive, I carefully pack up her two bags of important things to get through this visit, and my purse with the secret weapon inside. Not really a secret weapon. More like an emergency tool.

The iphone.

I don't let her see it. I zip it in an inside compartment. She has not seen it in a week. I am determined to keep it hidden unless all hell breaks loose. I need her to be her happy self...aware. Engaged. Not lost in her repetitive Youtube world of watching Elmo clips over and over. If she has the iphone, she will be less likely to look at the new doctor and smile and make him fall in love with her. On the other hand, if she does not have the iphone, she might be screaming.

It's a chance I decide to take.

We walk slowly up the sidewalk. In the reflection of the glass door, I see her foot turning in. I wince because I know it is going to be bad when we finally go to the orthopedic doctor in a few weeks. She will probably need braces again. Maybe even surgery. Don't think about that today. That's later. Think about the neurologist. That's today.

When we enter the building, Lilli immediately begins to get anxious. Like a racehorse, she gets antsy and I can tell she is getting ready to bolt. I hold her hand tightly and force myself to smile at the woman at the front desk. She smiles warmly and directs me down a hallway. As we come to the end, I am dismayed to see that there is a line for registration.

Lilli cannot stand in a line.

She anxiously tries to get away from me while making sounds of increasing distress. I silently pray that they hurry up, hurry hurry. They are used to kids like this here, right? They will not make me feel bad. But no one smiles at me or reassures me as Lilli collapses on the carpet and lets out a loud screechy wail, and then a low gutteral growl and a hiss. The large registration area and waiting room is at a very low level of soft talking in various areas. A constant but pleasant hum of activity with computers, people in line, and parents waiting with children.

Except for Lilli. She is the only person in the room that is howling at the top of her lungs.

Lilli shrieks. I watch the blond woman on the right behind the counter and I detect a flinch and a flicker of something. Irritation maybe. Lilli really is loud, and it is a shock if you are not used to it.

Maybe she is just irritated at her computer. I try to think positively but the negative sounds are quickly squashing any possibility of positive thoughts.

Parents in front of me in the line are busy with their own children and we do not make eye contact. I stand still and mute. Paralyzed by dismay and embarrassment, even after all of these years of experiences just like this one. It makes me feel like a failure. I still do not handle this well at all.

Potty. She might have to go potty, it occurs to me. She is pulling on my bag, trying to get into it. Maybe she is trying to tell me something. I do not have a communication device with me. We are between devices right now. It's complicated. I have to guess, but I am a pretty good guesser.

I step around a person at the counter and interrupt. "Excuse me, we have a 9:30 appointment but I need to take her to the restroom, I'm sorry. I'll be back." The blonde, possibly irritated woman is polite and tells me it's ok. "I'll tell them," she reassures me. She points to the restroom.

I take Lilli across the large echo-y waiting room with high ceilings to the restroom as her cries bounce all around us. And she goes potty. I am ecstatic. A small victory to celebrate. I make a big deal and she smiles and puts her hand on her neck, as if to say, I told you. I was trying to tell you. She is quiet and happy while I wash her hands for her, get a paper towel and dry them off.

When we go back to the registration desk, we see a pleasant gray haired woman. She is courteous. But Lilli loses it again. Again she screams and tries to run away several times. I pull out my insurance card and sign papers while wrestling with Lilli's arm. She growls and hisses at me. The gray haired woman acts like nothing is out of the ordinary. She is busy with my insurance information.

I look right at her and say in a matter of fact way, "She has autism."

I don't do that very often. I just felt like I had to. We were in this huge room with high ceilings, and Lilli's every angry noise seemed to echo off of the walls around us.

"Oh, it's okay," she says.

Several more torturous minutes of pulling and crying go by. I don't sit in the chair to sign papers. I stand and hold tight to Lilli while I sign with the other hand, because she is pulling and trying to run away from me. She has already spied a glass door that leads outside and has run to it several times to leave the building. She might not be able to talk, but she is telling me loud and clear that every inch of her does not want to be here. I glance at a paper sign tacked to the side of the cubicle that has the internet wi-fi password, and for a second I almost cave and give her the iphone. Instead, I remain strong and try to memorize the password in case I need to use it later. If I give her the iphone now, there's no taking it from her without a huge scene.

Finally we are finished with the paperwork, and the woman points to the couches in the waiting area. As soon as we make it over to a red velvety couch, I pull out our mini DVD player and turn it on. The DVD player is way less addictive than the iphone. I cannot explain the difference very well but it's just different. Lilli quiets for a moment while she watches the menu screen pull up, and just then a door opens with a nurse saying, 'Lillianna?" It was so quick. Lilli hadn't even had a chance to calm down and watch the movie.

Crying starts again as we get up and I put the DVD player back in the bag.

Off we go, with Lilli pulling my arm and crying through the doorway. The nurse takes us to a scale and asks me if Lilli can handle stepping onto it.

"No. 60 pounds," I say, and I keep walking. Then I think, maybe it's 65.

"We really need her accurate weight," she insists nicely. I put Lilli on the scale and she lets out a loud angry scream. Down another hall to the examining room. The sweet, pretty nurse tries to soothe Lilli. 'It's okay baby, no one's gonna hurt you, you're okay, sweet baby..." she coos at her repeatedly.

I was wrong, I think to myself. She's 63 pounds.

I ignore the nurse's cooing and scan the exam room carefully. Perfect, there is an outlet next to a small table. I put the dvd player on it, plug it in, and pull out three legos for Lilli. Lilli is all of the sudden content. She watches the movie and places her legos on the table in different positions. The nurse asks me a few questions. Then she asks why we are there.

"We just moved here. She is a new patient," I say. The nurse welcomes me and smiles. I can't find a smile at the moment. I'm on edge.

She leaves and I rummage around in my purse for a few things. I don't smoke, and I only rarely drink soda. I don't take meds. But I need something, anything to distract me and help with the anxiety. I don't even have a piece of gum.

I know what I need.  I need a Kit Kat.

I don't have a Kit Kat. So I take a drink of my bottled water.

The doctor comes in softly. He shakes my hand. He says a kind hello to Lilli and pats her on the back. She glances sideways at him quickly. She is absolutely sizing him up. He is a soft, gentle talker and immediately begins to ask questions. I answer dozens of questions as best as I can. I am sitting in a chair in the corner, across from the doctor who is standing at a sort of makeshift podium, taking notes on everything I say. I smooth my black skirt over my knees (I dressed up to try and appear educated and concerned) and try to focus and answer every question very carefully.

Lilli is listening to every word I say. Occasionally she puts her hand on her neck as if to interject. She seems to be especially quiet and attentive when I tell her birth story. She has heard it many times. I hate for her to hear it as I tell about all of the scary things that happened at her birth. I do not try to soften it. I tell the facts. The number of times she stopped breathing.  How the pediatrician figured out that she was having seizures in the nursery. She number of days she was in the NICU. The medications she took. The hospitalizations. The many scary seizures and all of the various kinds and symptoms. All of it I tell with no emotion. Just the facts.

He writes it all down as Elmo sings Elmo's Song in the background.

He asks more questions. What are her triggers. What are signs we notice before she has a seizure. He does not look at me like I am crazy as I tell him hesitantly that she has hiccups before seizures sometimes. He tells me that is certainly a sign of seizure activity. This is the first time I have ever had someone confirm the hunch we have had for years. I tell him as much as I can, in a calm, factual way. I describe what the different seizures look like.

I hate doing this in front of Lilli. She is listening.

I tell him that most of her seizures are when she is sleeping. Either napping or at night. He asks me how we monitor her to make sure she is not having a seizure in the middle of the night. I tell him that she sleeps in our room with us.

And then I have to stop talking for a moment and collect myself. Because this is one of the hardest issues we have faced. And I cannot help but feel beyond desperate for change and hope.

I tell him that we have tried many things, even waiting for several years for hope of a seizure alert dog. He shakes his head and tells me we should not put our complete hope and trust in a dog, that he prefers that we use a monitor. Again I cannot speak for a few seconds. I swallow and tell him that this is very difficult for us, to have her in our room and monitor her 24/7.  But this is what we do, and this is how it is. We watch her.

We talk about medication. We talk about surgery. He calls her seizures "Intractable Epilepsy." Which means that we have tried four medications that have not ever controlled her seizures. I tell him about how we do a special diet. I tell him how chiropractic helps. Her seizures have gotten better. But they have not stopped. I tell him that we have cut out as many triggers as possible.

Still she has seizures. And she is on a medication that is causing her problems.

We talk about getting her off of this medication. We talk for a very long time, and I am amazed at how much time he spends with me and with Lilli. It feels like he has no other patients at all. He does a few magic tricks for her with magnetic blocks on a string. She laughs and reaches up and hugs and kisses him on the forehead. Then he takes out three balls and juggles, and she looks away. He tosses a ball at her, and she does not even flinch. It lands on her lap. He pulls out a wind up snail, and makes funny comments about it. He winds it up and lets it walk down his leg. She looks away, silent and unsmiling. He takes out a flashlight and pretends to blow out the light. She turns and buries her face in my neck.

"She has autism," he tells me gently. He does not know that I already know this. It's ok. I love that he spent time actually getting to know her instead of reading her file. It's refreshing.

We will do tests and meet again and come up with a plan.

We leave, and he gives her the magnetic toy to keep. She reaches up and smiles and hugs him. She wants him to pick her up. I can tell he likes her. She has succeeded in capturing his heart. I have never seen her interact with a specialist like this before.

We go to check out, and she cries. We go to the lab and have blood drawn to check her medicine levels, and I hold her tightly in my lap and hold her arms as she thrashes against me and screams and cries with all her might. The two lab techs are fast and expertly draw blood. She freaks out about the bandage and tries to rip it off. We leave, and I cannot describe how relieved I am to leave that building. I'm sure Lilli is relieved too.

I get in the car and get Lilli settled in her carseat, with a few cheesepuffs and a movie. Then I sit and take a big swig of water and eat the rest of the mini chips ahoy cookies I found in my bag. I sit and stare out of the windshield, worn out, eating cookies.

This was one of our better doctor visits.

As I drive home, I see mountains all around and ahead. I can't believe we live in such a beautiful place. I look up at the rolling green mountains ahead, and a verse pops right into my head. I lift up my eyes to the mountains. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth.

What if God brought us to the mountains to help Lilli? What if I am looking at these hills and mountains and this place is the place where God has brought us to do huge things in Lilli's life? What if this doctor is going to really help Lilli?

My eyes well up with tears. I drive home, teary the whole way.

Later when we are home, Lilli has a seizure. It is a small one. Short.

I think about the doctor, and the small new seed of hope about her medication he has planted that is already taking root deep within me. Maybe moving here will be a turning point for us. Maybe she will finally get off of this medication. Maybe she will even get her speech back. The words she used to say so many years ago echo distantly in my ears.

She really said them, and I really heard them.

I think of how she would say "Go!" over and over as we bounced a beach ball back in forth down the hallway to each other. We used to play ball. She used to look at me and throw the ball purposely to me, and wait for it to come back.

I think of how we would change her diaper and laugh because she would imitate us and say the word "poop" in the most adorable voice ever.

There were more words too.

She didn't have a ton of words, but she had them. And they all disappeared.

Because the words were there once, I keep waiting for them to come back again. I keep hoping that her speech disappeared temporarily.

Temporarily for ten years.

Every time I look at the mountains, I think about the new hope we have here. I wonder what will happen here. I wonder what I will be writing about ten years from now about Lilli, telling all of the things that we experienced. What I hope I will be writing is that Lilli is saying words again. I hope her seizures are controlled, and infrequent. I hope that when she is 21, she has gained more control and independence in her life.

I hope so much that when we are driving in the car together and she smiles and looks out the window, that I can say, "Why are you smiling, Lilli?"

And she can tell me.

Why I Appreciated "Chick-fil-A Cow Appreciation Day"

Our day began with Chloe spinning too much in Lilli's therapy swing, crying, and throwing up from being dizzy. Then some sibling fighting, a messy breakfast, some potty training issues with Josh, and cleaning up all of that. Two baths later, we were back on track. Just another typical day here. Except that today, in this house that's usually filled with therapists working with two of my children, there was one highlight we were all looking forward to:

Cow Appreciation Day at Chick-fil-A.

We had plans to meet friends there for lunch for this fun annual event where everyone dresses up like a cow. I looked at the clock and figured we would need about an hour and a half to get all three kids and myself dressed like cows and out the door to Chick-fil-A.

I was wrong, it took two and a half hours. No helpers for Lilli here today. I explained multiple times to Josh that we were not dressing up like Spiderman to go to Chick-fil-A, we were going as cows, for Cow Day. We went through several Spiderman and cow outfit changes. Chloe cut out black spots and tails, and I dug up white clothes and made ears. Lilli was quiet and tolerated me dressing her in a white outfit and sticking spots on her. Finally, we were driving down the road covered in black construction paper spots with "Eat More Chikin" signs taped on our shirts and floppy black paper ears and tails. I took care to tape a barrette with cow ears on top of Lilli's head because headbands bother her.

When we pulled into the completely full parking lot, I was relieved to see one available handicapped parking spot for Lilli right next to the door. I parked and picked up the phone to call my friend. She is a new friend. She does not know us very well, and I knew I would need help getting these three inside. She answered her cell phone, and she was just telling me that they had saved seats for us when I glanced at Lilli in the rear view mirror.

She was having a seizure.

"Lilli's having a seizure, I gotta go!" I yelled into the phone and dropped it. I climbed back into the back of the van to her. Chloe covered her face with her hands, upset.  "This is terrible!" she said over and over as I tried to stay calm and tell all three kids that everything was going to be OK. Even though I was panicking inside, and I didn't really KNOW that everything was going to be OK. "Here, call Daddy," I said to Chloe. "I don't know how!" she wailed. I hit Jasen's number and handed her the phone. This was a mistake, because Chloe did not have the phone right on her ear. She kept saying, "Lilli's having a seizure, this is terrible" but she could not hear Jasen. I had to take the phone from her and tell him what was happening.

Even Josh was scared, I think because Chloe was saying over and over, "Lilli's having a seizure!" Josh started to say it too, yelling "Mommy, mommy!" Fortunately they were all still strapped in their car seats, so I didn't have to keep my eye on them as I pulled Lilli out and helped her.

She came out of the seizure, and I started to breathe again.

Now what? I wanted to get back in the driver's seat and drive back home. So many times I have been through this. It never gets easier. It is always just as shocking and scary. Just then my cell phone rang. It was my new friend. She had not heard me say that Lilli was having a seizure, because it was so loud and crazy inside Chick-fil-A  They were just sitting inside waiting for us. I explained that Lilli had a seizure, and she said she'd be right out to help. I told her we might not stay. I had to get my bearings because I was so overwhelmed. I gave Lilli a drink of water and she choked on it, coughing and sputtering.

"Wipe her mouth, mommy!" Chloe sat and watched her drooling sister with concern. I looked at Josh, who was still upset, and I said calmly, "Lilli is OK, we are all OK. Ok?" I fixed my headband with floppy black ears, and grabbed my cowbell. A bunch of black paper spots had fallen off of me onto the van floor when I was helping Lilli. I scooped a few up and slapped them back onto my white makeshift cow outfit. Really I did not even want to go in. My friend came out to the van and helped take Chloe and Josh by the hand to go inside.

When we got to the counter to order, I could not even think. Lilli was probably not feeling that great, and she was crying and shrieking with anger. After one ear-piercing scream, I heard a person nearby mutter, "Whoa." I know. It's loud. I'm sorry. I do not know what to do for her when she gets like that, except either leave, or push through it and hope and pray she gets happy again.

I had given her my phone to watch her favorite YouTube videos, and Youtube would not work. The sweet girl at the cash register was patiently trying to take my order between shrieks, and I said, distractedly, "Hi, um, ok, it's me... and three small cows. We'll take...whatever you want to give us." She laughed and nicely tried to help me through our order. If she only knew why I was acting so weird. I did not tell her that Lilli had special needs, but I'll bet she could tell something was up. My friend took Josh and Chloe back to the table, and I tried to balance the full tray and hold Lilli's hand. Lilli reached around in anger, shrieked, and grabbed the side of the tray, almost spilling it. I kept taking deep breaths. This was hard.

We got to the table, and Lilli was still upset. Finally I gave up on having them eat anything, and took all three of them into the play area. As soon as we did that, Lilli was happy. She loves being around other kids. She did not even climb up into the tunnel, she stood at the bottom and flapped her arms happily with a smile. I saw another mom I knew and we chatted a little. I kept trying to ignore the feeling of wanting to bolt out of there. The kids were having fun, while our food got cold on the table. I never even took one bite.

I realized suddenly with the instinct that only the mom of a potty training toddler has, that Josh needed to go to the potty, NOW. Or there would be trouble in the Chick-fil-A tunnel. I took Josh and Lilli by the hands and told Chloe to stay with my friend, we'd be right back. As I tried to steer the kids through the crowded restaurant, another friend I didn't even know was there popped up from a table and offered to take Lilli for me. What perfect timing.

When Josh and I got into the bathroom, my emotions threatened to overtake my mask of calmness. I felt the tears coming up, and had a thought that might have ruined it all: Lord, why did you give me these dear needy children? I'm not very good at this. And then this thought: Stop it. Get back out there.

So another deep breath, and back out we went. The kids played for a little while longer. I thanked my two friends for helping me, and saw the other mom I'd chatted with earlier. I told them all, "This is hard. I almost didn't come in because Lilli had a seizure in the van when we pulled in." The one mom hugged me, and said, "You're amazing. Bless you, you're a good mom. I can't believe you came in." My friend said, "You did it! You got through it, you came inside with your kids after Lilli had a seizure. Good job, you can go home and write down that you did that." (and I did.) My new friend that we'd sat with packed up all of our uneaten food in a bag and said, "You did the right thing. The kids had fun." She carried the food and my other friend carried Josh.  They helped us all out the door back into our van.

As I drove away from that experience with the free Chick-fil-A food we would heat up and eat later, I had one thought: I don't want much in life, just a little help from nice people. Cause life can be tiring and hard, but when you have people help you along the way, it's more bearable. Friends and family can make you smile through the craziness and tough times. And I know why Chick-fil-A just gave away all those meals to customers dressed like cows. They are just being nice. It was simple kindness.

When people are nice and help me, it reminds me that a little tiny bit of being nice and helpful goes a long, long way. The people that helped me today made my day. The nice girl at Chick-fil-A that sweetly placed my order and said "My pleasure" with a smile, despite my confusing order while my daughter with special needs had a meltdown, made my day. Kindness is worth way more than any chicken sandwich.

Thank you, kind friends, and thank you, Chick-fil-A. Just for being nice. I appreciated it.

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.

Waking Up in the Middle of the Night

I had a thought the other morning, after being woken up yet again by my two year old at some odd hour in the middle of the night:

How awful it must be, to be a kid that cannot speak, and wake up in the middle of the night with a need.

Joshie came running into our dark bedroom talking about something. Jasen, dear husband that he is, got up and took Josh back to his room. But minutes, later, Josh was back, saying the same thing, whatever it was. In my foggy sleepy state, I forced my brain to translate “Josh-speak” and mumble to Jasen, “He said he wants a drink of water.”

And that was the trick. He was thirsty, and sucked down a half cup of water, and went back to sleep.

A few hours later I stood by the coffee maker and groggily told Jasen, “He said ‘De da wa-were.’ That means he wants a drink of water.”

“Huh? ……Oh.” Jasen responded. Then we both drank huge cups of coffee and went on with our days.

I was thinking about Josh, who is actually receiving speech therapy now, and how he is so hard to understand sometimes. HE knows what he is saying, and he knows exactly what he wants. But he cannot always get us to understand. He has intelligent thoughts and ideas, but trouble communicating them. He just cannot get the words to come out of his mouth right.

Kind of like Lilli.

When Lilli wakes up in the middle of the night, she does different things. Sometimes she makes sounds, like “Mee mee,” or “Ss, ss, ss.” Sometimes she makes breathy noises and growls or laughs. She will grab us or grab her neck. Grabbing her neck, we know now, is her gesture for “I have something to say but I can’t get it out.” But how do we figure out what she wants at three or four in the morning in the dark?

Only recently did I have an “a-ha” moment in the middle of the night about Lilli. She woke up around four a.m. and started to make noises. I don’t know how it is in other people’s houses, but in ours, when someone wakes up, usually that means several others are woken up too. So Jasen and I were having a discussion in the dark about why Lilli was awake.

Ok, I was the one who was having the discussion. Jasen was trying to sleep.

I decided that maybe, just maybe, Lilli had to go to the bathroom. And she can’t tell me.

After eight years, this occurs to me for the first time.

Duh.

During the day, we have the potty button that “speaks” for her, we have her dragging us to the bathroom, we have pictures she can point to, she can type it, we have a certain specific “potty whine” she does that I recognize, we have our little notebook with the schedule and all our handwritten notes of the last time she peed, so that we can say to each other or ourselves, “Hmm, Lilli has not gone potty in awhile, let’s take her.” (Just writing all of that took a little bit out of me. Potty training has been long and difficult. But it is because it is not “typical.” We have a few more obstacles thrown into the mix.)

I think about how potty training with Chloe went, and how there were those times in the middle of the night when she would wake up whimpering and we would have to stumble through our sleepiness to complete the routine in the dark.  I think, well, it’s worth a shot. We’re all awake. Might as well see if that’s the problem.

So at four a.m., I take Lilli to the potty.

I whisper to her that this is different, we don’t have the lights on, I’m not going to play an Elmo movie or sing Twinkle Twinkle Little Star. OK, but I can whisper it, I think. So I whisper Twinkle Twinkle Little Star in the still dark bathroom.

And there it is.  She had to go.

I hug her and tell her I am so proud of her. She squeezes my neck super hard, for a really long time as I crouch down next to her sitting there. I imagine her to be saying, “I’m so glad you finally realized that was why I woke up. I am so glad you finally figured it out.”

Then I take her back to bed and she goes back to sleep.

I confess to you that I got teary. That’s no big surprise to anyone since I am such an emotional person. But this was a big moment for me, because I had a realization.

Special needs aside, sometimes kids just wake up simply because they have to go to the potty.

We tend to make things more complicated than they are. Mysteries can do that. For so many years we tried to figure it out. We thought that Lilli’s night waking was due to something neurological, or seizure activity. And many nights, it was. Lots of kids with special needs do not sleep well. When you see a bleary-eyed parent of a newborn, you understand why they are sleep deprived.  But many, or should I say most? parents of kids with special needs are still bleary-eyed after a decade. For various reasons. Some parents have to get up in the middle of the night to tend to feeding pumps or various beeping monitors, some children are on medications that disrupt their sleep, some children have seizures… there are lots of reasons. Some known, some unknown. When Lilli was a toddler she used to wake up and laugh, loudly. Squeal with delight and clap her hands, for over an hour. Night after night. It went on for months.

That… was torture. It was not at all funny.

We tried a lot of things over the years. Now, Lilli does sleep through the night most nights. Certain things have helped her sleep. One is regular chiropractic adjustments. (One of many motivators for my husband going to school to become a chiropractor. He may have even made the final decision to be one at four a.m. I don’t know.) From supplements... to certain foods…to long baths... to driving around the block six times… to taking her to a chiropractor, the list of things we have tried over the years to get her to go to sleep and stay asleep is long. But I am just happy to have realized that sometimes, when a kid with special needs wakes up in the middle of the night, it might not have to do with their special needs. They just might be like any other kid and have to use the potty or want a drink of water. With a child who cannot talk, this is guesswork in the dark at an exhausting hour.

I hope that one day we will figure out a good way for Lilli to tell us what she needs in the dark.

For now, I am just happy that sometimes… I guess correctly.

Watch Out for that Crazy Mom in Target

It's six a.m. My husband is already gone for the day. All three kids are sleeping in my bed. (The only one who started out there was Lilli). Lilli is hooked up to her pulse oximeter; lit up red and green numbers blinking on the nightstand next to her. Even so, I keep sneaking in to check on her. I am already on my second cup of coffee; been up since 5.

I got up to say goodbye to Jasen, and I could go back to bed if I wanted to. But I know I would not be able to sleep. I'm currently in a vicious cycle of caffeine and anxiety. I have been mentally spiraling down in the last few weeks. I think what started it was the fact that the new nurse did not show up for three days. So I called the nursing agency and said, "Hi, I don't want that nurse anymore, I can't depend on her." We temporarily did not have a nurse. No biggie. But as a result of my calling the caseworker about something else, she saw in our file that it was time for a review. Another nurse came to the house to evaluate Lilli and re-assess her. We are one of those families that kind of "falls between the cracks," I guess. The results of the re-assessment? We do not qualify for nursing help anymore. The reason why? Because we have a new caseworker. The last caseworker took time to hear my story; the details that don't get put on paper in official black and white. She was a mom. She was compassionate. I know some people with more needs than our family might read this and get irritated. I know there are families with much greater medical needs that we have. We are blessed. Lilli is not on a ventilator. She does not have a g-tube. My caseworker just had mercy and granted the nursing care for us because I explained Lilli's uncontrolled seizures, and I needed help. She told me we technically did not fall into the right category for nursing care, but she had the power to grant it to us anyway.

Having a nurse this past year changed my life. It was not a perfect situation by any means. But now that we do not have a nurse anymore, I have to re-think how I do things. The biggest change is my constant mental state of having to be alert and aware of Lilli's needs. I miss that mental break. A good nurse in home health is a rare gem. I learned a ton from our experience. But now, it's back to no nurse. It is one year later, and a lot of things have changed. We have the ipad now. We have an ABA therapist. Josh and Chloe are just now getting to the age where they play with each other. Chloe can take care of herself more. There are a lot of good things that have happened in the past year that I can be positive about. Writing about it helps me to focus on the big picture and see the good with the bad.

I can appeal the decision and plead my case to try and get nursing care back, but honestly I don't know if I have it in me right now to file all sorts of paperwork and drive two hours for a hearing. It seems as though our chances are slim. I have not decided what to do yet. Perhaps I never should have been granted that privilege in the first place, but I am a better mom now because of that caseworker's decision to help me out. I have ten days to decide and respond in writing about an appeal. In the meantime, I have to deal with what is happening right now, and what this change means. It means that I have to take Lilli with me wherever I go, which is no small deal. But it will be OK.

I have to carefully calculate our outings. Any small trip outside the home has the potential to become complicated and stressful with Lilli. We cannot take Lilli some places because of triggers that set off her seizures. We cannot go out at mealtimes or for too long because of Lilli's endurance level. Sometimes Lilli cuts the trip short by wailing loudly. But sometimes, it's just as challenging to take my two year old out in public. I am way too stressed out about things that might or might not happen. I have been wearing myself down into an over-emotional, exhausted pessimist. Each outing by itself is no big deal. But after a whole week of having anxious outings, I was kind of an emotionally threadbare mess. I want to try and see the positives in all of this.

I think my anxiety of going places is real, and has roots that stem back to when Lilli was a toddler. Most outings were incredibly stressful with baby Lilli. I was a new mom, she was my first baby, and she had special needs. Nothing was easy. I was incredibly paranoid because of her seizures, choking, medicine doses, irritability, and other factors. I was also chronically sleep deprived for many years. Now I guess I'm not "chronically" sleep deprived. Just regular sleep deprived. My personal definition difference is based on the number of times I am awakened at night and for how long each time.

Now that Lilli is older, the factors have changed. But going out in public is still very stressful for me. To an outsider, it may seem like no big deal. But to an outsider, each outing is a separate thing. I'll try to act like I'm a different person and look at my situation objectively.

…So Lilli cried the entire time we were in the grocery store, so what? Lots of kids do that. Think of all the moms who have toddlers screaming and losing their minds in the checkout line next to the candy display.
… So Lilli cried most of the time that we were in the dollar store, so what? We were only in there for twenty minutes. Big deal.
…So Lilli sobbed at the library and Morgan had to whisk her out, and I could hear her wailing out in the hallway while I tried to hurry Chloe up to check out her movies…no big deal. (Ok, no, that was disruptive and stressful.)
...So I could not take Lilli and Josh to the playground while Chloe was in dance class because there were so many kids I was worried I could not keep track of both of them, not a big deal, right? Lilli would just walk away into the road and never look back. Josh would run to the edge of the soccer field in to the woods and never look back. No playground for us. (I took them for a short walk instead, and Lilli cried.)
…So I had to drive a half hour through pouring rain and traffic to speech therapy, and when we got there I had to keep Lilli from repeatedly touching a stranger's face and keep Josh occupied while we waited for 15 minutes for the therapist, it wasn't the end of the world. She didn't cry for very long.

The thing is, all of those things happened just last week. That was a typical week. Almost every time we all went somewhere, even when I had Morgan's help, Lilli cried and made our trips stressful and short. At the grocery store, we never made it to the dairy section. Halfway through the frozen section, I said "Ok let's go." She was so upset that it was making me upset, so we left without milk and eggs. Then when we got home I stressed about when I would go back and get the milk and eggs.

Having a nurse meant I got my grocery shopping done without interrupting Lilli's ABA therapy at home, and I could focus on two children while two other people were focusing on Lilli. Lilli was not there, crying and anxious the entire time. I have thought about this, and wondered why I get so anxious when I am out with Lilli. I asked myself if I was embarrassed of her. Really and truly, I am not embarrassed by my daughter. I am not ashamed of who she is. I am proud of her and I adore her. But when Lilli is anxious and upset, I get anxious and upset. An ordinary errand turns into a "hurry up and get this done and let's get out of here." This is really typical when you have a two year old. I went through it with Chloe, and now we are done with it. I'm going through it with Josh right now, and I know it will pass soon. But it has always been like this with Lilli. As she gets older and taller and stronger, it makes me even more anxious.

She has gotten better at outings. As long as I have another adult with me and a bag of cheesepuffs, we can make it for a little while. We try to prepare her mentally for the errand. We avoid certain loud, overwhelming stores. I make a list before we go, and we make a "game plan." We get in and try to get out as fast as possible. Once on a trip to Target, Morgan told me I should be on Youtube. I had all three kids in one of those kid carts with two booster seats. I literally ran while pushing the cart up and down each aisle, whisking things off the shelves. I barely slowed down to grab stuff. It was drive-by shopping. I almost ran a woman over and had to apologize profusely. When I write stuff like this down, I realize I must have lost more marbles than I thought over the years. I prefer to call it "Preventative Parenting." Like I am getting my shopping done quickly before someone has a total meltdown. It makes it sound so much better than "Paranoid, Sleep-Deprived Anxious Shopper Mom Hyped-up on Caffeine and Dangerously Running with a Cart Filled with Three Kids."

So I lost nursing care, no big deal. I still have Morgan, Lilli's ABA therapist. And she's better than ten nurses. Any parent in my situation would do back flips to have any help at all, so how can I complain?

The positives about not having a nurse:
I won't spend as much money.
My kids won't get to see things they want at Target and whine about wanting them (because they will only be seeing a blur as we zip past).
I might be able to call running with a cart filled with three kids and groceries "exercise."
There's no time for me to look at frivolous house décor and waste mental space thinking about the pointless possibility of "window treatments" and useless bowls filled with silly decorative balls.
We will never go to Toys R Us because Lilli hates it – too overstimulating (not going there is a definite positive in so many ways.)
I will be forced to plan meals ahead of time and write specific grocery lists (a money and time-saver in the long run.)
I can't think of a positive about not going to the public library. But my library is so awesome, they actually have a drive-through window. I can reserve books online, drive over there, and a nice lady slides open a window and hands them to me with a smile. (She might be smiling because we are not actually coming inside the building to disrupt the peace, but whatever.)
And the biggest potential positive? I will gain wisdom. I will depend on God and not myself. Because I simply cannot do it all. I will be constantly reminded that everything I have in life is from the sheer grace of God. I will be more thankful for every blessing, for any small help and any moment of peace I am granted. It is true, having less makes you more thankful for what you have. That is true with material things, but it is also true of time, and help from others. When things change in life, a person can either be bitter about it, or gain wisdom. I am no Pollyanna, believe me. But I will not choose to be bitter. I will be thankful for what I have. As for my anxiety level, I know I need breaks. This is a break right now. I am thankful I can write. I can start my day feeling good from getting all of that out. Thanks for letting me share.

 

 

 

While Waiting for a Seizure

As I turned the calendar page to September tonight, I yelled out to Jasen, "No seizures at all in August!" I took out a blue marker and wrote "No seizures" on Lilli's seizure calendar that I keep on the fridge next to our regular calendar. I keep track of them for many reasons. It is important information when we are trying to figure out what could be setting them off or if we need to make changes in medicine, etc.
I am rejoicing because it has been over a year since she has gone this long without having a seizure. She has had some months with only a few, and other months with several each week. I thought about the odd practice we have of "waiting" for the next seizure. It is difficult to explain. Lilli has had them all of her life, and we always have to be prepared. We go by patterns and signs for when we think we should be "ready" for her to have a seizure. Some people can tell when they are going to have one. Lilli might be able to tell but she can't communicate that. We are always going on hunches and clues, like how she is acting, or things that happened that day that might bring on a seizure. Maybe it is a little like predicting the weather without all the fancy meteorology equipment.
One night in May I was "waiting for a seizure" and I felt like writing about it. I took a flashlight and a notebook, and wrote as I lay next to Lilli, who was sleeping, in the dark. This is what I wrote.
*****
May 15, 2011
It is a Sunday night. Lilli has had a seizure every Sunday for the past five Sundays in a row. Jasen is out at the kitchen table doing schoolwork. He got Lilli to sleep, but now I am watching her in case she has a seizure. She sleeps in our bedroom, hooked up to a machine called a pulse oximeter to monitor changes in her pulse and oxygen saturation. Sometimes the alarm goes off if there are changes and she is starting to have a seizure. But sometimes… it doesn't. So although it is helpful, it is not as good as old-fashioned mom and dad. We listen to hear the sound of her smacking her lips. That is how we know a seizure is starting. This sound does wake us up every time. We are well trained, after seven years. We are also light sleepers.
When Lilli has a seizure, we fly into action. The light goes on, one of us runs for the Diastat (emergency medication) and the phone in case we need to call 911. I time the seizure while we get the medicine ready. I have not had to call 911 since December, a 10 minute seizure. There was a time years ago when the seizures would not stop at all. We have been to the emergency room a lot with Lilli over the past seven years.
A lot.
Fortunately they have been stopping after several minutes for the past few months. Lilli has most of her seizures while she is sleeping. It makes our nights, well, not very restful, most of the time.
The chances of her having one tonight are pretty high, for several reasons. Even though it is late and I'm lying here in the dark near her, I cannot sleep. I think of all the things I could be doing right now instead of waiting for something to happen that might not happen. Re-folding all the laundry that Josh threw on the living room floor right before bedtime. Reading one of the many books I have stacked by my bedside that I would love to read but never get to. Is this healthy? I wonder. I already KNOW it's not "normal." But don't get me started on that word. Is this what firefighters or EMS feel like when they are on call? Waiting. Waiting for something bad that might happen, to happen. And making sure to be ready, in case it does.
One time I asked my husband if he thought it was accurate to describe waiting for her seizures like this: it's like sitting at the dinner table eating with your family, and you know that someone is going to choke on their food in the next twenty minutes. You sit there and try to enjoy your food, but really you can't because you are visualizing the Heimlich Maneuver in your mind, and making sure your chair is in a good position so you can get there fast when you leap up to help. You concentrate on watching your loved one chew food and swallow; relieved after each bite goes down. You can't pay full attention to the other family members at the table because you have to be ready for the second when the choking occurs. And you feel like this every time you have a meal.
When I told this scenario to Jasen, he slowly nodded, and said, "Yeah, actually, that is kind of what it feels like."
I look at Josh on the video baby monitor and see that he has no blanket. I go out into the kitchen quickly to ask Jasen something, then sneak into Josh and Chloe's room to cover up Josh. When I tip toe back into our room, I hear a sound and stop dead in my tracks. For a second I think it is Lilli smacking her lips, having a seizure. I stop breathing and listen with alarm. Then I realize: it's only the clock ticking in our bathroom. I just shake my head to myself, and climb back into bed for yet another long night.