Thursday, July 16, 2015

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.


  1. This made me cry! Thank you for reminding us where our hope comes from! I am looking forward to watching the miracles that God has waiting for you guys!

  2. Thanks Colleen, I look forward to writing about future miracles. :)