Corrections

I've been overwhelmed by the support and concern for my family. Thank you.

The amount of kind words and praise for my mothering makes me feel like I'm not getting the true picture of my life across in this blog. As I'm typing, Seth is crying in the dark garage for the 2nd or 3rd time tonight (probably won't be his last) because he has gotten out of his bed AGAIN. I've spanked him today, too. And yelled. And put myself in time out. I want to make sure a balanced view of my life is being portrayed here.

I'm still learning a lot. I was most surprised today to hear from multiple people who are unaware of the social stigmas surrounding epilepsy. I'm so grateful for that! I hope I'm in a minority of [previously] ignorant people. I am grateful for a few people who have shared their epilepsy stories, most of which were new to me. Another important thing I learned today is that, "Epilepsy stereotypes exist because people with reasonably well-controlled epilepsy often don't talk about their seizure disorder or reveal it to their friends and co-workers out of fear of repercussions or epilepsy stigma. 'It's the people who have the most severe, poorly controlled epilepsy who define these epilepsy stereotypes because they more obviously represent the condition.'"1 The more people share their stories, the fewer exaggerated and incorrect stereotypes.

Today I had to reflect on why I have this stigma in my mind. I believe it came from one particular person I knew who had epilepsy. This person struggled academically and socially, and I assumed it was because of the epilepsy. With me being young at the time and that being my first experience with epilepsy, it stuck--even though everyone I've met with epilepsy since then has not struggled in those same ways. As I met more people with epilepsy I merely adjusted my thinking from "People with epilepsy are affected mentally" to "People with epilepsy CAN be affected mentally," and that's what I honestly believed until yesterday. I researched Googled "epilepsy social stigma" and found a super helpful article that quickly debunked my misconceptions.

I'm copying from this article1: https://www.everydayhealth.com/epilepsy/overcoming-the-stigma-of-epilepsy.aspx

"The most prominent epilepsy stereotype is that epilepsy is a mental illness... In actuality, individuals with epilepsy do not have a mental illness derived from their seizure disorder. However, people with epilepsy are at higher risk for depression, anxiety, and illnesses pertaining to low self-esteem."

Other epilepsy stereotypes include the following:

Epilepsy stigma: Epilepsy is associated with neurological disabilities, such as developmental delay.

Epilepsy truth: "The majority of people who have seizure disorders do not have neurological disabilities," Dr. Haltiner says.

Epilepsy stigma: People with epilepsy are violent.

Epilepsy truth: "During a seizure, a person may appear frightened, confused, angry, or combative, but violent behaviors are not associated with epilepsy," Patternak says.

Epilepsy stigma: People with epilepsy cannot hold a job.

Epilepsy truth: "Although some individuals may have restrictions - such as driving, lifting heavy objects, or climbing ladders - many people with epilepsy are able to successfully work," Patternak says.

I'm still trying to figure Evan out, but now I've learned that if he has social or developmental delays, it's not because of epilepsy. Thanks for helping me learn that. It's a lot less scary now that I know the truth.

Mental Health

"Evan's EEG showed some abnormal movement. It appears like it could be epileptic. We're going to do two things. 1) Start Evan on a low dose of medication, and 2) Do a sedated MRI to get more detailed imaging of his brain, particularly in the place where the movement was."

Now I'm having a hard time with this post. Being a few days removed from the news I'm less emotional about it now, and I don't quite know how to be "PC" about mental health, but I feel it's important to open this discussion, so here goes...

I have seen many instances where parents receive a diagnosis for their child's mental/learning disability and become very distraught or depressed. I've never quite understood the reason for being upset. To me, I felt like parents should not really be surprised to be told their child has a disability--like, say, autism. They have seen their child's abnormal behavior, probably know something is different, and a diagnosis would probably be a relief. Now they can move forward with therapy and whatever other services they need.

I wasn't told that Evan has epilepsy, exactly, but we are essentially treating him now as if he does. And hearing that news was a lot harder on me than I thought it would be. Shouldn't I have been relieved to have a possible answer for his problem?

I wasn't expecting anything to come out of the EEG. I was expecting that Evan's tongue-twitching episodes were going to be unexplainable, and I was going to be okay with that because it would be easier than hearing that something is physically wrong with your child's brain. I absolutely know that people can live happy, successful lives with epilepsy. I know several of these people. But my honest first thought was fear. Would he be able to get married? Can he live independently? Will he have many true friends? What will people think of him? I was scared. I was sad for him. And now I can understand why parents have a hard time receiving a diagnosis. Although I could already sense that Evan is different, saying 'epilepsy' makes it definite. The odd behaviors that I hoped were just him being a 5-year old may be lifelong challenges. That's a heavy burden.

There are two things I'm processing right now: How Evan actually behaves, and the epilepsy (or I'd even say the spina bifida) STIGMA. People with epilepsy aren't "slow," "dumb." Not everyone with spina bifida is "socially awkward," has "learning disabilities," "walks funny." I have felt, though, that these LABELS are very prevalent. Some labels are based on truth. Some are based on experience with one particular person rather than the majority. It's hard to be given a label and not start to fall victim to stigma thoughts. On the other hand, I don't think you can just erase or ignore a label like a mental disability. I've had well-meaning people say things about Evan like, "But he's so smart!" "He has so much personality." Yes, that's very true. I hope these people are getting a more accurate view of epilepsy and spina bifida than the stigma allows. You can be smart and have personality even if you have a mental disability. I think that's the moral of this post.

What do I want you to do? I want you to treat Evan normally. But, if he responds in an abnormal way, please be understanding that he has a few diagnoses that affect his interactions with the world. And please love him anyway. 

A Spina Bifida Moment

In spina bifida circles I often hear something like, "I'm having an 'I hate spina bifida' day." Which means two things. 1) Some days it's really hard to deal with spina bifida, and 2) Some days it's not. 

There were two instances in January where I witnessed Evan having an episode where his lower lip felt tingly and his tongue had spasms, making it hard for him to talk. It lasts about a minute or two and then goes away. He's completely coherent when it happens. He told me about 3-4 other times when it happened that I didn't see. The second time I saw it, I filmed it and then quickly contacted neurosurgery at UCSF. They shared our experience and video with neurology and their epilepsy team and scheduled us for a neurology consult. 

Neurology Appointment

San Francisco, January 12, 2018

Our typical encounters with neurology at spina bifida clinic go something like:

     "He looks good. Do you have any questions?" 

      Me: "Nope."

We are aware that Evan has heterotopia and hydrocephalus and Chiari II--all sorts of brain abnormalities. But they haven't been symptomatic enough to meet directly with neurology before. The neurologist asked lots of questions, did some observations, and watched our video. She concluded it didn't look like seizures--too localized. Didn't look like Bells Palsy--not enough facial droop. He's the right age to develop a tic--but his tongue spasms seem involuntary and a tic wouldn't normally include tingling. Maybe an allergic reaction? Basically...she didn't know. It's hard to tell. She scheduled us for an EEG.

The boys love playing on this hill outside the hospital

View of the Warrior's new arena being built across the street from UCSF

Foggy view of the bay from the Lawrence Science Center at Berkeley

EEG & Orthopedics Consult
San Francisco, January 25, 2018

The blessed-cursed day

Curse: Steering goes out and battery light turns on in the car while I'm on the freeway.
Blessing: The car does not break down on the Bay Bridge.
Curse: The car does break down before we make it to the hospital.
Blessing: We just added roadside assistance to our insurance plan. Phew! Tow guy picks us up super fast and is willing to drop us off at the hospital. We make it to our appointments in time.
Small Curse: I didn't get to stop at Dynamo Donuts and get the passion fruit chocolate donut I've been dreaming about since the last time we came. *sniff sniff
Blessing: Appointments go smoothly.
Curse: UCSF has the worst cell service in the world. My phone battery nearly dies.
Blessing: Isaiah stayed home from work and can keep in touch with the car repair shop while I'm at the hospital. I brought a fully-charged iPad and am able to write down directions to the car repair shop. It's only 1.7 miles away so we can walk. We didn't have Seth. Evan is strong. It's not raining like the forecast said. All good things. We can make it!
Curse: Evan has to go potty 1/2 mile into our walk.
Blessing: Community park and bathroom appear out of nowhere on the next block. Remember, this is San Francisco. Parks are rare.
Curse: Isaiah calls on our way to the shop. The car won't be fixed until tomorrow. Oh, and it's going to cost $800.
Blessing: Car repair shop guy gets us a great deal on a rental car to take home. Enterprise comes to pick us up. (I can't stop saying their motto to myself while we're driving.)
Giant Blessing: As we pull into Enterprise, car repair shop guy calls and says they will be able to fix our car today after all!! Super sweet Enterprise driver lady takes us back to the shop. We get our car fixed for slightly less than expected, and best of all we don't have to drive back tomorrow.

What a day!

Evan was thrilled to ride in a tow truck. I was less than amused.

Child services had paint in the waiting room for the EEG

At this point I'm having flashbacks to Evan's shunt surgery 3 years ago when he didn't wake up and they did an EEG to see if he was alive.

We got to cross Hwy 101 on this AWESOME bridge on our way to the car shop. I want to go back. It has the coolest view of downtown and you're on top of all the cars. It's crazy!

I should mention a few things. First, we didn't expect the EEG to show much of anything. His tongue episodes are so infrequent and they go away, and he has no other symptoms of shunt failure or anything. Nothing indicates this is a severe problem, and chances of anything showing up on an EEG are small. But we're trying to cover our bases by having this imaging done.

Also, since we were making the trip to UCSF anyway, I also scheduled a consult with Orthopedics to discuss the osteotomy surgery. They did leg x-rays and basically told us that Evan is a great candidate for surgery and we can call to set up a date when we're ready. It's been an overwhelming day and I need to talk to Isaiah first.

So...the next day Ortho calls me and says, "Pick a day for surgery and we'll pencil you in." I pick March 2. Eek! What have I gotten myself into? I hope we're making the right choice. This is gonna be terrible! I'm excited. I'm scared. We got this!

Then we get the call from neurology a few days later... This is where the whole "I hate spina bifida day" thing comes in. Not that we're surprised by this kind of news anymore, but Evan's EEG showed abnormal brain activity. I have a lot of thoughts on this.

To be continued...