Plastic Smiles

My friend Brooke recently published a book and I had the chance to review it for her.  I’ll admit that I’m not usually a fan of fiction but I actually enjoyed it.  The book is called the Wizard of god and it follows a girl named Grace on a journey through a spiritual landscape that is both fantastical and eerily familiar.  Like the classic story, our heroine amasses a band of misfits and heads for a far off place to find a person with all the answers.  Along the journey that encounter stereotypes of the church as it exists today, with all extremes being represented. 

As someone who has been wounded by churches and Christians in the past, there were several chapters that really resonated with me but there is one particular scene that I’ve thought about several times over the past several days. When Grace finally reaches her destination, she and her companions are given plastic training smiles which they instructed to wear until their facial muscles adjust to smiling all the time.  The group finds themselves through this giant, fancy compound filled with beautiful people and their fake smiles with all of their pain hidden behind masks.

I thought about that scene as I walked into the elementary school for Muffins with Moms last week with a plastic smile on my face and a bitemark from one of my children on my hand.  I greeted other parents in the hallway like I hadn’t spent the last hour trying stop a meltdown.   I sat at that cafeteria table and tried to overcome the horrible morning to connect with my kids before they ran off to class and thought about how exhausting it was but I kept my smile on anyway.

I continued to think about that scene off and on throughout the week because we’ve had some really hard days at our house lately.  It is always complicated for my kids when they see their biological family but we thought they could handle an extended visit with one of their siblings because of some extenuating circumstances.  Instead we spent about two weeks in absolute crisis mode as attachment issues reared their ugly heads.  I kept my smile on though, at least in public. 

I thought about that scene after church last Sunday too. The girl child screamed for most of the morning and the entire drive to church.  My nerves were frayed and I was tired.  When I walked the boys to class, another mama asked me a question about an issue that we have faced with one of our kids.  Her child is working to overcome similar challenges and she wanted advice.  I took a deep breath and considered putting my smile back on to tell her how it’s done but I left chose to leave it in my pocket instead.  I told her I was empty and that as much as I wanted to help her, we would have to talk strategies another day.  To my surprise, instead of a glaring, judgmental sanctimommy, I found another mother who struggles some days too.

I realized in that moment that the best thing about taking off your mask is that others lay theirs down too.  I have to tell you that felt amazing.   I needed that moment in the church hallway of connecting with another mother who can see me struggle without thinking I’m Medusa.

In light of my newest revelations, I thought about that scene and some of the moments when I took the smile off to let my face and soul relax.  I started a new job that I am really excited about.  The night before, I sent my person a message that basically said “this might be imposter syndrome but I’m pretty sure I’m going to be completely incompetent and fall on my face tomorrow.” Since she’s an amazing human, my friend encouraged me and I felt empowered when I arrived at the office the next morning.  Taking my mask off that night allowed me to connect with someone so I didn’t need to fake it; I could smile for real.

I don’t think it’s realistic to pretend like I could go through life and never fake another smile.  There are situations where we simply have to grin and bear it.  I see benefits to laying our masks down whenever it is safe to though.  I think when we take our fake smiles off, it lets our real ones come out.  They may not be as flashy and gaudy.  They may even be weak but they are authentic.  They may coexist with tears but they exist in the flesh instead of plastic when we are allowed to share our truth with the people around us.  

Leave the diagnosis at home this Valentine’s Day

If you are the parent of a child with special needs, you are likely very well aware of the divorce statistics for our cohort.  Our marriages are significantly more likely to end than our peers with healthy children.  It just seems cruel that the disorders that try to steal our children attack our marriages too.  The truth is though we can experience stress levels similar to those of soldiers in combat and that puts strain on even the healthiest relationships. Our marriages aren’t doomed though.  We just need to understand what we are facing and protect our relationships while we weather the storm. 

I think that most couples initially go one of two ways when faced with a crisis like a child’s diagnosis: denial or obsession.  Many people feel so overwhelmed by what they are facing that they avoid it at all costs.  Those couples may fight about trivial things or become overly involved in other activities because facing the threat to their child is just too terrifying.  Others, like my husband and I, become laser focused on the medical situation.  It seems easier to juggle the advice of multiple specialists, a whole new drug regimen and a child with a very uncertain future when you block everything else out.  For a little while that works but in the long run, it just isn’t sustainable.

When my daughter first started having seizures it was all consuming. Everything we did revolved around epilepsy. Every conversation was related to her health.  Every nightmare consisted of her seizing until her little body couldn’t seize any more. Nothing mattered but keeping her alive.  We were in survival mode. I remember a conversation I had with Curt one of the times that we were in the hospital.  I told him how impressed I was that we had been able to fall together instead of apart.  I didn’t mean that we were a super couple who never faltered. We just felt so little support at the time that we were forced to lean on each other while we went through hell always thinking that the storm would pass and we would go back home to our normal lives.

When the dust finally started to settle and we came home to this life that was far from normal, we faced a whole new challenge; our family had to learn to talk to each other again.  It wasn’t that we weren’t speaking at all.  It just felt awkward to talk about anything that wasn’t related to epilepsy.  Suddenly, telling my husband about the woman who was a jerk at school seemed really trivial.  Bragging about our son’s report card at the dinner table felt wrong when his sister might never learn to read.  We used to sit up and talk for hours but every interaction had somehow shifted into a medical conference.  Even though he was always right there with me, I missed the connection to the man that I needed the most.

After weeks and weeks of nights that were spent at the hospital or lying beside our seizing princess, we were finally able to sneak away by ourselves for a few hours.  As we pulled out of my parents’ driveway after dropping of the kids, we made a decision that I think is a large part of why we are still together three years later.  We decided not to take epilepsy on our date.

When we decided not to talk about Alyssa’s health that evening, it freed us up to talk about everything else we had been neglecting.  We went to a steak house and talked like we used to.  All of the day to day conversations that had been deemed too trivial to mention were up for discussion.  The longer we spoke the more the murky medical haze seemed to life and we reconnected in a way that my soul desperately needed.  I don’t remember what he was said that night, but I vividly remember looking across the table and breathing deeply, knowing that we were going to be ok.  When we picked the kids back up, I felt like a weight had been lifted.  We still faced incredible odds with Alyssa but I knew we were facing them together. 

If you and your partner avoid the giant medical elephant in the room, you might consider setting aside a specific time to discuss it.  Sit down together and don’t get back up until you have confronted the fears and made a plan to fight this fight together.  However, if you feel like your partnership has become more about your child’s medical needs than about romance, I highly recommend that you take a date this Valentine’s Day and leave the diagnosis at home.  Give yourselves a chance to reconnect with each other without focusing on the disorder.  It will still be there when you get back but it might not look as overwhelming when you know that you aren’t fighting it alone. 

On the Anniversary of her Diagnosis

Today is the two year anniversary of my life as Humpty Dumpty.  On December 11, 2013, I stood in a WalMart parking lot and answered the phone call that changed everything.  That was the day that I broke. 

When Alyssa came to us, I knew that she’d had seizures as a baby.  The caseworker dropped her off with a bag of pills that had names I couldn’t pronounce but said that they were just a precaution.  She said Alyssa didn’t have epilepsy.  A few months later, on Christmas day, Alyssa had several long seizures in a row but the doctors told us that it was a fluke caused by the stress of foster care.  Then, a year later the seizures hit with a vengeance.  This time they didn’t say that it was a fluke or something that she would grow out of.

For months, Alyssa seized no matter what the doctors did and she kept losing ground cognitively.  Eventually, things started to settle down and we would sometimes go a few weeks between seizures. Her doctors remained worried though.  We were on our last available medication so if the seizures got worse again, our options were limited.  Alyssa’s neurologist referred us to an epileptologist who advised my husband and I to begin considering surgery.  They wanted to remove the part of her brain that the seizures were originating in.  The doctors said that we needed to have the surgery as soon as possible because the longer we waited, the more function she could lose and any damage would be more likely to be permanent.  

I went back and forth about the surgery for months. I was terrified of allowing the doctors to remove a part of her brain but I was just as scared of saying no.  Even the preparations for the surgery was dangerous.  She would need to spend a week in the hospital and come off of all her medications.  The plan was to cause Alyssa to have as many seizures as possible while they ran tests to determine the precise part of her brain that was malfunctioning. We already knew how devastating seizures could be but there was an additional risk.  There was a chance that when we tried to put Alyssa back on all of her medication at the end of the testing, they wouldn’t work.

I finally agreed to the surgery on one condition; I wanted genetic testing first.  No one could tell us why Alyssa was seizing and we had learned that there are some types of epilepsy that have genetic causes.  Since we have very little information on her birth family’s health history, I felt like we needed to check for a disorder before slicing into her brain.  The doctors were annoyed, especially when insurance initially denied the testing.  I dug my heals in though and eventually they swabbed her mouth and ran an epilepsy panel, all while telling me not to expect anything.  While we waited on the results we scheduled the testing for the last week of December. I wanted her to have one good Christmas before everything went haywire again.

All of that led up to that day in the WalMart parking lot. I loaded my groceries and the little kids into the car and was just about to take off when my phone rang.  Our epileptologist told me that the results were back and they changed everything.  She told me that Alyssa had a genetic disorder called PCDH19 epilepsy.  Of course I had never heard of that.  At the time there were only about 200 girls in the world who had been given the diagnosis.  She told me that this new label meant the surgery was no longer an option because if they removed a piece of her brain, the seizures would just come back in another area.  I learned that Alyssa was at a higher risk for SUDEP and a shorter life expectancy.  She said that the seizures might never stop and that her IQ would continue to drop with each cluster until it landed somewhere between 60 and 80.  I felt like I was Humpty Dumpty being pushed off the wall.

I got back in the car and tried not to cry to hard because I didn’t want to scare the kids but something had broken in my soul.  I called my husband but couldn’t get through so I called my mom while I drove. When I finally made it to the house, Curt pulled into the driveway behind me.  My husband works in the oilfield so there have been many times when things were difficult and he was gone.  Every time I really need him though, he is there and that day was no different.  We fell apart together that afternoon. 

When the tears finally slowed down, I wanted to crawl in bed and never get out.  I didn’t think I could face the world again.  The IQ numbers kept rumbling through my mind.  You see, I have never been one to care much about sports or popularity or physical perfection.  My dreams for Alyssa were that she would be a brilliant doctor or the president, but now she might not be able to live independently.  It all seemed so cruel and hopeless.  I think Curt knew that if I shut myself in the dark that day, it would have been even harder to go on so he talked me into going to my MMA class.  I had a deal with the instructor that if I had a day when all I could do was punch the bag, we would do that.  I’m sure I looked like a ragged mess when I walked in and said that hitting was all I had in me.  He never prodded but I spent the next hour taking my devastation out on the heavy bag.  Then I went home and went to bed.

I hated the sun when it came up the next morning.  The world seemed so happy and normal but it wasn’t the same.  I had written PCDH19 down on a napkin in my car but I wiped my face with it while I was crying so I had to call the doctor’s office and ask for the name of the disorder again.  When I hung up the phone, I Googled the random string of characters that I didn’t understand but already hated and found the Alliance and the Facebook group that I would come to depend on.

The next few months were dark. After months of fighting for her life, my body and heart were already exhausted but the little flicker of hope I had remaining had been extinguished in the parking lot that day.  I even grieved the loss of the surgery I had been so afraid of.  It was a terrifying prospect to cut out a part of her brain on the chance that it would give her a better future but at least there was some hope with that option.  In January we hit the one year anniversary of the seizures starting and I hit rock bottom.  It’s hard to live without hope.

When Humpty Dumpty fell, he at least had people who attempted to repair his shell but there are some kinds of broken where the pieces just won’t go back together.  Finding out that your child won’t ever be ok is that kind of broken.  You can try to patch things up but they won’t ever be the same again.  It takes time to come to grips with that and the process can be dark and lonely.

This anniversary, I am keeping myself busy but I’m not falling back apart. I’m finally learning how to be ok with this life and the uncertainty we face. It helps that some amazing research is being done all around the world so our future is probably not as bleak as our initial prognosis. More than anything though, I think I’m adjusting to life as Humpty Dumpty.  I’ve had the time and space to get made about being pushed off the wall.  I worked on grieving the broken pieces and accepting that they won’t ever go back together the way they were before that call.  I’ve also realized that there is some beauty in brokenness.  I am not grateful for this disorder and I would change it if I could, but sometimes I connect with people on a different level than I could before.  Sometimes I appreciate the life and time that we do have in a way that I didn’t before I knew how fleeting it could be.  Sometimes I look around and see other people who have just been knocked off the wall and I appreciate that my own journey has prepared me to help them on theirs.

Adoption & Epilepsy

Ask any adoptive parent about their home study and they will tell you about the invasive questions they were asked.  Most of us have stories of the awkwardness of a complete stranger sitting calmly in our living rooms while demanding information that would make even the most open person blush.  It is the adoption equivalent of prenatal care.  Birth mothers have to put their feet up in the stirrups for the OB/GYN but we have to open our nightstand drawers for a social worker. 

Looking back, the part of my home study that stands out the most is not the section with the intimate questions, it was the discussion about the children we would someday take into our home.  I vividly remember the social worker asking us if we were interested in taking in children with special needs.  My husband and I had spoken at length on the topic ahead of time and told her that we were willing to take on learning disabilities or minor challenges.  I remember saying that I admired the families that fostered and adopted kids with special needs but that just wasn’t us.  I said it wouldn’t fit our lifestyle. It all feels pretty ironic now.

When I was pregnant with my son, I prayed that he would be healthy and did everything I could to give him the best shot at a good start.  I stayed pretty healthy, went to my appointments, decorated a nursery and ate animal cookies every time my developing baby demanded them. Still, I knew that there was always a chance that something would happen and we could face challenges.  Even when you do everything you can to improve the odds, childbirth really is something of a crapshoot. Adoption is different though.  A professional comes to your home and writes out exactly what you are looking for in a child. She asks you about race and age and gender.  You get a choice about disabilities, except when you don’t.

Finding out that your child has a disability can be devastating for any parent.  We often go through the stages of grief much like you would after a death but we can cycle back through them with each new limitation, emergency or worsening prognosis.  We have to learn to live in Holland and give up on dreams that we cherished since we ourselves were children.  Often all of this is done while in crisis so we do not have the time to sit down and fall apart because we are fighting desperately for our children’s lives and futures. There will come a time when we adjust to this new life but the initiation is brutal and leaves wounds that never really heal. 

Looking back I think that our adoption experience complicated how I processed Alyssa’s diagnosis.  No parent wants their child to have disabilities but we had specifically requested a kid that was “normal.”  When I got the call about Alyssa, her case worker explicitly stated that she did not have epilepsy.  We had these grand life plans that didn’t involve constant trips to doctors and therapies or always having to live near modern medical facilities.  We did something good by choosing to foster and adopt so it didn’t seem fair that the child we received was not the one we asked for. I was angry about the unfairness of it all for a very long time.

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems.  I relate to adoptive parents too but our story isn’t just about adoption anymore.  I switch back and forth between groups depending on the support I need at the moment.  It is hard to find your tribe when you really fit somewhere in the middle and it is easy to feel alone when there isn’t a group with your name on it.

I don’t say all of this to make anyone feel sorry for us.  I am not asking for pity or pats on the back or patronizing comments about how God only gives special kids to special people.  I have realized over the past few weeks that there are many other families that find themselves in our position and I think maybe they struggle like I have.  I’m writing this tonight for the people who aren’t quite sure what group they belong to.  I’m writing to the mother who is raging at God for rewarding her good deeds with the chance to watch her child die.  I’m writing this for the people that lay awake at night wondering what they did to deserve this horror.  I’m writing this for the person who feels guilty because they are so angry and overwhelmed when that gets mixed up with the fear and grief.  I’m writing this to the parent that feels alone because I want you to know that I’m here too.  

We said exactly what we could handle and life didn’t listen.  We had great plans for the families we were building but those changed when the special needs surfaced. It is confusing and hard and not at all fair.  I can tell you though that it will eventually get better.  I know you didn’t ask for these trials but I also believe that you can make it through.  Give yourself some grace, accept the messiness and just keep breathing. 

To the New Epilepsy Mom:

I recognize that look in your eyes.  It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream.  Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures.  Maybe you are feeling broken having just received your child’s diagnosis.  Maybe you are ready to curl into a ball and hide because it all feels so overwhelming.  I’ve been there.  I’m still there sometimes.

When my daughter started seizing, the world turned upside down.  When we finally received her diagnosis of PCDH-19 Epilepsy, I broke.  I felt alone and scared and confused.  I didn’t know what to do or who to turn to.  At this point, we seem to have settled into our new normal so I’m sharing a few of the things I wish someone had been there to tell me.

1.       You are not alone.

I know you feel alone.  I know that it seems like no one understands.  Many of us who have been on this road for a while understand the terror and we are ready to walk beside you.  You can find us through your hospital’s social workers, online groups or Parent to Parent.  We want to be there for you.  I found a group of parents on Facebook who have children with my daughter’s disorder and they have been the ones to pull me through some of the darkest moments.

2.       Build your team. 

The old adage about needing a village to raise a child will become especially true.  There will be doctors, nurses, therapists, and social workers. (You’ll notice that I wrote every one of those in the plural.  That was on purpose.)  The relationship with your child’s teachers or babysitters will grow to a whole new level.  Take the time to talk with your team until you have your questions answered.  Research the professionals you are going to work with because having a great therapists / doctor / whatever you need can make a world of difference if your child’s progress.   

3.       Ignore the idiots.  

People will tell you that they know what it’s like because their dog had a seizure.  People will tell you that garlic or lemons or copper bracelets cured epilepsy for their father’s cousin’s friend’s co-worker.  In my experience it is better to roll your eyes than punch them in the nose. 

You can also expect people to think that your crisis is over if they see you at WalMart and your child is not currently having a seizure.  Realize that most people just don’t know the facts about epilepsy.  You can educate them if you choose but don’t feel guilty if you need to simply walk away.  It can also help to ask a friend to keep people informed so that the burden doesn’t fall entirely on your shoulders.   

4.       Be who you are. 

It’s easy to look at those “super moms” who seem to have it all together.  They balance all of their child’s special needs with their hair in place and advocate tirelessly without messing up their makeup.  I am not one of those moms.  My hair is never in place, my mascara is usually smudged and I am not always the most diplomatic person.  I used to alternate between feeling guilty for not being them and being angry at them for making me feel guilty.  Now, I’ve realized that most of them aren’t quite as perfect as I thought.

I also learned that many people cope with their child’s epilepsy by advocating.  If that’s you, perfect.  Write letters.  Demand action.  Go on fund raising walks.  All of those are great things to pour your energy / anxiety into.  If raising awareness or funding research helps you cope, then go for it.  If you are the mom that focuses solely on your own child and getting her or him the best care possible, that’s ok too.  If you don’t want to share your story, you don’t have to.   Work on finding a way to battle epilepsy that fits for you and your family.  The last thing you need to do right now is try to fit into someone else’s model of what a “good” epilepsy mom looks like.  You have enough on your plate already.

5.       Understand that your friends may change.

Sometimes the people who you thought would be there through thick and thin disappear because seizures are scary.  Sometimes people step up in ways you never imagined.  Your life has changed now and because of that so will many of your friendships.  Mourn the ones you lose but don’t spend too much time being bitter.  You have bigger battles to fight than that.

6.       Keep going.

Treating epilepsy is complicated.  Your child may need to be seen by multiple specialist and they may not be able to get the seizures under control immediately.  Don’t give up hope when the first medications don’t work or the second or third.  About 70% of people with epilepsy are able to control the seizures with medications but it often takes time to find the right drug or combination of treatments.  It can also take time for the doctors to diagnose the exact cause of your child’s epilepsy which can greatly impact the prognosis and course of treatment.  Many people never get an explanation but with time are able to find treatments that help. 

7.       Trust Your Gut

Researchers have made incredible advances in the treatment and diagnosis of epilepsy but this is not an exact science. You may be asked to weigh terrifying side effects of harsh medications against the unknown costs of waiting or non-medication interventions like surgery or ketogenic diets.  Do your research and ask questions until they are answered.  When you are not in crisis, take the time to figure out what treatment(s) makes the most sense for your child and family and feel right for you.

Also understand that epilepsy is more than seizures.  It can impact motor, speech, cognition and behavior.  If you think that your child is acting different, don’t be afraid to tell the doctors.  If you think something might be related, speak up.  Through it all, trust your intuition.  When something feels off, pay attention.  You know your child better than anyone else.  That is a knowledge set that the best specialist on the planet doesn’t have.  Never doubt its value. 

8.       Cry.

Or scream or laugh or punch a wall.  Epilepsy sucks.  This monster just invaded your family and is attacking your child. Fall apart for a little while.  The world won’t end if you do.  If it hasn’t happened yet, know that the day is coming when you break down sobbing at a completely inappropriate time or your reaction to a small annoyance is entirely out of proportion.  Finding a way to let some steam off along the way might prevent you from dissolving into a puddle of tears when the gas station clerk asks how you are doing.      

9.       Breathe. 

Whatever you need to do to be ok, do it.  It may feel selfish to leave your child right now just so that you can get a manicure.  It’s not.  Your child needs you to take a break so that you can come back refreshed enough to be the advocate they need right now.  Parenting a child with special needs is absolutely exhausting.   

10.   Know that you will change.

You will never again be the parent, or the person, that you were before your child started seizing.  Every jerky movement will trigger something terrifying in your brain that other parents simply cannot understand.  Small joys like bubble baths will suddenly look like watery graves.  There will be good changes too though.  You will find that you can fight harder than you ever thought you could. You will figure out what in life really matters. 

I know you didn’t want this.  I know that you’re scared.  Believe me when I tell you that the sun will come back out at some point.  So, give yourself some grace, reach out to the mamas who have gone before you, hug your baby and just keep swimming. 

Let's keep talking about this.  Please follow me on Facebook or comment below.  

I'm Not Dancing

   If you ask adoptive mothers about things people say that make us roll our eyes, remarks about how lucky our children are to have us will always make the list.  We argue that we are lucky to have our children and it is not the other way around.  My kids are not lucky to have been so abused and neglected that they required an entirely new family.  However, I still recognize that Alyssa’s life and medical care would be much different if she still lived with her birth mother.  It is likely that she would not receive many of the services and treatments that I have advocated for.  It is likely that her first family would not be able to devote the resources needed to have her in an appropriate school or be able to focus on her health in the way that we are. 

   Those are uncomfortable thoughts. Alyssa is a child worthy of every treatment, therapy or resource that can help unlock her potential.  She deserves that, no matter who her family is, just like every other child does.  The fact that she is now my daughter does not imbue her with some special status that now qualifies her for a better outcome, or at least it shouldn’t.  She is valuable because she is valuable because she is valuable.  The end.

   I believe that all children are valuable and precious and worthy of the best medical care.  I believe that when kids get sick, it is our responsibility as a community to work towards healing and treatments that can at least improve their lives whenever possible. When it comes to children, demographics, family economics and specific diagnosis should not matter.  Unfortunately, this week the Texas legislature showed that they prioritize some patients over others and believe some conditions are more worthy of treatments.

   A bill legalizing medical marijuana, in an extremely limited form, is on its way to the governor’s desk.  I absolutely believe in legalization (as I have written about here) and I should be celebrating.  I am not.  First, there are many holes in the law that passed.  (You can read a great article about that here.)  It is poorly written and does not allow different ratios of THC, which are often needed to treat patients effectively.  Still it is a first step.  What bothers me more is the implication that my suffering child is more worthy of treatment than someone else’s child because of her diagnosis.

   This law explicitly states that only CBD oil is allowable and only for people with intractable epilepsy.  If you don’t know, medical marijuana has been a game changer in the world of epilepsy.  For the 30% of patients of who are not able to control their seizures through available medical treatments, this plant has been a godsend.  It has provided hope to families fighting epilepsy that had no hope before and it has effectively worked when nothing else has. At the same time, the movement towards legalization has also brought unprecedented awareness to epilepsy and our fight for a cure.

   Medical marijuana has also helped veterans with PTSD gain control of their symptoms and live normal lives.  In other states it has been used to treat kids with Crohn’s disease or multiple sclerosis.  Although the research is still in its infancy, due to archaic federal laws, even some people with autism seem to show improvements when treated with different ratios of CBD and THC.  Medical marijuana also works wonders for many people battling cancer.  Yet somehow in the movement to gain treatment for our own children, we decided that all of those patients were somehow less worthy of treatment because they carry a different label than our kids. 

   Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay.  Our children are dying while they wait for legalization.  We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant.  That is devastating and unacceptable.  It is equally appalling that we would deny other parents the chance to save their children.

  I should be dancing because we finally have some semblance of legalization.  I am not.  Instead I find myself very conflicted.  I am angry that politicians were so busy fighting about another bill that they did not vote on the comprehensive medical marijuana bill.  I am sad that many of the marijuana refugees will still not be able to come home.  I am frustrated the current version may not be broad enough to create the infrastructure needed for us to actually have access to the plant we so desperately need.  I am heartbroken that a gain for Alyssa does not equate to hope for my friends whose children are also facing life-threatening diagnoses. I am hopeful that when the politicians realize that limited legalization does not lead to the fall of civilization as we know it, they will come together and create a more comprehensive set of medical marijuana laws.   I am hopeful that this small step leads to more.  I am hopeful, but I am not dancing. 

I’m a special needs mom and I need you to hold my arms up.

   When I was a little girl, my mom and I would get up early most mornings to read the Bible together.  I always loved the stories in the Old Testament of battles and heroes and romance.  I pictured myself as Ester speaking for her people, Deborah leading the armies into battle or Rahab saving the spies.  In my daydreams I was the Biblical version of Wonder Woman, stepping up and saving the day when the men failed to get the job done.  These days I’m too tired to play warrior princess.  Since Alyssa got sick, there is another Old Testament story that has resonated with me though. 

Alyssa is 6 and has PCDH19 Epilepsy

   In Exodus 17, we read a story about a battle that the Israelites fought with Amalek.  In this particular battle the Israelites prevailed so long as Moses held up his hands but he grew tired as the battle raged.  As his weary arms started to sink, the enemy grew stronger.   Seeing this, Aaron and Hur found a rock for him to sit on.  Then they did something that changed the course of the battle.  They stood beside Moses and they held his arms up.

   Parenting in general is hard work but when a child has special needs it can start to feel like an impossible task.  There are so many appointments and emergencies and daily trials that it is enough to make your head spin.  Ironically, as the world implodes and we need help the most, many special needs parents find their support systems dwindling.  Some people choose to abandon us because our new lives don’t fit their sense of perfect.  Some shrink away in fear that our tragedy might wear off on them.  I honestly think though that most stand back because they don’t know what to do.  In the face of what seem like insurmountable obstacles, physical challenges and emotional devastation, they simply don’t believe that they have anything to offer.  That could not be farther from the truth.

Alyssa hanging out in the hospital in March 2013

    As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight.  There were moments though, when people came beside me and helped me bear the load.  In small acts of kindness, friends and strangers came along and held our arms up.

It was the small town pharmacist who saw us adding yet another medication and took the time to ask if I’m ok.

It was my MMA instructor doing an entire class of just punching the bag because I was too raw for anything more.

It was the time at work when I broke down and every woman in my office stopped what she was doing to hold me while I sobbed.

It was random text messages from people saying that they were praying for me.

It was my mom sitting with Alyssa so that I could sleep for a few hours after being awake at the hospital for days.

It was our brand new babysitter being willing to keep Alyssa even on bad days so I didn’t have to quit school.

It was the other mothers in a Facebook group who understood the true intensity behind a simple post of “I hate epilepsy” and offered their virtual support from around the globe.

It was the friend who let me take off the mommy hat for a little while and talk about school or clients or some other gossip that helped to balance out my brain.

It was the people who gave my boys grace because they understood how hard it is to watch your sister fall apart.

It was the teacher’s aide who gently held Alyssa as she crossed the stage so she could still receive her pre-k awards last year after seizures left her disoriented and unstable.

Christmas 2014

   What I want you to notice is that few of the things I have listed are world changing actions but they were slivers of light in an otherwise dark time.  They cost their givers very little but meant the world to me.  There was no special skill or expertise required, only the willingness to stay when our life was anything but pretty and we were too depleted to give anything in return.

   The truth is that you usually don’t have to do anything extravagant to support the special needs parents in your world.  I don’t need you to fight my battle.  I don’t need you to have all the answers or the perfect plan to win the war.  I just need you to stand beside me sometimes and hold my arms up.

                                                                                  

My partner in crime.

Cautious Optimism

   This morning Hubby and I got up at the crack of dawn and braved rush hour traffic for an appointment with Alyssa’s epileptologist.  (An epileptologist is a neurologist with 2 additional years of specialized training who only treats epilepsy.)  We hadn't seen her since December because Alyssa is fairly stable at the moment.  In fact, in May we will have made it one year without a tonic-clonic seizure (what used to be known as grand mal seizures.)  

Daddy, Alyssa & Super Bradley checking out the games at the children's hospital.

   A year without seizures is a huge milestone in the world of epilepsy.  Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications.  On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.

Pink band-aids and suckers make everything better.

   The other fly in the ointment is that the lack of seizures is allowing us to see the behavioral and cognitive challenges that Alyssa faces.  She is a complicated kid in that regard.  It is hard to tell what is the medications, the disorder, damage from seizures or a result from the abuse she suffered before coming to us.  What is clear is that we have a long road ahead of us.

   Tonight, I am cautiously optimistic.  I am choosing to enjoy this space between clusters, regardless of how long it may last.  I am choosing to be grateful for the amazing team of professionals that we have built even as we amass more specialists.  I don’t know what tomorrow holds, but I am looking forward to hitting the one year mark, and whatever comes after that.

A Child of Texas

I remember the day I met Alyssa.  I was her younger brother’s foster mother so when the family member she was with could no longer keep her safe, CPS called me first.  My husband and I had signed up to foster with the hope of adopting at some point but we had been clear that we did not feel up to taking on a special needs kid.  When the caseworker explained the situation, she said that Alyssa had seizures as a baby but had outgrown them.  She was still on some medication as a precaution but I was assured that she did NOT have epilepsy.  Sometime I wonder what my answer would have been if anyone had known the truth about her little brain back then but regardless, Alyssa joined our family that night. 

Alyssa was two and half years old when she came to us.  She was mostly non-verbal, had some developmental delays and would scream for hours at a time.  It was tough road and there were times I thought I could not handle one more day.  Eventually the mama bear in me won out and I fell in love with the broken little girl who needed someone to love her through the pain and defend her in a system that did not always seem to have best interest at heart.  In November of 2012, 14 months after she came to me, the court terminated parental rights so Alyssa and her little brother, Bradley, were in route to becoming our forever children.  Christmas was amazing that year.  It seemed like everything was coming together for our little family.

On January 10^th, 2013 our perfect world collapsed.  Alyssa had a seizure on the way to school that morning.  She had only had one cluster of seizures in all the time she had been in our home.  That was a few months after we got her and her doctors said it was an anomaly, a result of the stress of being a foster child.  This time it wasn’t stress.  I laid her down beside me and she seized again and again and again.  We went to the emergency room, then took an ambulance to Cook’s Children’s Hospital.  Over the next three months we were admitted to the hospital six different times, went through multiple medications with horrid side effects and were driving several hours each week to see various specialists who might have an answer.  In spite of everything, Alyssa regressed to the point that she was back in pull-ups, could barely speak or walk some days and did not always know who we were.  Through therapy, she had worked past most of the delays she had when she came to us and was a fairly typical four year old but now there were days when she would simply lay in bed and stare with a vacant look in her eyes. 

An allergic reaction to an anti-seizure drug caused Alyssa to swell and spend several days in the hospital.

Our adoption had not been finalized yet, so Alyssa was still a foster child at that point.  We were lucky to have some amazing CASA workers, one of whom was a retired nurse who joined me at an appointment with Alyssa’s neurologist so that she could report to CPS exactly what the prognosis was.  The doctor could not explain the sudden onslaught of seizures and had little hope that Alyssa would ever be back to normal.  Shortly after, I was asked if we still wanted to adopt Alyssa.  Her caseworker said that she knew this was not what we signed up for.  We never planned to have a special needs child and they understood if we wanted to back out.  On May 31^st, 2013 my husband and I adopted Alyssa and Bradley. 

Adoption Day!

Eventually, we found a cocktail of medications that is currently controlling the seizures but not without some serious cognitive and behavioral side effects.  Alyssa is in speech and occupational therapy and has gained a lot of ground but regresses any time she has breakthrough seizures. One year ago, genetic tests revealed that she has PCDH-19 Epilepsy.  It is a rare and severe type of epilepsy with devastating complications.  Up to 70% of the girls with PCDH-19 develop cognitive delays.  Mental illness and behavioral problems are common.  Alyssa is also at an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy).  With this diagnosis, we know that if we can’t control the seizures, she will continue to decline.  As it stands, we have had to consider leaving our home and family to join the exodus of families who have forsaken everything in hope of a cure in Colorado.    

I know that there are people all over the world who are being forced from their homes and in the grand scheme of things, our situation is mild.  Honestly, if you are going to be forced to move somewhere, Colorado is about as good as you could hope for.  The mountains are beautiful and the people are great there, but Texas is our home.  Packing up would mean starting over.  My husband is a driller in the natural gas industry which is not prominent in that part of the country.  Leaving would mean abandoning our friends and our family and our church.  Worst of all, it means not ever coming home.  Crossing the state line to spend Christmas with my parents would mean risking arrest and even losing custody of our children for possessing the medicine that my daughter needs to stay alive. 

Alyssa

Alyssa is our daughter but she is also forever a child of Texas.   She was a foster child who legally belonged to the state and people of Texas.  When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us.  When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.  The failed war on drugs has created countless victims, including several children with epilepsy who have died waiting for laws to change.  It is not just those families who are broken right now, our entire country should be mourning the loss of our children whom we failed to protect.  I am adding my voice to the thousands of parents of children who are demanding the legalization of medical marijuana because I believe that our children should have access to a plant that is being effectively used to save their lives.  It is time that we stepped back from ineffective and non-scientific bans that keep medicine from kids who have no other hope.

 

The Mom I Wanted to Be

I spent a short time with a local counselor last spring as I was attempting to come to grips with Alyssa’s diagnosis.  I quit seeing him after he suggested that it would help if we thought about “just readopting Alyssa out.”  I have a whole blog / rant in my head about that but I’ll save it for later.  One thing that the idiot counselor said did help though.  He explained how parents of kids with special needs go through the grief process in much the same way that people do after a death.  We experience the stages of denial, sadness, bargaining, anger and eventually acceptance or meaning making.  Our grief can be complicated though.  We often feel shame for being anything other than the superhero that embraces their child’s uniqueness and works hard to overcome every challenge.  We have an added layer of fear because many diagnoses are uncertain, lead to further decline or result in untimely death. We also tend to cycle through the stages repeatedly.  There is a finality about death or a complete loss that is different from living with a child with special needs.  Every doctor’s appointment, teacher meeting or random Saturday can bring to light some new limitation or loss.  We grieve all of these challenges that our children must face but also the idea of the child we expected and the parent we wanted to be.

I grew up on ranches and in the rodeo.  I cleaned stalls and fed the animals.  I raced my horses down trails that grown men were afraid of.  In high school, when backyard wresting was popular with my friends, I was always willing to jump in the ring with the guys.  I was a tomboy in every sense of the word and I loved it.  I don’t remember ever being told that there was anything I couldn’t do because I was a girl.  I wanted a daughter like that: gritty, rough and tumble, adventuresome and fun. When I pictured my future daughter, I always imagined her running in from the pasture holding a frog with mud on her face or leading the boys out on some grand adventure.  I used to say that my worst fear was to have a little girl that wanted to be a cheerleader.   I pictured her growing up to be a cowgirl or doctor or the president or some amazing woman that would change the world. She would be smart and strong and fearless.  I love and adore my daughter for who she is.  I have also grieved the limits that epilepsy has placed on her childhood and future.

I wanted to be that country mom who gives the kids free rein as long as they are back at the house by sundown.  I wanted to let all my children have the freedom to build forts and climb trees.  To be fair, I don’t think that anyone is actually the parent that their childless-self pictured.  Everything changes when you become responsible for another human being.  For the most part though, I take that laid back approach with my boys.  I am comfortable with scraped knees and dirty faces.  I encourage them to take risks, explore, and fully enjoy the privilege of a childhood lived out in the country.  With Alyssa, it’s different.  Epilepsy won’t let me be the mom I want to be to her.  I can’t let her go off exploring by herself because someone has to be there in case she has a seizure.  I have to discourage risks because damage could be too great.  I have to balance being the helicopter mom that her disorder demands with the part of my heart that still desperately desires to let her run free with her brothers.  Twice a week I go to an MMA class that has been a god send for me.  Noah attends the youth class and Bradley loves punching the bags.  In a few years, he’ll be out there fighting with us too.  Alyssa gets to stretch with me beforehand but that is the most involved she will ever be.  Her doctors have been very clear that she cannot sustain a hit to the head and is not allowed to fight.  My daughter, my only little girl, is different than the boys.  I understand that it is because of the epilepsy and that one blow to her head could be devastating.  Still, there is a pang in my chest when I look to the side and my daughter is the one who isn’t allowed to participate.  This isn’t the mom I wanted to be.

Children rarely grow up to be exactly what their parents pictured.  Many parents struggle to accept that their kids have chosen different paths.  The difference is that parents of special needs children grieve because the different paths were not chosen by our children; they were forced on them.  We aren’t the angels (or demons) that the media portrays.  We are human.  We are facing challenges that most of us never expected.  We grieve in many ways over many things.  Sometimes it looks like denial or rage or depression.  Often it is mixed with fear and shame.   Sometimes it is triggered by the big things like declining health or seizure clusters.  Sometimes we are responding to the realization that one more hope has been dashed or one more limit has been added to an already long list.  Sometimes it is simply difficult to live with the fact that the moms our children need are not the same as the ones we planned to be.

Christmas with Epilepsy

There is a misconception in the outside world (ie: everyone not living with a person who has epilepsy) that as long as a person is not actively having seizures, all is well.  That may be the case for some families dealing with less severe forms of the disorder but epilepsy is a constant presence for many people, even when the seizures are less frequent.  We were fortunate this year to make it through Christmas without a cluster.  We survived family, chaos, presents and irregular schedules.  We had a great time with my grandparents who flew in from New York so that my grandmother could make us a traditional Italian dinner.  In all of the festivities though, PCDH-19 was always lurking in the shadows.  I don’t want the three people reading this to get idea that  I'm complaining or that we have had a particularly hard time this season.  For the most part, we had a wonderful Christmas.  Since it did go fairly well though, I think that this is a great opportunity to share a few of the ways that epilepsy impact families like mine, even on the good days.

On Christmas Eve my family’s festivities started at 2:00 in the afternoon.  I was there as we all sat down together for the first of four courses of pure awesomeness.  Alyssa, however was not.  Curt stayed home and brought her later in the afternoon so that she could get a full nap.  We also had to leave the party sooner than we would have liked to make sure that she was able to be well rested the next morning.   Unlike her cousins or her little brother, missing a nap is simply not an option for Alyssa.  A lack of sleep can trigger seizures for people with epilepsy.   Even on the holidays, we have to build our days around rest in a way that most other families do not.

Christmas is kind of a perfect storm when it comes to stress.  The combination of cramped schedules, expensive wish lists and seeing family we may prefer to love from a distance can be a lot for anyone to handle.  Even the positive stress of opening 4,985,157 presents can be overwhelming for lots of kids.  Add all of that to a sugar high and meltdowns are bound to happen with the best of children.  I notice that my boys are more emotional than normal and act out in ways they normally wouldn’t. That is what I consider typical.  Epilepsy goes a step farther when stress is involved.  Stress, like a lack of sleep, can cause seizures.  The first time that Alyssa had seizures after she came to live with us was on Christmas day three years ago.  The neurologist wrote a letter to the judge after that episode detailing the stress that Alyssa was under and stated that he believed her anxiety about changes to family visits was the cause of that cluster.  Stress can also cause smaller neurological problems for Alyssa.  She gets much more disoriented.  She may have to be reminded about the same simple command multiple times or she may ask the same question repeatedly.  In many ways, Alyssa is similar to her three year old brother and has to be watched accordingly even though it can be tempting to allow her the freedoms normally allowed to other kids her age.

The last time that we visited Alyssa’s epileptologist (a neurologist who specializes in epilepsy), she discussed her concerns about Alyssa’s impulsivity.  The combination of medication and damage caused by previous seizures has resulted in very high levels of impulsivity for Alyssa.  She often acts before she thinks or does something she has been warned about only moments before.  Again, this is above and beyond what would be expected for a typical 5 year old. That has the potential to be dangerous because she may not assess the risk involved in an activity before diving in.  This week we witnessed it in a much more minor manner.  All the ladies in my family spent the afternoon at Painting With a Twist and I brought Alyssa along for some fun girls time.  They have an instructor who walks you through each step of the painting so that everyone ends up with a (somewhat) similar piece at the end.  In the beginning, Alyssa was following along fairly well.  Her lines were less defined than the most of the adults’ but she was obviously trying to replicate the instructor’s work.  Then we came to a more complicated step that several people needed help with.  About a minute into the pause, I looked over and Alyssa’s entire canvas was covered with giant crosses.  When there was a defined task to be completed she was fine but she could not leave her brush laying down in the dead space.  On the plus side, my Christmas tree will likely only come out once a year while she now has a beautiful piece of abstract art hanging on the wall year round.

People often ask me if Alyssa is still having seizures and we are fortunate to have made it several months without any tonic clonics.  However, I think it is important that people understand that a break from seizures does not equate to a complete healing.  She has made great strides over the past year and we are hopeful that she will continue in this direction.  In Buzzfeed style, I now leave you with my list of 10 ways that my family feels epilepsy on the good days. 

1.       No matter how many people are in the house, her bathroom door must always be unlocked so that we can get to her in an emergency.

2.       Changes in diet have a huge impact on Alyssa, so even on special days she can’t live on only chocolate. 

3.       At the end of a long day, our bedroom door stays open so that we can hear the horrible scream if all our precautions weren’t enough to keep the monster at bay. 

4.       We mix Alyssa’s Depakote into cool whip because that is the only way she will take it.  She was NOT enthusiastic about seeing homemade whipped cream covering her Christmas morning pancakes.

5.       When the parents of children with PCDH-19 talk, the conversation always seems to end up on behavioral and emotional struggles.  Alyssa often has trouble regulating her emotions, similar to a child much younger than her.  During the holidays, this can be more pronounced because there is so much for her to process, less time to do so and often there is an audience. 

6.       Alyssa LOVES to play with hair and will impulsively start trying to style anyone sitting low enough for her to reach their head.  We are practicing asking people BEFORE we style their hair… sometimes she still forgets.

7.       The flu has been bad in our area recently and any sickness or even a low grade fever can trigger a cluster for Alyssa.  That means that a simple flu could do irreversible brain damage to my child.  It can be challenging to balance the desire to give her a typical childhood with the urge to protect her from every potential harm.  Every Christmas parade, holiday event or party invitation can trigger a lengthy internal debate for me.

8.       Sometimes the best answer for our family is no.  I dislike missing family outings so that we can make an early bedtime.  I hate having to scale back when my nature is to overdo the holidays but I know that going overboard could mean serious trouble for us.  Sometimes I still resent it though.   

9.       The focus on rest, relaxation and health can be good for all of us.  After a particularly stressful period on Christmas day, Curt and I took the kids for a walk in the woods.  It was just the 5 of us enjoying the peace of nature and it was one of my favorite times of the day.

10.   Our family traditions are constantly being adapted to better fit her needs but we make changes with the knowledge that it may not be enough and that those changes may not be in the best interest of our boys.