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.

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.

The Lies I Believed

   When faced with tragedy, the human brain often refuses to accept the information presented to it.  We go into denial because the truth doesn’t make sense and it seems like more than we can handle.  Eventually though, most people come to grips with reality even as painful as it is.  We face the world that took the place of the one we knew.  We sort through the beliefs that we once held dear hoping to find some that are still true and replacing those that aren’t.  It is a painful but necessary process.  It requires one to admit that they were wrong about people and life and sometimes their beliefs about world.

   I have spent the last few months sorting through the lies and inaccuracies that I used to believe.  I believed that certain people would be there for my family no matter what.  I was wrong.  I thought that other people were simply acquaintances or peers but they stepped up and stood beside me at my darkest moments.  I thought that my children were healthy.  I thought that my faith and good works somehow protected me from devastation.  I thought life was going to look a certain way and our future held endless possibilities.  I was wrong about all of that.

   There is one particular lie that has been particularly hard to face lately.  I based my goals and dreams on a belief that I now understand all too well is simply not true.  Somehow in my naivety and high ambition, I swallowed the propaganda that women can have it all.  The truth is that we, or at least I, simply can’t.  I can’t parent my children in the way that they need and continue my education as planned.  I can’t give everything required to attain an advanced degree and successfully manage a household while my husband works out of town and I have limited support.  I can’t plan to work several more years on the degree needed to achieve my goals when I can’t even find childcare for two evenings a month next semester.  It is not a matter of being willing to make sacrifices or lean in.  The truth is that eventually you run out of things to give up and if I lean any farther I will likely just land on my face.  It is not a matter of lacking intelligence, desire or drive.  There are simply some hurdles that I am unable to clear.

   This semester has been about facing the lies and giving up on unattainable dreams.  I made the choice to not pursue a doctorate degree in psychology and stop when I complete my master’s in May.  That means that I will not be qualified for the positions that I have dreamed of and worked towards for years.  It means that I find myself in the uncomfortable position of trying to decide on a new direction with graduation looming only a few months away.  It also means that I will be available for therapy appointments and hospital visits, field trips and homework.  I may even be able to reintroduce my family to the concept of a home cooked meal.   

   At the moment, I think that I am making the right choice but that doesn’t make it any less painful. Taking the blinders off and recognizing the limitations in this life hurts.  Coming to grips with the fact that the way things are is in no way close to the way I thought that they should be is a difficult process.  I understand why some people choose to live like an ostrich and keep their heads buried deep enough that they do not have to acknowledge the world burning down all around them.  I have to believe though that at some point beauty will come from the ashes.  I can’t see the positive yet but at least I am a little closer to seeing the truth and that’s progress for me.

My Whiny Return

My head hurts and my lungs hurt and I’m tired and I want to take Niquil.  That may seem like an odd way to start back at a blog I seemed to abandon millennia ago.  Every other time I have tried to write though, it came out pretty angry.  I don’t mean angry like just a little snarky.  I mean my mom would blush and then call to give me a talking to.  It’s not that I’m not still angry.  It’s just that I’m too tired to care tonight and whiny is probably less upsetting to the people that I probably shouldn’t care about any more anyway than a rant would be.

So here’s the thing, I’m sick.  I have been for a few days.  I want nothing more than to take some Niquil and sleep.  I can’t do that though.  I have a special needs kid.  At every moment, I have to be alert enough to hear that terrifying scream that says a seizure has started.  There’s a monster under my little girl’s bed waiting to destroy her little brain.  No matter how calm things are, I’m not allowed to breathe because we could lose every gain she’s made in therapy if she goes status epilepticus and I don’t get her to the hospital in time.  Don’t even get me started on living in the shadow of SUDEP. 

So that’s my life.  I can’t breathe or relax or sleep. I can’t take Niquil when I’m sick. This isn’t the asterisk that I wanted.