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.  

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.