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.

 

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.

 

The Little Blue Cot

   It has occurred to me today that God is in control.  Someone that I greatly admire and care deeply for received a difficult diagnosis recently.  In the Facebook post where she shared her condition, she made the statement that even though she was surprised, God wasn’t.  That’s been rumbling around in my head ever since. 

   This morning I was thinking about the little blue cot in my dining room.  We got it for Christmas.  The Little People were still in foster care then so they received a bunch of donated gifts from our agency.  When our caseworker brought them, she brought us this little, blue, child-sized cot.  Hubby and I thanked her for everything and exchanged odd glances.  What were we going to do with the cot? Apparently, when she was picking up the kids’ bags, she saw that laying out and felt like we needed it.  I stuck it off to the side of my room because I didn’t see the need.  We talked that night about what kind of person would even donate such a random gift.  It’s not exactly at the top of most children’s gift lists.

   In January, Little Miss got sick and I pulled the little blue cot out and set her up next to my bed so I would hear her if she started to have a seizure.  The seizures kept coming and the cot stayed out.  Usually if she has one, she sleeps for about 30 minutes afterwards.  On days that she has clusters of seizures (thankfully those are becoming fewer) she may have 10 – 15 in a day.  She may spend the majority of the day incapacitated so I bring the cot into whatever room that I am working in.  I can cook dinner or do schoolwork or help Captain color and still be close by if she needs me.  That little blue cot has made a big difference in our acclimation to this new world with epilepsy.  It is one of those little things that you suddenly become really grateful for when you are forced to start counting the blessings that you do still have. 

   I have struggled lately with some of the limits we have come to realize recently but this morning I was amazed at the providence displayed by that gift.  Back in December when I still though temper tantrums were our biggest issue, he was already putting things into place for this fight.  The God that cares about the sparrows and the flowers knew before I did that we would have days where my little princess was unconscious for 8 hours straight.  He knew that while I was working on my semester projects, her brain would be misfiring.  He knew that her brothers needed me to not be stuck in her bedroom waiting for the next episode while they tried to tend to themselves.  He knew that in the chaos and the pain and the overwhelming distress, we would need a little blue cot for her to lay on with her blanket and her bear.  As much as this has shaken me, I find it comforting to know that God is still on His throne.  He was not surprised.  He knew this was coming and He was prepared to supply all our needs before we even knew that they existed.  If you are in crisis today, take a look around.  You may just see evidence of the creator who knew what was coming and is with you through it all.  You might even see your own example of a little blue cot.

Praying for Poop

   I have this cross hanging in the nursery that has part of a verse from 1 Samuel on it.  It quotes Hannah, a woman who had been barren as she dedicates her son to the Lord and praises God saying “for this child I have prayed.”  I hung it there when that was still the spare room and my children still lived only in my prayers.  We ended up putting the changing table against that wall so I have had this running joke in my head for about a year that I prayed for poop.  I was changing a particularly disgusting diaper one day when I had this epiphany that babies come with poop, lots of poop.  See when we pray for children, we tend to have this picture in our head of bedtime cuddles, frilly dresses and toothless smiles.  I don’t know about other women but I know I never sat and prayed for dirty diapers.  If you want the baby though, you have to take the poop along with it.  On rough days I remind myself that all of it is an answer to prayer.  The blessings that I call my children are worth the messes. 

   We have had a lot of poop lately.  When they brought Little Miss to us, they told us that she had seizures when she was a baby.  They said that she still took a little medicine just to be safe but that she had grown out of it.  For a long time that was true.  We had a little scare on Christmas of 2011 but then they disappeared again and they decided that was just the result of more stress than her little brain could handle.  Then this January she had a seizure, and then another and another.  Then all of the sudden it got really, really bad and soon I was following an ambulance to the children’s hospital and calling the church so that they would pray that my little girl would just wake up.  Nothing has been the same since that day.  We have bounced from specialists to emergency rooms to more and more tests.  Some days she would wake up and between the seizures and medications, she wouldn’t know who I was anymore.  She would just stare at you and smile with a blank look in her eyes.  I had to quit the job that I loved because of her constant medical appointments and not being able to find childcare that wasn’t afraid of her.  I almost had to quit school but managed to hang on by a thread and finish the semester by living off 3 to 4 hours a sleep each night for a few months.  Things have eased up some but our whole world still revolves around this monster they call epilepsy.  Even the little things that I never would have thought about are a big deal now.  Like, when we go to a restaurant, I have her sit in a highchair so that if she has a seizure and falls, the sides will catch her before she hits her head on the floor.  And, I sit in the new mothers’ section at church now because it is right by her Sunday school room and they need to be able to get me, just in case.  And we have to be extra careful because little things that used to be normal are dangerous now, like swinging or swimming or riding horses or… It has been exhausting and devastating.  There have been days when I felt like I was breaking and I just wasn’t sure how much more of this “poop” I could handle. 

   We were blessed with two wonderful CASA workers (Court Appointed Special Advocates) that have been with the little people since day one.  One of them is a nurse and a few months ago, she came with my to a neurologist’s appointment so that CPS could better understand what was going on.  After that, the department came to me and asked if we still wanted to proceed with the adoption.  They said that they understood if we didn’t.  We hadn’t signed up for a kid with special needs.   What they didn’t understand, is that we believe she is an answer to prayer and we weren’t willing to throw out the baby just because of the poop.  I couldn’t turn my back on the child who had called me Mom for a year and half just because she got sick any more than I would have abandoned my biological son if he needed me.  I know in my heart that Little Miss and Little Man were both given to me by God.  Last week, when they finalized their adoption, I had total peace knowing that He is going to get us through whatever trials lie ahead.  It’s not because there is anything special about us because honestly we still aren’t real sure what we’re doing here.  We just keep putting on foot in front of the other and believing He will direct our path.  Along the way, we just keep thanking God for entrusting us with all those dirty diapers and the beautiful little people that accompany them.

Mother's* Day

I saw a post on Facebook recently about Caregiver’s Day.  It was a more inclusive version of Mother’s Day that incorporated all types of relationships that “have made a significant impact in our life.”  They talked about the many people that don’t get a day because society doesn’t call them fathers or mothers and suggested that you  “hug your caretaker whether they’re your mother, father, siblings, aunt/uncle, cousin, grandparent, foster parent, mentor or friend and tell them thank you for valuing you as a person and taking the time to show they care.”  Now, I’m all for showing appreciation but this really irritates me.  I guess it irritates me a lot if I’m postponing the blog I have in my head that breaks my multi-month silence to vent about it.  It’s about more than just the rebranding of a hallmark holiday though.

In foster care, there is a push right now to re-label me as a foster carers.  In fact, a few states have already legislated the change because, I guess, there was nothing else important going on in the government that day.  Apparently that is more PC and it doesn’t hurt the birth parents feelings as much as hearing us called foster moms and dads.  Now, personally I don’t think that should really matter.  If your child is in foster care than 99% of the time it is because you royally screwed up.  You need to be uncomfortable because maybe that will motivate you to step up and be the parent your children desperately need you to be.  More importantly though, I’m not a carer.  I’m a parent.  There is a BIG difference.

My kids go to a sitter after school who cares for them.  She feeds them snacks and plays with playdough and sends them home.  If they are sick or cranky or mean to the other toddlers, she calls me and I have to go get them.  I sincerely hope that she cares ABOUT my kiddos (and I feel like she does) but her job as a caregiver is really only to care FOR them and their basic needs while I am away.  That’s not the job that the state wants me to do with foster kids.  I am supposed to spend the night on the floor in their bedroom when they can’t sleep because they are afraid of their abuser coming back.  I am supposed to love them enough that they can learn to attach even though it means my own heart gets broken.  I have been hit and kicked and bit and spit in the face and called every name under the sun and I am supposed to just take it because I understand where that came from.  A carer doesn’t stick around for that.  When Little Miss came to me, she would scream at the top of her lungs for hours at a time and flip off strangers and get violent in a way that I would not have believed a child so young could.  A simple caregiver calls someone to pick up a child like that; a parent loves the broken baby who doesn’t have words to say how bad she hurts and celebrates as the fits eventually get shorter and fewer because it means she is healing.

I am a foster parent.  I do everything that a parent does, only I do so with kids from hard places who might stay forever or leave tomorrow and take a piece of my heart with them.  I think it is insulting to rebrand my position to appease child abusers who don’t want to be reminded that their baby needs a mom and right now, because of their mistakes, that’s me.  It seems to me that instead of changing my title to further emphasize my status as a less-than-real-mother, we should expand the definition of mom.  As a society, we should recognize that there is more to parenting than blood and there are many paths to motherhood.  Women who adopt or foster or raise step children or take in kinship placements or fill the role some other way are mothers.  We do them, and their children, a great disservice when we ignore that.  So, I’m eschewing Caregiver’s Day.  Instead I want to wish a happy Mother’s day to all the moms and all the moms*, no matter what your asterisk represents.  

And the winner of the kids is...

Let me start this by saying that we are foster/adopt.  Our goal is, and always has been, to grow our family through adoption.  Having said that, I have heard some foster parents bashing the system and birth parents involved lately.  They don’t understand why the parents are getting second (or fifth or sixth) chances.  They want to skip the court and the visits and the appointments and go straight to adoption by the foster parent.  I understand the love we feel for the kids in our care and how frustrating it all is but it really bothers me when I hear foster parents who feel like they are entitled to the children in their care.   

The grown ups in our cases have all screwed up.  They did things that we can’t comprehend and it’s easy to make it some kind of competition between us and them.  But, children are not some prize to be handed out to the winner of a parenting contest.  They don’t go to the one with the nicest house, the mom who volunteers the most hours at their school or the dad who coaches the most teams.  In case your fuzzy on my stance, let me make it clear. My family makes significantly more than our Little People’s birthparents.  That doesn’t matter.  We go on trips that they can’t.  That doesn’t matter.  My kids go to private school and wear nice clothes.  That doesn’t matter.  I love them to the moon and back.  Even that doesn’t matter.  Because, none of that is a reason for another mother to lose her children.  It isn’t a competition of whether we or the bios are better for the kids.  It is about whether they can do what the state expects them too in the time allowed.

 If you cannot understand that, then you need to be straight adoption because until the ink dries on the adoption decree they are not fully our children.  As long as TPR hasn’t happened, the birth parents have a chance.  We understood that when we got into this.  So it is one thing to advocate for our kids but it is another to try to push for us to keep them.   It is our moral and ethical duty to push for what is best for the children and most of the time that means reunification.  I don’t even let people pray that I get to adopt my little people because doing so is praying that another family will fall apart.  Adoption is a beautiful, wonderful thing that is also extremely painful for kids and adults.   It’s not ever the best case scenario.  Someday when my kids are older and they start asking questions, I want to be able to look them in the eye and tell them that I did not steal them.  I did everything in my power to help them stay in their birth parents.

Part of doing everything means doing visits.  Yeah they suck but we knew that when we signed up.  Our job is to help our kids handle them and do what we can to make them successful.  That means we support the bios.  We send notes or pictures.  We stay up late those nights and rock our crying children while they try to process a world that doesn’t make sense.  We work towards reunification as long as that is an option even if we cannot stand what they did to the children we love. 

Fostering is hard.  This is a slow and hard process and there are no guarantees.  We all have tough moments but our general attitude has to be that we want what is best for the kids even if that hurts us.  I believe with all my heart that every child deserves to have someone that will be devastated to see them go.  If you can be that person who opens your heart knowing it will be broken, then maybe fostering is for you.  But if you can’t, then you should look for another way to help kids or grow your family.