The Pain Chronicles

I hate New Year’s resolutions.  I actively resist making them because I make grand plans for myself that never work out.  Do I actually think that I am going to start cleaning my kitchen grout on a regular basis?  Uh, no.

However, there is always this lovely gap after the holidays when all the work is done, the parties are over, my jeans are getting tight enough that stretch pants seem like the way to go and there is finally some time for my brain to relax and taking stock of life is inevitable.

I manage to always get fantastically sick in the middle of the holidays and this year was no different.  I got viral bronchitis and did more than one concert with a 101 degree fever.  Thanks to techniques I learned from makeup artists and super good stage lighting, I looked like this:

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It is hard to tell, but I have two cough drops tucked in the left side of my mouth!

After all the concerts were over, the kids’ performances were finished, the trips were done the presents were given, and the fun was had, I started to look at the picture.

It is one of the best pictures I have of myself.  And, you can’t tell that I feel awful!

Living with chronic pain (post chemotherapy neuropathy) is one of those things I don’t love to talk about.  It’s there.  It’s always there.  Sometimes, it’s just there but other times it is T H E R E.   The last month has been one of the toughest I have had in a long time.

I have been forced into bed and onto the couch.  I have had to relax and do almost nothing.  I have missed church and missed hanging out with friends.   Since I have learned to look for the silver lining, it has also given me extra time to be quiet and think about things.

I don’t love talking about my pain.  I honestly am bored with it and I enjoy hearing about the lives of other people.  But, I realized that it might not be a good thing to be quiet about my pain.  Over 100 million people suffer from chronic pain in the United States alone.  That is a crap ton of people.  There are enough of us that it would seem like we would all know each other and be friends.  However, pain is isolating.  When I am in pain, I don’t go out and I end up being by myself a lot.

Pain is scary and weird and strange to those who don’t suffer from it.

You may be wondering right about now what being annoyed by New Year’s resolutions has to do with pain.  I’m still working all this out, but I am beginning a new project call The Pain Chronicles.  It will be in the form of a picture a day on Twitter with a short description of what the picture has to do with pain and will be tagged as #painchronicles.  These were my first two posts today:

legs1

“It has been a while since my legs had to be protected from the cold with an extra layer!”

fort

“When life hands us pain, we make a couch fort!”

My goal with this new project is to take some of the mystery out of living with pain.  I have some really great days!  I have some really terrible days.  This is my effort to live a little more transparently and to communicate that even though “Life IS pain, Highness” (ten points if you get that reference), my life is also funny and sarcastic and diverse and just really good.

You can follow me on Twitter at @reallymarysmith .  The name is because my name is funny and I find myself saying “Really!  Mary Smith” a lot when I am introducing myself to someone new.

I probably will post some of the pictures and captions here every once in a while.

As always, if what I am going through and how I am handling it can offer some light and humor and encouragement to someone else, I feel like I’m living successfully.

And, that is about as New Year’s resolution-y as I get!

EDIT:  As it turns out, lots of people I love are not, in fact, on Twitter.  So, if you want to follow along, you can like the Facebook page I started called The Pain Chronicles.  It will mirror my Twitter account as far as pictures, but I may go into a little more detail.

 

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What in the world is going on with Jacob?

The title of this blog post is to answer the question I get quite a bit about Jacob.  Sometimes, it is in an exasperated way and sometimes it is in a bemused way as Jacob does something hilariously strange.

It is also the question I ask myself multiple times every day as I try to sort out his life, his epilepsy, his attention problems, his social difficulties, and his trouble at school.

Making sure that all of the above is handled in a good way is more than a full time job.

I haven’t said a lot in this format lately because I haven’t had a good answer to the question of what is going on with Jacob.

Jacob has been declared seizure free, yet he still continues to have seizures.

We had one of the worst experiences in a hospital this past July when his doctor did a 48 hour EEG to get a better picture of what is happening with his epilepsy.  I don’t need to relive all of that, but I may post about it sometime later.  Let me just say that it drove me to tears AND it made my mom cry, which is difficult to do since she is a tough cookie!

Jacob started Second Grade in August and has the best teacher we could have asked for.  However, we have gone through two para professionals since First Grade.  Jake is a difficult child at school and while I don’t blame them for leaving, it is hard to have to start all over with a new para.  I think we also struck gold with his new para who is a man and seems to combine all of the best qualities of both Greg and myself when working with our guy.  I am very pleased with the professionals in Jacob’s school life.  I have worked my tail off to build solid relationships with the people at school and I am starting to see the payoffs of two and a half years of work.  I gave his teacher a bottle of Wild Thing wine with a note that said, “Because my wild thing is probably the reason you need to relax.”  She loved it!

To say that Jacob has a difficult time in school would be the understatement of the year.  That all deserves it’s own blog post which, again, I may do later.

I recently saw a bumper sticker that said, “Proud Parent of an Honor Roll Student” and my first reaction was to wonder if I could get a bumper sticker that said, “Proud Parent of a Kid  Who Didn’t Hit Anyone at School Today!”  I have been able to retain my sense of humor, although it has been difficult.

After our bizarre time in the hospital,  I started looking for doctors.  Jacob was not getting the care he needed from his medical team.  I had many questions that were being ignored, largely due to an extended vacation that his primary neurologist needed to take.  I knew Jake had more problems than just epilepsy and I asked and asked for better care.  It never happened or I was told that we would talk about that later.

I have spent the last three months trying to find a new doctor for him, calling every one I could think of, asking for every referral possible, and was rejected because of our insurance more times than I cared to count.  I finally got approved to a medical center that has a wonderful reputation, but I never got the call for an appointment.

If you have followed my “Jake is not impressed” pictures on my social media accounts, then you know what I mean when I say that “Jake’s mom hasn’t been impressed” for several months now.

HOWEVER!

It is funny how life can change on a dime.  Jake had an EEG a few weeks ago and I was contacted by the neurologist we were trying to leave with an appointment date last week.  Since I hadn’t had any luck getting him into the new medical center, I decided to give it one more try, thinking that I would at least have more info to take to the new doctors.

My attitude, which had been sarcastic at best, changed drastically when the doctor sat beside me and apologized for the mess of the last five months.  Not only did she apologize, but she said that we have been on her mind and heart for the last month.  She laid out a plan that checked off everything I wanted and then some.

I pray every day that Jake will get the help and attention he needs and I have no other explanation for this about face than God has been annoying the crap out of our neurologist and she decided to do something about it!

This is what is coming up for Jake:

  • We finally have a diagnosis of ADHD and Jake has started medication for it.  He can’t be on the normal stimulant medications because they interfere with epilepsy, so he is on a non-stimulant med.  The disadvantage of it is that it will take a few weeks to figure out if it is going to work.  We are already seeing some encouraging signs in his behavior, so I am cautiously optimistic about school being better for him.
  • We will be doing a blood test to see if he has the genetic markers for epilepsy.  If he does, we will be able to treat his epilepsy in a more effective way.
  • We will be doing a blood test for every other genetic mutation under the sun to see if there is something we are missing.
  • We will be doing another test for Autism.  Jake was tested when he was 4 and it came back clear, but we have seen some developing signs that need attention.
  • Jake is very restless at night and we assumed it was seizure activity.  However, since the EEG was videotaped, we could match up the seizure activity with his movement and he was absolutely still when the spikes on his EEG happened.
  • SO!  We will be going to an Ear, Nose, and Throat doc to see if he has a problem that could interfere with his sleeping.
  • Uuuuuhhhhhm, I think that is everything we are going to be doing.

That’s a lot of stuff and I will do better about keeping everyone updated on what in the world is going on with Jacob!

Happy New Year from our family and may it be a better year than 2016!

christmasjams

 

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Help in the Midst of the Inferno

I wrote the following blog when our family lived in Colorado.  I posted it in the middle of the Waldo Canyon Fire in Colorado and it seemed to help so many people.  A few days ago, the Sand Fire broke out in Santa Clarita, the city where Greg and I lived and was where our sweet little house burned down.  I hope the words that I wrote and the experience we went through can help those who are hurting and afraid right now.

It has now been nine years since we lost our house to a forest fire.

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I’ve been sitting and watching the wildfires rage in the hills above our house  in Colorado, waiting with bags packed if we need to evacuate.  As if this this wasn’t tense enough, this is all bringing back a flood of memories to five years ago, when a California wildfire got out of control and burned our house to the ground.  We got out with the clothes on our back, our dog, and nothing else.

I’ve been frustrated with not being able to do anything, without the spare cash to give money to those in need, and with a small child who needs his mama to be with him.

I wrote the following to those who are currently facing what we went through.  It isn’t a journey I would wish on anyone, and I’m hoping this helps.

To the evacuees waiting to go home:

You are facing the hardest part right now.  You are wondering what has happened to your home, or if you even have a home anymore.  You are swinging between wild hope and despair.  You have cried tears of fear, anticipation, and of weariness from the waiting.

Try to keep busy.  If you have children, keep as normal a routine as you can.  If you have pets, play with them.  The distraction will be good for all of you.

For you, I pray for peace and for strength.  I pray for sleep at night and that your mind will be quiet, allowing you to build up your strength for the coming days.

It will get better.

To those who have lost your homes:

My heart aches for you.  There is little as overwhelming as what you are facing right now.

For a while, your life is going to be lived not a week at a time, or even a day at a time, but an hour at a time.  Get through the next hour and let the hour after that be what it’s going to be.  Try not to look too far ahead into an unknown future.

Allow yourselves to grieve.  It is true that it is only “stuff”, but it was yourstuff, your memories, your treasures.  Cry if you need to.  Be angry if you need to.

Try not to second-guess yourself.  The “if-onlys” are going to come fast and furious.  Block them out.  You did everything you could, you followed the advice of the people who knew best, and you kept yourself and your family safe. Rest in the knowledge that you did the best you could with the information you had at the time.

Allow people to help you.  You will have hundreds of people who want to help. Accept the gifts, the money, the food, the shelter, and the clothes.  Be gracious in your acceptance of even the oddest items.  Those strange things are going to become a funny story down the road.  You will be flat out overwhelmed by the generosity and love of friends and strangers.

Remember that people are scared and unsure of how to help.  They are going to say strange and sometimes downright rude sounding things.  Remember that they aren’t trying to be jerks.  They just don’t know what to say and sometimes, in the moment, the absolute wrong thing comes out of their mouths.  Let go of the wrong things, and be grateful for the thoughts, the attempts at kindness, and if you need to, cry in private.  As tempting as it is in the moment to say something back, keep your mouth shut.  You will be grateful in the days to come that you didn’t reply.

It’s okay to feel like taking it “a day at a time” is too overwhelming to comprehend.  Take it an hour at a time.  At the end of that hour, deal with the next hour.  Eventually, you will live a half a day at a time and then the impossible will happen and taking it a day at a time won’t sound like science fiction.

You are going to grieve the loss of your treasures for years to come, but like any other grief, it won’t be as sharp, as hard, or as overwhelming.

I pray for strength to do the overwhelming, hope for what now seems to be a dark future, space to grieve, and for the endurance you’ll need to pick up the pieces and move forward to a brand new normal.

My prayers will be with you in the days and months to come.

To those whose loved one has lost their home:

Your friend or family member is going to be facing some dark times ahead and they need your love, your support, and your protection.

They need to know that they aren’t alone.

They need to know that you are there no matter what.

They need to know that it’s okay to hurt, to grieve, and to feel whatever it is that they are feeling.

They need both your company and to be alone.  Be sensitive to the need for both.

The most important thing I can say to you is to be as quiet as you can.  The things theydon’t need to hear:

“It’s just stuff.”  While this is technically true, the stuff you might be tempted to talk about are your loved ones most precious possessions, things that remind them of beautiful days and give them hope for the future.

“It’s replaceable.”  Some things are, some things aren’t.  I got new clothes, new beds, new furniture.  I will never get back my wedding dress, my great-grandfather’s first gift to the woman who would become my great-grandmother, my daddy’s duct-taped Bible, or the tiny outfit that I wore that Jake was supposed to wear on his way home from the hospital.

“Why didn’t you get out sooner, stay longer, take an inventory of your possessions, get a better insurance policy…”, or just fill in the blank with whatever you are thinking at the time.

“What do you need?”  The answer to that questions is: Everything!  See below for some suggestions on how to help practically.

“How are you feeling?”  The answer to that is that they are feeling everything and nothing all at the same time.  There are too many conflicting emotions, thoughts screaming to be recognized, and grief weighing it all down.  I can’t remember how many times that question made me want to sit down and cry.

What they do need to hear:

“I love you.”

“I’m here.”

“It’s going to be okay.”

“I’ll  do whatever I can to help.”

Be as sensitive as you can, and if you don’t know what to say, it’s okay to say, “I don’t know what to say, but I love you and I’m here”.  That will go a very long way.

This is going to be a long journey.  I’ve discovered what I call the “Six Week Rule of Disasters”, which is that everyone has about six weeks of time to give emotionally, financially, and of their own time to someone who has gone through a devastation.  It is normal for everyone to need to get back to their own lives.  Know that some of the hardest times is AFTER six weeks, when reality sets in, the tasks are done, a new home has been found, and your loved one finally has the cosmic space for reality to hit hard.  Continue to check in and love them.  They still need it!

Practical Ways to Help:

If you know clothing sizes, likes or dislikes, go get stuff for your loved one.  If you want, go through a room, especially the bathroom, and write down everything you see from toilet paper, to toothbrushes, to a bathmat.  If you have the cash, go get the stuff and bring it to your friend.  If you don’t have the money, divide the list up and spread the wealth among your other friends.

Offer to go shopping with your friend.  I will never forget going to Wal-Mart and calling my mom, in tears, because there were 50 options for toothpaste and I couldn’t wrap my brain around what I needed.  She helped me get toothpaste and then asked me if I still needed item after item after item as I walked with a cart from one end of the store to the other getting the things she mentioned.  When you need everything, looking at a store  containing everything can be very overwhelming.

Gift cards or cash are probably the most helpful thing.  Your loved one will have needs that they can’t forsee right now.  It is one of the most overwhelming things in life to have to replace every single thing you have ever used or needed.  Gift cards can be used anytime and the generic visa cards can be used anywhere.

Not everyone who wants to help is close by, so get a tech-savvy friend to set up a website for information on what is needed and how best to get supplies and cash to your loved one. Include a place for personal messages.  There are long, dark nights ahead and those notes of encouragement and love will go a long way in helping.

Your loved one is going to be wary of taking so much stuff from people.  It gets overwhelming and there is a certain amount of American guilt at accepting charity built into us.  Be sensitive to this.  Continue to offer love as you bring them stuff and send them money.  It takes a very little amount of reassurance to overwhelm whatever they are feeling about not wanting to take so much “charity”.

Ask their friends and family to send pictures.  Copy entire photo albums or find duplicates of old pictures.  Pictures are the hardest thing to have lost and it will mean the world to have those memories back.

Love, love, love them.  Don’t stop!

By way of final encouragement, the last nine years has seen plenty of grief, but also a great deal of joy as we’ve rebuilt our lives.  We moved to Colorado and then back to California and we have loved both of those places intensely.   We have a beautiful and hilarious son, another dog to keep our older one company, and we’ve grown and flourished in the aftermath of the fire.

The memories of our loss will never be gone, but they have subsided to a quiet and peaceful place.

You will make it through this.  I promise!

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The Mask of Epilepsy

I don’t like writing stories that don’t have an ending.  I hate it when I can’t be funny about something and it really drives me crazy when I can’t find the point in all of the things that need to be said.

The story of what Jacob is going through right now is intensely complex, is so hard to put into words, but needs to be told, even if I can’t finish it off with wrapping paper and a bow. Jacob is still having seizures, he deals with headaches, angry outbursts, hyperactivity, inability to focus, and struggles with social situations.  He has gotten to know the principal of the school really well and there have been many times that I have gone to my room and cried after a homework session because I didn’t know how to help Jacob get through his homework without one of us being angry at the other.  All of this is happening in the body of a 42 pound, six year old boy!

Back in November, all the professionals in our lives, teachers and doctors alike, collectively threw up their hands and said that they didn’t know what to do for Jacob anymore.  It was a very bad time for me.  I struggled through some pretty serious frustration, anger, tears, and this desperate need to do something for my son.

In January, Jacob was assessed by a team of psychologists and the story of that is here:        E is for Epilepsy: The Big Update.  They poked and prodded around in his mind and brain until they got some answers about what Jacob is struggling with right now.  We met with them in February and they gave us the rundown on what they saw.  I planned to wait to write that story until the final report came.  However, in the comedy of errors that is our life, the head of the team went on early maternity leave and she refuses to let any report go out without her signature, so here we are in April with no report.

The psychologists believe that Jacob has more than one neurological problem, of which epilepsy is one.  He is perfectly and adorably normal in many areas, but there are pieces of other learning disabilities and syndromes that he manifests, but not really enough of one of them to give a diagnosis.  The bottom line is that because epilepsy is the only diagnosis they don’t know what to do for him.

At the same time, his teacher and aide came to the same conclusion.  The third semester of school was so hard that I almost pulled him out of school.  A lot of the things that I know he needed couldn’t be implemented because the psychologists report wasn’t finished and therefore, the school didn’t have to change anything based on my word alone.

We did get a referral from the psychologists to go to a regional center who accepts children with epilepsy to see if we could qualify for a myriad of services including counseling, advocacy for school, training for me in handling a child with epilepsy, and many other things.  Hope for all of us seemed like it was finally becoming tangible.

Jacob and I met with the intake counselor at the regional center yesterday.  The meeting was one of the best I have ever had, and I’ve had dozens of these so far.  The counselor was kind, thoughtful, insightful, and understanding.  However, we probably don’t qualify because Jacob’s seizures aren’t frequent enough or severe enough to cause a serious impediment in his life.

So, the bottom line is, we really don’t know how to help Jacob.   The basic problem is that we aren’t sure that the problems he is having is a result of seizures/unusual activity in his brain or whether it is because he’s exhausted and cranky from the two medications he is on or if it is something else entirely.  We had to add a second medication because it seemed like the first wasn’t working as well as it should and Jacob started having a new kind of seizure.  Two medications together can create different side effects and it seems like Jacob has a lot of them.

There is no easy answer right now.

Even though this all seems overwhelming (it is) and frustrating (you betcha) there is a light at the end of the tunnel.  If the tunnel were 800 miles long.

A few weeks ago, Jacob’s neurologist, who I adore, got really upset with all of this and decided that she won’t rest until she unravels our little guy’s problems.  We are realizing that epilepsy and the medication is confusing the entire situation.  We don’t know how many seizures Jacob is having, how many spikes his brain has in a day, and if the medication he is on right now is doing what it needs to do.

So, in July, we are going to get a handle on all of that by checking Jacob into the hospital for three days and doing a continuous EEG, which will monitor his brain activity for 72 hours straight.  At the end of that time, we will know for sure how many seizures he is having and be able to adjust medications accordingly.  Once we lift the epilepsy mask, our hope is that we can figure out what else is going on with Jacob.

Every professional in our life, and me, agree that Jacob probably has ADHD as well as epilepsy.  So, if we can stop one of the epilepsy meds, the second of which we added because he started having a new kind of seizure, we can start him on some ADHD medication and stop his little brain from causing him so many problems.

Like I said at the beginning of this, there is no neat wrap up or tidy ending to this story.  It’s a marathon on top of another marathon, after which we will run yet another marathon.

But, there is hope.  There is always hope.  At the same time, there is reality.  The problem with hoping for better is that it often obscures today’s reality.  It makes me focus on how hard things are and how I want them to be different.  That isn’t necessarily bad, but I have to figure out how to hope for the future and act for the present.  I’ve started asking myself, “What can I do, right now, to help us do better?”  Sometimes, the answer to that question is that we keep plowing through homework.  Other times, we chuck it all and play basketball for a while until Jacob’s brain stops hurting him.

So, that’s it.  This is where we are are and what is coming up for us.

More to come!

 

 

Posted in Adventures in Medicine, E is for Epilepsy | Tagged , , , | Leave a comment

Special Needs Mama

The last few weeks have had me mulling over the life of the mother of a special needs child, especially the mother of a child with epilepsy.  When Jacob had his grand mal seizure 18 months ago, I remember praying that it would be “just” epilepsy, not a brain tumor or something else really scary.

I’m still glad it wasn’t a tumor, but I had no idea what I was talking about when I was hoping for epilepsy.  Even though the road over the last year and a half has been harder than I could imagine, I have learned some pretty incredible lessons.

I have learned that it is possible to go from zero to panic in less than two seconds when Jacob has a seizure.

I had to laugh when I went to the medicine cupboard and realized that I could find the diastat (medication for if Jake has a really bad seizure) faster than I could find neosporin.

I have learned to care less and less about the way people think about my parenting skills.   For instance:

  •  When I say, “Is your brain bothering you right now?”
  • When I wave my hand in his face and he yells at me, “Mom!  I’m not having a seizure!”
  • The time I had to sprint like a marathon runner down the hall of the church when I got called to Jake’s classroom and I thought it was because he was having a seizure.  (He was just being an a-hole, by the way.)
  • When I worry more than other parents.
  • When I have to give an explanation of Jacob to everyone who cares for him and have to remind them, many times, that I am not just a helicopter parent, that they really do need to shut it and listen to what I have to say.
  • When I get irritated with people when they say, “You worry too much.”   Seriously, the fact that he goes to school at ALL means that I don’t worry too much.
  • I let him dress up as just about anything, anytime, anywhere because he wants to.  And, I happily say, “nope” to the skeptical question of “Is he going to a costume party?”.
  • When I have to decline offers of out of town morning trips because I need to stay within a 20 minute radius of school.
  • When I play with him on the playground if he goes higher than five feet up.

 

Being the mother of a child with epilepsy means that every time his bed creaks in the middle of the night, I run to his room to be sure he is okay.

And, every morning, part of my clenched heart lets go when I hear his voice because it means that he is alive.  Not every family with an epileptic child can say that.

It means that when we were talking about Jacob’s birthday party and who he wanted to invite, at least half of the grown ups he talked about were part of our medical team.  Even if they can’t come, I will absolutely invite them, because they deserve to know that they have done a good enough job that a six year old boy wants them at his party.

It means that I make endless phone calls, have filled out more paperwork on Jake than I did when we bought our house, I have to fight harder and for longer than  parent of a regular kid, just to get him the basic care that he needs.

It means that because Jacob doesn’t have the most common type of seizure, the one that everyone knows, some people think that I am making it all up.

It means that every month, I have to hold Jacob down while someone takes blood to be sure that his internal organs aren’t compromised.  Man, there is no relief like the relief I feel when all his tests come back normal.

It means that every three or four months, I have to keep him up almost all night, drive an hour to Sacramento, hold on to him while they glue electrodes all over his head for an EEG, and then pray that I won’t fall asleep on the way home.

Yes.  There are hard and ugly things.  But, there are some great and wonderful things as well.

Over the last 18 months, I have found out how much I can endure with grace and strength.  I also know exactly where my tipping point is and when I need to go away and not come back until I can be nice.

I care less about the little stuff.  You want to wear a costume to Target?  Sure!  You want to track mud in the house?  Whatever.  You want to watch The Incredibles for the 20th time?  Let’s do it.  You want to fart in my car?  Okay, just as long as you roll down the window.  You want me to put your hair in ponytails before we take the dogs for a walk?  Let me get the rubberbands.  You peed on the wall in the middle of the night?  I’ve got wipes for that.  You want me to go home so you can walk into school all by yourself?  That’s fi….oh, no.  That’s not fine.  But, I’ll do it anyway…sniff sniff.  C’mon, Mom.  You can do this!

I’m strong enough to know that I can be Wonder Mom whenever I need to be.

I CAN hold down my kid when he cries that he doesn’t want to do bloodwork.

I can wait to cry until I am by myself.

I celebrate funny things like Jake not getting mad during homework time and that he had a “yellow day” at school (the second best behavior code) and that he got dressed in five minutes instead of hanging out in his underwear for ten minutes and then yelling at me that he IS getting dressed.

I’ve learned that letting Jake dress up as a doctor makes everyone smile, especially the parents at the hospital who are not having good days.  Seriously, look at this guy:

dr4

 

I’ve learned that superheroes come in tiny bodies.

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And that as hard as EEGs are, my little guy always  gives me a smile.

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I’ve learned that there are things that can make me laugh really hard, like this shirt that I want:

funnyshirt

 

And things that can inspire me to be a better person and a better mom:

trimming her sails

“She stood in the storms, and when the wind did not blow her way, she adjusted her sails.”

 

No, I had no idea what I was asking for when I prayed that Jacob would “just” have epilepsy.  Am I sorry he has it?  Yes.  Do I pray for it to go away?  Absolutely.  Am I thankful for the lessons we have chosen to learn in the midst of fear and pain?  Of course.  Am I utterly grateful for the people who love and support us?  More than you will ever know.  Does that mean that you can fart in my car?  Only if you roll down the window first!

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E is for Epilepsy: Adjusting Her Sails

At this moment, I am sitting in a messy house that needs to be cleaned up a little, laundry that needs to be done, a grocery list should be made, and my family probably would benefit from having something besides raw chicken for dinner.  Unless we really miss going to the emergency room.

But, I am having one of those “must write” moments and my brain will not let me do anything but get my thoughts out into the world.

Tomorrow, Greg and I go to Sacramento Sutter Children’s to get the result of the Neurological Pediatric Psychological profile that Jake participated in a few weeks ago.  That story is here:  E is for Epilepsy: The Big Update

I have gotten really good at waiting for results, tests, etc.  If you want to read a little more about that process, you can read this:  Shut Up and Wait 

I’m not really anxious.  I’m not excited.  Anxious means that I’m waiting for biopsy results.  Excited means that I just found out that I get to go on the world’s largest zipline.  Or I finally got my pony.  I’m somewhere between those two emotions.  Anxieted…?  Yup, that’s how I’m feeling.

Tomorrow is one of those days where our future will change and a lot of our life will change with it.  I’ve had a lot of those days.  Life changed in a day at 25 years old with the words “breast cancer”.  It changed again a few years later when I wrote in my journal, “It’s gone.  Everything is gone.” after we saw the remains of our house when a wildfire took it all.

When I was 33, life changed in a day, again, but for the best possible reason and it was because this little face entered the world:

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In and around those days, we have had all the typical life changing days of jobs, moves, schools, surgeries, birthdays and anniversaries that the rest of the world gets to have.

With every change, every life altering bit of news, I have to find the “new normal” of life.  I’ve gotten really good at being adaptable and changeable and usually only whine or cry a little in the discomfort of my soul having to break in a new pair of shoes.

My mom recently sent me, and a few other wonderful women in our family, this bracelet:

trimming her sails

If you can’t read it, it says, “She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”

It is the perfect sentiment for my life.  I love it and I have to hold back tears every time I see it.

Tomorrow, I will once again stand in the wind and see which way the wind blows.

We could find out that Jake has ADD/ADHD.  We could find out that he needs counseling and more techniques for helping him cope.  We could need to see a therapist pretty regularly.  We could find out that they really don’t know what is going on in his little brain.  Or, we could find out that it is much more serious and we could see a future for Jake that we really don’t like.

Whichever way the wind blows, with God’s grace, I will adjust my sails and head towards our New Normal.

The hymn It Is Well has become one of my life anthems.  It talks about the fact that life includes peace days, windtorn nights, giant waves, and things we think we cannot face.  The challenge of the song, is to say, “It is well with my soul”.  I recently found a new version of the song and since there is nothing like the perfect song to round out my thoughts, I will leave you with this song.  This is where my heart is and what I want my life to be more than anything else.

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E is for Epilepsy: The Big Update

I realized recently that I have been doing a bad job of updating people on recent events with Jake.  I am going to let myself off the hook since the last few months have been completely bonkers with concerts, finals, writing a paper for the first time in 15 years (I got an A!), Christmas, traveling, and trying to survive all of that with a few brain cells left intact.

Last week, Jacob went to visit the Pediatric NeuroPsychology department of Sutter Children’s Center in Sacramento.   People who know us well and follow me on Facebook or Instagram have seen some of our journey and have been asking questions.  Instead of trying to write it all out in essay form, I am going to do a pretend Q and A with myself and hopefully, some of the questions you would ask, or have asked me, will be answered.

Why is Jacob being tested by a psychologist?

Good question.  You are so smart!  We have been seeing some behaviors that add up to there being a global neurolgoical problem with Jacob.  He has a hard time concentrating, a difficult time starting tasks, his attention is short, his memory recall is not very good, and he has  a very hard time verbalizing his ideas in a way that is understandable.  He also has a hard time controlling himself and when he gets frustrated, will frequently use his body to express his feelings and anger.

What is the psychologist looking for?

One of the main jobs that a psychologist has is to go in with no preconceived notions.  They basically poke around inside someone’s mind, collect data, and then look at the data to see if it all adds up to something global.  They are very thorough.  I had to fill out twelve different questionnaires and his teacher filled out six.  Jacob was referred to the psychologist by the neurologist who oversees his epilepsy for possible ADHD. This doesn’t mean that Jacob has ADHD, but to get Jacob referred, the neurologist had to put something down on the piece of paper that gets a patient approved for testing.

Is the epilepsy related to the problems Jacob is having?

There is no easy answer for that question.  Once a child has epilepsy, which is a disorder in the neurological system, they are far more likely to develop other neurological problems.  Jacob isn’t having problems because he has epilepsy.  It is more a case of Jacob probably has an overarching neurological problem of which epilepsy is a part.  Or, they may be completely unrelated.  The tough thing about all of this is that neurological disorders don’t show up like a broken bone on an x-ray.  There is highly, highly educated guesswork and we have do the best with what we have.

Is Jacob’s epilepsy cured?

Nope.  He still has epilepsy.  Just because a child is seizure free, which Jacob sadly is not, it doesn’t mean that they no longer have epilepsy.  Jacob has been on medication for a little over a year and continues to have seizures and abnormal EEGs.  An EEG is the test where they put electrodes all over Jacob’s head and test his brain activity.

But, I have never seen Jacob have a seizure!

Actually, you may have seen one and not known what you were looking at.  Jacob has only had one grand mal seizure.  Grand mal seizures are the ones that everyone knows and the kind that people have in the movies.  They fall down and shake and lose consciousness.  There are many other types of seizures that don’t look like that at all.  Jacob’s kind is absence seizures.  They usually look like the person is spacing out.   They will stop moving, their eyes kind of glaze over, usually they stop blinking, and sometimes, will do a repetitive motion, such as rubbing their fingers together.  Jacob still has those maybe once every few weeks.  They increase when his stress level increases, so he has more at school or when there is a lot of stimulation.  For example, I saw him have on in the lunchroom where it was very noisy and a lot was going on.

Wow!  Are there things he can’t do because of his epilepsy?

Kind of.  I am forced to be a helicopter parent.  I need to watch him all the stinking time when he is doing an activity that could be dangerous if he had a seizure.  I have to play with him at the park.  Not just near him, but close enough to catch him if he fell.  He can’t take a bath by himself.  He still doesn’t know how swim and many swimming teachers don’t have good enough insurance to be able to take him on.  If we are in a pool, I have to have one hand on him all the time.  Obviously!  If he has a fever, I have to manage it very carefully.  If his fever gets higher than 101, it could spark more seizures, so I need to take his temperature every two hours, around the clock, and keep that Tylenol flowing.  Other than that, which isn’t as bad as it sounds, Jacob can function normally.  There are some bridges we will cross later in life, like living on his own and driving, but there is an 80% chance he will outgrow this and will live a normal life.

I had no idea.

Yeah.  Sorry.  This kind of stinks.

So…  Oh, yeah!  How did the testing go?

Jake was an absolute champ.  The day of was pretty tough.  My friend, Robbi, drove us and apparently, when she and I get in a car together, strange things happen.  The last time she drove us to an appointment, I threw up 8 times from a migraine.  It was the greatest.  This time, it was raining cats and dogs and monkeys and we were almost 40 minutes late to the appointment.   Once they got started, he did great.

Where you with him the whole time?

No.  I couldn’t be in the same room with him.  However, Robbi and I could stay in a room next to his and we had a one way window and a speaker, so we could hear and see everything that was going on.  This is what we saw for most of the morning:

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How long was the testing?

He needs to complete a total of about 8 hours, which no human being was going to be able to get through in one day.  I had to do an intake appointment and it was four hours.  I had to take a nap when I got home.  He did four hours and will go back on January 29th for the rest of it.

How did he do?

He did really, really well.  He had bad moments and emotional meltdowns, but they needed to see those.  Part of what they are looking for is coping mechanisms and how long it takes him to come back from being upset. He took Clifford with him and was able to use him for comfort and to make the test a little more fun.  After a while, Clifford had to come with me so that the psychologist could see how he did on his own.  I let Clifford watch the test.

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After the testing was over, he was wiped out.  We went out to lunch and for the first time in 4 years, he fell asleep on my lap.  Even though I wasn’t happy with why he was so tired, I loved being able to cuddle him for more than 2.5 seconds, which is our average of how long Jake holds still long enough for a hug.

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When do you find out the results?

We go back on February 12th to find out what they recommend.  It could be anything from ADD/ADHD to more ambiguous findings which could result in trying to find ways for Jacob to cope with what is happening inside his brain.

How are you doing with all of this?  

Uuuuuuummmm…  “I don’t know” is about as honest an answer as I can give right now.  This will turn into a longer blog post at some point, but the short answer is that I am doing okay.  It’s hard to watch Jake struggle.  It’s hard to know that I am at the limit of what I can do for him.  I want to fix it and I can’t.  I struggle with (totally irrational) guilt and wonder what I could have done better.  (There is nothing I could have done better.)  I have my bad moments where I cry and am scared for  his future.  But, then I remember that God has used all the nasty stuff I’ve been through to refine me and make me better and I have hope that He will do the same for Jacob.

What is next for you guys?

We hang in there.  We keep going and loving life and having fun and going to the park and the doctor and watching Star Wars and Jake dresses up as Darth Vader and we try to be as normal as we possibly can, which in this family is not all that normal.  We pray and we lean on God and each other and we make it through whatever is coming.  Pretty much, we keep calm and carry on.

What do you need right now?

Prayers, wine, chocolate, and books.  There is very little in life that can’t be fixed by that list.

Those are as many questions as I can remember being asked.  Please feel free to send more my way.  I am open to talking about it and happy to answer questions.  Chances are everyone knows someone with epilepsy.  I have found that epilepsy is very misunderstood and if I can help demystify it, I will be a very happy girl.

This may sound like a really hard thing to go through right now and it is, but it is part of who we are.  And I really like who we are right now.

thisisus

 

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