Silly the Worry Worm

Today Liz had her second behavior therapy appointment, and I brought up the fact that she tends to have severe separation anxiety when it comes to me.  I'm going out of town this weekend for a student council function, and I'm going to be gone for two nights and three days.  She has been outright begging me to not leave her, and crying that she wants to go with me.  I've tried explaining to her that she can't go, why she can't go, and that The Husband will be there to take care of her, but she is definitely not listening. 

The doctor asked her why she didn't want me leaving her, and she told her that she was afraid of being alone.  The doctor did manage to get it out of her that she wouldn't really be alone because The Husband would be there to take care of her.

To help Liz manage her anxiety, the doctor had her draw a Worry Worm.  Any time Liz starts to feel anxiety or worry about me not being with her, she is to tell the Worry Worm that she doesn't need to worry because her mommy loves her and she is always taken care of.

Liz's Worry Worm is bright pink with purple spots.  He's wearing a brown hat, and he is flying a blue kite.  She made sure to draw a tree next to him with a door because that's where the Worry Worm works making buttons.  We ended up naming him Silly the Worry Worm because Liz realized that sometimes it is silly to worry.

Tonight we have to find a place for Silly the Worry Worm to hang so that Liz can have her regular conversations with him, to let him know that she isn't going to worry anymore.

Knut the Polar Bear Dies of Epilepsy

Knut the Polar Bear died of epilepsy.  What a sad story.

Pumpkin the Epileptic Chihuahua

Ladies and Gentlemen, Pumpkin the Epileptic Chihuahua

Telling Liz About Her Seizures

After Liz's last seizure, I struggled with how best to tell her about what was happening to her.  The last one hit just over a month ago. She'd been at school, and she was with her speech therapist when she quite suddenly fell out of her chair and began to have a seizure.  It was relatively quick, and it was finished before the nurse even had a chance to make it down there.  The Husband picked her up from school shortly afterwards. 

That night, Liz and I were talking about what had happened that day, and she was quite insistent that she had only passed out.  I explained to her as best as I could what happened, and I even showed her a little video.  I told her that what she has is called epilepsy, and that's why she takes so many medications in the morning and at night.  I thought she had gotten it until a few days later when we had to have the conversation all over again.

Fast forward to spring break two weeks ago.  I heard the most awful racket coming from behind the chair I was sitting in, and I got up to see what it could be.  It was one of our chihuahuas, and she was having a seizure.  She's actually had them for years, and they only really hit her about once or twice a year.  However, when they hit, it's a 20-30 minute ordeal.  Anyway, I quickly grabbed her, and held her carefully.  Her eyes were completely dialated, and if a dog could cry, then she would have been...tears were just pouring from her eyes.  The entire time this is happening, Liz is sitting on the couch, watching.  When our dog, Pumpkin, stopped seizing, she curled up in a ball on a blanket, and slept for hours.  Then, she was fine. 

Later, Liz comes to me, and she says, "Momma...when Pumpkin was shaking...is that what I have?  Is that epilepsy?" 

I said, "Yes, baby, that is exactly what you have."

She said, "OH!!  Well, that's not bad, especially since I have you to take care of me like you did her.  You did a good job, Mom!!"

And now, Liz gets it.  She understands her diagnosis, and why she takes her pills in the mornings and at night.  Sometimes she says, "Momma!  I didn't have epilepsy today!!  NO seizures!!"  It's so stinkin' cute when she says it.

So, thank you, Pumpkin the Epileptic Chihuahua!! Because of your medical condition, Liz now understands her diagnosis.

A Book Recommendation

Over Spring Break, I picked up a book called "Shut Up About Your Perfect Kid."  I'm not really sure why I picked it up, but for some reason, it called to me.  I found that when I was reading it, I couldn't put it down, and I was literally laughing out loud.  The authors are Gina Gallagher and Patricia Konjoian, and they're sisters, both with daughters that have special needs.  They simply wrote about their experiences with diagnosing their children, adapting to their new lifestyles, finding the right treatments for their kids, finding the right school environment for their kids, etc.  I don't think I have ever laughed so much while reading about a subject matter that was so sad.  In the end, it ended up being hopeful and supportive, and it is everything a book about raising a child with special needs should be.

I believe every parent should read this book.  Not only will it be helpful in accepting the diagnosis your child is facing, but it could also help parents to accept when their child isn't exactly how they expected they would be.  Embrace the imperfection because there is beauty in it.  Every child is a miracle, and focusing on what could have been will not help you or your child live your life. 

I've emailed the authors of the book, and I've joined their facebook group.  I seriously suggest you do the same.  It's a wonderful support group, filled with humor and unconditional love. 

Laughter

Today we had to get Liz's 100 mg dosage of carbatrol refilled.  The Husband called it in, and went to go pick it up.  We spend so much time getting meds refilled that we have become friendly with the pharmacy staff.  Today, Ben the Pharmacy Tech talked to The Husband about The Husband's taste in music, specifically his love for Nine Inch Nails.  The Husband called me, and the following phone conversation ensued.

Me: Hello?

The Husband: Hey, I got her meds, and Ben the Pharmacy Tech says, "HI!"

Me: Hi, Ben the Pharmacy Tech.

The Husband: Yeah, he knew about my love for Nine Inch Nails.  At first it confused me, but then Ben said, "Yeah, I was looking forward to her coming in because we always have the best conversations, but it's cool that you're here.  So, you like Nine Inch Nails and Trent Reznor?"

Me: Laughing hysterically.

Our "normal" is making friends with the pharmacy staff, and them knowing details about our likes and dislikes as far as musical tastes.  Because of the constant check of "Can you varify her birthday for me?", they're more familiar with Liz's birthday than our friends and family (close friends and family excluded!!).  Once upon a time not that long ago, I would have found that depressing.  Because when you think about it, it kind of is, but now I find it funny.  And hey, there's always room for more friends in your life, right?  And if their interest puts a smile on my face, even for just a little while, then I kind of think it's awesome.  Over the last two and a half years, we've gone from being pharmacy staff and customer to friendly acquaintances.  That kind of makes me happy. Plus, the Wal-Mart Pharmacy should be thrilled that they have such an awesome, welcoming staff, especially with Ben the Pharmacy Tech.

Behavior Therapy

I took my Spring Break, and just didn't do anything but enjoy the time off.  That meant absolutely no blog posts.  :)

Last week, Liz had her first behavior therapy appointment.  Going in to it, Liz was very nervous.  She's very suspicious of doctors as a general rule.  On Wednesday when I told her that she would be going to the doctor the next day, I had to make sure it was very clear to her that there would be no shots, IVs, or any other medical tests.  I promised her that doctor would only talk to her and ask her questions, and I would be with her every single step of the way.

When we got there, she was very nervous, clinging to me and hiding her face.  She noticed that the doctor had a lot of toys, and she was impressed.  She still wouldn't leave my side, though. 

The doctor asked all the usual questions about her development, what the issues were, etc.  I explained about Liz's rages, and she offered up some advice on how to handle them.  All in all, we were there just over an hour, and I left feeling optimistic about what we would accomplish in future appointments.  Better than that, Liz liked the doctor, and she is excited about her next appointment.

I had the opportunity to use the suggestions for Liz's rages on Saturday, and while the rage lasted just as long as the previous ones, it wasn't as violent.  The next day was the best day she's had in a LONG time.  It was so nice.

Rages

My daughter has always, always had sensory overload issues.  In the past, it's only really manifested about once or twice a month, and usually it was in correlation with her being off of ADHD meds.  About three years ago, her episodes were especially violent, so we had a video EEG done.  She had a rage while being monitored, and all that was shown on the EEG was abnormal brain activity.  I had a moment where I kind of thought to myself, "No kidding...jeez...wish I had thought of that!!" 

After she started her ADHD meds, her rages tapered off, and like I said, only really manifested when she was off of her meds.  Since Christmas, they're becoming more frequent again, and now they're coming once, sometimes two to three times a day.  They're violent.  Last weekend, while she was having one, she kicked me in the head, and started hitting and scratching me.  Yesterday, she had one and bit me.  This morning, while in the middle of one, she started slamming her head in to the wall over and over again.

I've been documenting all of this, and I called her neurologist.  He wants her to start behavior therapy.  I think this is a wonderful, amazing, appropriate idea.  The best part?  I didn't have to fight with the insurance company to make it happen!! (Watch...I'll say that, and then the insurance company will suddenly become an issue)  Her first appointment is next week during our spring break.  I hold so much hope that this will be the help we need.  I know the answer won't come immediately, but I'm so hopeful that over time, it will be the answer to our prayers.

Another Interesting Article

I stumble upon the most wonderful articles because I follow the Epilepsy Foundation on Twitter.  I came across this little gem yesterday.  It's a little scientific, but I'm the least science-minded person I know, and I followed it relatively well.  Enjoy!!

Brain Molecule Found to Protect Against Seizures

Amazing article in regards to epilepsy...

I read this, and I had an "A-HA!!!!" moment.  Gosh...if this is the direction that epilepsy research is taking...so many amazing things could come from it.

Epilepsy as a Spectrum Disorder

How very true...

"Life is not what it's supposed to be.  It's what it is.  The way you cope with it is what makes the difference."

I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!"  I know I'm guilty of it.  How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing?  Too often...I can't help it sometimes.  I just want her to be healthy.

It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures.  I'm just not that powerful.  What I can change is how I handle it, and what I do about it.  For me, I go into what I lovingly call, "Crisis Mode."  I handle the emergency as best as I can, and then when all is said and done, I cry.  Then we move on.

One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy.  If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won.  I've slayed the dragon.

Epilepsy isn't going to ruin our lives.  It has tried over and over again.  It has tried to take away my daughter, but I refuse to give her up.  It can't have her.  She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me.  It can't take away her quality of life.  It can't take away her smiles and her laugh.  It can't take away her love.  And every single one of those things is a victory.  Every time she smiles...every time she says, "I love you, mama"...it's a win.  We're winning our battle every single day.

Maybe our lives weren't supposed to be this way...maybe they were.  I'm not the one to make that call.  But you know what?  We're handling this, and we are absolutely making a difference.