Thief

When your child is diagnosed with epilepsy, the doctors give you a speech.  It usually involves being told that:

1. Your child has epilepsy.
2. We're going to put your child on medication.
3. Most likely, everything will be fine.

Number 3 is a lie.  Rarely is everything "fine."  Most of the time the first medication isn't effective in controlling the seizures.  When you finally find a medication (or mixture of medications) that work, you face the side effects of them.  You start to notice that your child can't do the math homework that just last week she was capable of doing.  Your normally meek and mild-mannered little girl suddenly has fits of temper so violent, you fear for her (and your) safety.  One day walking outside in sweltering heat, you notice your child hasn't so much as broken out in a sweat and is pink with heat.  Upon consulting the medication's list of side effects, you realize your little girl doesn't sweat anymore. 

All of these things you're willing to accept because your child has reached full seizure control, and that is more important than tantrums, cognitive slowing, or lack of perspiring.  After awhile you work around the side effects.

• Cognitive slowing?  She's allowed more time to work out math problems.  You even have her school put it in her IEP.
• Violent fits of temper? Vitamin B-6 (50 mgs twice a day) will offset most of the mood swings. 
• No sweating?  No problem!! You start to carry around a battery-powered fan that sprays water.  Bottled water takes up permanent residence in your purse, and you begin to carry a damp rag when you venture outdoors.

It becomes your normal.  You don't even question it after awhile.  It just is.

Then something happens that makes you realize how much seizure disorders take from your child and your family.  It steals it away from you, and you don't even realize that it's being taken.  From the first seizure on, it steals bits away from your child...memories, parts of her personality, her ability to take care of herself.  The ultimate possibility (and of course, fear) is that it's going to take a life.

Doctors dont explain to you about Sudden Unexpected Death in EPilepsy (SUDEP).  I'm sure that if I went to my daughter's doctor, and asked him outright about it, he'd have a conversation with me about it.  Fortunately, I don't need to.  I know all about it.  I've researched it.  Epilepsy can steal a life at any point.  A person can have controlled seizures for years, and out of the blue have a seizure that ends up killing him/her.  It is my greatest fear as a mother of a child with epilepsy.

Epilepsy steals your peace of mind, your child's health, your child's peace of mind...it is a thief that sneaks up on you, and strikes when you least expect it. 

I belong to a network of mothers that have children with disabilities.  One of the mothers in that network lost her daughter to epilepsy on Saturday.  As much as you tell yourself that her body isn't in pain anymore, and she's in a much better place, as a mother, you can't help but want your daughter with you.  No mother should ever have to face the death of her child.  It's not something you come back from once it has happened.  My thoughts and prayers are with her and her family.

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.