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.

My Motto

You can tell that I'm a history teacher.  This poster was created by the British government in 1939 as a way to boost morale during World War II.  Every time I see it, I think about how appropriate it is for just about everything, so it's become my motto.  You can get through just about anything life throws you just by doing this. 

It's probably cliche, but it's true.  Just sayin'.

Birthday Parties

Liz's birthday parties were a huge success.  Three little girls from her class and two friends of the family came to the first party.  It lasted just over an hour and a half, which by the way is just enough time to get everything done.  Liz handled it like a trooper, and except for a fifteen minute period where she went non-verbal, she did very well.  They played in her room, and I discovered bunk beds are a huge source of excitement to little girls.  Every time I went in there, three of them were on the top bunk.  It was cute.

They made tiaras, which was awesome.  I totally am patting myself on the back for thinking of that.  Target is the source of all cool birthday party things.  We were also going to do manicures, but it didn't work out.  After that, we did the pinata, and had pizza and cake.

Every single little girl got her Zoobles.  Zoobles are Liz's new favorite toy.  She has been lobbying for them every time we enter a store that sells toys.  Yesterday, her dreams were fulfilled.  She was so excited.

The second party was meant for the adults in Lizzie's life that wanted to celebrate with her.  About ten people came, and hung around for about an hour and a half.  That was just enough time, and you could tell Liz really felt comfortable.  I'm so thrilled that so many people love her so much that they wanted to spend her special day with her. :-) 

Next year, only one party.  I AM SO EXHAUSTED TODAY!!!!!!  Liz is still happy, though, which is really all the matters. 

Yay for a great birthday party experience!!!