No Words better than Wrong Words

Rose had seizures everywhere.  There was no secret to be kept.

The stares did not bother me, most of the time.

I knew that the observers were puzzled and concerned.

What I dreaded were the comments.

Have you tried…?  My uncle had seizures and he…  You should take her to…

These strangers did not know how long we had been struggling for a solution.

They were just trying to help, but…

When Rose was home-bound from school, we took her to a little restaurant with a train running around near the ceiling.

We knew she would like to watch it.

She sat wrapped in a towel to keep her from getting chilled.

She had bruises on her face from a previous seizure.

We sat down in a booth (always a booth) near a big table full of policemen eating lunch.

My child, bruised and pale, wrapped in a towel, not in school.

Were we going to be questioned?  Child abuse?  Neglect?

No need to worry.  Rose had a seizure.

I lay her down in the booth with my purse under her head.

We sat and waited for her to come to.

As a lady was leaving, she walked over to us.

I was prepared for a comment or question.

Instead, she just patted my shoulder and silently walked away.

Thank you wise woman.  All I needed was a love pat.

No words.

Seizure Mama

 

Generous versus Selfless

Take a hard look at how much you are doing for your child.

Are you modeling or enabling?

Doing too much for your child is a double-edged sword.

Either way, you are the one who will bleed.

If you are doing things for him/her that he/she should be doing for themselves, you are sending two messages. Both are bad.

First, you are telling your child, by your actions, that you do not believe that he/she is capable of doing this for themselves.

Do you really want to send this message? Do not hand them a handicap.

Second, you are showing the child that he/she is entitled to preferential treatment.  Maybe you are okay with this, but the rest of the world will not be catering to your needy, greedy baby.

Do not create a monster.

I am a former public school teacher. I have known many a little monster.

If you are doing too much. STOP.

It’s harder to stop a truck once it gets started rolling down the hill.

You will be run over.

Do not do this to you, your family and most of all, your child.

When you keep giving in, nobody wins.

Seizure Mama

 

Handle the Holiday Stress

Take breaks in a quiet place.

Go outside in the cool.  Do NOT stay in a hot kitchen.

Help your child avoid unfamiliar foods, especially if they are RED.

If you have trouble getting your baby to take breaks during the excitement,

go lie down with him/her in a quiet room.

Better yet, ask a favorite cousin to do that. This may be the start of a yearly bonding time.

Pack security items such as blanket and buddy toy.  Favorite books for a break in a corner.

DO NOT forget a dose of medicine in all the chaos.

Everyone drink plenty of water.

Stay safe in the fray.

Keep the main thing the main thing….That’s time with family, not the food.

SEIZUREMAMA

Put on Your Own Oxygen-mask First

When you get on an airplane.

The attendants tell you during the safety training

that if you are travelling with a child,

to put on your own oxygen-mask first.

It seems counter intuitive for any mother to take care of herself first.

But what good are you to your child, if you are unconscious?

Once you get on the sacrifice cycle with an ill child,

it’s hard to even consider your own needs

while struggling to take care of all of your child’s urgent demands.

While looking through old photos of myself, I saw a very unwell person.

The stress changed my face, my body, my personality and my spirit.

Over and over, I went without “oxygen.”

There was no time for me, no energy for me.

I would take care of myself when she was well.

Going without oxygen for twenty-four years took it’s toll.

I am still trying to get healthy.

It’s taken surgeries, drugs, therapy, a trainer, hobbies, books, religion, family and friends to bring me back this far.

It has been a long, hard fight to get back to me.

I know you are busy mama, but

PUT ON YOUR OWN OXYGEN-MASK once in a while.

Seizure Mama

Bad Advice From Good People

I have learned quite a bit as Seizure Mama.

One of my lessons that was learned hard and fast was

“If you know nothing, say nothing”.

I know concerned folks want to help, but bad advice is really hard to stomach when you are trying really hard to decide on the best treatment for your child for a complicated medical issue like seizures and epilepsy.

There were dozens of medications to study, and surgeries to consider.  It was overwhelming.

Someone’s “Two cents” was never appreciated.  There were several times when I was shocked into speechlessness.

I have two favorite examples, although I wouldn’t call them favorites at the time.

The first involved a woman known for talking about way too much, for way too long, way too often.

Before there was “Caller Id.” she called and I unfortunately answered the phone.

She wanted to say that she had heard that Rose’s medications were not working  and that we may want to try contacting some old woman on a farm in the northern part of the county that mixed up herbs and roots and maybe could cure her.

I am a firm believer in natural healing and herbs, but no stranger living out in the woods is going to fill my baby full of weeds and such.  We weren’t that desperate, yet.

The second shocker came in printed form. A well-meaning woman loaned me a book written by a woman doctor in another country. Her seizure remedy was to hook the patient up to a car battery and give him or her intermittent shocks to the system to kill the worm larvae that were clustering around the brain causing the seizures by cutting off the oxygen supply to the brain.  There was even a diagram with the article.

Now, there may be some incidences of worms causing seizures in Africa, but my baby did not have Ascaris lumbricoides.  I could just see me explaining that treatment method to the EMTs that show up at my house to take my electrically jacked-up baby to the hospital.

So next time some “Know It All” offers you some unsolicited advice,

imagine them hooked up to a car battery while chewing on some weeds and let it go.

Seizure Mama

 

 

 

 

Before She Leaves

I am trying REALLY hard to finish this book about my daughter’s

twenty-four year journey with epilepsy before she leaves

to go off to college.

I am SOOOOOO proud of her.

I must finish this book before she leaves,

because I fear that reliving her story while she is away from home will make me afraid.

We have been tethered together for these twenty-four years.

Her being gone will be a HUGE adjustment for Seizure Mama.

I need some encouragement.

Especially on days when I don’t want to send myself “back there” emotionally.

I know there is a mama out there

who needs my story to help her get through her own journey.

I am trying to finish for both of us.

Hang in there Mama!

I’m coming.

SEIZURE MAMA

Can I Stop Now?

Can I stop being afraid?

Can I stop trying to fix the unfixable?

Can I forgive myself for not knowing how to make this better?

Can I quit wondering if I brought on this curse?

Can I give up and quit trying to breathe?

This stupid struggle is too hard and too long.

PLEASE!!!!!! Can I stop now?