You never really know how you are going to react to bad news.
I have been dealt some bad news in my life and I would like to say that by now I have it mastered.
I would like to say that in the doctors office I got on my knees and prayed.
But I didn’t.
I was so confused.
The doctor said, “Your daughter has epilepsy.”
I just sat there… sad, broken, and terrified.
In order for this to make any sense I need to back it up to last fall…
MaryGrace had about a dozen seizures over the course of a few days.
In hindsight… she may have even had a few in the months prior. (some seizures can be much less obvious that others)
I took her to the hospital and within a few days she was getting an EEG. Everything came back normal.
I thought to myself… Ahhh, good. Maybe it was just some fluke thing will never happen again.
Everything was going well until about a month ago when she had another one.
It was time for her follow up so I talked with the pediatric neurologist about the past episodes as well as the more recent one.
By the end of the appointment my daughter had a diagnosis, a label… a neurological disorder.
If you are like I was… you have probably heard of epilepsy but you are not quite sure exactly what it is… well, here ya go:
epilepsy: a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
Essentially MaryGrace goes stiff in a full starfish position and then shakes.
It is the most terrifying experience as a parent.
There is nothing you can do to stop it.
When it does finally stop she cries the most heart wrenching cry you have ever heard.
It really scares her.
So there we were sitting in the sterile office when the Doctor tells me that my daughter has epilepsy.
In my gut I knew it to be true… but I couldn’t seem to wrap my brain around it.
I still can’t, really.
A million questions were swirling around in my brain.
Some I was able to formulate in to words and others were written on my face.
How did this happen?
What does this mean?
How do we fix it?
The Doc explained that they don’t exactly know the hows and whys of this disorder. He also started giving me some reassuring statistics, like… 2 out of 3 kids grow out of it.
The question that must have been written on my face was answered when he looked into my teary eyes and said that it wasn’t my fault.
I still get bogged down by wondering if during my pregnancy there was something I did wrong? something I ate? or too much stress?
Sometimes I lay in bed at night and replay the pregnancy. I replay the crazy season while she was growing in my belly. Is there a reason for all this? I can’t help but to feel like it is my fault.
But… I am working on that part of all this.
The Doctor prescribed some meds for her. She has to be on them for at least 2 years. When she has gone 2 years without a seizure they will consider the epilepsy in remission and try taking her off the meds. That’s when we will find out if she is one of the 2 out of 3.
MaryGrace has been the happiest, silliest, and most smiley baby that I have ever been around. She is truly joy-filled. Unfortunately, the main side affect of the meds is agitation. So now she is a bit more grumpy, a little less smiley, and a lot harder to please.
But the consequence for not taking the meds is far scarier than a grumpy baby…
New research has found that seizures that go untreated/unmedicated are causing intellectual damage in many forms.
Therefore… we are going with the meds. I want my girl to be happy, healthy, and smart even if that means a rough couple of years.
We are going on 2 weeks now without seizures… only 102 more to go!
I am focusing on the next 2 years and praying for a healing.
I can’t weigh myself down with the questions of her future. I can’t get wrapped up in how this will affect things like school, sports, driving and having a “normal” life.
Not right now.
It’s going to be a long journey.
Can I ask you a favor?
Will you pray for my girl?
Will you pray for my family?
Will you pray that the seizures go away?
Will you pray that the meds don’t make her too crabby?
Will you pray that her brothers are patient with her?
Will you pray that all the kids get the adequate amount of attention despite the disorder?
Will you pray for Shane and I?
If you will… Thank you.
Seriously, thank you, from the bottom of my heart… I believe in the power of prayer and I know my God is bigger than any diagnosis.