The Fear Of the Night

I hate the night and the peace it tries to steal away,
I sleep so much better after the break of day.

I do not like the fear I feel in my racing heart,
Every time I see signs of a seizure start.

I just want them to go away and never come back,
Never to be remembered or get him offtrack.

These seizures you see they take him away,
They nibble at my little boy day by day.

You may not see it through his big blue eyes,
You might have missed it when part of him died.

Maybe you don’t know the terror I feel,
Watching him and praying for God to be near.

Maybe you don’t know the heartache,
Of just simply praying he will wake. 

Maybe you do know the love for a child,
How epilepsy can make your mind run wild.

Maybe you have seen a little of your blessing slip away,
That night in your memory the seizure monster did stay.

If you know the horror of watching your blessing in a seizure,
You know all too well there is never a moment of true leisure.

It stays in your mind hiding behind your smile,
The fear that the Epilepsy will become motile.

For now prayer is what holds it together,
Appreciating each day regardless of the weather.
For now we cherish each day and all of the light,
We pray reality doesn’t come to the fear of the night….
~Denise Marsh


Brett had his EEG…

Brett went this morning for his EEG… and now the wait begins. I cannot stand the wait. It is gut wrenching to know in my heart that things change so quickly. I have known, watched him seize and videoed many, many nights. Yes it will be different to hear the Dr. say… It’s always different when someone confirms your fears. What am I supposed to think? Will the diagnosis give reasons for the anger outburst, the irrational fears? Will it give answers for Brett wetting himself in day and night time? Will it give us hope or more devastation? Will it give me answers for Brynnon or questions for the other children? Why is this happening to us? Why does Epilepsy have to be happening in my little boys and have it ever touched our older children? Will it ever touch our littlest one. Is it genetic? Is it the same as Brynnon? Please Abba Father makes these answers come quickly…. I don’t think I can handle much more…. 

3 Appointments… One day…

3 Appointments one day…   🙂 

¸…¸¸.•*´¯`*•.¸¸…¸Abigail is 20 months and I agreed to one shot, her first ever vaccination/injection DTaP-Polio. She dismissed all of my concerns with her development as all of them “can be normal.” Had no idea that eating the coffee table, plastic toys ect. could be “normal.” Her weight is 22 pounds exactly. When I told her about her picky eating she said she is a milk kid… between the toddler formula, Ovaltine and other things she is eating she is a lot healthier than these fat pudgy babies that most docs compare all babies too. I was impressed with that statement… I have been to those doctors! 🙂¸…¸¸.•*´¯`*•.¸¸…¸

¸…¸¸.•*´¯`*•.¸¸…¸On to the next… Brett goes Tuesday for his EEG. She confirmed the videos “look like” seizures, especially given Brynnon’s situation. Referred him to a local Dr. for the wondering eye again. It’s been almost 2 years since we had it checked, so it’s time… Maybe this Dr. will do something to help it. Brett’s hearing and eyes are perfect! Hopefully his EEG will give answers to his night time seizures.¸…¸¸.•*´¯`*•.¸¸…¸

¸…¸¸.•*´¯`*•.¸¸…¸Then there’s Brynn… She suggested Brynn get more exercise, because he weighs 132 pounds. She said she hasn’t seen that kind of weight gain with Depakene, hmmm Neurologist said he has. I told her is is always active and spends a lot of time outside. He is probably the most active in the house for that matter. He is always doing something! She said he needs to be tested for genetic chromosomal disorders, Wow… There’s an idea… Duh… Really hope Children’s Hospital will go this way at the next visit and I have asked for it over and over again…. He will be seen there March 9th to decide which direction we can proceed in since he is still seizing. The Dr. wanted to give him time to adjust to new meds and balance out since he has had reduction in seizures during the day and has had lessoning of night time seizures. He probably had a grand mal last night I found him in post ictal state pool of drool, twitching eye lids, eyes rolled back… took about 2 minutes to get him to respond. He had a slight fever 99.5 today at Pediatricians office so I am wondering if he is getting sick. Hearing and eyes are perfect! Waiting for His Neurologist to call… Saw a short simple partial this morning, other than that he seems fine now….¸…¸¸.•*´¯`*•.¸¸…¸

Brynnon 1/13/12