J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


Sunday, August 25, 2013


Are anniversaries always a good thing?

This school year marks our 5th year living with the beast.

Other anniversaries of that summer 5 years ago have come and gone,  No biggie that was our life.

This anniversary is different. I don't consciously think about it and what our eyes , and our precious baby girls eyes, have seen, but I cant seem to find minutes with dry eyes lately.

I HONESTLY don't recall , but a few hours  of our past five years in memories.  However, this summer has made it real. 

We used to be able to just love on Jake, explain" things" to Addison and even Coop and everything would be ok.

As I was thinking about our first hospital stay a couple weeks ago, I  received the most awful text ever.  I finally got a sense of what my closet friends and family were feeling when I texted or called about what was happening to Jake.  Brandy, cowriter on this site, was riding in an ambulance with her baby girl just 2 weeks ago.  A 2 hour ride, not knowing what would be said after those ambulance doors swung open,  a medical team rushed to your baby and pushed you aside, and  drs poked and prodded on that baby some more. 

Sweet E had not been acting right and the  mothers/grandmas gut kicked in.  Once again people/dr.s tell you know biggie. But, a mother knows.

 Emery and her parents lives have changed, on our 5 year anniversary

Just as I was praying to God to take me not ,in an ambulance, on a sweet summer day, Brandy did the same, I am sure

There lives are now forever changed as well. 

Type 1 , juvenile diabetes

Here Brandy was trying to take my pain away, not understanding how God could be so cruel  to a little kid, supporting Epilepsy, and she finds herself now in the same boat.

SO... This anniversary IS VERY different.  We hit our big 5 year anniversary and it is HARD.

5 years ago today I was in a hospital bed for the third week  with our boy.

2nd hospital , 3rd week,  weeks not seeing my baby girl, wondering what the hell is happening to our baby boy, weeks of useless medication, needeless needles, mri's, ct's, all telling us nothing about was is wrong with our first son.,

BLAH,BLAH,BLAH...thousands of seizures later.  His brain took the toll.  he used to be the "smartest" in his class, the most articulate, the most creative and definitely the most witty.  I see Coop and Jake at the same "stage" at 3, but Jake was actually even more "with it."( those of you who know Cooper know what I am talking about)  smart kids these boys are.  I stare at Coop everyday, just certain he is about to have a seizure, or just had one, as he is the same age as Jake, when "Jake happened.",

So, on the eve of another school year, our boy finally knows the hand he has been dealt. Tthe damage the beast has done on his brain.

He is dreading school. dreading to the extent of hiding, crying, convincing...me that he does not need to go. 

You see, he NOW realizes he has to work harder than his peers to get the same result.  This boy loves to read, however he does not see the words the way others do.  He loves to write, but his hands don't work the way "normal" kids hands work.

He recognizes this now.  Heartbreaking for parents.  Absolutely heartbreaking.  This  is certainly not our pity party, but more a recognition of how much I hate the beast.

Tucking one in with glitter in her eyes, and another one  who sent me to crawl in the bathroom and cry like a baby.

Tonight was hard, real hard.

This is not what I would have imagined our life to be, but it is ours.

Tomorrow will be easier.

Isaiah 41:10  fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand.


Fawn said...

I have nothing smart to say. But I wanted to send you and Jake my love.


Ben said...

This post is so timely. We have settled the beast down medically, but not are left to pick up the pieces as well. It is heart wrenching to watch your child still have to struggle. I would love to email you and talk about how you are dealing with the IEP's and therapies and such. My email is laurieanne1@sbcglobal.net Thank you for being transparent and for blogging. Thinking of you and hating the beast as well.