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.
