I sit here tonight in much strife, uncertainty and confusion.
I really can't believe I log on ever so often to blog about my boy. I read blogs that people attach to emails to me. I don't blog about my own life.
I can't believe, looking back at the past 3 months where our life has taken us. I reread the blog that I have written and can't believe it. What the heck happened? What did I do wrong? Why can we not live a normal life right now?
I remember about 6 weeks into this I looked at Matt and said "I am soo glad I didn't drink or even take a sip of alcohol when I was pregnant, because I would be feeling so guilty right now." I know I said that. and, no I didn't take even the littlest sip of anything,but I still feel like I did this to my son.
Was it all the milk I drank? He did end up not being able to take breast milk or formula, he had to drink lactose free, as a baby. He has eczema...did I give that to him? I started with bad outbreaks, just like Jake, in 2000. Was it the darn vaccines that I questioned a trillions times to my doctors?
I seriously don't know how we got here and , again, looking back, I can't believe we are where we are.
We had just gotten to the "good part." Both kids potty trained, sleeping through the night, they play together, get up and watch Saturday morning cartoons together, eat dinner together...yada, yada , yada...you parents out there know what I am talking about. It was seriously getting easy again! W e could honestly appreciate the twerps without stressing about what they needed next!
Then BOOM August 1st happens.
Looking at the last 3 months I can't believe we seriously restrict the kids to the playroom or family room, we walk him to the restroom and hold him to pee, we have to explain ourselves because he can't hold his drink at a restaurant, or his head hit the table and he starts to cry, that I am not working, and Jake is not at school. When we were at Children's Hospital I remember saying to matt nonchalantly, and not even thinking I needed it, "Maybe I should hold off going to work for a couple weeks." Here I am almost at the end of the 2nd 6 weeks and still not at school!
I have a rowdy, rambunctious 3year old who knows nothing of this rather than "no pokes" from getting iv's, stitches, more iv's and more stitches. At one time, or rather several times I wished God would give it to me and take it from him. But if I had this damn disease, syndrome, whatever, I would not be able to care for my kids the way I should. Jake doesn't truly get what he has. he knows mommy gets angry at him for not staying on the carpet, or sitting down, or he has to sit in a highchair again. he gets pissed when he has a seizure, he knows when he needs his meds, but to him , this is his life.
This is MUCH harder on Matt, Addison and me than it is on him.
Frankly it just sucks. It sucks mostly because we still don't know anything! The doctors and nurses that I love still don't now anything. We can treat him with all these drugs, that are not supposed to change his disposition or personality, but do, but we still know nothing about this darn disease!
here we are November, epilepsy awareness month and has anyone heard anything about an Epilepsy event in your hometown?! I bet not. I am in Dallas and search and try to find something and I can't!
Not just because of Jake, or our family, but because of millions of others out there battling this demon, please go out and hug a friend with "E" and try to find out what we can do to try and "fix" this disaster that no one appears to know anything about.
I apologize, for Babi:-), for "cussing" in this blog and in another blog...emotions get the best o fme sometimes.
My day with the Pioneer Woman
11 hours ago