Honest thoughts from a mom who is struggling with what it means to have a child suffering from Doose Syndrome:
It seems as though I have been watching life in slow motion lately. We have been told multiple times that Ethan is not responding to any treatment, and that the medical team does not know what else to try. The thing is...there are other options. I just have to be the one to do the research, find the things that are working for other families and then suggest them to the doctors. (an honorary neurology degree...yeah I have one. :) It is a long process though. After searching the web, reading article after article, to many medical journals to count, then it happens! You think you find something that might possibly work. SO I call to make an appointment and the receptionist says, "Well we are all booked up at the moment. I can put you on a waiting list." (I really hate those 4 month waiting lists.) It is so hard to watch your son fall, and hurt himself continually and then be told by the medical team, "Well we have an opening in September with the doctor." Really? This is life threatening. You want me to wait 5 months to see the doctor? Craziness.
Then one day you find yourself in a place you never thought possible. You look around and 3 months have gone by. You have cleaned up blood so many times a day it just seems like part of normal life. You spend more time on the phone then you ever thought possible. (Who knew that doctors and insurance companies couldn't get along?) Well I get the privilege of playing middle 'woman.' This is what life looks like now. I had unknowingly kind of become use to it.
Then all of sudden I am smacked with the reality of the situation yet again. We are now getting letters from the insurance company wanting to know why Ethan is hurting himself so much. We now have to fill out reports as to 'why he fell,' 'where he fell,' and 'how he fell.' They are skeptical because there have been so many x-rays, so many doctor's visits, and so many injuries. Also his preschool teachers are very concerned. They say "Wow I can't believe how hard and fast he falls," or "Are you trying any new medications?" I just cringe at the comments. If only they could come and live in my house for a day.
How come the doctors don't see the seriousness of the situation?
When Ethan falls down time after time during the day he is less motivated to try again. So we see him regressing. He has taken to crawling lately. It is sad, but I can't help but think I would do the same thing. If my brain kept turning off and I found my self lying on the floor in pain (not quite sure how I got there) over and over again, I would be hesitant to stand up.
I want so badly for things to look up. For Ethan to have some 'good' days. But that just doesn't seem to be the path that life is taking at the moment. We are stuck between a rock and hard place. The doctors don't know what else to try. We are praying and Ethan is still falling.
I am just being honest--Today was hard. Tomorrow is a new day and we will rise in the morning and try again.
"But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him."