We have worked hard, really hard and she has put in even more work then we have to get to the top of the mountain. When a kid has a severe, (life threatening) traumatic brain injury it takes a lot of doctors, nurses, therapists, teachers, PCAs, siblings, friends, and some times even strangers to help Mom and Dad to get her to be the best she can be, whatever that is. She gained academic skills, fine and gross motor skills, emotional and social, skills, and an over all sense of independence and well being which she as well as we were getting comfortable with. She had achieved far more then anyone had imagined possible. We had expectations for her and she could follow through. Goals were set and she slowly, but steadily reached each one of them. Yeah, there were many setbacks and much frustration along the way, but we were always moving in a positive direction.
That all changed just about a year ago when Lauren, who had been seizure free for thirteen years began having them again. The quality of her speech has greatly diminished to the point where there are times when, even those of us who are around her everyday and usually understand her can not make out what she is saying. At times she can not complete tasks which had been mastered for years. Her behavior overall is getting more immature.
Working so hard to make gains gets tiring and monotonous at times but the end result of seeing your kid learn to walk or talk or zip a zipper, after six years of patiently practicing makes all of it worthwhile. We celebrated all of the successes with great joy. Watching your kid lose what she has worked so hard to achieve brings about the most helpless feeling in the world because no one can tell you when the decline will stop, (if it does) or what the end result will be.
Lauren is teaching me to appreciate what we have because we under estimate it value until it is no longer there.
So when your kid is saying "no", or asking those dumb "why" questions be happy that they can communicate.
When your kid is running, yelling, and getting dirty, run with them, be loud with them, and be thrilled that they have gotten dirty so you can clean them up.
When you kid needs help to button their pants, zip a zipper, or tie their shoes help them and remember that some day they will not be needing you to do those things for them.
Enjoy the slow steady pace of climbing the mountain of learning, and growing up because that is so much more fun then a free fall back down when you do not even know where the bottom is. I have no idea what lies ahead for Lauren, but whatever happens she will always be our blonde haired, blue eyed princess.