"Perhaps it’s my optimistic attitude and positive outlook on life, but I truly feel that this may be for the best. As long as there is no diagnosis that limits her life or limits her development, then really there should be nothing holding her back once we control her seizures! Without a definite diagnosis, her potential remains unlimited!"
One thing I have been turning over in my mind since reading about the Ashley Treatment is that we cannot predict the future. Of course, hind sight is a wonderful thing to have. It is great to look back and say, "Wow, if we had only known she was going to do this now" wouldn’t these difficult decisions that we are faced with be so much easier? Of course now I can say, "Gosh, I’m so glad we didn’t remove half of Jenelle’s brain. Look at how much she has improved!" When at the time, I wanted to beg and plead with the doctors to go through with it regardless of whether or not she was a candidate. The surgery had promise, and not allowing her to have it meant she couldn't be normal.
I do not wish to pass judgment on Ashley's parents for their decision, but I hope and pray they don’t regret their decisions years from now down the road. When hind sight gets the better of them.
I will share with you now my secret hope ... that maybe someday Jenelle will walk on her own, talk and have the ability to live independently. That she really is just a late bloomer, and that once we got rid of her seizures, she turned out to be O.K. It could happen. Most likely not, but it still could happen. I am amazed at how my statement merely two years ago has practically come true. In April 2005, Jenelle couldn't’t sit up, she couldn't’t eat well, she didn’t smile or show any emotion (even that of a cry of discomfort.) And look at all she is doing now. Sitting up, walking on her knees, laughing, giggling, smiling. And it hasn’t even been 2 full years. Just think of her potential, it truly is unlimited.
Right now our biggest challenge with Jenelle is that she moves too much. I remember the days when she was so non-responsive and thinking "be careful what you wish for." Not this kid wiggles so much, diaper changes are challenging as is putting her to bed at night. I want immediate help with these issues now, but Brett reminds me that perhaps in a few years, this will not be an issue. He is hopefully optimistic, and I want to get lifts in place as I know how difficult our insurance can be.
Wouldn't it be wonderful to see into the future? Without knowing, all we have is hope. As as long as we remain optimistic, the future looks bright.