I haven’t really felt like posting an update these past few days. I haven't been sleeping well, and couldn’t sleep at all Sunday night. It was one of those nights when exhaustion made me wired, and recent news left me restless. Since the Freedom Walk, my e-mail has been overwhelmed with exciting news about our fundraising efforts, and with sad news as well. The Walk has raised a total of $105,000 so far – all of it to be used towards epilepsy resources for families in Orange County and the surrounding areas. I am so proud, and so appreciative that we have exceeded our goal!
And then on Sunday morning I read the news about the 3 children from Ladera Ranch who were killed in a horrific car accident. And later I heard a story about another local child who dropped dead of a heart attack at age 21, and news that a special needs friend of ours is sick again, and then that a child had 3 seizures at the Walk, and so on. I could not sleep on Sunday, because I just cannot imagine losing my children. Jack is so full of life as he is about to finish Kindergarten and is enjoying baseball so very much. And Jenelle - she is doing so well, improving so much, and doing new cute things everyday… I just can’t imagine losing her now.
And then there are the small anniversaries for Jenelle; April 30, 2004, May 10, 2005, and June 21, 2005. I thought with the passing of time, these dates wouldn’t be so emotional. However, they are still fresh in my mind as if they were yesterday. While Jenelle is constantly improving, I am always aware that it could change at any moment.
During the preparations for the Freedom Walk, we asked a volunteer to call some members to ask them to sign up a team to help support the EAOC. Sadly, our volunteer reported that some families responded with, “We’re seizure free now, we don’t need you anymore!” Other families were not involved because they had moved onto other causes affecting their child. While it baffles me that someone could go through all that, obtain the ultimate prize and then never look back - I am also reminded of our looming anniversaries and of the literal hell we’ve been through. So I guess I can understand why someone wouldn’t want to revisit that hell. And as every parent can tell you, it is like going through hell watching your child deal with difficulties in life. And no matter how simple the procedure, the fear is so very painful and so very real.
Those who are young are probably wondering why they should ever have kids. Let me tell you, it is so worth it. The pain, the joy, the pride, the agony, the fear… It is an experience that is difficult to describe and yet so rewarding. My children make me a better human being. And while lately the news has been good and bad, I realize that everything happens for a purpose. And our children touch and change our lives deeply. Shouldn’t we all strive for that?