A Hard Dose of Reality (Even M&M's can't help)

Here I am up at this ungodly hour, 4am....I've been awake since 3:00 though. This has been the norm this week, and this morning as I tossed and turned, I decided to get up and 'write it out'. I've had a lot on my mind this week, mostly normal daily worries that I have - nothing out of the ordinary...it's just that I have those moments of weakness when things 'bother' me a bit more than normal.

But I'm having issues sticking with my eating plan this week, and as I lay awake this morning, I was trying to decipher this...What am I not facing? What am I not 'feeling' that I should be?

And then the tears came. And I realized what has been eating at ME all week that I have been trying my best to ignore.....

The death of John Travolta's son, Jett. I am simply heartbroken for this family. Forget who they are in terms of name, fame and Hollywood. I've always liked John Travolta and viewed him as a pretty regular guy - down to earth, grounded.

I was not even aware that his son Jett had epilepsy until this week. I've also heard some references to autism, and the 'specialness' of Jett ~ but in any case, Jett's death is gnawing at my heart and I think I have been avoiding reconciling it in my head. (For any of my new readers, my son Chris has epilepsy, and you can read about him here.)

Any parent of an epileptic child knows deep down that this could happen...no matter what medication or precautions are in place, death resulting from a seizure is that 'thing' buried deep in our hearts that we hope we never have to face. Whether it's SUDEP (sudden death in epilepsy), or an accident resulting from a seizure. In Jett's case, he got up to use the bathroom in the middle of the night, had a seizure and fell and hit his head - and died. Just like that. Two full time attendants to be with him 24/7, a monitoring alarm - and still, this happened. I am just devastated for this family. I am sad that they have to suffer this loss after being blessed with him for just a short time.

There has been much speculation about Scientology, and whether or not Jett took any seizure medication....it's not really for us to know I believe. What I DO know, because we have been told blatantly by Chris' team of neurologists, without seizure medication, OUR son would die.

Currently Chris takes a total of 17 pills and two liquid doses a day to control his seizures...three medications. He is 17 years old, and we have to be with him when he showers because he can not be alone. I can recall an incident a couple of years ago when I walked into the kitchen and Chris was laying on the back door landing at the top of the basement steps - having just had a seizure and had just laid down there to sleep it off. The 'what ifs' that went through my head ....well you can imagine.

Even recently, Chris has gone in his room to get dressed and I realize it's taking him too long, I go to check on him and he is on the floor. Now I should say that because of the drugs he takes, his seizures are very 'muted' - some are stronger than others, it's just hard to predict, but, we are very very aware that the epileptic brain can turn on you at any moment. The Travolta's nightmare became reality for them, and it's a reality I for one have a hard time facing.

I try not to think about it too much...and then something like Jett Travolta's tragic death happens, and I am forced to think about it. This could happen to us. It's that simple. Even Mike this week says to 'turn the channel' when yet another story about Jett comes on - not because he is cold and disinterested in yet another celebrity story....because he does not want to think about the implications either.

So I write this morning to put words to my feelings about Jett Travolta's death. I am sad, angry, and scared. I don't know why it's difficult for me to face these feelings and 'feel' them. Perhaps I don't want to appear 'weak' and vulnerable. Perhaps I prefer to be perceived as in control of everything and on top of my game in terms of caring for Chris' needs. Something like this happens, and I am reminded how deeply I love my son and how I would do anything to keep him safe and protected from harm. And it's hard to accept that despite my best efforts to do this, I really do not have the final say.

I guess for that matter, none of us really has the final say, do we?

Looks like I have time to hit the 'mill now before work...my stomach is in knots, but here's hoping a good little run will cure what ails me today......