Wednesday, August 5, 2009

The Place I’m At

I've really put off writing this post here. I guess because it feels like I'm giving up on my child. I would like nothing better than to bury my head in the sand and say that everything is just fine and Taylor's seizures aren't quickly taking her away from us.

None of the medicines, not the VNS implant, and not the corpus callosotomy has taken away the seizures. The brain surgery did stop the drop seizures for about 4 years and for that I am eternally thankful. While the hundreds of absence & complex partial seizures she has continued to suffer from have not been great, they have actually been more of an annoyance than anything else.

All that is changing now. She has started having more and more drop seizures and some days, it's just too hard for her to function. We've watched her lose abilities and become unable to do some of the things she used to do. She can't carry her food/drink to the table any more for fear of dropping everything during a seizure.

We've been told that it's probably best that we try and plan "things" now as it will too hard when the time does come. I always thought her heart defect would eventually be what caused her the most life-threatening problem. No, it's going to be her brain. That part of Taylor that makes her the happy, loving, funny, silly person that she is will eventually be what takes her from us.

I realize that no one knows the future and Taylor could outlive me. I also know that the signs I'm seeing now tell me that I need to cherish every day I have with her, knowing that one day, in the near future, she could just slip away.

I'm torn between pestering the neurologists for something that will help and not filling up what could be a short time left here with tests, needles, and doctors.

Yeah, so that's where I am right now…torn between reality and denial. I think I like floating down that river better.


HappilyFlawed said...

You are such a good mom. I know whatever you do decide will be in the best interests of your daughter!

Jacqualine said...

my friend and sister in so many ways,

As sad as this time is going to be remember you do have friends all across the country and we will be here for you.

And though I am not in your shoes,I can only offer up what I think is best from am outside perspective. And remember this is just that, my opinion, and we will all support you in whatever you decide.

Looking inward over the last few years I have seen a mother that will literally do anything for her youngest baby; include turning away "death" when he knocks on the door. And now the time has come when you really no longer can turn it away; instead it might be the time to welcome him w/(somewhat) open arms. Either direction you go is going to be hard on you; yet you must still do what is best for Taylor (which usually is what hurts the most) and we come to understand this as mothers.

Over these last three years of my daughter's life, you have walked beside me when something needed decided/done. And though what you face w/Taylor is a hundred times more difficult than what I face w/my daughter, you not once chided nor turned me away; yet I could always count on you for advice and a shoulder.

At one point you reminded me that no matter what I decided, the end result should justify the means/approach of what I allowed to be done. In this my friend/sister the time seems to be nearing when you must now weigh this fact...if doing more testing will justify the pain you and Taylor will go through. Will it help extend her life and keep it productive? Or might it just extend it into agony for both of you?

Again my sister, these are just my thoughts and as much as it pains me to see you hurt, the pain will eventually start taking that turn to healing...regardless of what you decide in the near future.

Through this time (and these hard words) i will walk w/you and protect you from the harshness of the world as much as i humanly can.

Beth said...


My prayers are with you as you try to discern which way to go. This has got to be an impossible task. Hopefully Taylor will help you to see the path that is best.