Wednesday, May 6, 2009

One week...

I just haven't been feeling very blog-gy lately.

I've sat down several times in the attempt to compose something.

Problem is, I just cannot seem to articulate anything right now.

I'm just in one of the biggest funks. Each time I sit down and type, I end up with this long, exaggerated out pour of mixed emotions. There's nothing coherent. Nothing.

I'm angry, sad, bitter, frustrated, overwhelmed...you name it.

I feel jipped and blessed all at the same time.

Each time there seems to be progress, it's practically crossed out and replaced with a setback...

Day before yesterday I didn't see any clusters...his isolated drops were mild.

Yesterday afternoon we had our first speech therapy session. I was so encouraged by the therapist! She seemed to have so many great ideas that may actually be realistic for Austin. Motivation was starting to kick in a bit.

But, the clusters were back....and accompanied by four seriously intense drops (among the other milder ones he had).

So, mentally that put me back at square one. No more excitement...no more anticipation for the moment. Just a knot in my throat that stayed the rest of the day. I was sick to my stomach and curled into a ball to go to sleep.

This happens EVERY SINGLE TIME! Just when I barely start entertaining the thought of better, it gets jerked right out from under me. Oh, the mild seizures...maybe he can start venturing beyond his "safety zone" (which resides in carpeted, softly or non-furnished rooms only)...and BANG! There goes that thought.

I'm just so sick of being scared...and angry...and bitter...

I'm consumed with bits of nostalgia (with us approaching our one year of seizures)...remembering the past in such detail.

I've never been one to embrace change. And this was a MAJOR change in our lives. I just cannot work through this.

This is what I've been struggling with all week. The posts I had prepared somehow morphed into random thoughts all jumbled together...Kind of like this one, but it's the best I can do at the moment. The further we get into May, the harder it's getting. The trooper face I've been wearing is becoming less and less of a disguise.

Everything is just flooding in all at once. All the moments, and images, and emotions from last year are taking over. Never once at that time did I think we would ever still be here fighting to save Austin from seizures and developmental delays. I just didn't. As sad as I was, I really thought it was temporary...meaning a few weeks...maybe a couple months tops.

But here we are...exactly one week away from the one year mark of the first spasm I ever witnessed. Not an anniversary to celebrate.

A day I've been preparing for but dreading at the same time.

I desperately hope everyone is right...that it gets easier. Because it certainly hasn't yet. I'm still fighting the exact same feelings...anger and devastation. I've just gotten better at controlling them.

So, I hope I haven't completely ruined your day. This is not the kind of post I like doing. But, I've waited a week for this mood to pass and it hasn't yet...and may not until May is over...who knows. Maybe I'll find the peace I've been praying for.

I'm hoping for the latter.

7 comments:

blogzilly said...

This is the place to do it...sometimes you gotta let it fly and tell it like it is, and let people know how you feel, even if it is like shit.

You deserve to feel like shit for a while too when you need it, don't let anybody tell you otherwise. Then you dust off, get back up and get ready for the next battle.

JSmith5780 said...

I think it's the fact that the one year mark is approaching. You feel overwhelmed that you and Austin have been fighting for so long.

Thinking of you.
hugs

P.S. if it were me, I'd probably spend that "anniversary" sloshed so I wouldn't have to think about it.

Sophie's Story by Elaine said...

You haven't ruined anybody's day. You are being honest. For others to be able to relate to you. That is the hardest thing for me...to own up to my feelings when I am sad and to just let it be. The one year mark is the hardest. ACTH was suppose to work. Then it doesn't. Then you try one drug after the other. Hopes are raised. Hopes are smashed. And before you know it...the one year mark creeps up. It is hard to deal with. VERY HARD. We are here for you. To listen. To go through the ups and downs with you. Because in our world the ups and downs occur within seconds of each other. A seizure can ruin any moment. It is difficult to deal with those kinds of emotions. To end this comment on a positive note...Sophie went through a period of drop seizures but those are gone now. They have been gone for quite awhile now.

You and Austin are in my thoughts and prayers.

(((BIG HUGS)))

baby trevor's mommy said...

Definately those "marker" days...weeks...are the hardest.

Trevy's 2nd birthday hit me like a ton of bricks. And I was very sad...very weepy...very angry...

I keep telling myself it's healthy to feel these emotions. That it's part of the healing process. I keep telling myself...

((((hugs))))

...danielle

Holli said...

Ken, Jen, Elaine & Danielle:

Thanks so much for the support and encouragement...

I hate, hate, HATE to be a downer in my posts...I really am optimistic most of the time..but this upcoming week is certainly doing a number on me...add very little seizure improvement so far on top of that...

I guess though sometimes I gotta let it go and be honest with myself and everyone else I've been putting on "my happy face" for. That this just sucks.

And sloshed...that doesn't seem like a bad idea! :)

Colby said...

I have been at this a very long time now...I PROMISE you...It WILL get better...YOU get better at it...Listen, I STILL have my days when I just cry and say to myself that Colby is going to be the death of me...And I truly feel that way! Literally!! It wears you out in EVERY POSSIBLE WAY...(especially when you get to be MY age!) But then you go a few days, or even just a few hours, with no seizure, and you sigh and relax a little...But you are always looking and waiting...It is NOT fair and it is NOT right! But it is what it is...And some days it is heaven and some days it is s#*%!!! But you can and will muster the energy to face every day and take care of your baby...If you guys only knew me 30 years ago, you would just crack up to know that I can actually make it through one day of this! I was such a wuss!! Still am with alot of things! But I shock myself every single day with my hidden strength...You have it, too...Just keep taking care of yourself as best you can...Austin is resilient and so are you...

You are a wonderful mother...I hope you can celebrate that this weekend...

aRtcHixX said...

Reading you writing is so touching - even though I don't have any children. I know how hard it can be to try and keep up the facade ... the trying to deal with it and making people feel like I'm doing okay.
I may can even convince myself as much but every once in awhile the cracks start to surface and my emotions will bubble to the surface. I start to feel usure and completely uncomfortable within my own skin. Nothing is right or wrong and finding the right words to express the waves of emotions that are feel like they are drowning me is ....
seems impossible.
But we somehow barely make it through and maybe a few days or more later we try again. Sometimes the words come and like in this post....
I call it spilling open.
I'm all over the place and but it's stuff that has to come out and be expressed in one way or another. You are extraordinary and I am inspired by your strength!
I know that in my rough patches I tend to pull back...withdraw a bit and hopefully in a few days when I'm feeling more up to it I reach out to great friends like you!!!
I hope you know I'm here if you need to lean and not have it all together or know what to say about your day!
I love you girl!!
e.