How did I get here?

*note*
If you have not read the following two entries you should go back and read those first before reading this one.
READ THIS FIRST
READ THIS SECOND.

I guess I should explain or at least attempt to explain how my mind slipped into the place I am currently fighting my way out of.

I've been trying to find myself for a couple of years. Every time I say that I just cringe in how hokey it sounds but whatever.....it's true.

Makily started having seizures again last year.


It ROCKED me to my core. I knew at the time it was going to affect me but wow, I just cringe remember the feelings of getting that phone call from the school and hearing the teacher just blurt out "Trish come quick".

It was another slap of reality right there in my face. Nothing I could do to avoid it. Nothing I could say or change. It was what it was and if she was going to die, once again there was just nothing. I had to fight to get the settings adjusted on her apnea monitor while we were adjusting the meds. I was afraid she'd seize in the night and die. Emanuel Syndrome kids have been known to do so and it's always in the back of my mind. The meds lowered her heart rate and so the monitor went off constantly. The cardiologist did not want to sign off on lowering the setting but said it was fine to do so as long as Makily's heart rate was above 40. Why wouldn't she just write for it? I begged, I yelled and cried at this woman and she just didn't get it. And what could I do about it?

Nothing.

More Nothing.

I pushed that into the back of my mind while we dealt with adjusting her medication and as we watched her become sleepier and sleepier. Then she had another abnormal EEG. Lots of abnormal brain spikes. Her eyes do this weird thing when she is tired. She has no stamina. I look at her sometimes and have to fight sobbing because the reality of this gets more apparent the older she gets. I love this innocent, angelic being in a way that I think is unique and so intense sometimes it hurts. Okay it hurts most of the time. But I DON'T want the alternative. I don't ever want it and I pray for it at the same time. What will become of her when Allen and I are gone? I can't expect Jakob to spend his life caring for her. I can't fathom the thought of her in a home right now....or ever really. So I sit. I wonder what can I do about all this.......and the answer is always.....

Nothing.

And who's fault is all that emotional tornado? Who caused this? Who is the person to blame for my daughter's life being likely cut short and DEFINITELY made more difficult and painful than ANY child should ever know?

Me.

I have blamed and beat myself up for the past nearly eight years because of the fact I genetically passed this condition to Makily.

Logically and rationally I KNOW this is not the case and had I known I'm not sure what we would have done differently. The fact is though that I am fucking ANGRY as hell about what Makily won't have and the only place I've been able to project that anger was on myself. I didn't even realize I was doing it until the therapist caught me doing it and then told me to make it a point to catch myself when I had more negative thoughts about myself. I was baffled at how much and how often I do it.

That stems from a lot of different things I guess but I know the event I blogged about recently HERE is a contributing factor.

Then when Makily's button came out in the night a few weeks ago.....well that was the final straw. She was surely going to need it dilated as it had been out for a while since we had all been asleep. I just lost it. I looked at Allen and said I don't know what to do and then walked out to sob on my bed like a lunatic. I immediately envisioned the look of sheer pain and terror on her face when they dilated it the last time and I was so anxious I could barely stand myself. I did NOT want to have to do that to her again. And what could I do about it?

Nothing.

I am learning to let go of things I can't control. I know I will let go of those things and pick them back up over and over. It's who I am. I am working on this.

I am learning to not care what everyone else wants me to be or thinks I should be OR THAT I PERCEIVE they want me to be....and instead I'm just going to be me. This is very freeing and I refuse to ever go back to being that way again.

I am an awesome wife and mother. I'm a great daughter, sister and friend. I have my faults (see I'm doing it again, complimenting myself and then having to acknowledgement faults....why do I do this?). I am trying to learn to recognize that even though both my kids have special needs does NOT make me a failure as a mother. My life is just different than most and that's okay. If we all were alike this life would be incredibly boring.

I've struggled with my faith and in what I believe in. This has also brought me to my knees. I can't stand it.

Jakob is a really hyper kid and sometimes I'm just tired. We let him run in and out of the backyard and that seems to have helped along with his new trampoline.

The visions I was having began as flashes of all the horrible things I've had to sit by and watch Makily go through. I would see her laying near death on a vent, blue because she's not breathing due to a seizure, exhausted because her body is just not made to make her soar like she should.

I would be sad the rest of the day and want to just swallow the bottle of xanax. I wouldn't do it though, I couldn't stand the though of leaving my babies and Allen. It wouldn't be fair to them.

Then the flashes turned to suicidal ideations. It scared me. I realized I had never truly dealt with Makily's issues. I just kept trying to bury them and take them out on myself. In doing so I was constantly looking for ways to escape the pain of it all. I've done things I'm not thrilled about but you know what? That's okay. We all make mistakes I'm human just like everyone else and I won't hold myself to higher standards than I would anyone else.

Why do I do that?