That "E" Word

E-V-O-L-V-E.

That word has come up the  past few days in different conversations. Sometimes with other people but mostly with myself. The basic premise: we should constantly be evolving and growing into more [insert positive adjective here] persons than who we were yesterday.

I am different than who I once was.

How?

Just now I began to write "I wish I were more..." but I promptly hit delete. The question isn't "how do I wish I were different?" but rather "how am I different than who I was yesterday?"

I don't mean in 24-hours ago yesterday. I mean those markers we all dream of as kids... Those moments that make your life... And with each event, an evolvement if you will.

Say the day I met Manny.
I am definitely different than who I was that Spring day in 2004.
The day I found out I was expecting. Yikes.
Definitely different.
The day I found out we were having a boy. That lil' baby became my son.
Definitely different.
The day I married Manny. Best. Day. Ever.
Definitely different.
The day I got the call for my first real job at the newspaper I still write for. Despite already being a parent and a wife, somehow within that 2-minute job offer from my now-editor I became an adult. Like, for real this time.
Definitely different.
The day I found out we were pregnant again, after three miscarriages. Scared. Petrified really, but hopeful.
The day I found out this "Peanut the II" (Gabe was "Peanut the I") was a girl.
Definitely different.
The day she was born.
The day Gabriel went to pre-school.
The day Rett Syndrome entered my life.

Definitely different.

How?

Isn't it funny how all of our weaknesses are so ever-present in the forefront of our minds when we ask ourselves to be honest about where we think we are at in life? No matter what the positive stride(s) you've seemed to have made, those Negative Nancy's are much louder than the Positive Peggy's.

Definitely different.

I used to be confident. Now, I am shaken. For the past 2 years, I feel as if life wrapped it's stronghold grip around my arms and shook me so hard that my head is still trying to steady itself. I (try to) mask this shaken-ness... By trying desperately to convince others that I am totally in control and that "I got my shit together." I definitely don't have my shit together. I am not sure if I will ever have it together ever again.

I am insecure. I am insecure that I am not sure I will ever be in control of my life again. I used to have a clear definition of where I saw my life going.... Like we used to when we were all younger and could day dream of all the grand things we would accomplish.

I am fearful. I never write about it because it's just too damn depressing but I think about it everyday. Some days it's a millisecond - a fleeting thought that flies in and flies out so fast I don't skip a beat - and other days, the bad Rett days, I have to stuff it down or else it will consume me and paralyze my hope. Stop my faith dead in its tracks. Incite such furious anger in me and cause me to yell at the very God I used to love with my whole heart. The love for Him that used to consume me is now stifled by a fear and an anger so strong that I need to pray for my own faith - pray that I can actually hang on to it in the worst of days because I know I need it yet I become closer and closer to rejecting it. And anytime another family loses a daughter with Rett Syndrome - three angels have passed away in the past week alone - I pray alongside cursing. No one ever wants to be reminded that the diagnosis their child has includes "sudden death" in its symptoms. I always say, Why dwell on it? It doesn't do a bit of good. It is out of my control. Just shut your mind up about it already, Stefanie. Yes, the inner voices. (Note: I'm not crazy.) But three grieving families. I, for the time being, can no longer just "not dwell on it." It is fear become reality. I pray for their families. But then I yell at God. I pray at His feet hanging on the Crucifix, and then I ask Him why He doesn't just come down off that cross already and do something?

See? Definitely different. I wasn't dealing with this baggage a year ago. Am I regressing in a way of my own? A spiritual regression? A stagnation of spirituality? Perhaps Rett has affected more than my daughter's physical body. It's affecting my spiritual one.

I am short-tempered and I am hurting. Marriage isn't easy as it is. Marriage with Rett Syndrome... No words. The things I had to work on before - for those who know me, let's be honest, I am a boss, control freak, type-A know-it-all and live-life-by-my-planner nightmare of sorts - I have to work on even harder. And there are some days that I am tired of working or I am just hurting and licking my wounds and trying to bandage them well enough to get on with the day or even worse, I am stressed out beyond even thinking of trying to work on being a kinder more charitable wife, which I really want to be. And for some reason, my priorities run Anna, then Gabriel, then Manny, and then me wherever I fit in the slot that day. 27 out of 30 calendar days my hair is in a pony tail and if my sweats are clean I am wearing them. The other 3 I really bring it. Yea. 3. Prayer (if any) is done 5 minutes before bed.

Definitely different.

This has not been an easy post to write, and I am borderline second-guessing even posting it. But I know I can't be alone in this. We write about our daughters most of the time. Our other kids some of the time. Our husbands really never of the time. Ourselves whatever-fraction-is-left of the time. We bring our thoughts and our words and our rambles and our deepest feelings to our blogs and we can be downright depressing but we can also be positively enlightening.

Perhaps "evolving" isn't so crystal clear as putting one good foot in front of the other and "being the change you want to see in the world," compliments of Ghandi. Perhaps evolving is more micro than macro, done in tinier steps than even we can see, until we look back, and we realize just what a big step lay behind us. And it grows... The less we look back, the more we can look forward.

Just someone get me some horse blinders.

To evolving.