I want to be writing about my jam packed weekend, going to Ren Faire and the family picnic and then another blog about my beach day with my kids, but there's some other things I wanted to get off of my chest.
I've been struggling. For a long time. I've spent a lot of time trying to figure out who I really am and what I should be doing. Since I was little. When you're a kid, adults tell you that you can be anything you want. Your parents tell you, your teachers tell you... the supermarket clerk probably told you. I just wish it was actually true. You see, I envisioned myself as a lot of different things. I wanted to be a movie producer. I wanted to be a model. I joined the choir in high school because I thought maybe I'd learn how to have this incredible voice and I could be a famous singer someday (yea, don't listen to me sing... it's not pretty...). When I became a little wiser, I thought a career as an accountant would be great. I took the classes in high school and I was good at it.
None of those things panned out. Once out of high school, I started working right away. I had a little baby boy to support and making sure I could provide for him was the most important thing to me. I had some really great jobs along the way. Jobs that gave me great experience and were great stepping stones. One of which introduced me to the man I'm married to, and with out him, I wouldn't have the awesomely big family I have today. Around 2005 I exited the work force. I did have a few jobs here and there and in between when we had rough spots but today, I am a stay at home mom. It's a hard job. Probably the hardest of anything I've ever done. Nothing close to what I ever imagined.
Which is all just part of the difficult recipe I've had to follow through out my entire life. Nothing has been easy. I tell my husband all the time that from the time I was a little kid, as far back as I can remember, I've had to struggle. Luckily for me, I was built tough. I was built to figure things out and deal with things as they came. That's why I can be who I am today. I was built this way.
I just wish I could get a break. When Mallory came along, everything got turned upside down. Everything I thought I knew was complete nonsense. What I thought was strong, wasn't even close. My reality isn't the same as most others' realities. After I had breakfast this morning, I had resigned myself to the fact that this wasn't going to be a shower day for me. I went into my bedroom, put on a new pair of underwear, jeans and shirt, threw my hair up and called myself "ready for the day". I look like crap (with my apparently ginormous claw).
I looked at myself in the mirror and wondered if other stay at home moms look like me today. I looked at myself in the mirror and wondered why I couldn't be "that mom". You know, the ones who have the greatest selfies. All done up every day, great hair... probably gets to go the salon, great outfits and perfect little well dressed kids with the perfect craft activities for the day and the perfect neighbors who have perfect outings and perfect poolside wine parties. Why can't I be her?
Then I realized that it's because it's friggin' impossible to be her. You know what's first on my daily checklist? Doing my daughter's trach cares. Then I have to get her breakfast ready. Then I have to supervise my other kids' breakfast. Then I have to get my three year old changed and ready and then make sure his hearing aids are in. By that time it's like an hour until lunch. Where does my day go? And this is an easy day... I mean, school days are even more packed with panic. I don't have time for the perfect make up or hair or outfit. Or working out so I can have the perfect physique. I've packed on about 15 extra pounds in the last 6 months.
Then I worry about where I really fit in. Where my daughter fits in. Facebook is a demon on some days. I watch other families with little kids with disabilities doing some really great things. I watch as there are whole groups and organizations that work with kids with Apert Sydrome. I want to jump on the bandwagon and be all up in that, but then I stop myself and say, "my daughter wasn't diagnosed with Apert Syndrome... she was diagnosed with Pfeiffer Syndrome". So where does she fit? Somedays she feels less important. There isn't a whole lot of support out there for Pfeiffer Syndrome. There just isn't. Should I start that bandwagon? Do I have the time? Do I have the energy and resources? I don't really know. I don't know. I know that I love my daughter. I know my husband loves her and her brothers are HUGE fans of her. Maybe that's what I should focus on and stop worrying about changing the world for now.
My other problem is guilt. I have to pick and choose the things I can do with my boys and with her. That often means letting people down. I always feel guilty about the choices I have to make. Apparently, though, it means sending the message that I just want to be alone and secluded too. I don't know if anyone really intends to make me feel like that's what I ultimately want but I don't think anyone really understands what it's like to be in my shoes. The intricate planning that goes into every choice I make anymore. The anxiety that comes with it. The feeling that I have to disappoint people around me. It's a burden that I now have to bear. Another layer of strength to keep moving every day.
And do you want to know what really pisses me off? People that take advantage of the good. People that have the opportunity to do great things with their lives but choose not too. They choose the wrong people. The wrong directions. That blame others instead of looking inward. That try to replace bad things in their lives with other things and think it's supposed to make anything better. That start to have it good and then try to sabotage themselves. People that take their kids for granted. Who don't see their kids as gifts. It actually makes me feel sick to my stomach. And I know more people than I'd like to that just pass off their responsibilities or stresses onto others.
So what's the point of all of this? I don't really know. Maybe just to vent. I really like my blog to have a more sarcastic and humorous vibe, but sometimes I can't help but feel more raw about life. Every day I wake up and wonder if my daughter will live to be a teenager. I have nightmares about it. I've seen other people have to live that nightmare. That fear that has been placed upon me because of Mallory now trickles to my other kids. I constantly wonder if there is something worse wrong with them. What if I lost one of them? What if I lose her? What if I lose my husband?
I do my best not to live in fear and just live.... but somedays I wonder how. I'm a stay at home mom. I get up every day, look in the mirror and say "this is as good as it's gonna get". My dreams are on hold. My inspiration seems gone. My motivation... forget it. I worry about hospital visits. Making doctor appointments. Scheduling surgeries. Getting my medical equipment orders in on time. Bills. Will we run out of money? How do I keep the boys from feeling the stress? Etc, etc, etc. It doesn't seem right. How do I balance my fears, my family and my hopes and dreams?
All I can do is go to bed tonight and dream about the day when maybe I can help my daughter change the world, while I'm taking life changing photos and running a grilled cheese restaurant.