I have been collecting random thoughts over the past couple of weeks and am going to spit them out here in a semi-coherent paragraphs that probably don’t flow all that well. If anything just plain doesn’t make sense, I’m sorry but I have been sick for a couple days and I’m not thinking very straight. In fact, I gave Nikki’s phone number to a client today on accident after mistaking it for my fax number. Nikki – if you get any calls from a really old guy who is confused about a reverse mortgage, just transfer him over to me and I’ll take care of it.
Encino Man holds up well. Much as Brendan Fraser stood the test of time in this classic comedy, and thawed out of an ice block to be the coolest high schooler in all of Encino, CA, this movie has stood the test of time. I hope that a copy of this movie gets frozen in a glacier and that in 30 years or whenever the glaciers are gone, someone discovers it and gets as much joy from it as the Encino high school community got from Brendan Fraser.
Brendan Fraser hasn’t done anything in a while. I have seen efforts going so far as a petition to put him in a movie, and I don’t really understand why he left Hollywood. Was George of the Jungle too hard to follow? Was Monkey Bone a career sinker stinker? Did he get tired of being confused with that other Fras(i)er – Kelsey Grammer? I know he’s been in some movies recently after briefly taking my precious time to review his wikipedia page just a second ago, but why such crap? Where is the latest “Son in Law” or “The Mummy?” I don’t know and I don’t have an answer.
Someone I went to college with posted on facebook that she was looking for a wedding photographer. In my experience, we had two. We got married in Portland, OR and had our reception in KC, and had separate photographers for each event. The guy in Portland specialized in what he called “organic wedding photography” (omg kill me). The guy in KC specialized in nothing and took photos that we paid money for. The guy in Portland called the night before the wedding and told us that he didn’t think we would have good light and could we maybe get to the wedding site at 5:00am to catch the sunrise? He had leather over-the-shoulder-gun-holster style camera straps and jumped around catching the most organic angles he could but not really taking traditional photos of the family or bride like we wanted. He then took like 3 months to get the photos back to us but wouldn’t let us download them at first despite us being the owners of the photos according to the contract. He was fantastically expensive, his photos were great, the experience was shit, and we hope to never talk to him again. The guy in KC stayed in touch regularly, let us decide which photos we wanted, never said the word organic, was cheap, and got the photos back to us quickly and in a format that worked really well and without any argument. Since then, we have looked at our wedding photos maybe a dozen times, and all of those times were within the first probably 2 months after getting the photos back. Lesson: don’t spend too much on wedding photos. I’ll attach a few below for you to look at.
I really hope people don’t feel sorry for us. Sometimes I talk to people who know what’s going on and I get the impression that they are really sad about Mira or us or our family, etc. I don’t mean to take away from people’s feelings, because everyone is entitled to feel the way they want to feel, but I am always just hoping they don’t feel sad for us and that they can get a chance to be with Mira on their own and stop being sad because SHE IS F****** AWESOME. Not only is she the singular most spectacularly beautiful child on earth, but she is also really funny, sort of bad, a little demanding, and generally really super happy. She wakes up smiling, she “talks” the whole way to school, she is so happy to arrive at school and see her friends as they run up screaming “MIRA MIRA MIRA,” teachers and staff come to visit her all day long from other classes, she talks the whole way home, laughs all night at about anything, and then screams for about 30 seconds before falling asleep next to her stuffed animal. She is a joy to be around and makes everyone in the room happy.
I can tell you honestly that we aren’t really that sad most of the time. Sometimes we are, and I think all of the time we are deeply concerned and a bit sad underneath, and that we think about her all the time, but generally we are pretty happy. We are in big thyme love at our house, and if you could see me running around with Mira chasing Nikki and helping Mira to kick doors and peek around corners, you would see that we are living a life that is normal to us and we love it. We do “grieve” some aspects of her life, to be fair. We grieve the idea that she will probably never talk and be able to tell us she loves us, or that she will probably never walk or be able to purposefully or adeptly use her hands, or that she may not fall in love the way we have, or drive a car, or whatever else, but she can live a full life with depth of emotion and courage and strength and happiness and love and we will do whatever we have to do to give that to her. And while we have our moments of tears and mourning over those things, they do not consume us.
I encourage everyone to come hang out. Mira loves company and she is SO cool to be around.
I don’t know how people with “normal” kids do it. Maybe its because I have an almost 17 month old infant, but when we are with people who have “normal” kids who are running around and screaming and pushing their parents just to see what happens I wonder how on earth we have survived as a species other than being sheer masochists. That being said, we want more kids but I have to say, it is terrifying to think about. What if they are brats? What if they are super hyper and moody? What if they aren’t that but they are just the normal energy rate of a toddler? I really don’t get how you people do it, but good on you for making it happen. I know that Mira would absolutely love having a sibling.
Nikki is a bad ass. We hear people express sentiments from time to time that go something like “Mira is lucky to have such good parents.” And, I will tell you, those sentiments are correct. Many kids with special needs are not born to parents who are smart, compassionate, empathetic, financially “okay,” and connected in ways that are beneficial for effectively obtaining care and treatment. I feel really horrible for those kids and want to help them however I can and am trying to think of career moves I could make to do so. But, while I do think I am generally a pretty good Dad, I think that Nikki is an amazing and incredible Mom. If you see her, know the following: she works full time and is KILLING IT, she cleans the house and cooks (we share these tasks), she has a social network of fun and quality friends, she doesn’t lower her personal standards on how she wants to look and present herself to the world just because she may be busy or tired or whatever, and she 100% always always always advocates for, loves, gives herself completely to, and seeks out opportunity for our daughter. She is always researching Mira’s condition, researching treatment options, researching therapies, reaching out to other parents dealing with this issue, and reaching out to and coordinating with Mira’s care providers. She is also constantly playing with Mira, seeking stimulating activities for her, and trying to enrich Mira’s life. She is amazing and never seems to tire in her dedication. It is incredible to watch and I could not be any more proud of her than I am.