Sing, Sing a Song, Sing it Loud, Sing it Long.

Alright, tonight I was singing songs to  to the girls at bedtime. For the most part singing the kids to bed has become more of a task than something I do for enjoyment, or as auto-correct interprets... French ointment. Occasionally though I find myself getting a little more into it. I wouldn't go as far as saying it's dad style when he really fluctuates his voice and sings loudly with gusto. I mean more like thinking about specific people in our family or tender memories that just pop up into my head. Sometimes when I start singing the songs that we always used to sing together it totally makes me emotional. Which I hate being emotional. Tonight I was singing that Beatles song, "Who knows how long I've loved you?", "Leaving on a jet plane", "Dream a little dream". I couldn't even get through leaving on a jet plane.  I think my trying not to cry ended up keeping the kids awake more then it helped putting anybody to sleep. I'm so grateful that we have those memories though there is one night that comes into mind particularly when we were in the car really late at night. I can't remember where we were going.  We were singing edelweiss in a round or whatever and then we got done singing Will was like uh, hmmm, uh that was pretty good. We were all thinking we were pretty freaking amazing. Isn't it crazy the things you remember? Listening to grandpa and dad singing on road trips together. This makes me want to go on a road trip really bad! It makes me miss being a kid. I hope I give my kids opportunities to have those kinds of experiences. Those solid kinds of memories. It's just the good stuff. I know I am really lucky. No one else in the world has a family like ours. For me, our family is just as good as it gets.

Wake Up

If you had to live the last year of your life over again, what would you do differently?

Is there something you wish you had done? Do it now.

Is there something you regret. Stop doing that thing.


love you both.

This is going to make you cry, but I have a point:

WELCOME TO HOLLAND

by 

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


A friend sent this to me last week and I thought it was great, it has a re-orienting effect on me when I read it. I think just about any parent, or person really, can relate to this. I think I spend a lot of time numbed and tired with spasms of energy and anger. And honestly I'm not sure if there is a resolution that I should come to, like in the poem it talks about "the loss," but what exactly IS the loss? What will Maddie be like? What opportunities will she have? Literally--no one knows. Today Maddie has been on one, I don't think she feels very good. All say she has been grunting and crying at me and she kept slapping her face and her head--no matter what I did I couldn't get her to stop and in this one moment I grabbed her hand and I wanted to squeeze it so hard--I was so angry at her little hand--not her, her hand. In this world where I want to blame someone for everything from cupboards left open to stupid thing said--who do I blame for this? Autism is not my enemy when she is happy, I feel like we do a good job cooperating then. I so appreciate her quirkiness and the little strides she is making, her routines...but when she is unhappy--I feel like Autism builds a maliscious invisible wall around her and I'm unable to help her, unable to make it better and unable to find someone to blame...all the while Autism keeps slapping her face.

In short we had a really bad morning. The waitress brought her a grilled cheese sandwhich with white cheese! Who does that? Who makes a grilled cheese sandwhich with white cheese? Now I DEFINITELY have someone to blame for that. But you know, life moves on and tomorrow is a new day.

Yes yes...many tomorrows have come and gone since I wrote the above post! Maybe it's a tad depressed sounding but it's also real for me so I'm posting it anyway. I absolutely do not want anyone to feel bad for me or pity me, but I do long to be understood. Truly understood...then again, don't we all? Miss you guys to pieces and pieces and pieces.

A new year, the same old me....

Written before Christmas:

I know what your thinking. I have really screwed the pooch on the whole blog thing! I don't know how long it's been, I just know it's been too long. 

Well it's freaking Christmas. I love this holiday. I love the traditions I grew up with as well as the traditions Troy and I have begun within our own family. It's been fun to experiment and try out new traditions too. For instance, dad did not put on his child size Christmas tree socks over his thick tree trunk legs and sing "Oh banzai bush...", nor did we carol down the street or watch Will give Heidi a white wash. Although they are all truly excellent memories and traditions, it's fun to start new ones. We went to our cousin Emily's live nativity on Christmas Eve and I loved it. I thought it was totally sweet and tender yet short and imperfect. Macy wanted to be a star along with Jax and Jaders. I just love holidays, I love the hussle but I really love the imperfect moments that just make it so amazing. 

 

A few weeks later (today):

I hate starting a new year! I hate how everyone's is on a war path to "a happier healthier you". I want to be thin, I want to budget and save, I want to be cheery but I just don't want to start right now. It's too much. It's just too much. I try to get through the day without going crazy. I don't want to have to "stop drinking soda" or "spending money" or even "no fast food I'll just have a piece of lettuce, hold the dressing". I hate it all. I'm an overweight mom. It's the way it is right now. I will make my own changes on my own time. I don't need anyone to recruit me to their water aerobics class or join a Zumba class. I'm good. 

To top it all off we woke up yesterday morning. The kids were in bed with us and we were laughing about something then Macy says "hey mom, did you know when your walking in front of me your butt (this is where she motions in a large circle referencing my massive rear end) jiggles! Did you know that?" Hmmmm......... Well......... Hmmmm...... I guess I kind of assumed it did but thanks for confirming my suspicion!

Then this morning we were in bed and the kids are in bed too of course. Avery wraps her hands around my neck. I smiled at her. Our eyes locked. We were having a moment. Then Avery says "your breath smells like mayonnaise." Seriously?!? Mayonnaise? That's possibly the grossest thing I have ever heard! IS there anything worse that Mayo breath? I don't think so. It seems a little harsh! Considering how disgusting I find mayo. Yes, I think it was  quite harsh. Kids keep you humble. That's for damn sure.

A few photos from the live nativity:

Cleansing, Pity, "the Blues," "the Bloat" and other useful conversation stoppers.

First I miss you both a lot. It ain't the holidays without you.


I have some thoughts and questions, and the only way to start is to start.

 I might be a selfish person. I sort of don't know what to do about this. Is it something I can fix? I generally do not like people and so for me to say "do something nice for someone," as a way to combat this selfishness, is not realistic.  I just won't. And then I will get angry, resentful , guilty and proceed to feel bad about myself. Are there some nice doable things to help me get started? Like, I now always take my shopping cart back to the cart holder parking lot thing. That is a nice thing, right? Technically it is just obeying rules, although I like to think it helps the guy with a limp who's job it is to gather them up.  My point is that that is my level. Probably beginner/novice level.  Any thoughts?

I have to talk about my health status probably at least 3-5 times a day. Based on something that was said to me a couple of days ago about some people being a pity vortex, :) I have done some self reflecting and am a little horrified by my neediness in this area. I have to talk about my health, and all I need is for someone to say "oh, I'm sorry, that stinks." That is all, I can then get on with my day.   I have to talk about my health, I have to tinker, I have to obsess. What would happen if you kept drinking water and drinking water an drinking water, but never peeed? well that is what is feels like to not talk about my health.
 There is a story by Tolstoy- about this old guy who is dying and in pain, and how no one shows him sympathy or empathy the "right" way,  meaning the way he WANTS to be pitied. (He wants to be treated  like a little sick child, but since he is old no one treats him like that) so he is sad boo-hoo. My next question is Do we all want the same kind kind of pity? We definitely need to get sympathy the way we find it personally acceptable, right? How do we administer sympathy the right way to different people? Or is sympathy or pity obnoxious and just the same as looking down on people? And finally, it is so gross to NEED pity. But I do. I NEED I NEED I NEED. help.

THe last few days I have been SO tired.  More tired than it is possible to describe. There is not enough caffeine in the world is what I am saying. This happens every couple of months and isn't cycle related or sleep or sick related...it is just weird. Sometimes when this happens, I am mean. For me Tired is Anger and is also probably depression.  Any Thoughts??

Gluten free

Do I have a wheat problem or just a idiot problem? SO I got allergy tested. And guess what? I am totally not allergic to any foods.
So then I eat wheat and it gives me the runs and hurts my belly. I don't get it. Also not eating wheat has been not a big deal EXCEPT when I am with others that are not my family.
I hate being inconvenient, and it has made me realize how much pressure there is to be, to eat, to behave a certain way because that is what others or what we imagine others to want us to do/be. I am the "easy going non-demanding person, and I feel like people actually hate it more when I am demanding, because I am not supposed to be. knowhadimean?


a cleanse

I am going to try this Marfa Stewfart detox thing in order to figure me out
a. it may answer nothing
b. but i am curious
c. i want to lose a few pownds
            but
e. it might make me mad
f. it might, and I quote, result in something called "the bloat" but just for a little while

Anyone want to do it too??  It is for 21 days. I suspect it is one of those things that might be fun/ less terrible to do with other people.


I have totally changed around almost all the rooms in the house and this makes me feel good.

Are repetitive behaviors indicative of a very large thing I am trying to avoid?


so there.