Monthly Archives: July 2011

Just so you don’t think I am perfect…

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It’s Sunday evening and the family is hanging out. This is going to be one of my “bubble posts”

Today was not one of my most spectacular parenting days. Katie, who is almost thirteen, behaved pretty typically and pushed our buttons. She is a lovely and very responsible young lady. Too responsible. We are always on her for doing too much and not just being. I would rather she be almost thirteen than always feeling responsible for her brothers. I know, super funny thing to complain about.

And then there is Jack. Jack today complained that we treat Danny differently. That he doesn’t have to do the same amount of chores that he and Katie do. He said it pretty loudly. And he is right. I lost my temper, and Hugh sat down and had a man to man. He explained that Danny can’t do the same things that Jack can do and if Jack wants us to treat them the same, then Jack could no longer go up to the Ranch House and play frisbee golf, play baseball, or play in the front yard with friends without mom being right there.

I think he got the picture.

One of the things you should know about me, I yell. Would I rather be the all calm mommy all the time. Oh, you bet. But it’s not me. I lost my cool today and yelled. At the kids for being stinkers At my husband because I am just convinced that I can’t parent.

Even though Hugh tells me over and over that I should not let it get under my skin, the argument he had with his family (especially his sister) really got to me. And on days like today, their questioning our choices unnerves me as I try to get all three of them to adulthood.

And….there goes the bubble…watch it float away…

Timing…

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Well, it’s a new day.

My darling redhead slept last night, giving me the opportunity to as well. But, not so much. I had a tough night. I don’t think I slept solidly until after the sun came up. Bless Hugh, he got up with the puppy this morning, allowing me to catch a couple of hours in a row.

Having my life defiantly has its advantages sometimes. There is no way not to be super busy. Danny had us at the pool yesterday for an hour and a half.

That has been so much fun to watch. It was such a hard winter on him. We lost so many things, and we started the summer so weak, only able to swim for twenty minutes. But his strength and endurance is building. Swimming is my yardstick. It is something he really loves doing, and will agree to do it daily. So we swim every day. We love “swimming”, “swimming please”, “ten”.

I have the three best kids. They were very patient with me yesterday. Sadly they have had experience with this.

So, here is the educational part of my post. The how my life differs from typical families. This one is about timing. Everything we do requires planning. And most of the time staffing. And, since our therapists also have lives, sometimes it can be tricky.

I have heard through the grapevine about the service. Most people are able to wrangle a sitter or bring their children to something like this. Not me. And I would like to go. So, that said, it is time to start planning. Katie is awesome, but some times of day, are harder here than others. And I need to be certain that there is the right kind of support here. And truth be told, only a couple of ladies that I have in my house right now, fit that bill. So, I have quietly been asking for a time-table, before it is finalized, to allow me to make sure the gals that who can handle being here for more than an hour and a half have time to clear their calendars.

When I got back home the other day from driving downtown, Danny was in such a tizzy, our therapist couldn’t calm him down. Now, some of that rests on Danny’s shoulders, but much of that was her fault too. It shouldn’t have escalated to the point of massive power struggle. There are a few different times things can be turned around before it reaches that point. And once you get there with him, it is more than a few shifts to not have Danny jump right to power struggle when they walk in the door.

Because of the behavioral inexperience some of my gals still have, Hugh and I have been making a point of not being gone for more than an hour and a half lately (if we do get out). But that won’t be the case this week. And we are too close to starting a new school to fall into this behavior pattern.

But truth be told, we will work it out. And if we end up with a much harder end of summer, that’s ok. It’s not like we haven’t been there before.

Things I wish I didn’t know…

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I have a knowledge base that most people don’t have.

I know every word to every Barney and Wiggles song ever made.

I know that it is easier to do out-of-state doctor appointments in one day whenever possible so we can sleep in our own beds.

I know how to read medial journals and studies.

I know that one of the most heart wrenching songs played at a funeral is Barney’s “I Love you”

I know that even the most stubborn doctors will allow you to accompany your baby through places where they “don’t typically let parents into” to keep them from being too scared.

I know that no matter how hard you work, sometimes there is no cure.

And I know that sometimes you don’t get to see first dates, first time on a two-wheeler, proms, high school graduations, first loves, first heart breaks, your children on their wedding day, your grand children, or all of the normal “every day life” magic. My dear friend Kim lost her battle with cancer last night.

life lessons…

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I have been sitting here this morning, on and off for a few hours, trying to decide what to post about today. And talking about the “treasure” my wonderful 65 pound puppy Mulligan was teasing me with, just didn’t fit my mood today.

I am going to talk religion, or at least my beliefs for a bit. Read to the end before you decide to defriend me. And if I do lose you, it was great having you be a part of my life for a while.

I believe in reincarnation. Not only does it appeal to my inner control freak, but it also helps me reconcile my experiences with a divine presence.

I think you make a choice on the life you get (because, honestly, no one would be this unlucky). Your soul chooses the lessons it needs to learn. Believing that way has helped me reconcile the things I have had no control over.

So, you all know I grew up with no money. My parents divorced when I was very young and my mother was an abusive alcoholic. (but you would expect that knowing her history). She didn’t stop drinking until I was 16 and her second husband threatened to leave her. Now it wasn’t enough of a motivation for me to go, but her husband…that was the straw (insert eye roll here). And truthfully, while I haven’t yet made my peace with her, it has totally influenced the parent I am. I go the complete other way. The kids are first, above everything. Even Hugh.

I made some bad choices in my late teens. One of the most spectacular, was I dated an abusive guy. It was tricky, but I was able to get out of that with only a few missing teeth. I count my self lucky that I didn’t go further down that road. Life lesson learned there as well, although it took dating (and eventually marrying) very nice and kind men to work past that one.

One of the hardest life lessons I still sometimes struggle with is the “even if you do everything right, sometimes the cards don’t fall your way” lesson. You have to do the work to even have a shot of things going well, finding a cure, ect. But sometimes, that’s just not in the plan. Not matter how hard you worked, or how much money you were fortunate enough to throw at the problem.

But, on the other side of that lesson is also “the stop and enjoy the journey” lesson. There is no prize at the end, so you might as well enjoy the butterflies and flowers as you are on the road. And, truthfully, I don’t know many people who slow down to enjoy the path unless they are forced to.

I believe that people come in and out of your life when you need then most. Even the ones that make you the most crazy are trying to teach you something. And they will come in and out of my next life as well. Because we are all connected

So, I hope you are still around for the next post, but I completely understand if you choose to step away.

Thanks Ang…just what I needed…..

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So Hugh can home and tried to talk me out of the tree. And it helped. Hanging out with Melinda before book club also helped. Texting Anne helped as well.

But you know what did the trick?

A random posting from Facebook from an old high school buddy. Well, not old. She is so much younger than I am. All of a sudden, in the words of Kenny Cheasney… “I go back….”

Back before I had to be a grown up and deal with grown up things.

Funny thing is, I am sure she isn’t even aware that she did this for me tonight.

Ang, you rock!

The magic quote? “Fat, drunk, and stupid is no way to go through life!”

Don’t judge. It worked!

put it in a bubble….

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So, seven months and almost 20,000 hits ago I started this public blog. I was trying to do my part to educate the world about our life, I was thinking that if I could give just a few people a glimpse of our day-to-day existence, maybe they would share and by the time Danny becomes an adult, the world would change a bit.

Then we lost Janie.

Kim’s cancer became worse.

So it also became a place where my children could know me better. Let’s face it, it takes years to understand decisions that the adults make in your life when you are a kid. Because of how tenuous things can be, this was also serving as a message to my children when they were a bit older. I was hoping to explain the why we do the things the way we do them, just in case.

Somewhere along the way, writing this and putting it into cyberspace became cathartic. Similar to “putting words in the bubble and watching the bad float away”

Providence, fate, or maybe even divine intervention caused Alexis to call me just a bit ago. I was not in a happy place. I woke up ok, at peace with waiting. But as the day went on, not so much any more (waiting has never been a strength of mine) And my peace is being replaced by a sadness.

So, don’t stand too close to me. You may get caught up in the bubbles I am trying to let go…

It’s a new day….

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I am sitting here this morning, trying to decide what to write.

This blog has now become a habit, so sometimes my posts are fairly mundane. But, since I tell Jack to just start writing, and not worry about it, here it goes…

Hugh and some of the office is off to a Habitat for Humanity worksite today. I envy him the opportunity to do something physical. I have mentioned before, I take on home improvement projects when I am stressed. I would think that working on a build site would be the ultimate in home improvement projects.

Intrestingly enough, not what Hugh does for stress. He buys t-shirts and runs.

Just a typical summer day with the kids is on the books. I am needing a couple of hours watching my boys swim at the North Ranch pool today and soaking up the vitiman D. I am so hoping the weather cooperates.

I am going to leave you with this song. You can thank my dear, dear friend Julie. Because of her this morning, this song is now running through my head.

I hate doing nothing…

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Just a quick post before I call it a day.

I am hanging here with a 65 pound puppy on my foot, trying to unwind from the day. it was a tough one. Not as hard as some people have had, but still tough.

Tonight was lovely. Jen has a beautiful home and really went out of their way to make us all feel comfortable. One of the things I love about this neighborhood, is how we draw strength from each other. There is something to be said about just being together when things go south.

Ok, the puppy is running up the stairs to see Hugh and then down to see me. I better call it a night before he wakes up Dan. You know, even if that happens, I suppose D and I could hang out in St Joes Cafe so I feel like I am doing something.

I hate doing nothing, I have never been good at it. I actually err on the side of offending, because I hate feeling helpless.

You either hate that about me, or find that endearing.

an out of sorts day…

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My dear friend Kim is losing her battle with small cell cancer.

Once Mariah came this morning, I grabbed my very good friend Anne and we went down to the hospital. Not to intrude on the family, but to hug our dear friends. We made it down there and met Danielle and Vicki in the cafe for a few minutes.

When I got home this afternoon, poor Danny was all out of sorts.

He didn’t get to go jumping, or swimming and boy was he letting Mariah know how very grumpy he was to be stuck at home waiting for mom. A quick run to Chick-fil-a and things were better. Or at least quieter.

The neighborhood is getting together tonight to just be together. I am hoping he is agreeable to us being gone again. I have a feeling that things will be out of sorts for a week.

If prayer is something you do, shoot a quick one for Kim and the pain.

Denise…

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This morning I was thinking about my dear friend Denise.

I met Denise almost eleven years ago. I was a volunteer for the Autism Society of Colorado coordinating a resource fair. I was put in touch with Denise who was the faculty advisor of the Golden Key Honor Society at UCD at the time. We became friends.

We were friends when she and her husband went to the Ukraine to meet and bring home their twin children. We were friends when I would come a give an informal lecture about being a parent of a special needs kid to her students. (I ended meeting amazing young women that day). And we were friends when she was diagnosed with gastro intestinal cancer.

She beat it into submission.

And then it came back.

She passed away in the fall of 2005.

I miss her.