Monthly Archives: June 2011

I’m alive, and well…

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Last night while Hugh and I were having dinner under the big tree with the twinkle lights on our back yard, we talked about everything.

Hugh and I met almost 19 years ago in a country western dance bar the used to be in Thornton (very north suburb of Denver). I had left California and had a plan to do six months in Denver, then six months in Chicago, six months in Boston, and then six months in Baltimore. I figure it takes six months of working and living somewhere to see everything. I started in outside of Denver, because I knew the General Manager of the bar from California.

Hugh enjoys country music. It has always been a bit twangy for my tastes. With the exception of the beachy guitar music that is out recently. I absolutely love Kenny Chesney and the Zach Brown Band. The only thing we haven’t dropped on our list to do things this summer is the Kenny Chesney concert at Red Rocks next week. Last week, when things were tricky here, Hugh wanted to sell our tickets and use the money to do something else this summer. I refused. By god, we were going to do something we planned to do!

So, we still have our tickets. Hugh is taking off the next day, just in case we do an all nighter with the middle Mr Marrs and we are going!

You know, it is funny. Our fifteenth anniversary backing up to my twenty-fifth high school reunion was hard. Usually I am very successful not having circumstances of our life define our life. But for some reason, those two big mile stones derailed me. I couldn’t figure out a way to make the plans we had work. And that sent me down the “I really miss the person who could hold everything that was important in my little bitty bag from Mexico” hole. It has taken me a few days, and a couple of sleeping nights, but I have found her again.

She happens to live in Ken Caryl, with her very understanding husband, three beautiful children, and one silly puppy.

Change…

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You know what is delicious for breakfast? Fries! Ok, don’t judge me. I just snuck a couple of fries that I made for Danny this morning…yummy!

I think that Lacrosse Camp is wearing out Jack. I had to wake him up this morning at 8am so we had enough time to make it down to the park so he could learn the finer points of the game this morning.

I have embraced the sleep pattern. Yesterday, after six months, I finally changed up the therapy times to better fit in with the hours we are keeping. It used to be, the earlier in the day the better for therapy. Now, not so much, since he is on his second nap from 5am until 9:30am. And just like the other two, Dan needs a couple of minutes to wake up before he starts his day. Hugh did the shift again last night. My hands are feeling better this morning. It is amazing how quickly I can recover when I get a couple of days in a row of eight hours a night. We have come up with a plan to get us to the end of the year, and another one to get us through next busy season in case this lasts that long. It’s ok if it does, Danny is getting the amount of sleep he is needing, he is just getting it in shorter bursts. This would be so much easier if he was an only child. Where I am struggling is how to reconcile the hours he is keeping with the hours the other two children also need a parent.

Dan is not the one who resists change…it’s me… Change is good…change is good…change is good…

Guess what was in the mail…

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So, this afternoon, Hugh and I received the most thoughtful anniversary present from my father and evil step mother, a gift certificate to Bacco (the little restaurant that Hugh and I just had dinner at a few nights ago).

I am going to explain why this was so thoughtful. First of all, they live in Florida and when they come out it is very tricky for us to go out to dinner when they are here. I think we have only been out once with them about a year ago. While the menu is fabulous and the food is yummy, more importantly, it is also super close to home so we can dash back if there is an issue. So, not only can we go on a date night, with wine, we can also order take out for tomorrow night’s dinner.

Just when you think that folks have really no idea the amount of hoops that have to be jumped through just to do something as simple as going out to dinner, you are surprised.

So, we are going to celebrate, a little tomorrow. We are going to toast with a glass of champagne that one of Hugh’s clients brought back with him from a French Embassy party, and takeout from Bacco. At least I will have something super yummy to drink when I am up with Danny… And while we aren’t in Italy or Paris this week, we can be just like Jimmy Stewart and pretend a bit.

I took the night off…

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Last night Hugh forced me to take the night off. Danny still got up, but Hugh did the shift. I was tired enough to just roll over and shut down my inner control freak.

Danny has never slept well. When he was an infant, he would sleep for two two-hour shifts. Over the years, we had sleeping times in-between the non sleeping times. The sleeping times have been because of heavy-duty meds, but usually when we have a bad spell of not sleeping, we know there is an end to it. Historically, they have never lasted more than twelve weeks. Now there was no telling how much time we would get in-between, but we always got a bit of relief. His funny sleep pattern is one of the reasons we have tested him for Landau-Kleffner Symdrome Click here for Wikipedia’s short and sweet defination

Except for when he was ill, Danny hasn’t slept since December. How cool is it that I can go back on this blog and track his sleep pattern? (sarcastic font intended) So what do we do? We have changed up his meds and nothing is helping. Is this a result of hormones? Growth spurt? Seizures? His wonderful pediatrician and I have talked about it at length a few times. With all of the testing we have done for this kid, the why he doesn’t sleep is a mystery.

So, back to why Hugh gave me the night off. We had a long chat last night. I have officially canceled all anniversary celebrations for tomorrow. I was in the store yesterday morning, looking for something to make for our anniversary, and I got depressed as hell. Everything we were coming up with to mark the occasion, was just reminding me how we weren’t celebrating. Now, usually I try to spin things positively. I am a firm believer in you choose to be happy or you choose to let life get you down. It is becoming harder and harder to choose the sunny side of things. I needed to get more than two hours of sleep in a row. And I have finally hit the level of exhaustion to give up some control. I cope with stress by trying to control the uncontrollable, and pretty much everything else. I believe that I can fix things if I can just control all the variables…crazy huh?

So, moving forward, what do we do? I really don’t know but I am staring to see side effects in my health. A few days ago, I mentioned a neuropathy I get sometimes. It is a constant “pins and needles” feeling that starts in my fingers or toes. If I don’t nip it in the bud, it travels up my arms and legs. It is better when I get some sleep. My sleeping really has to be off for a long time for this to kick in, and that was the big red flag that “I had crashed into the wall” – not that I was crying in King Soopers.

So, we will ride this wave for a bit longer and see if it works itself out. If not, we will be making some changes. Mostly around how I staff my house.

“Sleep deprivation is the condition of not having enough sleep; it can be either chronic or acute. A chronic sleep-restricted state can cause fatigue, daytime sleepiness, clumsiness and weight loss or weight gain. It adversely affects the brain and cognitive function. Few studies have compared the effects of acute total sleep deprivation and chronic partial sleep restriction. Complete absence of sleep over long periods is impossible for humans to achieve (unless they suffer from fatal familial insomnia); brief microsleeps cannot be avoided. Long-term total sleep deprivation has caused death in lab animals.” FYI- I hate it when I am reacting in a textbook fashion….

I am running on … Well, I don’t know what I am running on…

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Quite the productive day! I was able to dash out this morning when Dan was still sleeping and hit the grocery store. Jack is loving lacrosse camp! I am hoping he will consent to me washing his shirt for tomorrow. I managed to organize the Ken Caryl Foundation’s stuff that I have just thrown into boxes for the last few months.

Katie has a couple of girlfriends over. Right now they are walking the rambunctious puppy for a couple of minutes. I am not sure who is staying over for dinner, but the food always seems to expand, it is amazing what throwing together a quick pasta dish will do for that.

Dan and I are dueling computers right now. He woke up for the day at 10:30…just a couple of hours down during the last thirty-six. I don’t know how he does it, especially since I need to have the caffeine by IV right now to keep my eyes open. This is the worst part of the day for me. In a couple of hours, I will catch my second (or third) wind and be up for the duration. But until then, it is amazing that I can get dinner on the table…yawn…

I need a night nanny…

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I am too old to pull all-nighters. I am not sure when it happened, but I have become one of those old folks.

Unfortunately for me, I have a peanut who loves the quiet of the night. It is about 8:00am, and he has yet to sock out for the night…sigh…

So, meds are no longer working. They didn’t work great before, but they aren’t working at all now… I think it is time to flip my clock. I can totally do it. I actually used to prefer to go grocery shopping and get my errands done after a bartending shift. I think it had as much to do with having the cash as the stores being super quiet. The only downside I can think of, is how to parent the other two during regular hours.

Oh, I know what I need…a night nanny! I wonder how you would advertise for such a position? “Wanted: A responsible adult to hang out with gorgeous red hed as he defies the world around him and never sleeps. Must be willing to drive, because you are going to need to prove that Jumpstreet and Chick-fil-a are actually closed in the wee hours of the night. A background in professional poker or bartending prefered but not necessary.”?

Time to rally the troops. Jack has Lacrosse camp this morning and we still need to get his mouth guard fitted…

It is 8:10am…now he sleeps…yawn…

Cooking group…

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We are home from our neighborhood cooking group. We had to dash out a bit earlier than everyone else (sitter issues), but it was lovely to get out for a bit.

This evening we had yummy Thai food. Very, very tasty. Hugh and I were assigned dessert, just in case babysitting fell apart. I put Hugh in charge of research. He went to his favorite Thai food place, which happens to be across the street from his office. After checking out the menu, he noticed there was no desserts offered. He spoke for a minute with the owner, and she recommended vanilla ice cream. Score! We could totally do that. And since it is a cooking group, instead of buying Bryers, we opted to make some.

Sounded like a plan. We own an ice cream maker. Little bit of heavy cream, little bit of half and half, a little bit of vanilla, rock salt, and ice…we are in like flint.

Yep, until I plug the thing in. Dumb thing didn’t work…rats! So Hugh hand cranks it for about 10 minutes. Got us no where. So, he grabs his keys and is off shopping for a new maker. (I thought it would be easier to just buy the Bryers, but… you know). While he was gone, I pulled out my hand mixer and voila! It worked…

We had to dash out before dessert, so someone will have to share if it was any good. (I would also love a review of Margaret’s ice cream…it looked yummy).

Parking…

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I am planning my week. One of the things that I need to find an hour for is running down to the dmv to renew Danny’s disability parking placard.

For those of you who haven’t done this before, you need to get a form, take it to your doc, have them sign it, and then run back to the dmv, wait in line for an hour to pick up your free parking privilege. And let me tell you, I love that we are able to park close to anything that we do. It means I don’t have to carry the 80 pound kid too far when he decides he just can’t go any farther. And, just so you know, I can’t just leave him at the curb and run and grab the car to pick him up so he doesn’t have to walk. It also allows me some room to maneuver the stroller without having him in traffic if we need to use it.

One of my biggest pet peeves is folks who park in those spots. Now, I am not as annoyed with the people who are so inconsiderate to just park there and leave the car. Yeah, I figure they will learn that lesson in their next life.

The ones that make me the most crazy, are the people who tell themselves “it is just for a minute and I am not leaving my car, so it’s no big deal…” You know what…I don’t care that you are dropping off your kindergartener and are running a bit late so you will just be here for a minute… Nor do I care that you are picking up your child and that is the most convenient space so she sees you as she exits the doors from camp… And I also don’t care that you are waiting there to pick someone up as they exit the store because you had to run in for a couple of things.

Until you have had to plan your month around renewing your placard, stay out of the damn spaces.

A typical Saturday morning…

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Another super fun dinner with friends. Next week…fish tacos…let me know if you are around, there is plenty of room for everyone!

A quiet day here at Casa Marrs. Hugh is off for his run this morning. Mulligan is on my foot, he has given up trying to take off his “cone of shame”. Katie and Jack are catching up on the chores that they blew off this week so they could be on summer vacation. I won’t see them for a while, the state of their rooms is atrocious. Danny is quietly watching his ipod in his bed, not at all ready to be up and at ’em.

I am really looking forward to the afternoon. I am ready for some quiet time myself. I had this funny neuropathy start about seven years ago. Loads of tests, but we have always done the testing when was not in a flare up. It has started again this morning, in my left hand. I used to think it was associated with stress, but now I am not so sure. We’ll see, if it quiets down during the next week, I will move on, if not…lots of doctor appointments again to see if we can pinpoint the cause of this. I am “waiting and seeing”, since I don’t have a lot of confidence that the docs can undo the puzzle, and truthfully, it doesn’t seem to be more involved than being unpleasant.

Off to start my chores…do I know how to party or what?

It didn’t matter that Dan didn’t sleep…

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…it was so totally worth the date night. Hugh and I went to Bacco, a lovely little restaurant with tasty food, nice wine, and a patio. It was so nice to get out with my husband for a couple of hours.

But we paid for it. We missed the magic window. Have I told you about the magic window yet? There is a magic window for us to get Danny to sleep. It is when he is sleepy from all his meds and right before his tummy starts hurting. Last night, we totally missed it. He was up until after midnight and only slept until 4:30…sigh…Poor Hugh is doing his “long run” this afternoon. I was up with D last night (while Hugh was snoring on the floor right in front of us…) and then did the 2am shift of Danny maintenance, that there was no way I was starting my day at 5am so Hugh could run.

There are times where I have no idea why he isn’t sleeping. I know something is wrong, but I don’t know what it is, and he doesn’t have the language to tell me. And then there are nights like last night. While they are inconvenient, I know the cause so I don’t worry too much. We just buckle in and enjoy the ride.

On the plus side…maybe he will sock out early this evening when we are having friends over and I can take another few hours off. Keep your fingers crossed!