Monthly Archives: August 2011

a Danny-ism….


Just a quick Danny-ism I wanted to share before I dash out to get some errands done today.

Danny didn’t sleep. that’s no surprise.

One of the four words he has now is “mom”. Sometimes it’s “mom”, sometimes it’s “ma”, sometimes it’s “mamamamamama”. but through all his regressions, we have kept “mom” as we kissed all those other words good-bye.

So anyway, last night Dan popped in with a “mom” and had me come and keep him company last evening. He wanted a drink and his iPod. I settled into my favorite spot on the floor in his room, right in front of the door so just in case I doze off he can’t get past me without waking me up.

Last night he was bouncing from the bed to next to me on the floor to the bed…well, you get the picture. Finally, he sat on the bed. “MOM!” and patted right next to him. Ok, super cool, the bed is so much more comfortable than the floor anyway. I hop up. He snuggled in. And then “tents” us under the blanket.


This was the same little boy, who at two would turn his back on you when ever you entered a room.

And who Dr Hill told us a thousand years ago, “it’s possible that he may never treat you differently than the rest of the world…” HA! if she could see him now!

Just another typical after school afternoon…


I think this may be the first time all day I am able to sit for a minute and catch my breath. Holy Ike, what a super busy day.

Hugh is laying down on the couch, completely enjoying the pain meds the dentist gave him today.

Jack and I made it through homework this afternoon with only four meltdowns. A bit of back story on Jack, he struggled to learn to read. It took a while, however, once he got it he went from reading nothing to reading at grade level within six months. But it was a painful process. As a result, he will shut down if he doesn’t immediately understand something. Right now, that happens to be parallel lines and geometric shapes. Sigh. Hugh is usually never home during homework time. Today, he was listening in from the other room. He thinks he may have had the easier afternoon. I tend to agree with him.

Katie phoned when school got out today, cheer has started and could I please come and pick her up at 4:30. Not the most ideal time for me to run out of the house, you know with Hugh flying, Jack and I in the middle of a power struggle, and Danny winding up for the evening. But, of course, you can’t say no. I had been telling her about how hard it is when you start a new school and everyone knows everyone else. I asked her to keep a look out for those kids who may be by themselves. I suggested that she walk up to those kids and introduce herself to them and try to start a conversation. You know what? She was totally listening to me. Every night during dinner, she shares a story about meeting someone new and how she met them. It does the inner shy kid in me so proud…”of course you can stay and do cheer, honey” is coming out of my mouth before I realize what I agreed to.

But everyone is home. We have had dinner. Homework is done. And Dan is down for a while. Time to put my feet up and take a deep breath until all the craziness starts all over…

the universe will make you pay if you don’t carpe diem…


Karma bit Hugh in the fanny today.

I finally talked him into playing hooky and doing a quick nine holes. It is a beautiful Colorado day. And since fall is just around the corner, these lovely warm temperatures won’t last long.

He cleared his calendar and jumped in the car.

And now he is spending the afternoon in the dentist’s chair. He needs to have an emergency bridge.


Darn Karma.

All he had to do was not make me argue with him about taking some time to himself. ūüôā



Such a super fun evening.

We were lucky enough to fill out a table at a charity event tonight.

What a fun time with friends. And what a neat charity to support. This was a charity that is funded by realtors that give grants to families of children with life threatening illnesses or chronic conditions.

You know what?

My life rocks!

Sleepiness nights and all. What an amazing life we lead.

We have lovely home, with fantastic friends. The kids are kind hearted. And Danny is in a super stable place right now, who is loving middle school.

We have a super life. Even with the cards the universe dealt us and all.

So, we bought a few bottles of wine we really didn’t need, and a Chick-fil-a gift certificate that we are sure to use.


We ended the visit with a bang…or an explosion…



Ok, maybe I don’t have the very best attitude when people come to visit, but I am always so glad to get my life back. I think it is tricky to entertain people, even under the best circumstances. But throw Danny into the mix and it spells for a stressful time.

This is one of the places where I have a tough time reconciling what our life could have been with the cards we were dealt. I would love to be able to leave Katie in charge so we could get away for dinner. Or even, leave the kids with their grandparents so we can have a date night.

But, not so much is that our life.

I am always amazed by who gets our life and who doesn’t. My step mother, Denise, hasn’t a clue. She kept saying just the most inane things this weekend. My father, at least has read up on mito and can have an intelligent, well thought out discussion about where Danny is and where he may go. But, they always seem to be surprised when our life doesn’t resemble a Holiday Card.

Danny had a tough night last night. And it started a 5:00pm. It was the last evening of our visit, and I belive I gave them a quick hug good-bye in between running up and down the stairs trying to get Mr Marrs to bed.

So, here is the conclusion I have reached. Even traveling down to see them for a couple of days over spring break next year, I am going to need to bring help. And I am going to need for us to get our own space. And truthfully, there are other parts of the country I would rather see as long as I am bringing help and getting a hotel room.

So, spring break plans are in the air again…

You look tired….


Your know what you should probably never say to a woman older than 24?

Or to a mom of a special needs kid?

“You look tired”

Ya think?

I have covered the grey, so I think I look ok. I guess, maybe, not so much.

It’s too bad, really. Because I think this is as good as it gets.

I am totally sure Denise meant to convey concern about the demands of our life, and not to imply that I need to have some work done. But, maybe I do. Problem is…when to find the time to actually get it done

She asked me today if I have ever checked into a hotel with my book and comfy pj’s. Could I take the nite off? No, not really. Who would I leave D with? His dad? Dad already does the 3:00am to we have to get up and start our day shift. I don’t think it would be fair to have him do the starting at 10:00pm shift. And then to ask him to follow that up with going to work to fiscally support us is a sure-fire way to drive him into the arms of another…

So we muddle though, and hopefully don’t goof up the other two kids too much because we haven’t slept eight hours in a row for a dozen years…



You know what they say in middle school? TGIF

Yep, that’s what Mrs P taught Dan as I picked him up this morning. TGIF. I am not sure Mr D understood her, but he was sure willing to sign along.

Well, here we are. At the end of the first week of school. The week totally ended better than it started. Unless you happen to be my wonderful husband. His father in law and his wife are in town. I think we made it thirty minutes before we (ok, he) was asked, by my step mother, how much he made. For all the grumping I do about his famiy, he totally pays me back for the three days a year he has to put up with my father and his wife…it’s a good thing that he loves me…and that my father only believes in parenting (or grandparenting) once a year. And like fish, only for three days, because I am sure that is exactly what Mr Franklin meant, visitors…in-laws….it’s all the same.

It is always amazing to me how someone could have an opinion about our lives when we only see them once a year for a couple of days, and we chat on the phone very few months or so. But they do, and they don’t hesitate to share it with us. At least it seems to be positive this time, but we are only one evening into it. We have two and a half days left…

Rotten paperwork…


I am missing book club this evening. It is probably a good thing. Ok, no not really. I really was looking forward to this evening’s discussion.

But it is a good thing as well, I am in a tough spot right now.

My wise, wise husband pointed that out to me this evening. And I can’t argue with him.

Some times of year are trickier than others. School is ironed out. Dan is totally loving it. The other two are transitioning well back into the grove of having to be somewhere every morning. So, it’s not school.

My CES packet came a few days ago.

Danny is enrolled in the Children’s Extensive Support Waiver of Colorado Medacaid. We qualify for the waiver that only supports children who require institutional level of support twenty four hours a day. And we get to do our paperwork for redetermination annually. Basically, I get to completely describe my day during a twenty four hour period. And not the G rated version. You think going back and seeing in writing how many times I comment on Danny not sleeping can be depressing, this totally tops it. And then I get the privilege of having a twenty something year old look at me with pity when she reads it and we come up with a treatment plan for the year…yipee!

Yep, I totally look forward to this every year…super, super fun!

Time to fill my glass…I am thinking with a lovely red.

How our nights are different than yours…


I know I talk about not sleeping a bunch.

Hugh and I hear all the time about kids who don’t sleep. By talking about our not sleeping, I am trying to show you the difference between our life and one with all typical children.

I don’t know if Danny not sleeping is something we would do if he happened to be typical or not. I used to think it absolutely had to be related to the issues he faces. Now, not so much.

Miss Anna has two beautifully typical children who don’t sleep.

I think Danny wouldn’t have slept either way.

The difference between my life now and what my life could have been, is at almost 12, him not sleeping would probably only disrupt his life for hours at a time. By this age, he would be able to hang out in the middle of the night by himself.

But, the universe had different plans. So, I hang out with him. Doing some sort of physical re-direction every fifteen minutes or so. Some days the redirection is constant, those are the really bad nights. Last night, not too bad…realitively. We averaged a redirection every fifteen minutes. Those are the quieter ones. None of them allow us to cat nap while we are up. He could get into too much trouble before I was aware of what he was into.

So, last night I made the call not to switch shifts with Hugh at 4am.

Some days it is better for me to just do the whole thing. I have a harder time with the not sleeping if I try to catch a nap. It takes me a while to unwind after being “on” and I manage to not hit REM sleep.

On days like that, I just stay up. And do my day. And not drive after noon, because there is not enough caffeine and I am too spacey to be in control of something that could do real damage should I flake out for a bit.

So, there you go. In the spirit of why I started this. A more than G rated version of our nights…

Embracing the less than two hours of sleep…


Busy, busy night. I think we haven’t heard from Katie, but it is still early.

Jack had a nightmare and crawled into bed with us around 11:30. That was an invitation to the puppy to have all 70 pounds of him join us. We have a strict no dog on the bed policy we try to enforce, even at night.

Apparently we were making oodles of noise with our “shh” and “no Mulligan”… Dan came in at 12:17…Yay!

So here we are three hours later.


And I have book club on the books for later tonight…

I was so hoping to get out this evening, but I expect it will be a no go.

Have I told you how much I love book club? But, today is going to be one of those days that I shouldn’t drive after one or two in the afternoon. And I can’t catch a ride because I can’t trust that Dan isn’t going to need me to run back home.

Just Rats!

Oh well, there is always next month. Maybe the planets will align and I can get out.