BasicallyFX

Do not tell anyone but, last Friday, I played hooky!  I knew it was going to be a slow day at work and I desperately needed a break so we dropped Monkey off at school and we came home.  We had a nice relaxing morning and then decided we should take Monkey to the Museum of Science during the afternoon.  Duhdee was not very optimistic about the entire outing, he seemed convinced that it would end badly but I bullied him into going along.  I knew Monkey would at LEAST enjoy the ride on the T, if nothing else, so I thought we had a decent chance of a successful outing.

I was absolutely, thoroughly (and disgustingly proud of it) right.  The ride on the train was thrilling.  We even got to ride on two different types of trains just to get there.  Anyone who thinks it isn’t exciting to commute in this city should spend 5 minutes on the train with my child.  It’s pretty darned clear by watching him that this is the BEST THING EVER!  When we got off the train we got to walk along a busy street and see the traffic speeding by.  There were cars and trucks and duck boats too!  We walked across a bridge that rumbled beneath our feet which was exciting but only in hindsight.  During the walk across it was fairly tense but as soon as our feet touched solid ground on the other side he looked back with his face lit up.

As we approached the building we saw a giant DINOSAUR and we learned that dinosaurs apparently whisper their roars in Monkey’s world.   The doors to the museum spin and you can push them, unlike the doors at Children’s Hospital where if you push them they stop moving which is not fun at all!  Once inside there was the Archimedean Excogitation kinetic sculpture to study and there were escalators running up and down 3 stories.  We visited a space capsule and Monkey lay down on top of me in one of the seats and checked out the control panel.  We visited an undersea exhibit with computer generated fish and sharks, so many buttons to push!  We even spent some time playing with a tornado.

After we left the museum we went back into the city and had dinner before we left for home.  Initially, they were going to seat us in the middle of the very busy restaurant but I’ve learned my lesson from other trips and asked for a quieter seat.  Monkey was perfect at dinner.   I think it was one of the nicest dinners out we’ve ever had despite the slow service which normally causes all sorts of problems. 

After dinner we caught the T back home, it had been a long and busy day and the train was very crowded but Monkey sat on Duhdees lap and snuggled for nearly the whole trip.  At the very end he decided he wanted his Umma but I had nowhere to sit so we ended up standing together at Duhdee’s knees for the last few minutes.

It was so nice to have a nice outing with no tears from anyone!  I wouldn’t have blamed Monkey even a little bit for being grumpy on the way home, he was so very tired, but he was a superstar! 

This may seem a bit odd to people but I still haven’t been tested for Fragile X. It was one of the very first items brought up by the geneticist I met with in the weeks after Monkey was diagnosed but I was not able to think about it at that time. I was too focused on what this news meant for Monkey. I didn’t have the emotional energy to think about what it meant to me.

Since that time I’ve periodically given some thought to being tested but never reach a conclusion. I am vaguely worried about what having the test in my medical records could mean for me. Genetic test results are well protected in Massachusetts and in Maine, the two locations I will likely spend the rest of my life living in, but that is not the case in many, many other states. What if I decide to move to another state? What if that decision is made for me by my career or some other situation I can’t yet anticipate and I move to a state where it is legal to discriminate based on genetic information? What if I move, only to find out that I cannot obtain insurance for myself or my son because of the testing?

Other than that fear, there is a bit of “What does it matter?” involved as well. I am what I am. Is there a reason, beyond curiosity because my insurance won’t pay for that, to establish whether I’m full mutation or carrier?

What do you think?

Monkey is, without a doubt, a mama’s boy.  He will do and say things for me that he will say to no one else.  Sometimes I’ll ask him to share a new word or a new skill with Duhdee and he ignores us.  Sometimes he’ll even be doing something particularly cute and as soon as Duhdee walks into the room he will stop.  I know it won’t always be this way.  There are things he does with Duhdee that I can’t do with him.  There will be more and more of these activities as he gets older, I’m sure.  So for now I store away little nuggets like this to carry with me later:

From school, Monkey was on a walk with his class after recess.  As they approached the driveway at the front of the school where we do pick-ups and drop-offs he said, clear as day “Mama.  Home.” and he pointed in the direction that we drive away.  One thing that is particularly funny to me is that I never do afternoon pick-ups, those are Duhdee’s responsibility!

I hope no one feels judged by the following. I do not judge the decisions others make, I’m simply going to discuss the decision that my husband and I have come to regarding our family circumstances and how we’ve gotten there.

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We could be in real trouble with this boy.  He has always been a flirt, he comes by that honestly, Duhdee, in his single days, was a notorious flirt.  He made his living by flirting really, he was a bartender. 

So I shouldn’t be surprised that Monday’s report from his teacher was that he had a great day and that he was being very flirty but good grief!  He is an adorable little guy with curly hair and those cheeks!  We’ve been told many times that he looks like a little cherub. 

So good looks, coupled with this propensity for flirting with every little girl (and some not so little girls!) can mean only one thing.  Ladies, lock up your little girls!  Don’t say you weren’t warned.

I am back.  I’m just struggling to get back into a routine of any sort!  I spent all of last week working and complaining that I was just so tired and, really, it doesn’t get much more interesting than that now does it?  Finally, I smartened up and decided to take a day off!  Sheer genius at work here.  So on Friday I very purposefully did not go to work but I had to turn my out of office assistant on so I logged in remotely and…2 hours got sucked away.  Wooosh!  See what I’m saying about the genius thing?

Since prying myself away from my laptop mid-Friday morning, I’ve been trying very, very hard to remain away.  We had quite a lot of fun on Friday as a result.  There was lots of laughing and tickling and chasing.  Then Monkey came home from school.   Ha!  I’m kidding!  Anyway.

We’ve had a lot of good ‘ole clean family fun since Friday but I had to go back to work this morning so I guess my standoff with my laptop is over.  I’ve got my feet up on the coffee table, I bribed Duhdee to walk the dogs for me and I’m all settled in…now to go see what everyone else has been up to!

Last week is officially the week that wasn’t.  Holy moly.  I worked 41 hours of overtime last week alone. 

I have to say, I feel totally lucky to have two such fantastic men in my life.  Monkey handled a very tough week like a champ!  I only got to see him for about 30 minutes each morning as we got ready for school/work but he held it together and did really well.  I think I cried about it more than he did. 

Duhdee was also a superstar.  He did everything last week.  I worked and slept.  Anything else that happened like dog walking, playing, cooking, cleaning, bathing (well, I did bath myself) was done by my amazing husband. 

We’re still bone tired, I’m hoping to take a day off this week (that’s already 1/2 over!) and just sleep for the 6 hours Monkey is at pre-school.  Maybe then I can come up with two functioning brain cells.