Life with Fragile X Syndrome

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.

Don’t you just hate it when work gets in the way of the rest of your life?  I’m a corporate paralegal and though I have a limited client group compared to most (only 1 client) they’re a very busy, very large group.  I am responsible for 5 publicly traded companies and their approximately 450 privately held subsidiaries.  There are about 20 different real estate, corporate, litigation, environmental, intellectual property and tax attorneys who also work on this group and my job is to keep track of everything they are doing at all times.  Right now we are in the final week of preparing for a fairly large deal.  Just a smidge over $130 million will be changing hands.  Man, I wish I worked on commission.  ANYWAY, I will be back to posting  and commenting on all your sites consistently after the deal closes.

Happy Easter!

Monkey is clearly feeling better since yesterday.  It’s so nice to see his “spark” back!  Last night Duhdee and I were sharing a hug in the kitchen.  Monkey was in another room watching TV but his radar went off and he came running to break up the lovefest.  You see, in this house, only Monkey should be hugged.  It’s quite amusing to us to hear his little feet pounding on the floor as he comes running to find us.  We’re always snickering and waiting for him to come around the corner with his big, saucer eyes.  We’re so naughty, we shouldn’t torture him.

Anyway, Monkey came running to break up the hug, as usual, but this time instead of merely separating us by a few inches he decided I needed to be removed from the room entirely.  He must have suspected that we’d just go back to hugging once he left to return to his show.  So little man put his hands on my lower back and gently pushed me out of the kitchen and into the dining room.  Then he must have decided it was FUN to make Umma move so he pushed me around the dining room table and right back into the kitchen where Duhdee was still standing.  Hmmm…not acceptable…so he pushed me back into the dining room, around the table and then into the hallway.  He finally stopped when I was about a foot from our bed. 

The whole time we’d been giggling and I turned to look over my shoulder at him and asked “Now what?”  He stood back a bit and yelled “BOOM!” which is what Duhdee makes him say before he tosses Monkey onto the bed.   “Boom?” I asked.  

Monkey grinned at me and suddenly pushed me, face first, onto the bed!  “BOOM!”  he yelled again before dissolving into belly laughs.  I couldn’t help but laugh in return and so we both lay there on the bed, howling with laughter and Monkey was looking me right in the eye (!) as we did.  It was such a funny and sweet moment.

I know, I shouldn’t ecourage the whole “pushing” thing but it seems relatively harmless.  Right??? 

I checked my e-mail today and found an e-mail from YouTube Support thanking me for reporting a server error.  At first I thought it was spam but then I looked a bit closer and saw that someone HAD sent YouTube a report, from my YouTube account, stating “kk ll.”

First of all, there is only one YouTube user in this house and, secondly, there’s only one person in this house who types like that.  I can’t believe Monkey’s sent in his first support ticket and he’s not even 4.

We’re back to crappy sleep here but there is a reason.  Monkey and I are sick, oh the joy! 

We’ve managed to come down with some sort of virus that includes a racking cough, fever and a general feeling of yuckiness.  We’re both tired but we can’t sleep well because we’re so uncomfortable.  Work is so very busy right now that I can not stay home.  Even worse, I need to work late most nights.  Monkey has stayed home from school with Duhdee all week but it doesn’t seem to be helping.  His temp is below 100 but he is very whiny, very tired and not sleeping.  Poor Duhdee, it’s a wonder he hasn’t taken to drink!

I refuse to end this on another sour note, it runs contrary to my need to find the silver lining.  Hmmm…well isn’t this a pickle?  I can’t think of anything new or fun to share! 

I guess I’ll just settle for a sweet moment Monkey and I have begun sharing in our time of sickness.  Monkey has noticed that, although we are really strict about making him sleep in his own bed most of the time, we relax our standards when he’s not feeling well.  As if to further sweeten the deal, however, he has taken to pausing as he crawls over me to find an open spot in the bed just long enough to give me a nice cheek to cheek hug.  It takes me long enough to recover from my moment of “Awww” for him to plant himself securely between us and pull the covers up to his chin.  Only a monster could remove him from the bed at that point 😉

That’s all I’ve got.  I’m a sucker for a sick Monkey 🙂

I’ve hit a rough patch here. We had another appointment at the Fragile X clinic and they always throw me off no matter how nice the folks there are. Having to outline, in great detail, all the ways Monkey isn’t “normal” really gets to me. It makes all of the Fragile X stuff seem so much bigger than it is in our every day lives.

I always end up spending too many hours after the fact dwelling on all the questions the Dr. asked and my answers. I second guess my answers, did I overstate or understate the positives and negatives? THEN I start to second guess whether we’re doing all we should for him. Should we have him enrolled in more therapies, more activities? What therapies? Should we be doing more vitamins or supplements? What vitamins? What supplements? Have we totally screwed up by letting him watch TV? We never used to allow it.  Is that why he can no longer pay attention to an entire story?

Uh, well…I think you get the idea. All my insecurities and fears get really big and try to drown out the really good stuff, like the fact that Monkey spent a very pleasant evening with us and his paternal grandparents last night. He will normally not stay in the same room with them but he did so last night with a smile. I’m trying really hard to focus on that right now.