Life with Fragile X Syndrome

Monkey is feeling pretty cwappy.  The fever rears it’s ugly head off and on and his nose is like a fountain of snot.  When Duhdee called the teacher to let her know Monkey would be staying home again today she said she sent 3 students home yesterday with the same cold.  They were disinfecting the classroom when we called, trying to stop the spread of this evil virus.

The teacher also informed us that one of the assistants will be spending her last day in the classroom on Friday.  She has been given a promotion to lead teacher in another class!  We’re very happy for her but Monkey will miss her.  The class will have a permanent substitute for the rest of the year.  She will return to assist in the class in July for the summer portion (this classroom runs 11 months/year vs a normal school calendar year) so we’ll be seeing her again soon.

I am starting to feel pretty cwappy too, unfortunately, but I have closings this week so I’m at work.  Bummer.

What makes this a double bummer is that our new featherbed/topper was delivered yesterday and I was really, really, really tempted to stay home and just lay in bed all day enjoying it.  As it was, I retired to the bedroom at 8PM last night after putting Monkey to bed and surfed the net and watched TV in total comfort.   Our new, super luxurious, sheets should arrive today as well.  I may never leave our bed again.  *drool*

Yesterday, I read a few messages on the FX Listserve about Therapeutic Listening.  I quickly e-mailed the OT at Children’s Hospital and Monkey’s OT at the public school inquiring about it.  I got responses from both that same day.  I learned that my insurance will not cover it but that the school has someone who is trained in it and my son’s OT and teacher have both implemented these programs in the classroom before.  They were going to discuss how to add it to Monkey’s day at their team meeting today neither the OT nor the teacher saw any reason not to try it.

Woah.  This is a perfect example of how this school system can get things done when you have the right people involved.

Regarding my insurance.  It’s awful.  They will pay for us to take Monkey to the yearly evaluations at Children’s but they will not pay for a SINGLE service that is recommended. Not even if we get a letter of medical necessity.  They simply refuse to cover anything related to developmental therapies.  If we were to pay out of pocket for the extra OT for sensory integration that Monkey could really benefit from we’d have to find an additional $1,200/month.  If I ever won the lottery, I wouldn’t retire, I’d spend it all on therapy.  So sad.

We were busier than one-armed wallpaper hangers.

Saturday we did all the normal Saturday chores, deep cleaning, baking bread, laundry, etc. AND had a party which added baking cupcakes, blowing up balloons and stocking up on some party supplies.  We had a good time, it was just a busy day. 

We discovered that while Monkey has totally mastered the art of sharing OTHER kids’ toys he’s not yet mastered sharing HIS toys, lol.  Munchkin (the 4 year old cousin) was a pretty good sport about it and we did intervene.  Bratty behavior will not be tolerated Mr. Man!

On Sunday, we took a few hours to ourselves and then set off on our trip to Maine around 1.  We stopped to buy some more underwear for Monkey since he’s now in it full time during the days he needed a few more pairs.  We had to convince him that he could have three packages, he was quite content with one and kept trying to put the others back, silly kid!

We then drove on to Papa’s house.  Monkey was a little hesitant about walking into the house, it had been a long time since he’d been there.  Normally, we see Papa at my parents’ house next door.  Once we were through the door though he did great!  He said “Hi Papa” which thrilled my grandfather to pieces.  He played with the box of ancient toys (seriously, they’re toys I played with when I was his age and they were not new then either!) and explored the house  while I sat and chatted.  He wanted Duhdee to go with him on his exploration junkets, he was too hesitant to go alone, but we’ll work on that.  We’re planning to put in a 3 sisters garden on our plot of land next door so we’ll be up there a lot more this summer.

We stopped by to visit my parents for a little while but they’ve been sick and it was getting late so we headed out to find dinner and make our way home.  We stopped for a late dinner and Monkey’s head didn’t hit  his pillow until after 9 and he was in a great mood the entire day.  Amazing.  He bounced right up this AM and headed off to school happily to boot.  I wish I could say the same about me, lol.

We’re all so happy that the weekend has arrived. Poor Monkey has been very emotional all day…he’s just so tired by the end of each week.  We have some fun plans this weekend.  One of Monkey’s cousins (Grammy, we need a blog nickname for her!) is coming to visit tomorrow along with Grammy and her Daddy to celebrate her 4th birthday.

Then on Sunday we’re going to visit my family.  I really need to see my Papa.  He was diagnosed with Parkinson’s (most likely FXTAS though, I need to see if they ordered the FX test.)  I had a very vivid dream this week where he told me he was going to miss me.  Anyway.  A visit seems in order.  Monkey will enjoy seeing everyone and so will I.

Anyone want a dog?  He’s cute, see?

That’s the only reason he’s survived this long…he just pee’d on the floor.  Not in a puddle…but in a long, looping line that covered over 10 feet.  $#&*&^*%(*^ dog.  Why do I feel bad for yelling at him??  Click on the picture for the full size/full effect and you might see why.  $#&*&^*%(*^ dog.

Monkey is being such a little star these days.

Let me share some funny stories, all from today:

This morning at 6 AM Monkey came into our room, crawled into bed between us and settled in for his morning cuddle.  While he was laying there I heard him quietly say the name of one of the little girls in his class.  Twice.  Then he dozed off again.  Lovestruck?

While Monkey and I were waiting for Duhdee to clear the snow off the truck this morning before school, Monkey asked to sit in the driver’s seat of the truck.  He loves to pretend to drive.  He also loves to crank the volume on the radio, turn on the blinkers, turn on the windshield washers and put the truck into 4 wheel drive, lol.  He was being very good this morning and resisted the temptation of all those buttons.  When Duhdee reached the back of the truck to clean off the rear window, however, Monkey reached out and put his finger on the button to turn on the rear windshield wiper.  If he pressed the button not only was it going to freak Dudhee out but it would probably also spray Duhdee with washer fluid.  From the way he looked at me out of the corner of his eye and grinned at me, I’m pretty sure he knew all this too, lol.  When I told him “No” he quickly found something else to do.   The grin on his face still has me chuckling though.

After school today he walked up the front steps grabbed the snow shovel and proceeded to shovel our (already cleared) sidewalk.  When he finished that chore he then tried to convince Duhdee that it was time to get out the snowblower.  Duhdee is going to be fighting Monkey for control of that machine before long!

And, finally, this afternoon Monkey was prowling in the pantry and he noticed that someone (Duhdee actually confessed to doing this!) had left the sugar bowl on the wrong shelf.  He opened the sugar bowl, licked his finger, stuck it in the suger and ate it, lol.  For some reason Duhdee let him repeat this trick at least once more before getting up and moving the bowl to a higher shelf.  Monkey then ran, grabbed his stool so he could reach the higher shelf and grabbed himself another taste of sugar.  I’ll let Duhdee try to defend allowing this since he was the primary parent at the time, lol.

Today is a good reminder of how good our lives really are.

It was the stopwatch!  Monkey has been playing with it and he discovered a well hidden feature, the hourly alarm.  OMFG.  Despite the fact that we have the owner’s manual, Duhdee had to ask Professor Google how to disarm it.  Even those directions were wrong but they were close enough that Duhdee was able to figure it out.

That stopwatch is seriously out to kill us.  I always suspected that it was slowing down while we were on our runs.  I guess now that we aren’t running (too cold, too icy) it’s switched tactics.

So that feeling of not being unhappy but also not being *happy* is still lingering.  The other night Duhdee started picking at me because I’m all closed up, I get that way sometimes.  He pointed out that I’d been like this for longer than I had thought.  I told him that I thought it was the stress of the work presentation and that I was surprised it hadn’t lifted once the presentation was completed.   He agreed. 

This is the conversation that followed…

Duhdee…”What are you thinking?”

“I dunno.  I’ve been spending a lot of time on the computer, haven’t I?”

“Yeah.  You’re fine most of the day but after he goes to bed…”

“I don’t want to think.  I’m mentally exhausted.  I just keep looking for things to do so I don’t have to think.” 

“What have you been thinking about?”

*GULP* *Tears* 

“I’ve been thinking about babies…” 

End conversation, start deep breathing exercises and then find something else to think about.  Oh so productive, I’m sure Duhdee was impressed that I totally closed down and refused to talk anymore.

But it was productive.  Our neighbor (Cupcake’s mommy!) announced, a little over a week ago, that she’s pregnant with number two and we are so happy for her.  My secretary is pregnant with her first, she has the pregnancy glow and her tummy is now very prominent…she looks so happy.  So that feeling?  It’s grief.  No matter how happy I am for them, and I am seriously thrilled for them both, I can’t help but grieve for what Duhdee and I have lost.

It always surprises me when this rears it’s ugly head.  Each time I work through it I think I’ve finally, really and truly, worked through it this time.  I’m beginning to realize that this is just part of who I am and it is going to be part of my life forever. 

There are no magic pills to take away the sting of no more bio babies, maybe no more babies period.  There is no wand to wave away the pain of realizing there will be no grandkids.  There’s only hard work to find a way to be OK with the loss and, even then, I’ll still have to continue the work everytime it comes back to the surface.  It feels a bit like an endless slog at the moment.

I hate grief.