Wednesday, August 22, 2007

no vacation

We're back from our vacation. We lasted LESS THAN 24 hours.
There were many factors that influenced our decision to come home early: the non-stop, unabating rain, for starters. Jonathan's mood (and potential to meltdown) was the big reason. The wee kids were active (loud) and aggravating Jonathan's already delicate mood. Greg and I cut our losses and headed home. Luckily, we were close to home....

Sometimes, fragile x just sucks.
Those of you who read my blog who DON'T have kids with special needs might not understand this but it's HARD sometimes. I KNOW he can't help most of what affects him. Right now, it's his meds: the cocktail was working until about 9-12 months ago and for some reason, his appetite just went berserk. Like he's not happy unless he's eating 24-7. I am not kidding. We're talking a 50# weight gain. On a frame that is 5'9", he's just shy of 200#. And he gets MAD if he doesn't have food. I mean REALLY mad. I feed him healthy foods and decent portions. It's TOUGH wen the meds are as bad as the symptoms sometimes...

It's such a delicate balance.
And it wears on me sometimes.
Like when I am trying to have a vacation.....

Would I cure Jonathan, if I could? Probably. I am one of those who's concentratng more of my energy on treatment. I applaud those who are searching for a cure, but for now, I just need ideas on how to make it through the day (or a vacation).

We're adjusting Jonathn's meds and HOPING that the adjustments over the next weeks will dim (ad/or eliminate) his roaring, insatiable appetite.

If you're praying type, please say a prayer for Jonathan.
And for me, too. My husband will be leaving soon for military training. He'll be gone while we deal with the med issues. And also school is about to start. And I have a million business things to do...

It's like The Perfect Storm. (I say that smiling.)

The day's not all bad. I had a great dinner. A friend stopped by. He's in love and oh so happy. I won't name him here but let's just say his last girlfriend was a bit of a psycho and he's SO much happier now.

Tomorrow is a different day.
And I am sooooo glad.

8 comments:

Linda said...

Oh...I'm so SAD for you! You should have called me...you could have had a little phone vacation, anyway. Glad to hear Mr. X is in love again, and not with psycho!!!

Anonymous said...

I am soooo sorry you didn't get to vacation. The disappointment can be tough. I will definitely pray that God will send someone to help you in your task as single mom and that the doc's will figur out the meds soon.

Punkin's Oma

the other lion said...

you are a great mommy. i will pray for you and your family. it's just too stinkin' hard some days!

PattiB said...

Suzanne-
I am sorry to hear your vacation was cut short. I will pray for a gentle calmness for Jonathan and for peace for you. We are already back at school this week so I know the tempest you are about to enter!!!

FXSmom said...

I think Matt will be like that with food someday since he already kinda is. I know that disappointment and it sux. I'll be sending a prayer for him...and you :)

Kristiem10 said...

I'll be praying for you guys. We took a vacation two years ago, and came home early because everything was a new transition, and too hard for Drew to handle. It was lots of work and no fun. I understand your frustration. Hugs to you.

Kate said...

Hi Suzanne- I was just reading about your vacation and was wondering if you'd consider writing an entry for the Family Vacation Group Writing Project I am hosting at babylune until the 31st of August. It sounds like you've got the material, you could even make your entry a collection of links to earlier posts about planning, taking and coming home. The prize will total $1 for each participant. If there are 50 participants, the prize will be $50, etc. So far, there have been three entries, but there is still time for that to go up!

Peggy said...

I'm so sorry your vacation was cut short and that the meds are making even more difficulties with your son...I admire your strength. Will be thinking of you.