1 day

Last night, going over the agenda for today looked like I was not going to have time to breathe today. I was all in a panic that I would be up until midnight packing for a flight I would have to be ready to go out the door for 2:30am.

Two of my personal training appointments called and cancelled. That opened up my afternoon quite nicely. I was able to pack myself, do the never ending pile of dishes and clean my bedroom.

I also managed to sell some travel while I was at it. :)

Now I just have my afternoon program, and one last appointment at the Y for 8pm. That's not too bad considering I'm already packed.

Robbie has been so miserable the last few days I feel like taking him to the airport and coming back home... I understand the stress. He worked from 11am to 11pm on Saturday and then went back in on Sunday 6:30am to 2:30pm. That weekend schedule is enough to make anyone grumpy. Add the stress of packing and it all makes complete sense. It just stinks that I am the one who he growls at. :)

But I'm trying to be optimistic. This vacation may give me food poisoning, but it is a week alone with my husband. And that I could use.

I have a new nightgown that I have not even seen on myself. I hope it lights the right sparks. I would really like this to be more of a romantic holiday than a vacation full of booze and excursions.

I guess well see. See you in a week!

7 days

7 days and I will be on a beach with my husband

7 days and I will lie in bed and trace every curve of his beautiful face, listen to him breathe, appreciate his strength when he holds me. All without ever looking at the time

7 days and it will not matter what our room looks like because everything is bigger than our room right now

7 days and I will be swimming with my fishie friends

7 days and I will have someone else cook 3 meals a day, and do the dishes

7 days and someone else will clean my room

7 days and I will be making love to my husband without the need to contain my volume

7 days and I can read an entire book without having to read the chapter before to remember where the hell I was in it

7 days and I will be drinking Cuban beer and lacing cigars for my Robbie

7 days and I will visit a country where people know the true meaning to struggle and have nothing. I will witness true poverty and remember just how very lucky I am.

Robbie said it best last night. He said this holiday isn't about the vacation.... it's about getting away. Amen to that! As I have said before, I am really not all that excited about this vacation for the sense of a holiday... I just want to get the fuck out of this country.

7 days.....

takes a big person to be little.

So I got my forms signed by my physician, but not before he made me feel so small, until I cried.


Who knew getting assistance for being little would be so hard. I have been through hell and I deserve a break. I am not manufacturing anything. I deserve this as much as the other more visibly challenged people.

Robbie informed me that he isn't going to the audiologist until we get back. Huh. That would have been nice to know earlier. I would have waited a little more and prepared better. Oh well, it's done now. I have also asked Sick Kids to send me a letter of diagnosis confirmation. I hope their records go back that far. That plus my half filled in Doctors note ought to do it. Yep he filled out half the form but signed it. I'm sure if I fill out the parts that he has missed, if they call him to confirm he will never remember what he wrote anyway.

This tax credit is worth a lot of money to those of us out there who have a disability. Through this experience as well as the rest of my life experiences to date, I have come to agree that they pick certain people to go through things like chromosone disorders, hearing/sight/mobility disabilities. We get up every moment and fight the fight. Lots of mornings I wake up to start my day and think... I dont really have to do this, I could just quit my life and stay right here.. but that would mean quitting on my kids, my husband and most of all myself.

I think loving yourself is the hardest part about being different that everyone else. It's hard to love what you see in the mirror. Then as the years go by you start to move forward from how tall you are or how big your head is compared to the rest of you. You start to love you for you.

This life has been a journey. I wouldn't change one layover, one missed flight, one cockroach motel.....

Well maybe the cockaroach motel

ironic

being born with a rare chromosome disorder you learn to fight the fight.

I am 4'9 (and three quarters) I weight 100lbs to the mark. I have the face of Russell Silver syndrome as we all do (like downs or any other chromosome disorder) and for a bonus I have many of the complications of the disorder.
- vision loss or impairment
- learning disabilities
- Anxiety / Depression
- ADHD/ADD
- mobility due to limbs not being equal
- bowel abnormalities

and this is the short list.

So when my tax guy told Robbie and I about this new tax credit the government came out with I figured hey finally a way to re-pay me for my childhood. Boy was I wrong.

It seems that having a syndrome does not prove that I suffer in my everyday life. -are you kidding me?- I now have to go to my shady family doctor and sell him on the idea of signing this form. I have booked the appointment for later today. I feel like I'm going into an interview. Isn't that silly.

I get so anxious at night that I hardly ever sleep through the night, about what I have no idea. I also have 70 year old knees in a near 40 year old body due to growth hormones taken in my teens - who knew the effects on some of these drugs in the 70's-. One eye is terrible. I cant retain anything new the first time round. list goes on and on.... HOWEVER without the shady doctors signature on the application there will be no tax break for me.

I see this doctor once a year to renew my birth control. 1 in 300,000 people land up with this disorder. He probably has no idea what I'm talking about...

Wish me luck!

14 days

That's the number of days until we go on holiday for a week to Cuba (again). I should be happy, I should be packed 4 times over by now, I should be dancing around my room to Cuban music... but I'm not. Infact I could really care less about this whole thing. Is that strange?

Robbie has been so miserable the last week that spending anytime with him lately isn't pleasant. Wow this is the first time in 6 years that I have complained about him in any way. That has to mean it's pretty bad.

I keep telling myself that it will get better, that were in a rutt and things will calm after a fashion, but it sorts itself out for a day.. and then were back at the beginning again.

Robbie's colleague at work had a stroke a few weeks ago. He's Robbie's age and build. He has lost all use of his right side, cant speak at the moment but thank god is still alive. He will never work again, drive again, ride his motor cycle again. Never.

I consider this as I think about my grouchy husband. If Robbie couldn't do for himself, he'd be miserable. I am thankful for our health. Thankful for our age difference so that I will have the means to continue to work a very physical job while caring for him through his later years.

I cant see myself living without my Rob, but at the moment renting him out would be an entertaining thought. No exchanges, he's the only man I want.... just a little less right now.