Happy New Year's Eve

Wow, its amazing how quickly time flies... that sounds ridiculous but it is true.  We had a wonderful Christmas and Emma was very happy with her new camera.  I think Brian is a little jealous but we agreed to get her a really nice one and that's what we did.  She seems to have an instinct for framing good pix.  Will be interesting to see what she can do with this bad boy.  Ronnie also got lots of stuff, primary clothes and stuffies.  I feel like she got cheated on the quality of presents but, hey, she is getting a completely new bathroom...

And the vegie tourtiere went off really well as Christmas.  My brother even took a slice and didn't barf.  He can be a little standoffish when you play with traditional foods.

As for me I've spent the last week at home with the girls watching all the movies and DVDs we received and just relaxing.  Although it has been fun I think I'm a little over-relaxed... having a hard time falling asleep these days.  Its not stress related but just not overly tired I guess.  Weird - I'm used to barely being awake at 9:30 to getting up a midnight and reading for 30 minutes before trying to go back to sleep. 

That's it I guess.  Not too much drama to relate.  Oh wait, I forgot: Mya our cute little beagle-cocker spaniel mix had a seizure yesterday.  Its the first one in like 6 months we think and she seems to be completely recovered thank god.  Now I need to figure out how to use a tajine (sp?) to cook our new years meal.

'til next year. 

Merry Christmas Eve

So its Christmas Eve and I've spent the morning baking tourtieres (both meat and vege versions) and enjoying my 12 year old daughter.  Sometimes i don't give her enough credit, but she really is a good kid.  She has a wonderful sense of humour and when she lets the crazy girl out, she can be a real hoot. 

And hopefully tomorrow she can get past the fact that she doesn't have a ton of presents but what she does have are good ones (a.k.a expensive ones). 

The complicité the girls are building together is really nice and I hope it will continue past December 26th.  I used complicité, but there is no real English translation for it; the closest would be connection but that's not quite right either.  Oh well,you get the idea.

My best wishes to everyone out there for a wonderful holiday season and may the joy and peace be at your fingertips the rest of the year as well.

'til next time.

All it takes is a little perspective

So yesterday I decided to stop whinning about our upcoming renovations and I'm glad I did.  When I checked out facebook later on, there was a post about a little girl with Angelman's who was in a coma due to constant seizures.  Wrote a little "our thoughts are with the familty..." and kind of forgot about it.

Well just a few minutes ago, I was back on facebook and there was a new note: Elayna, 8 years old, has passed away.

God bless her, her family and the extended community that took Elayna into their hearts and mourn for her passing.  She will be missed.

Mental altitude

So, I've whining on and on about this home adaptation project and I'm now officially sick of myself.  I hate being negative and I've been so stressed out with this whole process especially in the last few weeks that I'm having a hard time seing past it. 

I've decided that since I can't control the construction or the designer, I might as well get used it and let go.  The only thing I can control is my reaction and I'm done giving myself headaches about it. 

So here is a try at a positive spin:     I am fairly positive it will be a nightmare

But I will have fun with the girls and get to spend alot of time with them while they destroy my bathroom.

'til next time.

A snotty situation

Kids, they are so generous... Ronnie has been snotty for about a week now and Emma is somewhat congested as well.  I woke up this morning to Barry White sharing my bed.  Okay, not really Barry White but Brian's voice certainly sounded like this deep bass drum.

Overall the girls seem to be feeling okay (and thankfully I'm still healthy).  As we approach the Christmas holidays I think everyone is tired and just ripe for any little bug that comes flying by. 

As soon as Brian comes home I will be baking some cookies so hopefully that will bring a smile to everyones faces.

That's it. 'til next time.

Adaptations part 2

I can't believe it has been a week since I've posted - and here I had made a commitment to try to do it daily... maybe I need to be committed?  It's a possibility.  Anyhooo...


So, by the time I return to work from the Christmas holiday, we should full into our home adaption/construction work.  How do I think it will go?  I think it will be a nightmare.


We’ve been in “negotiations” for this for the last 5 years or so and we are still having problems.  For example, we've just realized that the designer had removed the vanity and medicine cabinet in our bathroom and we've purchased new and smaller ones to replace them.  However, our current lighting is attached to the medicine cabinet and that is NOT being replaced.  Why?  The designer apparently forgot to include it and since we've blown the 16K budget, we have to pay for the light and the installation ourselves.  Or we can choose to showing in the dark.  It's not that its expensive; we actually found a light for under $60 that we liked (that's what made us think about the light and ask what kind it was going to be), it is the principle.  This is her job; she should do it properly or take responsbility when she fucks up.  The designer's reaction?  "oh, I guess I forgot".


As a parent of a child with a disability, you end up asking for help from alot of different people.  Keeping your dignity while you are doing that is not always easy.  It was certainly not easy to admit that we could not afford to pay for the adaptation ourselves and that we could not afford to pay the 60K estimate that was given with the original proposal.  When you feel like you are being condescended to because you ask a question, it is not only frustrating but extremely humiliating.


On top of it, I tried to contact the various supervising units and they all abdicate responsibility – and refer us back to her.  Then Brian and I were arguing about how to respond to her.  I just want the woman to admit that she made a mistake and take responsibility for it – and he just wants to bury it and get the work done.  AARGHH

So, anyway, we hope to get a functional bathroom in which not only Brian but I can give Ronnie a bath on a regular schedule without hurting our backs. I'll let you know how it goes.


'til next time.

Adaptations

So we've finally made it through all the approval steps and are approaching the actual home adaptation work.  Tonight we have an appointment to choose what the bathroom will look like as well as the doors to the bathroom and Ronnie's bedroom.  I think we also get to choose paint colours.  At least I hope so.  We also get to choose a new vanity and toilet.  I'm thinking purple just to freak Emma out. :-)

At the same time we are going to try to change all the bedroom doors.  It would look kind of stupid to have two nice new doors and have all the others be this icky fake wood stuff they use to use 40 years ago.  We'll have to pay for them but as I said, it would be kind of stupid not to do so.

It is really interesting how the subsidy organizes things.  There doesn't seem to be any rationale about what is covered and what is not.  For example, a new back door is paid for but to raise/reinforce the deck that leads to the door is not covered...Tres weird...

This should be fun.  At least I hope it will be fun.  And I have a good idea of what I want. 

'til next time.

How tough are we?

So, I was reading another blog that commented on Robert Latimer recently being granted parole, and I added a comment "anonymously".  Robert Latimer, in case you don't know, was the father of a severely disabled young girl whom he "mercy" killed.  I put the quotes around mercy because I'm not quite sure how to describe it.  The blog I was reading described it as murder and he was convicted of second-degree murder, but I'm still not quite sure how I feel about it - explains why I posted it anonymously... sort of.

I think that unless you've walked a mile in someone else's shoes, it is very difficult to second guess a decision they make.  We may not agree with the decision/action someone else has taken but... the only thing we can control is our reaction to it.  Conversely, people are judgemental by nature: We make judgement calls on a daily basis from what we wear to what we eat or choose not to eat to whom we speak to and whose phone calls we decide not to answer.  Anyone who says "I don't judge people" is lying.

I can only guess that he and his family must have been at the end of their endurance and that unfortunately, social services and their support networks were not able to meet their pleas for help. At least that is what I'd like to think.  We, the parents of children with special needs, are a hardy lot.  However we all have our limits.  He and presumably his wife felt that this was the only way out for their daughter; that is incredibly sad. 

'til next time.

New wheels on life

So, I had a note from Ronnie's physical therapist yesterday.  They are in the midst of re-doing all of her evaluations for a revised EIP and apparently they are really putting her through her paces.  Anyway, they are suggesting getting bigger wheels for her wheelchair - so she can wheel herself around.

Yes, I did say bigger wheels so she can wheel herself around.... my brain almost exploded thinking about little Ronnie wheeling herself around the house and down the front stairs and into Emma's bedroom and then down the stairs to be basement.  Emma is deadset against it but that's because all she can see is Ronnie coming into her room whenever she wants; like a "regular" sister-thing she never had to deal with in the past.

I just see disaster after disaster... I have to put the brakes on the thoughts; it will take her quite some time before she can roll around the house under her own steam (so-to-speak).  In the meantime I guess her school is discovering that she is developing the skills needs to push the boundaries.  And so are we.

Good for her but scary for us.

 'til next time.

Life is good

So, I have to admit that lately things have been really good.  Ronnie is Ronnie: just herself and pure pleasure to be around.  Emma seems to have dropped the pre-teen anxiousness that has been pretty much the rule for the last several months (o.k.; maybe years) and 98% of the time is just fun to be around.  As we lead up to Christmas she's trying to be extra good by sucking up to her sister.  She keeps trying to sneak Gummie bears to Ronnie (she is a gummie bear freak).  Ron just thinks its funny and then you hear Emma whisper "don't tell daddy"... its really cute - would be nice if it lasted for more than a month, but...

 Because Emma is calmer, Brian is calmer.  We've really stuck up for each other in this instance (Emma's behaviour) and it seems to be paying off from all corners.

Does make for boring blogs, tho...

'til next time.