Wednesday, January 30, 2013

Who's the 'guy'? My key to life

The key to adoption, foster care, education choices, financial assistance and ultimately life is to ASK the question.

I would not be where I am today (albeit most think that is crazy town) had I not asked the 'guy' a question.  If you want something you must ask.  If you don't like that guy's answer ask the next guy.  If again you don't like his answer ask the next guy after that and the guy after him and the guy after him until you either find the right guy or there is finally no one left to ask and you must accept the answer you didn't want to hear.

There are exceptions to almost every rule and there is generally a way to make things happen but the answer will always be no if no request is made. 

There is no great skill in self advocacy or in securing what your family needs but there are rules that should be abided in my opinion.  They are as follows:

Always be respectful.  You want the 'guy' to want to help you or at least hear you out and maybe refer you to the next guy who can help you if he can't.  

Be empathetic.  Everyone has their area of responsibility and limitations.  Simply put, they can only do what they can do.  This does not mean you don't carry your quest further but attempting to push someone past their capabilities probably won't get you where you are trying to go.

Be knowledgeable.  With each 'guy' you talk to gather information i.e. he can't help you...why? Your request can't be accommodated...why?  Who has the authority to make the decision you are looking for?

Be grateful.  This falls under being respectful but can stand on its own too.  You don't want to burn your bridges.  Advocacy often times is forging relationships.  People talk.  If you present poorly and are unappreciative of what efforts the one 'guy' makes for you he's likely to pass it on to the next 'guy' which could have you losing a positive audience before you even get there.

Bottom line to all of this....ask, ask, ask.  More times than you know the answer will be YES!

I broke the bus.  I fixed the bus.  It is a modern day MIRACLE!

Turns out all things are possible.

Sunday, January 27, 2013


If cleanliness really is next to Godliness and it in any way refers to the condition of my house too then I am surely on the fast track straight to hell.

I hope I'm not lonely there...

Saturday, January 26, 2013

one of my many talents

"You're a good throw up cleaner upper" says the enthusiastic six year old

"Yes Dear, thanks.  Your Mama zgot skillz."

Friday, January 25, 2013

greatness comes in all forms

Well today Ailish would be turning 13.  Sadly she is forever 11.  I might like to be the person who finds glory and joy on where she is now but selfishly I still want her here with me.

Should you ever find pause on this January 25 or any in the future it will be due to the fact that true greatness was born on this day.  It didn't come in the form of an able body or in the form of someone who could spend hours espousing on the ways of the world with many an idea to fix what ails it, nor in the form of a literary genius.  Her greatness, as it does for some emanated from her just being.  Strength, endurance and courage along with a peace and tranquility were a part of her aura.  Whether those who came into contact with her knew it they were better off having met her and blessed for knowing her.

Greatness comes in all forms and in Ailish it came in a petite, smiling, quiet little girl.

To hold her in my arms, smelling her sweet scent, touching her soft skin is what my dreams are made of.
Thirteen years ago
NICU hairdo

11th and last birthday

Happy Birthday to me Happy Birthday to me Happy Birthday to Meeeee  Happy Birthday to me!!
Mmmm I really wish I ate cake!

So beautiful!

Thursday, January 24, 2013

dalai lama and fifty shades in the same sentence?

Did you ever think that some people were put into your life simply to put you in a homicidal rage on a regular basis?

I'm reading the Dalai Lama to try and combat it but I have to tell you it's not as quick or fun a read as Fifty Shades of Grey....

Wednesday, January 23, 2013


Holy Moly it's seizure night in Canada or at least at our house.

Three so far let's hope that's it!

Monday, January 21, 2013

Pretty is as pretty does

"Look Mommy, I put on some of your makeup so I could be as pretty as you".
I think I will go with mission accomplished...

Thursday, January 17, 2013

glamour girl

It is highly possible that the kids' bus drivers think that I never get dressed.  After I come home from doing what I do during the day in my 'rock the world' clothes...cough, choke, sputter....I change into comfy clothes which may or may not look like pyjamas.

It's just how I roll

Tuesday, January 15, 2013

"You're a good tooth puller outer"

Why oh why must she grow up?  I love this age and younger.  Not that I don't love them as much when they are older of course but it is the under six crowd that still think you're the bomb.  And really....I AM the bomb!  Why is it that the older crowd loses sight of that?  I digress.

The tooth fairy came and though she did not leave the "one hundred million dollars" the child thought her tooth was worth she was happy with the five.  The teens of course thought they were majorally ripped off from their tooth fairy days when all they got was a paltry two dollars and then of course there was the moaning about how the tooth fairy didn't come at all.  Here is maybe where their whining has merit.  I will admit to forgetting about some of the later teeth...  Oh well they can take that and I'm sure any other of my parental failures up with future therapists they might have. 

For now I have a one less toothed happy six year old whose first tooth fairy experience was a total success.  I on the other hand may or may not be a blubbering mess as this adorable, brilliant outstanding little person makes her way through one more developmental stage on her way to growing up.

Saturday, January 12, 2013


"You're so beautiful Mama"  says the sweet six year old as I get ready to go out.  "I wish I had makeup so I could be as beautiful as you".  First of all...awwwwww.  Second of all lets remember she is visually impaired....

Friday, January 11, 2013

Two years January

Two years ago this month Ailish actively participated in the school winter performance.  The weather had been horrible the December date that it had been scheduled for so it was postponed until January. Ailish was in fine form.  She was a snowman for part of the performance.  I don't think she quit smiling, kicking and squealing the whole time.  Maybe she knew it would be her last time to show her stuff so she better make it good.

she was too reclined for some reason 

have you ever seen a smile so big?

Sunday, January 6, 2013

Must there always be blood?

Ok so maybe I exaggerate a little.  There is not always blood wherever we go just usually when there are new clothes being worn and more predictably clothes light in colour.  In the end really it was my fault.

I took three of the kids to a party Saturday night.  It was put on by our provincial organization for folks with cerebral palsy who also serve others with different disabilities.  Everyone had a great time.  There was food, dancing and visiting with friends.

It was all fine and dandy until Phoenix took a header.  Poor kid.  When she fell she knocked one of her front teeth to the point she loosened it.  The pain must have been tremendous.  Amazingly though she was still ready to party.  Someone found her balloons, the macarena was played and the distraction was enough to lessen the discomfort she was feeling.  One of the volunteers present happened to be a hygienist and said that she had seen grown men dropped to their knees from doing something similar.

My girl is a warrior.

The other two were party animals.  On the floor all night dancing with anyone and everyone.

She has a good time no matter where she is

They adore each other

doing the macarena and balloons

Her poor mouth!

Party Man

Thursday, January 3, 2013

It's a start

"Malia you need to apologize to journey for your behaviour" I say. "Journey I love you" she says wrapping herself around her sister "and I'm sorry you were so rude to me this morning". Hmmm thinking her apologies might need a bit of work..,

Tuesday, January 1, 2013

Personal Christmas

Christmas morning around here is both the same and different at most houses.  There is the rip tearing and shreading of paper and the squeals of delight with each unwrapped treasure and then the thrill of having more to unwrap.  There is the gathering their loot into individual piles and then the godforsaken packaging that Fort Knox must be easier to get into.  Where it is a bit different is that some of the kids appear indifferent to the fray and prefer to keep to their regular morning routine.  They take their same toys from yesterday to the place they like to sit and wait patiently for breakfast to be served though later than usual.  And different.  Breakfast is different on Christmas.  Unless you like porridge and really must have your porridge.

What I have done over the years is evolve to the point that everyone does not have to be in the same room opening gifts at the same time.   That's my romantic vision.  The reality is that some of the kids could care less about presents and much less having to work for them by getting through an entire tree's worth of paper.  For these kids I now use Santa sacks and they get their own personal Christmas and photo shoot.  When the time is right any time from Christmas day to a couple of days later each of the kids is sat down, usually with an audience and they are coached and assisted through their presents.  This works sooo much better.  Everyone is happy.  As I have cough choke aged I have let go of some of the Norman Rockwell or romantacized visions of how I think things should go and gone with what works.  Look at me...evolving....just like an ape....

new hair, maraca, slinky....really what more could you want?!

"I'm smiling cause I know she likes it but I'm quite sure I hate this hat!"

Did you forget I'm almost thirty years old?  S'rsly!