This could be dangerous

                                                                     I have been feeling
the call to bake bread.  Not bread machine bread but honest to goodness knead it, bake it yourself bread.  I know it must come from my brief stint being Amish when I was without my cell for four hours on Saturday.

I have gotten as far as little banana loaves, the six year old's favourite snack but that's it.

 I should probably sit down and wait for this to pass.  I don't want to get hurt.

Special Day

Friday I declared a special day with Mommy day for the six year old.  Now you might think what? A day off school?  Wouldn't that reinforce the negative behaviour happening in the classroom?  What the heck sort of crazy parenting you doing in that house Lady?  Here is what I say in my defense....Friday's are almost a half day and most importantly the child in no way sees no relationship between my talking to her about her school issues and her special day.  So there.

We went to the mall to upgrade the child's footwear as she was in need.  She's a shopper my dolly.  All was not lost educationally.  It was sort of like homeschooling only at the mall.

there was physical education with running

Jumping

and running some more

there was lunch break of course

and science

the haul (yes that is a new doll)  Please allow me to introduce you to SweetPea

"I loved our special day.  Can we do it again next Friday?"  I'm thinking I can't afford  another  'Special Day'

You wouldn't think it possible...

Now I could be wrong but it's not bad when you get called by your most adored little grade oner's school only to be put on speaker phone to discuss a meeting time re behaviours, noncompliance and such right?  I mean look at the child!  Does she look like she could hurl a book at a teacher's head or curse like a sailor?!  I didn't think so either.  Oy!

She breaks my heart, this little darling.  Not so much that she is not held accountable and taken to task for inappropriate actions but it hurts me that in entering school she is on a frustrating path.  As much as she needs to be accountable and atone for misdeads however it is not all her fault.  The brain is a magical, mystical organ so much so that there are no great explanations as to how some can be university educated living with half a brain (I'm not actually referring to the professionals we have all met that only act like they are half brained but really ARE missing half their brain), and yet some can be  profoundly affected with what looks like a whole undamaged brain.

No mother wants to see their child struggle nor do you want others around your child to suffer because of them.  She has so much potential this little one.  She is kind, generous, empathetic and hilariously funny.  She is bright, observant and wants to take that big bite out of life that not everyone does.

The trick and the challenge will be harnessing all that she has and is to move forward in the direction that finds her success.

I love her more than it would seem humanly possible.

zach

Zach Sobiech died yesterday.

He might have only been here for a short time however his impact was great.

Much love and peace to his family and loved ones

Logically

Logically I should be grateful.

Logically it was my choice to raise a child I knew would not be here long.

Logically I know that I was able to have her for eleven years when none were considered possible.

Logically I know how fortunate she was and we all were that her health was near perfection her entire life when the majority like her suffer many ailments and hospitalizations.

Logically I am thankful she died peacefully without trauma.

Logically I am grateful that I was present for her last moments irregardless as to whether she knew that.

Logically I am grateful I was able to hold her, bathe her, do her hair one last time before her external self was taken from me.

Logically, logically, logically I know what we had so many others in the same situation with the same diagnosis long for.

The reality of it is however,  26 months later,  I am majorally pissed off.

I can't remember in these last two years feeling so angry about Ailish dying.  I think probably it is because I knew ultimately things were good for us.  Her life.  The way she passed.  All of it.

I have been sad, sad, sad and now I am mad mad mad.  Sad, mad, sad mad.  Whether it be 'logical' or not.  Mad beyond mad.

This newfound realization of mine has a lovely twist to it.

Guilt.

When I have so much to be grateful for when it comes to Ailish how dare I be mad that she is no longer here when medical logic states she should not have been.  How dare I feel this way when families with healthy children expected to grow to adulthood and experience all the world has to offer, send their kids to school only to have a tornado drop a building on them or a gunman taking their lives?  How dare I?

I have stated before that grief is stupid.

I will now declare grief to be illogical.

Ya heard it here first folks.

Prophetic?

Two nights in a row two dreams about making an ass out of myself.  Short dreams.  In thinking about them the underlying theme is I am not prepared.  I looked a fool as I was not prepared.  If the theme here were to be considered prophetic.....what am I not prepared for?

Oh oh.  Please say it is something good, please say it is something good

peeping tom(s)

Five kids and a dog watching me dress.  That's normal right?

Zach Sobiech

This young man though I don't know him has touched my heart and this song is perfect.  I can hardly wait to be sitting on a cloud with Ailish....

Dear Target Canada

Dear Target Canada

Do you know how hard it is to shop with eleven children?

Do you know how hard it is to shop with those eleven children when only two want to be shopping?

Do you know how to travel six hours depending on boarder crossing and how often those eleven children or more importantly their mother has to pee so that you can do that shopping?

Well Target Canada I'm here to tell you it is h.a.r.d.  It is doable and if the mutha puts on her happy face and buys enough treats it can be fun especially with promises of the hotel pool after.  Don't get me wrong we like to travel though I use the word loosely.  We like short term hotel stays (well the kids do anyways), eating out (love the Golden Corral.  Love it) and we even like the drive.  Crossing the Canadian/Us border leaves something to be desired however as they are always mean to me.  Always.  No matter how sweet and charming I am or nor matter how straight to business I am the bus throws them and they are nasty.  I suppose even the rude, belligerent customs officers play their role in the success of our little trips as it gives me the mental stimulation to stay awake driving through bald ass prairie thinking of all the witty comebacks I could have made while being berated.  Being the goal should always be staying out of jail it is best that I do not come up with what I consider brilliant appropriate responses at the time of the inquisition.  However....I could potentially have my own cell with my own toilet that is only slightly less public than the ones I have in my own house and they would have to come up with what to feed the children, change their diapers etc etc.  My room service would not be stellar but I wouldn't be doing the cooking....  I should reconsider my approach next border crossing....

I tell you these things Target Canada and pose these questions as a response to having shopped in one of your new stores today.  In the back of my mind I believed that you would offer nothing new but I had hopes that you would bring some of the little extras from the US that we don't carry here.  I thought yay maybe there would be the xxl mens underwear that is so plentiful down south but notsomuch here.  I thought there would be a bigger selection of new and exciting toys that we always see on our sojourns cross border shopping.  Nope.  It was not to be so.  Just as I had feared you were Zellers and Walmart but done in red.

You might think that my disappointment is unwarranted and that perhaps I am in need of a life.  Certainly my complaints are silly and first world.  You might very well be right and to tell you the truth I won't be losing sleep over it.  Unfortunately however you have caused poor Donovan grief.  He had high hopes that you would be bringing with you the Fisher Price pink Laugh and Learn dog that Phoenix loves so.  Every time an add for Target came on the tv he would ask if Target was making Phoenix a new pink dog.  We bought the store out when we were in the states last summer but alas two died long painful deaths and the remaining dog will likely find a same fate.   It will soon be back to brown dogs.  Equally enjoyable.  But come'on....pink is for girls.

I will leave you with this dear Target Canada.  If you want the faithfulness of a future shopper and possible employee in a supported work enviornment it might behoove you to step up your game and bring in some pink dogs, xxl mens underwear and any number of the cool American products missing from the new stores.  Donovan would be ever so grateful and he would have one less thing to cause him anxiety.

She's on her last legs

I appreciate your attention to this matter.

Yours truly

Disappointed Target Canada Shoppers

Brilliance!

This my friends is what brilliance looks like.  It is has always been said that children with disabilities will max out their developmental progression at about age ten.  I have seen this to be true in our family for some but for Phoenix and a couple of the others skills keep coming.

Today Phoenix came to me took my hand and brought me to her room.  She then bent us both down placing  my hand on her beloved Fisher Price dog that was hung up on her bed making it impossible for her to pick it up.  This is incredible!  So much had to go into Phoenix being able to do this.

She had to realize there was a problem

  She had to know she could help

She had to know and locate who was best able to help her

She had to communicate that she needed help and get the helper to the scene of the problem and then identify the problem.

Yes I realize the child is 19.  

Yes I realize this is the developmental skill of a young toddler

What I also know is that by continuing to develop communication and problem solving skills such as these increases the quality of life and relationships she has.

Skills of requesting preferred items and food and drink have been coming over the last year and she has been dragging....taking us around the house for awhile sometimes just because we all will go with her but today seemed just a bit more special.

Course then she went and ate dog food.

But still.....

Bereaved Mother's Day Oy Vey! It's worth repeating from last year

 Today I have learned is Bereaved Mother's Day.  S'rsly?!  Bereaved Mother's Day.  Are there cards for this day?  Are people supposed to be sending me flowers?  If people don't know me or others who have lost a child are we to wear name tags or are our darkened eyes, slumped shoulders and shuffling gait enough to identify us as bereaved mothers?

I did not cease to be Ailish's mother the second she passed, the moment after cremation or at any time in the future.  I do not need a special day to recognize that I lived in the presence of greatness for eleven years.  Had Ailish been an only or the one of thirteen that she was I am and will forever be her mother.  Please PLEASE remember my child and what she meant to her family and always know that I never stop grieving for her but in case anyone should want to wish me a Happy Dead Kid's Mother's Day...I'm good.

That being said I never pass up the opportunity for brunch or dinner out so if anyone should happen to know of a dead kid's Mother's Day Brunch....I'm there.

Run out of words

There are potentially big budget cuts coming down from the provincial government that could be of huge detriment to adults with disabilities which has lead me to letter writing, attending meetings and press conferences.  Don't I sound all like I'm all that?  I go to be a warm body in the room to ensure that the politicians in charge see that though the constituents with disabilities might be a minority and seen as a burden that those that love and support them are mighty and a force to be reckoned with.  It is wonderful as well to see some with cognitive disabilities stand up for themselves and tell the government that they are wrong.

If you want to see an entire banquet room with standing room only start crying you hand the microphone to someone whose funding is at risk of disappearing and have her through her tears and disjointed speech attempt to convey her fears of losing the quality of life she is accustomed to and the people that support her. Oy vey!  Tough stuff to be sure.

At any rate as I attempt to do my little part to advocate I have run out of words to use but I will leave you with this.....

 Couldn't you just eat them both up?