I forgot

I forgot to add alcohol.  Send lots and lots of alcohol.  You know...for sterilization purposes....

Toxic Waste

I am living in poop hell.  Please send wipes, paper towels, hip waders, hand to elbow gloves and for good measure full hazmat suit.  The waste is definitely toxic.

Twas one year ago

It is almost one year to the day that I was forced into rehoming this beautiful dog Skipper.  Though he had some good qualities (few and far between however) he felt the need to attack me for any correction I might give him.  He had some Cujo like tendencies.  His rehoming was successful.  He went to a childless couple with a few other dogs and he has become the "best friend" to the man of the house.  I knew Skipper had it in him to be a good dog but I could no longer risk the chance that his aggression would turn from me and onto one of the kids especially Malia whose face was just the right height for him to take off if he so chose.

Then along came Nessa.  She too is a beautiful dog.  A golden doodle.  She is the right fit for the family.  She is loving, funny and keeps us all amused.  She does however eat anything butt related and socks.  This is a health concern for her in two ways.  Consumption of these things can cause her harm and possibly death.  The FACT that she is consuming these things is on my last nerve which could cause her harm and possibly death....

Oh I jest so all you pavement pounding, sign waving PITA people can unbunch your panties.  I would never intentionally cause harm to the dog.  However.  As we are at the one year anniversary of the last dog's departure it might have...just maybe crossed my mind to have Nessa go live with her brutha from anutha mutha....

I'm just sayin it's something she should keep in mind when she is diaper diving....

If only I had taught her to spell my full name!

Says one of the teens.." We have to do a project in Leadership about someone who has inspired us.  I was going to pick you but then I couldn't spell your full name so I picked someone else"

posthumous birthday party

The poem is by A.A.Milne.  We had a small birthday party for Ailish this weekend.  It was heart warming for us that people would come and celebrate the fact that she was born, she lived and was abundantly loved.  We are indebted to those who made the effort to come and take their chances with my cooking..

More Ailish Cute

Another video of Ailish.  Couldn't you just melt from the cuteness?!

A life worth living

This is one of the videos I had made years ago.  This is Ailish.  Born with hydranencephaly a condition whereby she had zero cerebral cortex and a small malformed brain stem.  I was lucky and never had to fight for medical professionals to see her worth and want to keep her alive.  She was healthy all her life.  Many families have to take on the battle to get basic medical care for their children with the same diagnosis.  Some like to put forth quality of life arguments when they speak of children with disabilities.  As you watch this video I think it is clear that Ailish thought she had a quality filled life where she was adored, doted on and where she was able to receive love and reciprocate tenfold.  If I can speak for Ailish I would say she felt her life was one definitely worth living, profound disabilities and all.

Mirrors are the devil!

I make it a habit to not look in the mirror. The mirror is not my friend and only serves to hurt my feelings. That being said when you accidentally push 'photo booth' on the iMac and your face comes popping onto the screen front and centre...you learn stuff. Not good stuff. I learned that I have enough spare skin on my forehead to cover the heads of three other people! I am currently researching skin donation from living donors... Stupid Photo Booth!

TIme for a baby. No. Really

Don't those toes just scream to be tickled?  It is time for a new baby.  It was time two and a half years ago but now for sure it is time.  The kids are very ready.  Without any conversation from me I have four kids asking when we can have a new baby.  I would like to know that too.  I'm getting (I'll say getting, some might say I'm all ready) long in the tooth.  I have it in me to care for another.  I know for certain we are not done growing the family.  Why is is however that my timing never matches that of the Universe?  It would really be nice to get this last child here before we need someone to change both our diapers.
A pet peeve of mine is when people say they 'deserve' something.  I just don't like the idea of entitlement. That being said....come'on really.  Shouldn't it be lose one, get one?  If one was done her earthly duties shouldn't another be sent to carry the torch?  Not a replacement but a light to lead our way?

Melancholy Hound

Melancholy hound.  She's not been quite right the last couple of days.  Either her dirty diaper eating addiction has caught up with her or she has lady troubles.  Time will tell.  I did tell her however that I would not be responsible for vet bills to treat the side effects of her poor choice making.  We have learned a welcome lesson this weekend and that is she is very good with babies.  That's gotta mean one of our very own must be coming soon, right?  Right?

Sugar Crisps

"Can't get enough of those Sugar Crisps, Sugar Crisps, Sugar Crisps.  Can't get enough of those Sugar Crisps....."

No s'rsly.  I can't.

belly dancing?

When having a belly dancing dance off with your teens and showing them your skillz you should remember
    a) you're old
    b) you're out of shape
    c) you have no belly dancing skillz

Five years old = no filter

Malia to me as I scrub the stove " Is your butt wiggling?" "yes sweetheart it is.  It matches the bat wings flapping under my arms"

Beyond Reason

Some things in life are simply beyond reason to me.  How is it that a family, not just any family mind you but an amazing, wonderful solid family be struck twice in three months by tragedy?  It is beyond my comprehension.

I believe in God, really I do.  I think on some level there is a master plan that we are all guided down but on occasions such as these I think the PLAN really sucks the big one.  There seems no rhyme nor reason to it and it also comes off as cruel.

Many of you know what I am talking about.  Aaron King a wonderful husband, father and man has passed away just a few short months after his beloved son Noah at the very young age of thirty nine.  Noah had hydranencephaly like my Ailish.  Left behind is his soul mate Lisa and their three other sons Jay, Harri and Kobe.  Still reeling from the loss of Noah this family must now find the fortitude and courage to move forward without their great leader.

This tragedy leads me to question why.  With Ailish and Noah we knew ultimately that every day with them was a gift.  We knew their lives would be short and we were grateful for all the wonderful years we had with them.  But why?  Why take this much loved, much needed man away from his family?  I cannot fathom a reason that would be acceptable.

I guess all that is left to do since no answer will be forthcoming until we all at some time hopefully reach the pearly gates is to offer whatever we can to the King family.  They will need all our love from far and wide.  They will require listening ears and encouragement.  They may require assistance in caring for some of the daily chores that make up a family's day.

Lisa is an amazing woman, wife and mother.  She will do what it takes.  She will however need to feel the blanket of love that we can provide.  Not only has she lost what no mother should, she has lost her life partner and partner in raising those beautiful boys.  It is so hard to give when you feel empty.  Lisa can do it however as we have watched her do it for a few months but now more than ever she will need to be lifted and sometimes carried.

My heart and my soul sit in Australia on this so so sad a day.

thick skin

It's probably great that I have a thick skin when it comes to what my kids (ok one, sometimes two of them) have to say otherwise the continual reminders as to how much I suck as a mother might hurt...

Happy Birthday Ailish!!

Twelve years ago this beautiful, miraculous human being was born. 

                                                                 AILISH ANGELIA 

sweetness

"Will there be a party in Heaven for Ailish?" (re Ailish's birthday tomorrow)

Soldiering through

Chronic pain.  Which comes first?  Does the chronic pain mould the personality or does the personality determine the amount of pain felt or ability to cope.  I suppose the answer is in the middle as it would only make sense.

What I know for sure however is that chronic pain + dramatic personality + teenage girl + learning disabilities = not a lot of fun.  For anyone...

I am doing my best I swear to God.  Parenting is hard in the best of circumstances.  Add to it a debilitating disability and the fear of never coming out the other side whole with the loving, close relationship you had hoped for once the child intensifies.

I was hell on wheels for my mother.  I was not out running around getting into trouble hell but I was so so rude.  I treated her not so much of a grain of respect.  I argued with her at every turn.  Certainly arguing, testing boundaries etc is a normal part of growing up but I want so much more for my relationship with my daughters at the end of raising them.

I access the resources medical, educational, psychological and recreational.  I have thirteen children but it is one that occupies the majority of my time and thoughts.  I don't mind this.  I will do what it takes to hopefully in the end have raised a daughter that is happy, as independent as possible. a benefit to her community and one that wants to be present in her mother's life.  It sometimes never seems to be enough.
 
We have all the resources but ultimately it is her and I in the trenches and I am seriously flying by the seat of my pants.  I think a lot of times the professionals are at a loss as to how to help.  If they don't know what to do and it is left to me to muddle through...we are one hundred percent sunk.

Window into crazy

If you hadn't guessed I am blunt and to the point in my writing.  I try to be a tad more sensitive when dealing with people until I get an understanding of who they are and what might be offensive to their sensibilities.  I want to be true to myself but want to respect those around me.

I have filter issues that I'm working on.

As this is my blog my filter might be set at a point disagreeable to some (maybe all).  When it comes to talking about Ailish as some might have found with the 'invitation' there are not a lot of holds barred.  The facts are as they are.  In real life these conversations are usually saved for those in "the club" or those very close to me who know me.

It is usually just them that get a window into crazy.

I hope you'll stay...

Appropriate birthday invitation, right?

Hey there

After a bunch of hemming and hawing and pushing from the kids we are going to have a bit of a party in celebration of Ailish's birthday.  She would have been 12 this coming Wednesday, January 25.  

Some folks will think it odd or just icky having a birthday party for a dead kid cause really…what do you get them for a gift…..but this will likely be the last hurrah that we share with people in honour of Ailish.

The party will simply be a light lunch and of course cake here at the house on Sunday, January 29 at 1:00

You and yours are cordially invited

Oh and don't worry about a gift….supposedly she has everything she needs….

Tricia

"I Had a Dream"

Wouldn't it be great if the dream I had was all inspirational, motivational worthy of quoting for decades?

Ya so the dream I had was one where I was in Australia getting out of the shower and was then somehow placed in an auditorium.  My friend Lisa pops out of no where and asks me to give a memorial speech about her son Noah who passed a few short months ago.  I was thrilled to do it, an honour to be asked however... I was neked the waist down.  My calls to Lisa as she walked away went unheeded leaving me backstage seemingly not noticing I had but a shirt on.  I thought to myself that the shirt was long but with the seating arrangements as they were there was no way that the first few rows of seating were not going to get a bird's eye view of parts of me that are even overdue for the doctor's lookyloo.

At that point the alarm went so I have no idea what was more impressive....my memorial for Noah or my, well, you knows

Kewl Mom?

I told the teens I was going to get my navel pierced and was going to walk around Disneyland in belly shirts.  Turns out I will be saving money on this trip as they no longer wish to come...

Melania "Princess P"

Last night we said good bye to Melania.  I won't pretend to have known her well but met her briefly on a number of occasions.  I learned the most about this little girl who would have turned five in two weeks from her Grammy who raised her as she recounted her precious ones life in her eulogy.  I was so grateful that she was able to stand before us in the most tragic of times and speak lovingly and clearly of Melania's life.

Melania's story was not different from so many of our children born with challenges.  Melania however was born with one set and then given another after a medical procedure.  She lived the majority of her life in hospital but never without family at her bedside.  Bedside might be a misnomer however as though she lived within the confines of a medical facility she was provided with an outstanding quality of life by a strong committed family who ensured that Melania saw as much of her community as was possible.  Melania was gifted to a family that was not afraid to stand up for what they believed to be in her best interests and that sometimes meant butting heads.  They set up an environment for her intended to decrease the amount of hospital stimuli and did so knowing that they might be considered 'difficult' but caring not for their own reputation but for the well being of their girl.  They from all accounts were successful.  Melania was happy.  She was cognitively and physically disabled and medically fragile to boot with every day being a crap shoot as to it being a day of stability or one that required more medical intervention yet she was happy.  Melania had the love of family, friends and staff.  She was loved.  She felt the love.  She returned their love.

With most families who have been given a child with challenges once the shock of the situation settles the knowledge of the blessing that has been bestowed upon them becomes evident.  It might take more time for some but when the dust settles in spite of the heartache, in spite of the work, the stress, the fear, those touched by the lives of the child deemed 'special' come to realize that they are in the presence of greatness.  You will not find greater courage than that possessed by those with handicapping conditions.  You will see no greater acts of heroism than what it takes for these little people to live their lives usually smiling all the way.  This is as it was for Melania.  Not only was Melania a gift to her family but they too were God's gift to Melania.

No it was not me....

K..so listen...

No I did not pee on the carpet
    (but if I did it might have been because it was cold out and really, do you want to pee outside?)

No, it was not me that ripped up all the underwear in every bedroom
     (but if I did it might be a lesson in getting laundry done faster)

No, it was not me that tore a part the garbage
     (but it was then maybe a person should not be putting delicious things into the garbage)

No it was not me that was barking at every moving object seen walking past the window outside
     (but if it was then maybe I should be thanked for protecting you from waving trees and flapping paper)

No it was not me that ate the dirty diapers
     (but if it was then doesn't that say more about you than me if I have access to dirty diapers?)

No it was not me that ripped the boy's shirt(s) while on his body
     (but if it was me...hmmm...you're right...no good explanation there)

Anyways, my point that I'm trying to make here is that I am NOT to blame for everything that goes wrong around this place.  Look around.  There's at least eleven other folks that could be responsible.
Geesh!  I'm just a dog...and well...look at me!  I'm gorgeous!  How COULD it be me?

Did you know that a teenage girl can talk with you for HOURS about her hair and make up?

Birthday eve,eve,eve

Ailish's birthday is days away.  This was her birthday last year.  She would be turning twelve.  I should be grateful.  With her diagnosis of hydranencephaly where she was missing all of her cerebral cortex, some of her cerebellum and having a malformed brain stem, according to text books and many children  having gone before her she shouldn't have survived her first year if that.  I am grateful.  I still can't help feeling cheated.  I want more than eleven years.  I want more than her memory.

I think some believe and maybe I did too that in choosing to be Ailish's mother and knowing what her prognosis was that I somehow should have been better prepared, that maybe it shouldn't or wouldn't hurt as much when she left.  I'm here to tell you that was a fool's premise.  When raising a child you know for sure you will outlive you have to develop the ability where the fact is kept in the back of your mind but  far enough back that you don't live your life haunted by it.  By focusing on the child's lack of tomorrows you steal away from their todays.

Ailish was healthy other than the obvious disabilities.  She had but one cold a year that was usually short lived.  She had the occasional seizure in the last couple of years and more in her early years but other than that there were no pneumonias no hospital stays.  She was medication free.

You wouldn't think that a child who demanded so little commanded so much.  Ailish required little from those around her.  She was content with what was provided her.  She laughed, she cooed and cried only when she needed repositioning or believed it her turn to be held.  Though she did not request a lot of attention we all gave it freely.  Everyone wanted to be the one that made Ailish 'talk' to them or laugh.  Each of us wanted to compete for Ailish's affection which was shown through her grin and her giggle.  We all wanted to be her favourite.  Each of us thought we were her favourite ( I really was though...).  Though each child in the family has their own special needs the majority understood if things were not right with Ailish something needed to be done...and now.  There was to be no waiting around for her.  If there was a problem then the others wanted it fixed now!

Though I grieve for Ailish ( a journey that requires its own post!) I know where Ailish is.  I am very clear that Ailish is not coming back.  The majority of her siblings unfortunately are not that 'lucky'.  Developmentally they are unable to comprehend the permanence of Ailish being gone.  She went to the hospital for surgery then she didn't come back.  We had a funeral (what's that?).  Lots of people came over.  There was lots of talking about Ailish but where was Ailish?  Why can't she come back?  We are almost a year out and I am reminded almost daily that a lot of the kids don't get it.  It saddens me.  What must it be like to not know where your beloved sister went.  To see pictures of her all over the house, to hear her name mentioned but not to see her again.  I don't use the word Heaven with them in reference to their sister as to them Heaven is a concrete place that you can come back from that we can go get her from.  We are planning a trip to Disneyland over the anniversary of Ailish's passing.  One of the kids thinks that we will see her when we are in the airplane.  Another thinks we will find Ailish in Disneyland.

There is but no choice to carry on and live our lives to the fullest equal to what was offered Ailish.  Losing her though tragic, a dark spot in the life of our family and life altering cannot take away from the quality of life of everyone remaining.  It serves no one least of all the memory of Ailish.

He misses her

Donovan overheard that I was going to a funeral tonight.  He wanted to know if I was going to see "Baby Ailish".  Anytime he refers to Ailish he puts 'baby' in front of her name.  I'm not sure why.  The permanence of her loss escapes him.

Hoarders wannabes

Those gal darn fat green fairies have once again failed to show up for work!  I was counting on them to shovel us out this mess before the film crew from Hoarders shows up.

I totally suck!

Well I SO did not get Mother of the Year today as I refused to pick up Subway and drive it clear cross the city to the teen at school.  I think I'm ok with that...

happiness

happiness is in putting on jammie bottoms that you slovenly dropped on the floor in the bathroom when getting dressed that morning to discover they landed on the heat register. Not so happy is after putting the top on you discover it is wet from the dog after she drank from the toilet

Elmo Flash Mob

Pure joy is in setting off a dozen or so Elmos at once.

I had a partner in crime.

Call me a role model...

expired...

Our handicapped parking pass is registered in Ailish's name.  It expired the same year she did.

Coincidence?  I think not.

Assumptions

One of the most derogatory prevailing attitudes that we encounter is one that depicts children with disabilities as drains on family resources and all that it implies.  In our family there is not one member that does not have special needs but we are all about degrees of disability.  Some of the children are profoundly affected cognitively and physically with some then adding medically fragile to their resumes.  Some can "pass in a crowd"with their needs presenting more in the academic arena.  They should be able to live relatively productive lives.

What burns my butt to no end is the perception that children with disabilities deplete their family of time, energy (emotional and physical) and finances leaving nothing for the healthy able bodied siblings. What this mindset promotes is the unworthiness of people with disabilities, that they are the takers of society with nothing to give or offer.

Each time I have gone to adopt I have had to battle this socially accepted attitude.  I have had to defend the children's worth as siblings.  I have had to educate the educated into considering that what the disabled sibling has to offer is maybe more powerful than any lesson given at school.

I am not negating the fact that some children with disabilities can be time intensive and depending on where you live in the world family monies might be required to help meet the extraordinary needs.  What I am saying is that what the special needs population takes they return tenfold.  All that is required is an open heart, internal ears and eyes to see the gifts and feel the joy.

As someone great said to me "it is a privilege" to be in their presence, to be a part of their lives.

Jr High School

Some might consider Jr. High school to be an integral part of a child's educational, social and emotional growth.  A time where they leave their child bodies, develop more advanced relationships with their peers and community further laying down more of the permanent building blocks as to who they will be as adults.

I call it respite...

Q and A

Q and A

How old are you?
  now that's just rude to ask!  Let's put it this way...the news tonight said that for a woman my age range getting pregnant would be extremely difficult but if I was successful the pregnancy had a much higher percentage of being wrought with medical complications for me let alone the baby.  But really....what do they know

Have you ever married?
   No I have never married and came to the conclusion in my early twenties that I wanted to be mother to a specific group of kids and a lot of them more than I wanted to be married.  I don't think I ever made a conscious decision not to marry but really...what man could handle all of this ( by "all of this" I meant all of my fabulousness never mind the kids).  As a point of interest all of my married friends seem to think that I made the right choice...
   In all seriousness the only time I can really remember missing not having a husband would be in the early days and first couple of months after Ailish died.  I thought I wanted to be taken care of that if someone just held me for hours on end things would feel better.  In talking with married friends who have lost children I have heard that what I was imagining might not have been there with a husband.  Each person is dealing with their own grief on their own schedule and they might not have been emotionally available to provide me with what I craved.  It is likely the same could have been said for me.  A grieving husband, father of my child would have required support from me and in helping the children process their grief that would have been one more person I needed to take care of further depleting what were scarce resources.

What are the ages of your children?

J is 36
Colleen is 29
Hibo is 28
Paul is 24
Samantha is 21
Amanda is 20
Phoenix is 18
Journey is 14 (15 in a month)
Alyssia is 14 (15 in a month and a half)
Donovan is 13
Malia is 5
H is 4

Ailish who now resides in Heaven will forever be 11.

Are you done adding to the family?

   For the last two and a half years I have been informally waiting to adopt again.  By that I mean I have informed the private agencies in the province that I am wanting to adopt a high needs newborn.  Should they have a baby that they do not have the waiting pool of parents for then they will call me.  An adoption could also happen through a direct placement.  We had a close call on my birthday last year when I was called about a newborn with Down syndrome.  The family decided to parent in the end.

So are all the kids adopted if so who is and who isn't?

  No not all are legally adopted, there are a few different guardianship arrangements at play.  There will never be any identification as to each individual person's legal status in the family.  We are one family.  No distinction.

How do you do it?

    How does anyone do anything they choose to do?  I have not great magical one answer for this question that I am asked more times than I can count.  There is no secret.  I am able to care for the family (and sometimes the house...achem) because it is my choice to do so.  I have priorities that are taken care of first and I don't sweat the small stuff.  If stuff doesn't get done one day then it will get done the next (or the next).  I want the memories my children have of me (that is if they don't want me completely wiped from their minds once grown) to have been one of balance.  They need to see that as important as a safe, relatively clean home is the humans in the home have higher priority.

There are other questions asked stemming from a curiosity about us being we are a large family with differences.  If there are questions you would like answered feel free to ask.  I don't promise to answer all of them depending on their nature but I believe that a greater acceptance for what makes us unique comes from information, education and not innuendo.

Dear Medical Professionals

Sometimes you get on my last nerve!

Please please PLEASE learn how to talk to 14 year old girls remembering that they beyond any other age are at their most sensitive.  If you must talk about their weight you must do so in a way that you are not calling them FAT!  They know what they look like.  They have their peers teasing them all ready.  They don't like seeing what they see in the mirror.  They know where their differences lie.  For the love of all things holy think of them as your own children.  Would you want your child to be continually pummelled with negativity about their size?  Contrary to popular belief that weight is all in what you put in your mouth and how little you move your body there can be extraneous circumstances to added weight.  Improvements can always be made but how about being congratulatory instead of condescending about the efforts being made.  Anyone with a weight problem, primarily women can tell you that constant badgering about your above average size has a complete diametrical effect.  Far from helpful it wrecks havoc with a girl's self esteem leaving life long scarring.  Be aware of underlying conditions that make weight loss difficult...not impossible but harder to achieve.  Above all just please grab some sensitivity.  God knows you have the brains to accomplish great things or you wouldn't be accomplished in your profession but now its time to develop the common sense and emotional part of your inner selves because I have to tell you...the next time one of you makes my kid feel any less than the magnificent human being she is...I will have to take you out.

Yours truly

The MUTHA

I'm the best! ( in my own head anyways)

At -30 this after school little treat has totally got to score me some Mother of the Year brownie points!  Mmmm brownies....

Public service announcement

Before you have a panic attack thinking you have double cataracts in each eye it would behoove you (yes I said behoove) to clean your glasses. Now when I say clean your glasses I don't mean with the corner of your shirt sleeve that any one of your kids might have wiped unmentionables on, I mean really clean them with something say like windex or dare I say it glasses cleaner and the right glasses cleaning cloth. It might save you from unnecessary anxiety. You're welcome

stories

in talking with a friend it dawned on me....just as mothers have birth stories there is a club of mothers that also have death stories. Both are important and to be repeatedly shared though the audiences are totally different. Both teach lessons to the listener. The huge difference is that the first story brings joy and mental notes are taken on what to do the next time and the second illicits sadness, isolation and the fear of going through it again

I will remember you Miss M

As I sit to write this little M will soon be walking through the gates of heaven to hold the hand of Jesus.  I don't know her well but what I do know is that in her short five years she has fought a valiant battle against all odds.  Not a day has gone by that M was not shown an abundance of love from her devoted family and that she returned their love multiplied over.  Little M's abilities may have been severely limited but her capacity to inspire and change people's lives immeasurable.  I can only imagine the number of lessons taught to professionals and laymen alike by this one heroic little girl.

In having gone through the abhorrent loss of a child I know the emotions felt by all those who love M but none being more devastated than her immediate family.  What was so important for me when Ailish died was that people remembered her.  I couldn't bear the thought that after a short while Ailish's presence here on earth would soon be forgotten.  It continues to haunt me ten months after the fact.

The message I would like to convey to the family of Miss M is that I for one will remember.  I will remember her smile, I will remember the dedication of her family and I will remember the courageous way in which she lived her life.

When the time comes little girl, fly high with the angels and should you happen upon my most precious Ailish plant a kiss on her forehead won't you and tell her its from Mommy

shopping with the five year old

This is what shopping is like with this child.  Every single time.  Won't Disneyland be fun?  Could this be why I am having people sign on as helpers?  Nah....she really is adorable.  No. Really.

If you had to pick....

As is commonly known I have thirteen children all of whom have some form of handicapping condition with most being severely affected by their individual underlying diagnosis.  Each child as with every child (some of whom are now adults) comes with their own unique quirks and behaviours that make up who they and for some even add to their charm.  Some the kids true enough can be very demanding in their care, keeping them safe can be challenging, managing what can be a dozen seizures a day sometimes from just one child can be interesting and then just the day to day ensuring that everyone feels that they are loved and the most important person in my life.

I have been asked on occasion as to who I think might be the most work, have the most needs, take the majority of my time.  Though I know the question comes from a place of innocent curiosity it runs on the offensive side but it did give me pause.  I ran through all that I do for each child on a daily basis, calculated, compared and in the end there was absolutely NO question.

There is one who if I am really honest gets on my last nerve innumerable times a day.  She is continually bothering her siblings with physical altercations, taking their toys and creating a noise level in the house at times that can be deafening.  Her toiletting habits are inconsistent and often times she 'misses' where others of her age might not.  She is destructive.  She destroys toys and clothing and she has little concern for other people's space or belongings.  She assumes the attitude that if she can get it it's hers.  She requires me to spend time after time redirecting her behaviour, ensuring she is adequately stimulated and giving time outs sometimes many in one day.  Trustworthy is not her middle name but it is a skill we are working on.

There of course are many positives about this one I describe but in keeping with answering the question who might  be the most work well hands down it is her....Nessa.(pictured above) I don't like having to quantify nor qualify the members of the family but when push comes to shove there is little question.

Nessa, the dog, it is

Butterfly Release

Ailish (click here)

At the end of June we did a memorial butterfly release for Ailish.  It was beautiful that so many people came in honour of her.  Interestingly enough it had rained for days to the point that someone suggested in fun that we should be releasing frogs...
It rained before the party yet when it came time for guests to arrive the skies were blue and the umbrellas that we had set up were used for shade from the sun instead.  No sooner had the last guest left that the skies opened up again pouring down an endless amount of rain for the rest of the day.
I am so grateful for the out pouring of love that we received that day.

teen topics of conversation

Good Grief!  Now the teen topic of conversation is pornography!  First pole dancing now this!  Now all of my hidden 'hobbies' are coming out...


Oh I kid...

She's a planner...

On November 2nd when I'm six I want a princess Blackberry Torch.  Oh...and I want a princess vacuum with a princess cord and EVERYTHING!

It's a tricky one...

Just when you think that you have everything all planned out and have resigned yourself to the idea that the end result is the best you are going to be able to achieve despite your best efforts then someone comes along and gives a snippet of information that makes you think that maybe, just maybe your original plan is  possible.  Cryptic enough?

This is my little man H.  He is First Nations.  Due to a history of abuses of the First Nations people they as a culture are generally not in favour white folk adopting their kids.  H is legally free for permanence and has been since he was about a month old.  He is now four years old.  I brought H home from the hospital where he had been living with the intention of adopting him.  The social workers from the reserve where he is from were in favour.  Turns out they didn't know that they don't do adoptions....  What is considered an acceptable alternative is private guardianship.  You wouldn't think there was much difference between the two statuses but really there is.  Where we live when a child is adopted they are considered "as if as born to you" (unless of course for some reason you are in the media where the child will forever be the "adopted" son or daughter and the parent the "adoptive" parent.  Another story...another rant for another time!).  With private guardianship you assume all the rights and responsibilities that a legal guardian has but in the event a family member etc comes forward with changed circumstances and wants to apply for guardianship they can do that.  It doesn't mean they would win but when you are talking cross cultural relationships with very sensitive histories anything is possible.  It is also possible that should I die the guardianship order is null and void leaving the child in a potential hot pot of the reserve attempting to assume guardianship.  Again it would be assumed that arrangements would have been made by me in the event of my death but anything is up for grabs when there are possible other interested parties.  This could also effect things should H pass away before me.  With the guardianship order no longer in effect birth family could come forward looking to make all plans regarding his remains etc etc.

Back to my original point.  I was told by the top dog from the reserves social services that adoption is not and would not be an option.  I came to terms with that and have been moving through the private guardianship process.  Today I learned from no one connected to H or even his particular reserve that another family who was in the same situation, told for years that adoption was not a possibility, no way no how has now completed the adoption of their children.  It seems they went to the Chief.

I am usually a go straight to the top type gal.  If it is going to be the big kahuna that is going to make the decision about something I want then he/she might as well hear directly from me.  Due to the sensitive cultural issues at play here I have been way more guarded in my approach.  I have not considered going to the Chief as I worry if I stir the pot too much I will be shooting myself in the foot and have annoyed people that I have to work with and may end up with no degree of legal status of the boy.

It's a tricky one.

Code

"Can you hold me?"  is the five year old's code for I'm about to start spewing chunks all the way from last Wednesday and I really want to share the experience with you...

Not complaining....

Some folks soak in baths of lavender scented water in a dimly lit bathroom basking in the glow of candles enveloped by the peace and tranquility they have found in the solitude of their own company.

I on the other hand.... well let's just say I'm not complaining but just sayin...

Mommy is the BEST cook EVA!!

We refer to the Colonel as Grandpa.  Daddy is reserved for the pizza delivery man...

Buuurn!

One of the teens told me today I would never be a pole dancer.  I'm not sure what to make of that but I'm going to take is a slam

making our mark (written two years ago)

Super Walmart was left standing as nine children and their mother made their trek through. With two kids in wheelchairs, two in a double stroller, a full cart, two cart hangeroners who really did not want to be there and the remaining following and helping it is a miracle that the only casualty was a large large lightbulb. I was conscientious...I pushed the shattered glass under the shelf with my foot, scooped up the bulb dropping toddler and discrietly (said loosely) hightailed it out of the department

Lessons learned (written two years ago)

When leaving the dog in the bus always leave the window open a degree so that when he locks you out separating you from your babies you can sqeeze the tree trunk that is your arm through the window and open the door. Further to that lesson when lifting your arm to survey the damage causing you pain you will be irreparably emotionally damaged in the realization that the amount of flabby skin there will allow you to be airbourne in a strong wind

A giver (written last winter)

There is nothing I wouldn't do to create happiness in others  Just as an example in going to get my kids off their special needs transportation I fell ass over tea kettle on the ice. All I hear is gales of laughter coming from all the passengers on the bus all of them who have severe cognitive disabilities. When I step on the bus one young lady was kind enough to ask about my well being but then slapped her knee killing herself laughing again along with three other folks. That's me...a giver

Celebrity seeking

I was watching a You Tube clip of Ellen and saw her give the family who was going to Disneyland a VIP pass that gave them their own escort and private tour of the park. WE. SO. NEED. THIS! Now I have to make a celebrity friend.
When I was a kid I met (met as in he was pointed out to me at a mall) Tom Jones's nine year old son. I wonder what he's up to these days....

Good news!

Amanda who is barely verbal referred to the dog by name today!  Course it was the name of the dog that's been dead for two years and two dogs ago....but still

(the picture is not Amanda but its one I have of Nessa the dog)

I am a genius

Child, "what's this?" Me, "a knife sharpener".  Child, "what's a knife sharpener for?"

Me "you need to fix your pant leg before you can put your leg in".  Child "what's a pant leg?"

These are the brain teasing questions that fill my days

final pictures of Ailish and I together

No expert....

I'm no expert but I know what I know about some stuff and I don't mind sharing my skewed view of things.

If you want to know what I know about

   global developmental delays
   meningitis
   autism
   neurofibramytosis type 1
   angelman syndrome
   cri du chat syndrome
   trichorhinophalangeal syndrome
   fetal valproate syndrome
   hydranencephaly
   porencephalic cysts
   cerebral palsy
   hydrocephaly
   holoprosencephaly
   vision impairments
   what it is to raise a child with disabilities through to adulthood
   what it is to raise a child with a 'terminal' diagnosis
   what it is to lose a child
   raising a large family
   adoption
   foster care
   and anything in between

then I might be your go to gal.  The caveat I have is that I come with opinions....

Ya...so you remember when I said I'm not that techy?  Ya'll should take me at my word as in about 15 hours I have lost the ability to navigate my own very small blog!  Pitiful!  I would like to blame it on my grief induced ADD but alas, I was this incompetent before...

This is my most beautiful Ailish Angelia soon after her eleventh birthday and a few short days before her surgery and eventual passing.  She was all dressed to participate in her choral performance at her school's annual fundraising gala.  Ailish was so vibrant that night!  She had a grin from ear to ear and couldn't have been happier.  I was so nervous about her having her spine straightening surgery in just a few days.  I was afraid of the pain she would go through and of course I was terrified she would not survive it.  But Ailish laughed Gala night.  There had been other performances that Ailish appeared to pay little attention to including previous years galas but that night she sparkled.  She participated mind, body and soul.  It was.....Heavenly.

Giving it a go

So this is my attempt at blogging. I gave it a half hearted attempt five years ago, wrote a few posts that no one was aware of and I have since deleted them as I now find them, well, stupid. I have few techno skills and little patience to learn them so I'm not sure how this will turn out but cheers to the college try!

We as a family have had a tough go of it in 2011 with the loss of our most precious Ailish in March due to a post operative complication. As you can imagine there are many emotions surrounding her passing and lessons being learned about grief and grieving and how we as a family deal with it, how friends and family deal with us dealing with it and on it goes. Some of my posts will be about Ailish, what her loss has meant to us/me and how we pick up the pieces and move on. Most however will be about us as a family, how we live our lives, working towards our individual potentials as children and adults with disabilities and all things in between.

Life is adventurous, filled with many ups, downs and huge pitfalls but as it has been said many times before now it is how we rise to the occasion where we see greatness.

There is nothing I like better than a good laugh or giving someone else a good laugh so hopefully we will all find a little of that here too (laughing with us, right? Not at us?)