Monday, April 29, 2013

The scene where I left the threads of what I thought was sanity

Twenty five months later I could reset this room I think pretty accurately with the people that were there responding to the code on Ailish.  I should probably say bodies as I don't remember all the faces.  I do remember the things being said at the time maybe not all the orders being given but moreso the inane conversation occurring between the staff.  Even the political if you can call it jockeying.  

The room was overflowing with people with one wall covered with shell shocked looking interns or students.  The ICU resident was at the end of the bed calling the shots.  The attending was on the far side of the bed interjecting when necessary.  When the ortho resident wasn't pounding on my daughter's chest he was at the end of the bed awaiting another turn to try and save her.  While he performed cpr his gaze would meet mine with his being filled with fear, worry and guilt.  There was a respiratory therapist who despite continually being told her cpr was not efficient was unable to do better though no one pulled her off.  There were three anesthetists intubating Ailish shooting the breeze as to why one of them was there were they on call etc.   WTH?  There was the poor doctor who got called into the room immediately before Ailish crashed who knew nothing of my child but was asked to come in to assess.  She got in just in time for the code button to be pushed.  She stood beside me ensuring that I wanted to remain in the room and in learning I did inquired as to what I might need.  She respected that all I wanted was to listen to what was being said as they tried fruitlessly to revive Ailish.  The teenage nurse assigned to us on evenings and the charge nurse stood to the right of the ICU resident with the bedside table pulled over as they documented orders.  

 Somewhere in all of this the world's most insensitive, undereducated boob of a social worker entered the scene. Her role it seemed was to irritate me.  I was able silence her though how I am not sure.  It was possibly the aura around me that read "I hate social workers, my kid is dying, you need to get away from me or you will be next!"  I can't be sure.  

The orthopaedic surgeon on call came rushing into the room and introduced herself to me and said that Ailish's surgeon was on his way to the hospital.  I had also heard this from his resident earlier.  She also confirmed with me that I wanted to be in the room.

 Ailish's surgeon was next to fly in the room.  I remember his red coat and eyes that burned into mine as if saying "what the hell happened?"  He assessed the scene a bit and situated himself beside me on my right which was the left side of the bed.  He asked me if I wanted to remain in the room.  Immediately after that the on call doc had to make sure that the surgeon knew that she had asked me all ready so much so that she said it to him twice.   For some reason Ailish's surgeon spoke to the social worker saying something along the lines that Ailish had done so well etc etc.  What I wanted to scream at him was "quit talking to her I HATE HER! This has nothing to do with her!"  I didn't.  

All I could see of Ailish was her mid torso.  There were so many people in the room and afraid I would be forced to leave I stayed back and out of the way.  I only wish I had placed myself in a position to see Ailish's face or somewhere where I could have touched her.  There are no do overs in death and dying.

There was a general surgery resident on the right side of the bed ready and willing to perform any heroic measures in an attempt to save Ailish.  What he came up with was drastic and likely would have been a gruesome mess ("well you all better gown up" said the ICU resident) and a dead kid still would be the end result only now a carved up dead kid.  I will forever be grateful for him wanting to do it even though between Ailish's surgeon speaking to the mass of people and my acknowledging nod that the time was now to call the code and declare my beloved gone.

 That was the scene.  There of course were other honourable mentions such as the ICU attending who was kind, gentle but honest when giving almost a warning call when twenty minutes had passed with no response from Ailish that the end was coming.  She played a big role that night more so than just the overseeing of the code. 

 Those last moments, the events of the three days from surgery to death are the videos that play in my head on repeat maybe not as often as they did but they are there at the ready just awaiting the play button to be pushed by any number of triggers.  You know at the end of videos where you can watch bloopers and alternate scenes etc?  When the mental videos play that's when I think of all the things that I would have liked to have said and done.  There is of course the scene where the kid magically responds to the electrical shocks sent shooting through her body and medications coursing through her veins and wakes up right as rain and we leave the hospital in the five to seven days as originally planned...

Don't you hate it when a movie doesn't end the way you want it to?

The Bed

Friday, April 26, 2013

If only....

                                   If only she would would be coming home from school.

                                                  If only she were here for me to hold
If only I could hear her laughing

                                                                            If only

Wednesday, April 24, 2013

A vent

Have you ever had people in your life where you think, I would totally do the time if it meant you were no longer in my life?  I might be having a day I'm not sure.

I think in everyone's life we have those folks whether they be family members, employers, coworkers etc.  They really detract from our quality of life but for some of them we have no choice but to develop the skills to deal with them.  That would be the mature thing anyways.  Tonight I'm having a foot stomping, head banging just give me a half a bottle of ativan and I'll be fine time.

You would think you get to an age where more things roll off your back and you get riled up less by things.  To some extent that is true for me.  Unfortunately however I have become less tolerant of invasive pain in the ass type folks and definitely less willing to accept stupidity from people.  I'm not talking about the people who have come about their problems honestly and have a lower IQ.  I am talking about the honest to goodness I have no common sense, no consideration and big BIG boundary issues types.  Those are the ones I have a hit on at this ripe old age.

Maybe I should give sedation a try....

Monday, April 22, 2013

That's what she said

"Mommy I really want us to adopt a baby girl. Maybe we should get a breast feeding one". "Oh and who would feed it?" " Maybe you would because you have better boobs". Two things are important to remember about these statements;

1) it's not just me that would like a new baby  

2) I have better boobs

Thursday, April 18, 2013


In the last hours or minutes before the alarm went this morning I was dreaming about us preparing to attend my youngest's funeral.  It was the day of and it dawned on me that I had not informed some of my family members that he had died.

I'm sure there is a way longer blog post to this but it remains slightly early to be coherent.

Suffice it to say that though Prince H does have a tenuous hold on life if you listen to textbooks he is for the most part healthy in spite of his yucky fever and cold right now.

I know where the dream came from as I had read about a baby I had been following who had hydranencephaly (like Ailish) who passed away a couple of days ago and read it right before sleep.  The not telling people must be because the family chose not to be apart of the internet family for children with hydranencephaly and so we did not find out until last night.  We all cyberloved on this baby as we waited for her to find her forever family.

Sweet adorable baby Clara.  Find Ailish up there won't you and give her a giant squeeze and kiss from her mother.

Oh...and you won't be seeing my H up there for a really really really long time!

Wednesday, April 17, 2013

Oh Ya!

If an old style video camera fell on a foot in the forest would it still make a sound?

Hells to the ya it would and it would make enough sound to make the other trees blush!

Sunday, April 14, 2013

As it's Gala Season this might be worth repeating. Powerful Panties

It's gala season.  Perhaps we should revisit last years adventure last year's shopping.
This is a repeat post.

I am attending a gala in a couple of weeks.  This year it is a Medieval theme.  I am generally a party pooper where costumes are concerned.  Ever since I outgrew Halloween costumes lost their appeal for me except on children and occasionally the dog.  This then had me shopping last night for a dress.  I detest clothes shopping for myself.  It requires putting on items that have numbers on them and not just any numbers.  These digits have power Man.  They can serve to feed your ego or stomp it further into the ground than that of an acned, knock kneed, metal faced teenage girl.  Not only is there the number to contend with it is having to be locked in a room with one or more mirrors showing every knook and cranny of a body that has never caused you much pride and with the lighting in there...oh the lighting!  If you didn't think you looked old and haggard before let me tell you the combined effect of those mirrors and the lighting will have you sobbing in a heap faster than my dog poops on a clean unattended carpet!

So back to the dress.  I tried on three.  Two long and one short.  If I didn't look above the neck I thought they were all ok.  There was one I liked more than the others though.  Black, floor length, thick spaghetti straps (don't know if that's what you call them but so be it) and it was bedazzled.  The back was made of bedazzled straps.  It had me considering it in spite of its relatively high price tag.  It was what I would call slinky (call me a fashionista!).  It was smooth and pretty.  There was the problem...I am not smooth and well..let's say beauty is in the eye of the beholder.  I ventured out of the dressing room so that a salesclerk could help me with some ideas on lingerie liposuction.  What this miracle worker of a woman brought me was an item that was life changing. I was now an educated woman.  I had been schooled.  What was this wonder garment you query?  Well it was Spanx!

I know that I am far behind the well dressed population and probably the appropriately dressed and that if What Not to Wear was a show filmed in Canada I would be top on everyone's list to nominate (I'm glad it's not as it is REALLY hard to shop with eleven kids following me...) so I know Spanx is no secret to most.  Of course I had heard of them and might have even seen an entire Oprah show on them but never had I ventured so far as to put any on.  What's the point really as pyjama's hide a multitude of sins.

My life might have changed a little bit last night in the confines of that change room.  I poured my body into that undergarment which may or may not have required two sales girls and a maintenance man and there I was....smooth.  I had ne'er a lump.  Now balloons are smooth and round so don't think the Spanx hid all my sins but it was a step in the right direction.  But there was more....

Now you might be entire post on an undergarment?  Yes because the best part has yet to be told!

I am single.  I have thirteen outstanding children with eleven living at home.  They love on me all day.  They like to be hugged, kissed, nuzzled, sat with, held etc.  I love it.  When I put on that Spanx last night though I found something that gave to me wanting nothing in return.  It squeezed me, warmed me and made me feel good about myself.  It didn't drool, sneeze, or pee on me nor did it leave clumps of fur on any part of me.  It was also considerate of any need I might have.  It provided me an exit strategy for any 'bizness' I might have.  Who knew underwear was capable of unconditional love?  My kids provide that same unconditional acceptance of me and my flaws and I adore every minute with them (there are times though....).  They think I'm beautiful and the best mommy evah (if asking them careful on what day you ask the teens).  There is just something different about a relationship with your underwear.

What was the shopping outcome you might wonder?  I left the store with nothing thinking I should perhaps give renting a costume some thought and attempt at becoming 'fun'.  I am a changed woman, willing to step out of my comfort zone if just maybe for an evening.

Thank yu Spanx.  Thank you.  I am indeed a "Powerful Woman" and should I chose I will wear "Powerful Panties"!o

Thursday, April 11, 2013

Dog on mom convo

 Sooo,ya, since I have your attention I thought maybe we should have a little dog on mom convo.  So like ya know how you thought I was becoming more trustworthy about stuff and you even told people that maybe you liked me and thought I was a good dog?  Well in the interest of honesty and constructive were wrong and if you ask me a bit stupid too.  Don't you know that as dogs once we find a delectable treat such as say....underwear...... Oh sorry.  I got a little dreamy eyed thinking about them.  Anyways once we find something we really like it's like, hmmm  how should I put it?  Have you ever heard the phrase "a dog going after a bone"?  Well it's like that only way way better.

As far as the trustworthy idea goes with you not doing your due diligence and closing the door to the downstairs.... Well let's just say...shame on you!  How can I be blamed for getting into dirty diapers when it's like I was invited to have them?  I know you can see my point.

I think that if you should be mad or disappointed in anybody it should be yourself.  I am just a dog after all.  Yes I know there are all kinds of videos on YouTube about all the clever things dogs are doing and then there's those blasted Service Dogs who if you ask me ruined it for all dogs but in all seriousness you just can't expect that much out of me.  I'm not that bright. But in my defense...neither are you and you are supposed to be the Alpha.  Just sayin
Since I have your attention....

It would make things so much easier if you would just put undergarments and socks in my food dish

If it helps any I really do love you even though you are quite a stupid human

I'm so glad we could have this chat

Sunday, April 7, 2013

Beyond words

This is my one woman wrecking crew?  Isn't she just too much for words?  I love her more than their are words to express.   From the moment her feet hit the ground in the morning until she climbs into bed at night she is on the go.  Years ago the theory was that kids with disabilities would max out their skill development at about age ten.  Phoenix has proven that to be wrong.  Certainly nothing the child has learned to do in the last few years is going to get her on track for university or even from physically or cognitively leaving preschool developmentally.  Far from it.  What she has learned to do however is communicate her needs and preferences better.  This is huge in a person's life and is something that we all take for granted.  To be able to indicate to any average nonspecifically trained person that not only do you want a drink but you want milk over water and chocolate if you have it increases a persons quality of life tenfold.

I have said for years that just because a person is unable to communicate by way of words, signs or gestures does not mean they are not saying something.  They are actually talking all the time it just takes someone willing to listen to hear them.

According to new drastic cuts from our government in its funding of programs for adults with disabilities more folks than not need to get out and get jobs.  No lie...they are talking about my kids too who have little to no self help skills.  I was thinking Phoenix being that she graduates this year for the last time (drama last year in another post) that demolition could be on her resume.  She has the skills if only someone would give her the opportunity to use them...

Hibo's no dummy.  Keeping her eye on the sister at all times

she stripped my bed of all its pillows after dragging her blanket from her room (no easy feat)  and cuddled up on the floor next to the mirror so she could take in her own fabulousness
As parents we are not to pick favourites.  This rule does not seem to apply to siblings.  Journey is Phoenix's  favourite.
We all know it.  It hurts.
Add caption

Saturday, April 6, 2013

organization or lack thereof

I wonder if I could get a little more disorganized?!

The frustration I cause myself is ridiculous and when it is in regards to messing up the kid's activities it puts me way down on the list of good mothers....I am at risk of getting kicked off all together I fear....

Goals:  get poop in a group
            get my sh*& together
            get my thumb outta my butt

and whatever other phrase indicative of upping my game.

I would say there are apps for all of this however you must first download the app, program the app then you can use it.  This all got it....organization.

Tomorrow is a new day.

I hope

Friday, April 5, 2013


As poor quality as these pictures are do you know what they depict?  Maturation and cooperation!!

Swim lessons with school started for the little grade oner and this was the first day.  She was attentive and cooperative and most importantly in a group doing these things.  This is a far cry from this past summer's private lessons where the poor instructor likely took up morning drinking after spending just thirty minutes in the pool with my adored one.

I was not at day two's lesson (don't get me started on explaining THAT one!) so I'm not sure if it was as successful.  The child said it was great so really I'm sure I can take her at her word....

Thursday, April 4, 2013

Take this for what it's worth

This picture is circulating all through my facebook today.  People are loving it!  They are inspired by it. I am offended by it.

I am offended based on the idea that by my child being profoundly disabled was imperfect.  That only in dying and going to where we assume is Heaven is she whole.

I thought that God made us all in his own image.  That would mean that God is white, black, Asian, First Nations, gay, straight, disabled, able bodied etc etc.  Why then is it that when a person with disabilities dies that we consider them healed?  We say they are free to run, skip and jump without the encumbrances of what their lot in life was here on earth.  From my perspective my child had nothing that needed 'healing'.

It bothers me no end that anyone would consider that Ailish or any one of my children is less than in the context of God and Heaven.  Everyone knows that those with disabilities are considered dredges of society with little to nothing to offer and to be pitied.  To then insinuate that God sees them as such by depicting and even stating bluntly that no longer are they trapped in their horrible bodies for me (and I only speak for me) repugnant.

Ailish, in her body that she had little to no voluntary control over epitomized what it is to be holy.  The light that shone from her particularly when she smiled and laughed drew people to her.  Her life was one of purity and innocence.  It was impossible for her to commit sin and not because she couldn't move but because sin had no way in.  Ailish knew none of the evils of the world.  What Ailish did know was happiness.  She was happy herself but instilled happiness in others.  She knew love.  All she experienced in her short lifetime was love and it emanated from her every pore transferring to everyone in her presence.  Ailish knew gratitude...what it meant to be grateful and show it.  She knew when her needs were met no matter what time of day that giving a smile, a coo or any signal that what you did to assist her was effective that you would know she was thankful.  Ailish knew what it was to be satisfied and what was enough.  How many of you can say that?  Ailish was not always on a quest for more of anything.  She was content with what she had.  Ailish knew joy.  She could find it in the smallest of things such as a toy chick peeping or God help her, my singing and she found joy every day.

I think in all that I have described it has to be clear that Ailish was perfection.  She was and had almost everything that so many of us strive for all of our lives.  No she did not have a body typical to the norm...far from it.  Her language was not made of words or gestures or even eye gazes but came straight from her heart.  Ailish did not even possess the most critical of organs that doctors have often described as necessary to be human yet she brought out the best in humanity.  Understandably children and adults such as Ailish and the majority of my others will require care all of their lives and the financial support of local and provincial governments and will not put money back into the coffers.  What they have to offer society however is contributory in its own right and in many ways outshines any financial contribution they could make if able.

This all being said, why would Ailish or my little H should it come sooner than later, or anyone with a disability need to be "healed" or "freed" from who and what they are?  I will give you saying "free from pain"  and I will also agree with free from seizures.  I'm all for that. But from who and what they are, count me out.

I just think that comments such as I have mentioned and then this grave marker (which is beautiful and sweet) imply that instead of being born just as they were supposed to be that the children need to be fixed and that they are more tragic than whole and complete.

I realize my perspective is different from many particularly those who have birthed children with disabilities.  It seems to be the common consensus among parents however that though their grief over the loss of what was 'supposed' to be is on a continuum that they too come to the realization of where perfection and beauty really lie in life.

I understand the grave marker and I know from where in the heart of its designer it came.  I think it's beautiful in its own right.  I believe that is signifies the reaching a place of no pain and suffering and an existence of non compare.  I just have been witness to how it is being interpreted by things I have heard over the years and in losing my own child perceived as suffering.

Differing opinions and thought processes are definitely what make the world go round and make life interesting.  These are mine.

Wednesday, April 3, 2013

This might be a bit of a rant....maybe just a little

It's not just my life that is tied up in bureaucracy is it?  Everyone has to deal with it?  The systems that we deal with on a daily basis that run so scared from liability that they tie themselves up in so much red tape that they paralyze themselves and everyone around them from taking any positive action.

School systems....hey about instead of caring whether or not I have just the right criminal record check instead of a standardized one accepted by each school in the system (did you know that each check is enviournment specific?) you check your school security.  The way it works at one of the schools is a person could enter the school without knowledge of the staff and do some serious harm before anyone knew he was there.   If I want to volunteer at each of my kids different schools I have to have clearance forms from each school.  They are all under one board....

PDD otherwise known as persons with developmental disabilities has itself so wound tight that programs, that is if there are any adult day programs left with the new cuts, essentially destroy what the education system helped accomplish for said people with disabilities because of misguided intentions.

Social Services as in foster care and adoption in their quest to provide what is in the 'best interests' of children also run scared of what and how the media will portray any perceived transgressions.  This then (in my opinion of course) does as much potential emotional damage as what the families of origin have done.  Who is the winner?  Often times it sure isn't the children entrusted in their care.

The healthcare system that we depend on to keep us and our loved ones well including doctors, nurses, nursing aides, lab technicians etc etc is bent on protecting those who screw up.  I am all for growth and development and not paralyzing those that make errors.  Medicine is flawed as are the humans that provide it.  It is a risk to be in the profession and put all you have into helping people but the fact is we all make mistakes.  If we are not informed of our mistakes how can we grow and not make similar errors in the future.  A system that says "we don't want to point fingers and blame" is not being accountable.  I will point the finger then.  It was you dopey, inattentive nurse and your LPN counterpart whose only skills seem to be to follow a step by step care plan with zero critical thinking.  It was you, bottom half of your class pain service resident.  It was you miserable, uncaring pain service nurse.  It was you Dr Moron radiologist who can't see a head about to internally explode.  You guys all screwed up.  My kid is dead maybe because of you, maybe not but you lot contributed to how and when it all went down.  Up your game or get out of it!

Monday, April 1, 2013

Sweet 16 party

Here are some of the pictures taken from the teens Sweet 16 party in early March.  It was loads of fun and scored me big points on the mother scale for at least a week after.  I am now of course back in my place.  I have ten years to recover before I have to plan another.  I might be ready by then.

I swear there was no alcohol at the party yet here they are hugging!

photo booth corner was fun

candy bar!  Thank you TLC's Four Weddings show

they all danced almost the entire time

teen friendly buffet....was perfect

DJ enforced adult embarrassment 

candy bags and personalized water bottles

it was like herding cats to get them organized for this picture