Rescue me. Please?

Rescue me!  Please!  I am not a Christmas tree!  Is there a rule stating that rescue dogs actually have to come from a shelter?  If there is could someone hook me up with one of those no kill kind?  I would really appreciate it.  Maybe one around Beverly Hills or wherever those Hollywood types rescue animals from?  I could so see myself living in Hollywood!  Where's Simon Cowell when a dog needs him?  He's always sending people to Hollywood surely I am beautiful and certainly talented enough to go.  I can eat socks and stuffed toys waay better than anybody else.  I can totally do my bizness where I'm supposed to (well most times...ok sometimes) and heck it only took me ten minutes to sit still for this picture!  Oh I should add that I have wicked skilz at irritating people.

There it's settled.  Rescue me and take me in your arms.  Rescue me, something something something charms..... What do you expect?  I'm a dog not a singing chimp!

Put Up or Shut Up!

We are worthy, we are exceptional, we are capable.  We are energetic, motivated and experienced. We are love personified, accepting unconditionally.  I say these words about us as a family of 14 (incl me).  I have grown weary of campaigning to raise a child I know we are more than ready for and who so desperately needs us or anyone in fact that is ready to fight for her.

 Folks in authority and those who stand in judgement of large families....if you don't like how many children I have then for love of all things holy put your own hand up in the air and say you will do it.  You will raise the child whom society has deemed unlovable and unworthy.  If you cant do that then please allow those of us who want to and can, to do so!  Phew!  I needed to get that off my chest....for the one millionth time in my parenting journey.

Take action

"We are not all called to adopt these children into our families. But we are all called to look at them, even though it makes our eyes burn, and be willing to let their needs disrupt our lives."
~Kristin Swick Wong

That's IT!

I have, effective immediately, banned the teenagers from talking to each other...

Awwwww

Today we were out for lunch and accompanied by an adorable five year old my friend was babysitting.  She appeared new to being in the company of a small person like herself in a wheelchair.  At first she was a little disconcerted by his coughing which he does often as dealing with secretions is an ongoing battle.  She accepted my reassurances that all was well.  For most of the lunch the little girl ate and played with her food and coloured with the provided book and crayons.  As we were readying to go she puts the colouring book in front of H, tries to offer him the crayon and speaking softly she was telling him that he could have a turn.  When it was obvious to her that H was not going to take the crayon she asked me  if H was able to colour.  I told her no he wasn't able but it made him happy to watch her do it.

As we walked through the parking lot this precious five year old pointed to H's chair and asked why he couldn't walk.  I said his legs don't allow him to walk.  I then added that his brain was unable to tell his legs to walk.  The adorability factor was raised when Sweetness said "well maybe I could show him how to walk".  Couldn't you just melt?

It is these huge teachable moments that I love the most as a parent of children with disabilities.  Even after all these years however I have yet to come up with the best answers to the questions little people ask but I hope that by stating the facts as they are and with a positive attitude that they will carry the message no matter how poorly verbalized.

If everyone could approach people with disabilities of all ages with the same innocence and open heart just as this little girl did the world would be a much better place not just for my children but human kind in general.

Can't win

Turns out that the answer the teen is NOT looking for when she asks you to make comment on a pimple is that it is so big, shiney and red that it could guide a sleigh.  Who knew?

In my defence however I did try and downplay the blemish and she was all like "are you crazy?!"  and I was like "until you pointed it out I didn't see it" and she was all like "are you blind?!" and so I was like "ok, it's so big, shiney.....". (you get the picture).  Who can win an argument like that?  She might as well have asked if her pjama bottoms made her butt look big (they don't Honey.  They totally don't!)

I try folks.  I really do try.

That was before

It used to be when I saw a family with a lot of little kids close in age that I thought how lucky they were and how fortunate.  Now when I come across such a family all I can see is within a few short years a house full of teenagers.  I might even be heard to mutter a prayer for the family which may or may not begin with "Forgive them Father for they know not what they have done....."

makes sense

"I am six so I do not wear bras but when I am older I will wear yours".  Why not, I think, nothing else in this house is sacred why would it be different for my lady wear?

Backwards house

Things are a bit backwards at our house it seems.  Little grade oner has homework three nights a week.  Each night she is to braille her week's spelling words and form two to three sentences using the words.

The kid LOVES this homework.  Anytime she has a chance to braille she's all over it.  This is no easy task this learning to braille but the kid is an ace at it.  Typing it that is notsomuch the reading of it.

The backwards part of this story is I detest homework.  Didn't like it as a kid and don't like it any more as an adult.  Here's the good news to my story.  This week as we tried to do homework we couldn't get the paper to load.  It's not brain surgery.  No real difference to loading an old typewriter.  Two teenagers, an inept mother and a six year old who actually knows how to work the thing could not get paper inserted.  The word of the night was d.e.v.a.s.t.a.t.e.d.  The child was upset because she could not do her homework. I was elated.  This might be one of the signs she is not biologically my child.

We sent the brailler back to school where it is getting tuned up and every night the child has asked if she is going to do homework.  Hope springs eternal that the brailler has magically returned without her knowing.  We instead have worked on her penmanship on her magnadoodle.

I have high hopes for this child and her school work ethic.  I'm gearing her towards higher education setting my sights on her being a lawyer.  She has a love of arguing to make it a win for her and providing she practiced fancy schmancy law an income bracket making it a win for me (shut up, someone has to look after me later on...).

Birthday Braille.  Giving Aunty Jo a lesson in brailling on her 6th birthday

Demonstrating by spelling words on command

Teaching

Ensuring it is done correctly

Trigger Tuesday (it's now Wednesday but thought of this Tuesday...)

Instead of Flashback Friday today has been Trigger Tuesday.  Weird things triggered memories of the day Ailish died.  This by far was one of the most stupid events of the day.  This was somewhere I think between ten and eleven in the morning just a full day post op from the huge spine straightening surgery.   Since wheelchairs are generally adapted quite a bit to accommodate a curving spine Ailish had to have hers adjusted to fit her now straight body.

You will notice that the child is not crying, screaming, moaning etc in agony as one would expect when being transferred after having such an invasive painful procedure.  In fact it is obvious the kid is not even awake.  She did not stir, budge, twitch or make a sound.  I had been saying for the previous hour that this was not right that something was wrong.  Nobody paid much mind.  This is not normal I repeated.  The seating people agreed that most kids are not like this when getting their chairs adjusted post op.  Everyone just thought the child was especially covered due to good pain management.

It occurred to no one but me that what everyone was looking at was a kid in a coma.

It still infuriates me.

What was happening at this time, in this picture was pressure that was building in her head and would continue to build until eventually it would kill her that night.  The only good news to this day is that at no point did she feel the pain of a head that was about to internally explode.  She was peaceful all day.  Even when all pain meds but tylenol and advil were stopped at my request in hopes of waking her up did she ever noticeably feel discomfort.

I snuggled with her in her bed. I kissed her.  I rubbed her legs and softly patted her chest, all the things she loved.  I brushed her hair, washed her face and hands and changed her gown.  I begged her to wake up.  I didn't have the feeling Ailish was going to die but in having a child with a "devastating" condition it is always a possibility and so as I told her every night before she went to sleep "don't you leave me".

Turns out Ailish had other plans.

Things started to go really bad at six that evening.  Again....no one registered how bad things were.  They should have.  They didn't.  I knew things were bad.  I did not advocate hard enough.

Things got worse again by seven.  I knew it wasn't normal and the teenage nurse either didn't know it wasn't normal or just didn't know what it was and that it was serious enough to alert the doctor.  What it was was end stage breathing.  I know the text book look of this type of breathing, this was different...but the same.

All hell broke lose at 9:00 pm.  Ailish just quit breathing.  Code was called.  The large group of people and student spectators crowded into the room.  They pounded on her chest, shocked her a few times, poured fluid through her veins, tried a chest tube, intubated.  Nothing.  No response at all.

The time of death is listed I believe at 9:32 when all efforts to revive Ailish were ceased.  I know however that time of death was immediately after her last breath at 9:00.

Twenty months ago this week a piece of my heart died.  Ailish took that piece days after she was born and carried it in her tiny clenched fist for all of her eleven years and when she left she took it with her.

I love you forever and always Ailish Angelia Wheatley

Thanks kid

"Nobody thinks I'm very funny today" I bemoan out loud.  "Well I think you look funny" says the six year old innocently.  Thanks kid.

Tea anyone?

I wanted to post proof that I do get something done in a day.  It might just be one bathroom cleaned from top to bottom but gosh darn it I did it.  This might not seem to be a huge accomplishment to some and to you I shout a resounding "SHUT UP!"  

Between the feeding, bathing, medicating, changing again, entertaining and any number of other interuptions to my goal of at least one clean bathroom in the house I actually got it done.

If anyone would like to stop by for tea we will be having it in here as that is about all that got cleaned.

Don't judge me.....

Sure we like winter!

Who says we don't like winter activities?!  Sure there was only three of the kids out there and the rest were in the house with their shorts on vying for any sunbeam they could find but still.  It was to be a balmy -5 today, I don't know what it was while we were out but it wasn't too bad.  I hope this covers the child for the rest of the winter...

He's not just hot...he's like really hot

So a 40 degree celcius temperature is not bad, right?  I know!  Poor boy woke up with it this morning and it has been hard to break.  Tylenol and advil on board with antibiotics too.  It is most likely another urinary tract infection as for unexplained reasons have plagued the boy all his life.  Here's hoping he makes a quick turn around as I have seen more than I need to of our Children's Hospital emergency department!  It's great when you need it but really no place most specifically for the profoundly disabled.  He's been sleeping the majority of the day and I'm hoping he awakens renewed and full of his usual smiles.  It could happen...

I knew I should have put the sitters all on call.  Anyone think I can get funding to have a rotating call list of sitters?  Makes sense to me.  It would be like paying insurance.  I need to talk to someone about that....

My name is Tricia and I am a.....

Some folks might accuse me of having a shopping addiction.  I prefer to think of it as year round Christmas shopping....with most of it never going under the tree....except the stuff bought in the months between September and December.  Who's it hurting?  The children still have food on their plates, tuitions paid and of course enough toys, shoes and clothes to outfit another entire family.  So really....where's the problem?  

Today folks, there was a problem.  Today at the mall my shopping ad...umm...Christmas shopping put both my youngest son's and mine lives in jeopardy.  We could have been killed!  There we were enclosed safely in the elevator that we have ridden in thousands...ummm...the few times we have visited this particular mall when as we neared our destined floor the elevator shrieked, groaned, stalled and landed.  It then opened the doors like nothing had happened.  I had been scratching just under my glasses when the near death experience happened and as we were jolted they were thrown to the floor.  I looked through the glass walls to see if anyone in the mall had noticed the narily averted catastrophe and in true apathetic fashion no one, not one single person took note!

Well I took note people!  It was as they say a wake up call.  I realized at that moment that no purchase no matter how good a deal or how cute one of the darlings would look in that something I had my eye on was worth my son's life or leaving the others motherless.  I knew that things had to change.  I had to change.  It begins here and now....

Hi.  My name is Tricia and I am a shopaholic....

(well I think that's what I will say when I make the change after Christmas....or at least after the Christmas sales....course then the spring clothes will be out and then there is Easter and then....)

K so as I re look at things it's not like we really would have been killed or even badly injured.  I mean how hurt can you get when the elevator falls two stories and maybe into a basement?  Sure its made of glass and all but I'm sure they factor the possibility of it plummeting into its manufacturing.  To be safe next time we can take the escalator.  I'm sure it's safe to take a wheelchair on one of those.  They probably factor that into its manufacturing....