Tolling Days

 

And this is what big sisters are all about; helping out the little ones in need.  Teach them young, so when they grow older they will hopefully have a greater understanding of those who can not do for themselves!

Yes, another fun filled day at our local mall.

Though I try and make all days as interesting as they can be, sometimes it is down right hard physically and mentally.

Today was, one of those days.  A day when, it started out to be the usual;  take my husband to work at 5:45 with kids in tow and then come home to do house chores, referee the girls when one wants the TV and the other a book read....

and somewhere in there find the time to sit down at the computer relaxing with a cup of  coffee...sometimes the computer is on but nobody is home....a lot of the time!

Days like today and however unfortunate it is, this is what I signed up for....A lifetime of caring for those who can not or find it challenging to care for themselves!

The days was going according to plan, me in the laundry room....and the girls doing; breakfast, TV, playing....when I come out of the laundry room I hear Ellie shout, "the phone is ringing!"

Of course as my day goes, I am doing 101 things at the same time, so consequently "my phone" gets under a pile of papers on the counter.  Do you think I can hear a cell phone ring under a pile of papers from behind a wall?  No, but my "always in the fridge daughter" oh ya they both do that....so then, my eldest daughter hears the phone and picks it up.....

Remembering that Ellie is still only four and a half, as she picks up the phone and recognizes the voice on the other end....she starts on her little conversation....

"Who is it" I ask.  

"Daddy" she says.

Knowing that it is only 10:15 in the morning, this can not be good.  Sure enough, it was a call of distress.

He has had a seizure and isn't faring too well, thus we (I) have to stop what I am doing, disrupt the girls from their morning routine, (some moments like this are better than oters) and go and bring him home...

These days are....well they are ones of ; usually when all is cooperative, Michael comes home and goes straight to bed.  And there he stays under the cover, for sometimes two maybe three days straight.

What to do with the girls?

As I said, every time is different, sometimes they both lay low and nothing is to be of concern and then there days like today...Upon Michael going to bed, Emily wanted to go to bed too, but of course that did not last...

So what is the one thing I think of when all needs to be quiet in the house; taking the girls to an activity center or the mall.  Since play places can be quite pricy, I tend to resort to walking around the mall.  However after, we did make it to a low or no cost play place;  McDonalds

Walking the mall, there is stop at Dairy Queen for ice cream and then the grocery store for. a mainstay  of milk and bananas

Today however, I went to the mall with a plan,,,to see is Pay less had any shoes for the girls; Emily was in need of a good Sunday pair and Ellie...well Ellie just wore her "ballet slippers" out

Success, the girls have new shoes and were semi worn out upon our return home...

Inclusion

This photo was taken out of the Vancouver Province; Friday June 14, 2013
"When Anne Belanger received her son’s grade two class photo last month, she immediately stuffed the image back into its envelope in disgust.
In the photo, the students and teacher line up neatly in three rows. But one student is missing from the group.
There, in the far right edge, her son Miles Ambridge sits in his wheelchair, separated from the rest of his classmates by an empty space on a bench. Despite the obvious gap, the seven-year-old beams for the camera, craning as far to the side as his tiny body will allow to be closer to his friends.
While she can hardly stand to look at the photo, Belanger is overcome with anger and sadness when she does."

Read more: http://www.theprovince.com/news/photo+that+broke+mother+heart/8523150/story.html#ixzz2WHwYSsdV

The dishonor this young man must have been feeling, to be singled out from his class mates.
Solutions are quite simple when added to equation, instead of having this young man, in large part "out of the picture", have the benches parted a little more or have the teacher seated so that he could have been included, properly supported in his wheelchair.

For anyone using a supportive ad of any kind, inclusiveness so be the order of the day....This boy shed "real" tears for a "real" desire; to be included and not ostracized!

I applaud the courage of this young man and his family...as I know there are many a family with a disabled child who cry out for change but are never heard!

Will this bring change?  I'd like to hope so, but...society as we know it a hard nut to crack, because we are all a part!


Let us put compassion, inclusion on the other foot; what would your reaction be if you were this little boy who is clearly full of life?

Let's not take away the joy of childhood, when it clear that so much has been taken away already!

I know for my child, Emily; thankfully she is not confined to a wheelchair, but in say so, there is a lot that in future years in going to be out of her reach.....but....let them TRY!

 But remember who they are; built with drive and passion

 

A unexpected hospital visit

My baby in a hospital bed, now haven't we seen this one before through sickness, shunt surgery, revision surgery and now the occurrence of  three violently rough seizures, activity which was told us might occur eventually but....
It is not like I haven't seen violently active seizures before, because I have.... my brother having the kinds of seizures where he could be walking along and then fall down hard ; foam at the mouth grand-mall seizure .
In our youth, I was with him often times when we would be walking along and all of a sudden he would just drop.  Knowing what to do is so vitally important, because of the nature of the seizure, he could very well have injured himself.  Clearing a safe landing and making sure that there was nothing around him to block his breathing or the flailing of his limbs which would accompany his seizures.
Now, for those just walking by having no knowledge of a person with violently active seizure activity, this could be the most terrifying event to witness?  For someone who has seen a person with seizures all my life, and had to accept the responsibility of coping with various reactions by the viewing public....a stronger person....Yes, but more than that, it has given me a life passion to assist anyone who is under the "disability" banner.
However, getting back to my baby, Emily......she isn't a baby though at three years old on August 1st.
On Monday June  10, 2013 just beyond 8pm, as she was settling down for the night, she, all of a sudden sat up with a combined look of horror and confusion on her face...
Then, she let out one giant spew of vomit...as her eyes (stigmas) began to violent  dance while her upper half violently trembled.
The scarey part for me wasn't the seizure itself, but for the fact that I couldn't rouse her no matter how hard I tried.
Holding her hand waiting for a little squeeze as I gently called her name, but nothing.
The first thing I did, was to look to our daily guide and help book of Facebook where I got a number of helpful caring ideas.
As I read comments and waited for about a half an hour which seemed like an eternity, with no visible change in Emily's condition I took a friends advice and to her to the emergency ward of thew local hospital.
There, they waited no time knowing her medical history and rushed her in. With an oxygen mask on her face and an IV and sedation medicine being pumped through her system , soon after a CT scan was ordered to see if the seizure was being caused by added pressure in the brain of a shunt blockage or something, but nothing could be found.
Finally, it was determined that Emily had just had her first seizure however violent it was in nature, it was something we were warned about and somehow expected.
For Ellie our 4_+ year old, the fear that swept over her not finding Emily or myself in our home when she awoke....she phoned me with the voice of tremble and tears.
After she was assured of the situation, Ellie was alright...knowing that daddy had seizures and so too did her little sister.
Emily was already on a prescription of Carmazipine  which has since been doubled.
So we shall see where we go from here...

NOTHING that I CAN NOT DO

JUST A SIMPLE POEM

 

Mud puddles are sadness and tears

To somehow forget the pain of yesteryear

As children play there conveniently omit yesterday

Innocence and passion children play all day

In a child should fall or make you cry

Just jump in a puddle and throw mud in his eye

How simple a concept for such a plight

But just think how hard that makes you fight

Though as we age and innocence has gone

We find ourselves singing what kind song

Whether on the playground or the business floor

How is it determined who gets the more

This is a disability of sort

As we’re always coming up short

So if you are not at the head of the class

Look and who isn’t coming up last

When things were settled by a roll in the hay

You can sit back and hear the laughter roar

With success you’ve completed the chore

Though yours might not have been

A healthy or a wealthy scene

Journey back to those childhood years

When the threat of mud calmed your fears

So when you feel that kiddie urge

Jump in puddle and splurge

Go as wild as you will

But don’t forget in the moment to be still

If mud puddle make your hear come alive

Go ahead and bring out that child inside

Make those mud puddles just as wild

Whatever’s happened in the follies of youth

It’s become far too easy to see through the truth

Don’t you then wish for a simpler day

Sometimes life is not that easy for her, even though it looks fun to play up on the kitchen counter....she is really trying to tell me something....WHAT SHE WANTS FOR BREAKFAST.

The simplest of tasks, for Emily and many children like her find it frustrating, to find the words for every day tasks.

An audible voice, something the majority of us take for granted is for the minority, a daily struggle. So now as she slowly approaches her 3rd birthday, I want to make the simplest of tasks not that frustrating for her in whatever way I can?

Her vision isn't clear enough to let her use descriptive  pictures, so this is why I am letting her express her self in what ever why I deem appropriate for the given situation.

Those are my girls. both are daredevils.....try anything, for Emily anyway this statement is turning to be true....SHOW ME I CAN'T

SISTERS