Permission Granted

And so the journey begin to what I hope will be an enlightening experience through the art of the written word!

"A Lifetime Commitment"

Is on it's way!!!

But first, I must ask permission from all of the "real people" who indirectly have made this book what it is...
A Journey that has been given life, that hopefully will have an impact on many a life!  Empowered by change, but we can't make this change alone.

Society as a whole must acknowledge that a person, any person no matter their size ethnicity or disability has something to give!

AND THAT IS, IN A NUTSHELL WHAT THIS STORY IS ALL ABOUT!

Bridging The Gap

Bridging the gap; and what that could mean in the lives of the disabled

This is the "dream" bike that I see for our little Emily.  Only a dram at this moment, but it would mean "freedom" to a little girl limited in what she's able to do.

Granted, she loves her little Fisher Price trike, but as a growing 3 year old, she'll soon be grown out of it.

What then?

Bridging the gap between the two; what is there?

She wants to try her sister's bike; but with her unsteady stature....that isn't a possible option

The good of it all, is that she is connected with the right places, At Home Program and Variety (The Children's Charity) but who is to assist as there is only so many funds available?

Starting out very young (4 months) of age, she got her eye glasses and plagiocephaly {sp} helmet at 14 months funded by Variety, everything else was funded through the At Home Program or via the Canadian Red Cross 2 more prescription for eye glasses lenses and one new frames, two sets of leg orthotics, 2 walkers and a grab bar

oh the trials
Emily Irene

Thankful; this Thanksgiving Day!!!

A NONVERBAL STUMBLING BLOCK

 

From the first to the last preschool day for Emily; all be it only 4 Fridays....She has gone in and conquered some of the doors thought closed to her!   The door to the preschool room.

The reviews coming to light from her (IDP) or infant development program team members or now her (CDP) or child development team members because now as a 3 year old her needs are that of a little girl and not a baby.

 By all accounts, Emily had surprised everyone with her ability to cope and adjust.

Seeing that the\\British Columbia's provincial funding program for 3 year old preschool aids was cut after last school year, there was some question as to whether Emily could cope independently in the preschool environment?

With Emily's eagerness to "try" and for the fact that we enrolled her in a summer program with a similar structure, it was determined that because she seemingly had no problems at that particular point (although in the summer Emily was assisted by her 4 year old sister) it was determined to give Emily a one month trial at the local recreation center preschool

Nearing the end of September, Emily's new  (CDP) leading member, came to the preschool to observe.

The findings were; surprising to everyone that Emily did cope very well and that the preschool teachers were very accommodating to her needs.  Emily knew what she wanted and where she wanted to go......to the gym for play time, to the toys for playtime , to the craft table for craft time to the mat for circle time and to the table again for snack time, She was very able to get onto the chairs, unzip her backpack and set out her snack.

Emily knew when she had to go to the washroom, but because the last there of an aid Emily unfortunately was encouraged to pee pee in her diaper.
,
The only  other discouraging aspect of her preschool trial, which is now to continue the full school year, is that because she is for the lack of a better word, non verbal, that was, is and for the foreseeable  future going to be a major stumbling block. until a system is put in place that \\Emily is happy about using.  She does some signs, but such is not adequate her main form of communicating so for the present is different sounds; she goes (wee wee) to indicate a beverage or she points or goes directly to the fridge or cupboard.

Time will hopefully smooth over this one stumbling block, but as for what she has already accomplished and how far she has come......She is bound to beat and conquer all of the doubters including those admissions made by some of her fist doctors!!!!

The Preschool Years

THAT IS
RIGHT, MY BABY ISN'T A BABY ANYMORE, CUES SHE'S A PRESCHOOL GIRL!

With all of the, if, ands, or but running through my mind, I let Emily tell us what she could or couldn't do! 
Though, for the most part, she is without an audible voice, with her smile and charm, She says, "don't get in my way, I am here to stay!"
Granted, she might require a little more help than the rest of those 12 or so children that are in her class, but she is there and making her own way!
She has things to show and prove like anyone else!  GOD is guiding her path and as she grows to understand that.....
here she is trying on her new shoes...so hard to find the right shoes that she find comfortable to wear her braces.

Here she is on her first day of class; just see the eagerness in her eyes!!!
enjoying her introduction, with help from big sister, Ellie-/Marie

Summers Over

To think of all the hurdles crossed and the ones yet to come

One in every 500 births result in some sort of hydrological condition....

The love of sisters no matter what

Holding her still in the ophthalmologist office before getting new glassess

Casting  for new braces on the left is the braces from a year ago April to August 2013 the size dif


Hydrocephalus, says Emily has low vision, but she does see to maneuver around and find

While her sister can climb to the highest height

Emily knows at 3 years old what she can and enjoys

The dentist she knew when we were there what was going to happen actions say more than words

And she wasn't too impressed

and going to the local fair rounded out the summer

And now on Friday we'll see how she does at the recreation center preschool with no assistance because the government does not provide the funding for 3 year olds
She went to a similarly structured program in the summer and did alright with big sister by her side which won't be the case during the school year.

3 YEARS OF PROGRESS

neThree years and at the beginning, a grime or slim prognosis to even make it this far...with; 17 so many gains....Emily has met so many challenges head on; if pictures say a thousand words; than here goes;

 This was a moment I wanted to capture and keep; August 1, 2010 at 7:05 pm, Emily Irene was born by emergency C-section at 35 weeks weighting in at 6lbs at 15 oz.

This our big girl; the morning of August 1, 2010,  17.5 months old

Emily at 5 days old, after being transferred from BC Children's Hospital to Abbotsford Regional Hospital

Ready to leave the hospital 12 days later

adjusting to home at 27 days o

Shunt placement surgery December 4, 2010

Enjoyment of sitting (11 months old)

Enjoyment of tasting and eating

Enjoying the water

Halloween 

mis little escapees

Three Years;: What A Journey...That Isn"t Over!!!

Somebody has a 3rd birthday today!                     Emily Irene

 And what a three years it had been!

Looking back; how did it start, her journey toward; LIFE?

Everything was fine, up and until around 35 weeks gestation when at a scheduled doctor visit, the OBGYN noticed that a then un-named baby's head was larger than but whose body was of normal per portions.
We didn't know the gender, as the facility that was available to us didn't give that information...that was...until we came back for the final visit.
 So as was practice for a now high risk pregnancy, I was sent to get an ultrasound to confirm.  There they wouldn't tell me a thing....
When I returned to my doctors office, I was I immediately given the sex of the baby and instructions to call BC Woman's and Children's Hospital in Vancouver.
And a parting of "Good luck!"
Now, this was the point where my nerves were starting to quiver, as I didn't want anything to happen to our "Emily."
 At BC Woman's, we were counseled by a group of six doctors, who basically said that IF she Survived, she would most likely be; my impression was, in a vegetative state!  So would we want to continue or terminate?
TERMINATE! YOU'VE GOT TO BE KIDDING US I THOUGHT, TOO TRAUMATIZED FOR WORDS!
THAT'S THE IMPRESSION I GOT FROM ONE DOCTOR IN PARTICULAR...TO REMAIN NAMELESS!
They found Emily to have no recorded leg or or arm movements, so was their conclusion. So we were then bombarded with all the information available!  Useful if administered in the right way, but we felt almost cheated out of the joy of our daughter!
Sunday August 1, 2010 started out.....as we were telephoned by our local hospital to have platelets checked on the Friday before a long weekend (BC Day) my husband |Michael wanted to wait,...but I just wanted to get it done....so that Sunday August 1, 2010 it was...
Sunday morning bright and early 6:30, we were at Abbotsford Regional Hospital and then it was off to church for what would be a special prayer service for "Emily!"
As we sat by the main church door with glass widows, we we approached by the head pastor to see if that (praying over us) were alright!
Of course we wouldn't object...
So as the service concluded and everyone went their separate ways, we get home only to find our answering machine flashing about 6 missed calls.
By answering those calls, it was urgent that we make our way to Vancouver, but we needed a place for our 17.5 month old Ellie-Marie to stay....
As we though this day way at least one week away, we made arrangement for then and not the present...
So the time between after church 12pm and the time of Emily's actual birth 7:31pm, was spent trying find a second driver, because as knew Emily would be hospitalized long term, we wanted our van to be driven back to Abbotsford for my brother's in-laws to have while they had Ellie-Marie in their care.
She would eventually get there!
So after phoning around, putting out voice mails and such, we finally got some to be that second driver along with a temporary place for Ellie-Marie to stay.
Maybe 3:30 or 4pm we get to BC Woman's....After the admission process was over and I am being monitored in the emergency;  Michael gets hungry and goes to find food.
Upon his return, in a time line it must have been close to 6 to 6:30pm; something that the emergency doctors didn't want to see happen, was myself having continuous contraction so soon and so fast....and because of Emily's head size they were extremely worried...
And to think, they were almost ready to send me home...
Soon after, I was wheeled in to surgery and Emily Irene was born at 7:31pm August 1, 2010.

After a few days in the NICU of BC Children's, Emily was transfered back to ARH for further care.

And That Is A "Wrap!!"

Did those words actually come from this pen?

Yes they did!
From the very first word I penned, to the very last......I can truly say, that this my friend,  is my manuscript complete!
It was a struggle to get started and struggle to endure....so many components....but I believe I have made it through...
To give you a run down of the story behind the story; is one that I wasn't sure would ever be written, because my friend, my life was almost cut short before it even started.
Five years does not a life make, however beyond two hands and two feet there was trials and defeat!
So when did my story begin;
March 17, 1973 running through present day; a whole lot of years, but those years have made me who I am today.
Given the opportunity to change things if I could, would I?  The simple answer is NO!
GOD made me, and through HIS gift of a "free will" I alone made the choices I did!  Good or bad, they were lessons I learned from...Seasons of change; there they were many, but I can honestly say that I am a better person for  it...
A Lifetime Commitment is a story about a little girl, a family, overcoming struggles and heartache, but too one of determination and drive...and I am ever determined to keep that drive alive....
If you have read the majority of my posts, they have been about me, my family and that determination and drive which keeps me going day in an day out...
I thought this story was complete many years ago, but that was before my life became more challenging than before.....Would I change; the answer would still be NO!
My life was, is my journey toward a better understand of people and the human condition to overcome many an unforeseen obstacle...but again that takes drive and determination...
My life; won't you join me as I tell of "A Lifetime Commitment?"

No One is Forgotten

 Through all off the hospital visits and hospital stays, we can not forget our Ellie-Marie.  She is special, she is strong, because she so wants to help out and truly wants understand the needs of her little sister.....Yes she had a tough exterior however with a tender heart and that is how I would like her to be...because is is molded into a little me!

relaxing, waiting as a young person can, in the Huntington/Sumas border crossing.....asleep



A warm day, 85/90 degrees

Waiting at BC Children's Hospital
rough on anyone, especially on the
young.
Emily was waiting for ENT
Ears, Nose & Throat

Yes, Emily has some trouble with her
breathing and nose congestion,meaning
anti inflammatory  nose spray for the temporary
We will see in the next few months if it clears the
problems, if not nasal surgery could be next?

As I said, Ellie-Marie can never be pushed to second place.....This week she is attending Vacation Bible School at our home church, Abbotsford Pentecostal Assembly
She is enjoying her time there; in the pre-k class , listening, understanding as much as a 4.5 year old can, answering and sitting attentively.....what we all like to see.

What is next for the girls during the warm and dry start to July that it has been....

Today, Emily was home visited by someone from the Fraser Valley Development Center, talking about her general development and where we like to see her go from here...

Communication is a key stumbling block, though she is learning/understanding a few signs
Toileting; a big maybe; at 3 years minus three weeks (August 1) is her birthday, she has yet to give an indication that she is toilet ready.

So in the mean while we wait; summer is in full swing, so everyone is or isn't here

We shall see what the next few weeks and months will bring?

Emily's 3rd birthday....

but for the temporary there is little ca.mpers for the girls to enjoy; a morning preschool orientated program at the recreation center.

As for appointments that we know; the pediatrician, the ophthalmologist and the endocrine clinic at BC Children's before there is in October, her return to the ENT at BC Children's to see what the outcome of her nasal issues

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