Healing

From reading some other blogs, I happened upon the TherExtras, where Barbara is running a blog carnival on the topic of Healing. I thought it was a really good idea.... to write on a topic that would make me confront my feelings and reflect on how far I've come.


[Those of you that know me well, know that one of my great loves is poetry. I write it in times of happiness and in times of sorrow. It helps me to sort out my feelings and gives me an outlet to pour out my emotions, so it comes as no real surprise that I chose to put down my thoughts on Healing in the form of a poem.

Those of you that didn't know, now know what a huge nerd I am. The secret was bound to escape sooner or later. On the bright side, I think we should all breath a collective sigh of relief that I chose to express my feelings through poetry and not interpretive dance.]

A couple of things I have to say first: Being the parent of a child with special needs, has not made me a saint or a hero or a perfect mother. Following Kasia's diagnosis, I had a lot of anger towards everything and everyone....including her. I can't tell you that I embraced my situation from day one and went right back to living a normal, happy life. I absolutely didn't. It's taken a god awful long time to get here, but it's been worth it. Kasia has taken me places I never would have imagined, and together we've seen miracles. Because of her, I've met so many special people. How could I now consider myself anything but the luckiest mother in the world?




Restoration of a Soul

Healing is a thing that I found very hard to do.
The early days were fraught with deep despair and anger too.
Sadness had me in it's grip and would not let me go,
And Anger & Resentment were a constant nagging foe.


Such questions swirled around my brain like What? and Who? and Why?
Home Come? would often follow and What If? would be nearby.
But answers never came and so my questions lingered there,
And hung around and clung to me like smoke curls in the air.


Those days I found it difficult to live inside my skin,
And wanted nothing more than for a towel to throw in.
I looked upon my daughter as the cause of all my pain,
Envisioning the things in life she never would attain.


Like holding up her head, or reaching out to grab a ball,
Smiling, rolling, sitting up, or learning how to crawl.
These things seemed so unlikely for a child with such mistakes,
On genes with missing data lost forever in their breaks.


But slowly came acceptance for this child that I had made,
Beautiful and strong and with development delayed.
Haunting eyes and silky wisps of golden coloured hair,
A lack of muscle tone but personality to spare.


Then joy replaced the sadness when I looked upon her face,
And tiny gains were cause for celebration, not disgrace.
This child of mine, so special, such a wonder to behold,
The greatest gift, to walk with her and watch her life unfold.


Accepting her for who she is has helped to heal my heart,
And letting others in to help has also done it's part.
The best advice I ever got: to take it day by day,
Indeed, the road's been long with many twists along the way.


From shock, denial, anger, grief, and overwhelming hurt,
Each step was necessary on this path towards rebirth.
So now I've come to realize how much I've truly grown,
Become the kind of woman not afraid to stand alone,
And say "This is my child!" and with her standing at my side,
Be filled with nothing less than endless love and patent pride.



Kara

Sick Day

As expected, I couldn't really escape getting sick with whatever Kasia has. And let's be honest, escape is pretty much futile after getting a snotty hand thrust into your mouth 2 or 3 times.

So today we spent a sick day together. The day started out normally enough with Kasia in her pj's. But then the pj top got dirty, cold little feet needed socks, and someone insisted on the rather odd idea of wearing an alpine inspired wool jumper on top of it all.

This was the result: (and check out the laid back model-like pose!)




In Kasia's defence, I have to give her credit for some excellent colour matching! It's a well known fact that to effectively mix patterns (in this case: stripes, hearts, diamonds and bears) you must ensure that they all contain the same colours. A+ Kasia!

Murphy's Law

Whatever can go wrong, will go wrong. At the worst possible time, in the worst possible way.

Yup. That about sums it up!

Back in June, Kasia had an appointment with dental at Sick Kids. (It came as no surprise to us to hear she had some cavities, after all, the poor kid had reflux for the first 18 months of her life and threw up at least four times a day.) Due to her age and the amount of dental work needed, it was determined she would need to be anesthetized for the dental surgery. Operating time being as precious and scarce as it is, her surgery was booked for September 24th - three months away. Our only job, to keep Kasia healthy for the 4 weeks prior to surgery, otherwise it would be cancelled.

So I did all I could. Kept her out of preschool for the month of September; limited her exposure to other children; gave strict instructions to family and friends that hugs were okay but kisses were not; and became a hand washing fanatic. I came as close to putting her in a bubble as I could. And it worked. Since June, she hasn't had so much as a sniffle.

So here we are, the weekend before her surgery...... and what happens? She gets sick. And not just sick, but about as sick as I've ever seen her. It started with some watery eyes and sneezing, and quickly progressed to a raging two day fever that I could barely keep under control, shaking, vomiting, lots of crying and the coup de grace..... a seizure. The first one in 7 months.

It means that tomorrow I have to call and cancel her surgery. Depending on when it's rescheduled, I'll have to decide whether or not to start her in the nursery school program before then. It also means the dosage of her seizure medication isn't working anymore, which makes me worry that with all these recent dosage increases, maybe one day it'll just stop working altogether.

Seven months without a seizure and I guess I forgot just how horrible they are.

She's doing fine now - a lot better actually. In fact, good enough to help Mommy in the kitchen with dinner and here's the evidence to prove it:

Did You Know?

September is Childhood Cancer Awareness Month in Ontario?

All across the province, POGO, the Pediatric Oncology Group of Ontario has been celebrating with special events and activities. We, being a much smaller centre than some of the other Southern Ontario cities, planned a smaller event, but it was still a great success!

The pediatric unit at the Northeastern Ontario Regional Cancer Centre hosted it's first open house today in celebration of it's 10th anniversary and we took the opportunity to celebrate Childhood Cancer Awareness Month along with them.

We had a mayoral proclamation, information booths and displays, clown and face painting for the children, a great cake that I didn't manage to get a picture of, and an opportunity for the public to tour the pediatric unit and meet it's wonderful staff.

Here are some pictures of Kasia having fun with the clown:

Having a child diagnosed with cancer was devastating. But meeting other parents and children who have fought so hard against it, getting to know the incredible people who treat our children and come to truly care about them, and becoming a board member for a local parent group that fundraises for these families has been one of the most inspiring and important experiences of my life.

A Kasia Update

Summer flew by at lightening speed. It seems like only a few days ago that Kasia was graduating from her nursery school program. Wow...that was in June! That also brings to mind one of her last days of nursery school and a conversation I had with her speech therapist. The gist of the conversation was the suggestion that Kasia be referred to the assistive communication program. This is the program where children are provided with communication books that contain pictures and/or symbols that they can point to in order to communicate. Sometimes, they even receive talking books - where they press on pictures or words and the book speaks for them.





Last year I would've gone to a dark place at the mere thought of Kasia being referred to assistive communication, but apparently I've grown! I'm trying to see these additional therapies as simply that..... additional therapies that can only help Kasia. It doesn't mean I've given up on her talking - in fact, it's exactly the opposite!



Back to the converstion with her speech therapist in June.....

One of the things she asked of me was to make a list of all the words Kasia could say. I struggled to come up 10. And truthfully, most of the words on the list were cheaters like:

ha (hat)
pa (pants)
ba (mom)
tow(towel)
shur (shirt)

You get the point.

Well, in less than 3 months time, how things have changed! Now we hear hat, pants, shirt, coat, car, cat, hi, bye, dad, bird, bed, towel, plate, pen, paper, open, up, good, bad, hot, cold and I can't even believe it, but words like counter, happy, awesome and water! I'm still "Ba" right now, but that's okay!


So to all those who speculated, and inferred and suggested that she would never talk, well I guess that they can now just go and

eat their own words!

A Rude Awakening

Friday morning as I hurriedly left the house on my way to work, I opened the door to my truck and stared for a moment, puzzled at what I was seeing. Papers, napkins and tissues strewn all over the front seats, the glove box and center console wide open. The scene reminded me of my driveway a week earlier, when a bear had ripped open our garbage and scattered it all over the yard. This however, was not the work of a bear - though I'll admit, it was my first frantic thought, and I actually gave the backseat a quick once over before slamming the door and running back in the house! Rational thought was obviously not at work if I seriously considered the possibility of discovering a bear hiding in the backseat.


So after regaining my senses and realizing that a real live person had broken into my truck and not a 500 pound bear, I was brave enough to go back out and check it out.


Lucky for me, but not so lucky for the would-be thief, I've got nothing even remotely valuable in my truck. I really hope he enjoyed rifling through the used tissues, napkins and antibacterial handwipes that I had been too lazy to empty from my cup holder last week. For some reason, he thought maybe I had some gold bullion tucked away underneath all of that. And though he expected to find some valuable treasure in the centre console underneath the cache of fast food napkins, alas, all he found was an empty lip gloss box, a hair elastic and a dried up tube of vanilla scented antibacterial hand gel. He even pulled apart the owner's manual, apparently looking for dollar bills tucked away between the pages! Boy, did he pick the wrong vehicle, because that glove box didn't even contain a nice consolation prize like a pen!


In all seriousness though, I just can't believe the nerve! To come into our yard and ransack my truck parked right next to our main entrance! It's unsettling. Even though I'm sure it was a couple of young punks, it's still had me on my guard all weekend. It's made me think twice before opening the door at night, and before getting out of my truck when I get home after dark. (Right Kar', don't lie to the nice people....most nights you're in bed before dark.)

Anyways, I guess it's taught me a lesson. I used to lock my vehicle each and every time I got out of it, and for some reason I got out of the habit. (I blame Dino...but I digress.) Society has certainly changed from the one I knew as a kid - where we never locked our doors at night and felt safe in our own homes and neighbourhoods. Where kids could stay out and play til way after dark in the summertime and all their parents had to do was yell their name out the front door and they'd come running.

I wonder.... is it still like that anywhere in the world?

Look Out Son...I Think She's Gonna Blow!

A few months ago I embarked on a mission - a mission to get my child into a day care or nursery school program and have her needs attended to while she's there. Unfortunately, it's turning into Mission Impossible.


Last month I took half a day off of work to meet with our worker from Agency #1. This meeting was to talk about Kasia, her issues and what her specific needs would be in a daycare setting. Also, this meeting was apparently necessary to have her referred to Agency #2, the umbrella agency that provides help and services to children with special needs. And in turn, this referral was required in order to have an assistant provided for Kasia while in her nursery school.



So all was well. We had the meeting and got referred. I chose the nursery school, met with the teacher and was anxiously awaiting Kasia's start date.



Yesterday I decided to call the teacher to find out if they had been able to find and hire an assistant for Kasia. To make a long story short: No. They've not yet been approved by Agency #2 for the funding to do so. When they get approved, then they'll post the job advertisement and start interviewing. (But she's supposed to start in 3 weeks!)


And here's the BEST part!! If they don't get the funding for an assistant, then I or another caregiver will have to accompany Kasia to the nursery school each day and remain the entire time she is there. WHAT??!?? So the deal is, I pay $120/month for two half days per week AND I get to miss work to be there as her unpaid assistant?? That's the most ridiculous thing I've ever heard!



Oddly enough, yesterday I got a letter in the mail from Agency #2 regarding Kasia's referral. Part of it said this:


"The next step would be to meet with you to gather pertinent information about your child."


That's right.... another meeting. A meeting to give the same "pertinent information" that I gave a month ago to our worker from Agency #1. More time off work!



Part of me wants to call this person and ask if I can't just provide the "pertinent information" over the phone, but then I wonder if it would affect the application for funding. Asking for something in person is always much more effective.



This all just makes me crazy! Why do we have two separate agencies that do basically the same things? And why don't they communicate?!? As a parent of a special needs child, I feel like at times, in order to get the services my child requires, I have to endure some pretty absurd things. Retelling the story of Kasia's birth & subsequent genetic diagnosis to no less than 25 doctors, residents, and fellows at Sick Kids is a prime example. It seemed like every time Dino & I would have 2 minutes to breath, someone in a white coat would show up in our room and ask us to tell our story "from the beginning." This feels like the same thing. I don't know if they realize it, but re-living the memories and giving out the details isn't easy. In fact, some days, it's pretty hard on the ol' spirit.

Angry tirade over.

Random Weekend Musings

As fast as this weekend was to arrive, it seems to be over even quicker. It was a quiet weekend for us, filled with the usual grocery shopping and house cleaning, so if time flies when you're having fun, I've got no explanation as to why this particular weekend flew so fast!


Fall is definately in the air now, with cool, crisp mornings and nights that have you reaching to pull the blanket up around your shoulders. It's my favourite time of year. Back to school, shopping for new clothes, the colours of autumn, piles of leaves and the smell of pumpkin pie. Okay, maybe I'm rushing things a bit.....

So maybe all these thoughts of fall put me in the perfect mood to grab Kasia and take her fall clothes shopping. Well, that and the fact that the kid grew like a bad weed and suddenly all of last year's pants are hitting her around the shin. I just can't believe how much she's grown in the last few months! (And for the record, those are pj's - and mismatched ones at that!)







So another task that we got to this weekend was putting up the wall decal in Kasia's room. Thank you Dino for helping me with that job! He's so meticulous, so careful and so focused on every last detail. He even insisted on using a level for crying out loud!

I think it turned out great and so does Kasia. When we lie in bed at night, I say to her, "What's that over there Kasia?" to which she replies, "Bewrds!"

Bless the Children!

No, it's not a mini Mother Theresa - it's goofy Kasia wearing my shirt, which she put on all by herself! Way to go Kashie!


There's just one problem..... her head is in the arm hole.

Extreme Makeover, Bedroom Edition

It's been such a long time coming, and it's still not completely done, but here are a few pictures of Kasia's bedroom makeover to this point.

Kasia helping to get Daddy motivated to paint by drumming out a tune on the paint cans:

Ahh...freshly painted and the chandelier that I bought over a year ago is finally installed. And no arguments about the paint colour this time!

Loves her new bed! (Now if she would only sleep in it.....ALONE!!)

Picking out her own clothes already......