I wish I had an ounce of his determination and perseverance!!!

Our three sons are oh so different.  Today I am going to share a video of Shay learning to walk with his quad canes.  Since Ciaran has started walking more and more independently, Shay has become determined more than ever to keep up with his bro.

Cris put this video together of Shay's continuous attempts of getting up on his feet.  These attempts have largely been initiated by Shay - a few weeks ago, he spent an hour and a half in his room by choice practicing and falling over and over again.  

Shay's perseverance and determination truly amazes me.  Watching him try and try again reminds me of how blessed I am to have such a fighter on my hands.  I have said it once and I will say it many times again - I wish I could be more like Shay!

If you have five minutes, click here to view the video.

I promise that you will be inspired :)


Are you ready for this???

I am sooo proud of Ciaran!  He's had an amazing few months.  Ciaran has on days and off days, on weeks and off weeks, and even believe it or not - on months and off months.  We are so thankful that we have had a few really amazing months.  Physically, emotionally, academically and more importantly socially - Ciaran is maturing.  He's becoming more aware of himself and his surroundings.  He's finding a voice, taking more risks and socially does not want to be left behind.

He's 98% toilet trained and he is beginning to initiate walking independently throughout the house.  Yesterday he rocked - take a look and join in our celebration!!!  Didn't know if this day would ever come...if you want to join in the celebration....click here.....I promise you, you won't be disappointed!!


First Day of School


On Friday, it was Ciaran and Shay's first day of school at St. Mark.  They were beyond excited and very proud to be heading off to 'big boy' school.  I walked them into the school - and they ran for their classroom - heads held high - proud to be there and proud to be themselves.  My heart swelled with pride, I often wish I could be more like them!

Summer Loving...

We are LOVING our summer....we love our new house....we love the weather....we love all of our wonderful family and friends that have come to visit us...we love the peace...we love the quiet...we are exactly where we belong....a few pics from the last few weeks...








AND....I had to save the BEST for LAST - I have to say that Ciaran has a lot to SMILE about these days -  he has been wearing underwear all week with NO accidents - I am SOOOOO proud of him - so hopeful he will be fully trained before he starts at St. Mark in September....GO CIARAN!!!!!

Cortical Visual Impairment


So Maureen, Ciaran and I had a very successful road trip to Pittsburgh! We left Burlington on Sunday around noon and arrived at our hotel around 6:00pm after a few wrong turns thanks to my malfunctioning GPS system.  We got settled and then headed out for a quick bite to eat. Ciaran was pretty darn cute going to sleep that night.  He kept lifting his head up to make sure that Maureen was still in the other bed - each time he realized she was, he flashed the most heart melting smile :)

On Monday morning, we got up, got showered and headed out for a hearty breakfast before Ciaran's assessment.  Our appointment with Dr. Roman was at 11:00am.  She spent over two hours assessing Ciaran's vision and I must say her assessment was so eye opening!!!  It provided so much insight into Ciaran's visual world and his difficulties with visual processing, visual organizing, and his inability/challenges in processing visual clutter/complex visual designs.  Dr. Roman diagnosed Ciaran with Cortical Vision Impairment back in March, Upon further testing, it is so obvious that Ciaran has CVI. If you are interested in better understanding what exactly CVI is, click here .

How I have continually been told for the past five years by the leading vision specialists in Canada that Ciaran does NOT have CVI (because his vision is too good) and instead delayed visual maturation is BEYOND ME! This is a huge piece when it comes to Ciaran's education - thank goodness we were introduced to Dr. Christine Roman. A sentiment that she shared during the assessment that really struck a chord for me was "If Ciaran FAILS in school - it is not because Ciaran is FAILING - it is the school FAILING to provide Ciaran with the appropriate accommodations necessary to meet his vision needs as a learner" - what an empowering and exciting insight for Cris and I!!!!


Picture of Maureen and Ciaran playing prior to assessment

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School is Out for SUMMER :)

School is out for summer and I have to admit I am so excited to be off!  Already our summer is off to an amazing start - the hot weather has allowed us to get a lot of use out of the pool which is amazing therapy for Ciaran and Shay.  I think Cris and I are reminded daily as to how lucky we are that we found this particular house for the boys...it is absolutely amazing and we are so thankful that we find ourselves here...

I have a trillion posts to catch up on and am hoping I can get back to a bit of blogging this summer.  Tomorrow morning Ciaran and I are heading out with Maureen (PT from Sunnybrook and friend) to Pittsburgh for an eye assessment with Dr. Christine Roman.  Back in March, Ciaran had an informal assessment with her at a 'teach and share' at Sunnybrook Hospital.  She provided more insight into Ciaran's world in  45 minutes than we have gotten in years elsewhere.

She diagnosed Ciaran with Cortical Visual Impairment - Stage 7.  She taught us how Ciaran's organizational system in his brain is quite disorganized and taught us that we would need to teach Ciaran strategies and salient features of everyday items to help him organize his system and have information available for easy retrieval.

I was thinking about his system tonight after he went to bed.  As I was thinking, I walked into the Playroom to tidy up the boys' toys and found this....what Ciaran was organizing before he went to bed tonight.  He is such an enigma to me sometimes!!!!  Can't wait to share what I learn in the next few days!!!!





Inspired - Can only hope Ciaran and Shay will be so determined!

http://ca.sports.yahoo.com/blogs/highschool-prep-rally/inspiring-elementary-schooler-cerebral-palsy-runs-amazing-400-154523256.html


This is an inspiring video that shows the power of positive thinking and what children can do with a little encouragement. No matter what Matt's athletic future holds, he, his family and his classmates will always have his gritty, inspiring and joyous 400-meter jaunt during an elementary school field day to look back upon and smile.

My biggest fear is not what will become of my boys.  But instead the fear of whether or not they will be treated by their peers with dignity, respect and as equals.  So far I have been so impressed and moved by Ciaran and Shay's peers...I hope and pray that this will continue as the boys get older.

Days and weeks have gotten away from me...

The days, weeks and months have just gotten away from me.  Being back at work has taken on a whole new level of busy.  All is good, I cannot complain - I just have little time for other things at the moment.

We had the Case Conference for Ciaran and Shay's transition to St. Mark on Friday.  I have been beyond stressed with the mere thought of this transition.  We have been beyond blessed in the past few years with care/schooling for the boys.  My mindset in the past five years has been that we have been preparing the boys for their school years - luckily I felt quite confident in this task - despite the fact that this preparation has been all encompassing.

I feel that in this transition to elementary school, Cris and I have much bigger fishes to fry - I feel at this point, we are beginning to prepare Ciaran and Shay for LIFE.  Beyond overwhelming to think about...

To prepare for the Case Conference, Cris and I along with the help of a few close family friends (sincere thank you to the Shippels - could not have done this without you!) helped bring our vision for the boys future to fruition.  The video we presented for both boys really gave a glimpse into how truly far they have come in the past five years and what we hope and dream for their future. 

Thought we would share....enjoy!!

Ciaran's video

Shay's video

Day 90 - Saying Goodbye

A week ago today, we had to say goodbye to Cris' dad and the boys' beloved Ovo at his funeral mass.  Ovo was a gentle man whom his grandchildren adored.  He will be greatly missed.


Joaquim Parreira
March 11, 1943 - March 19, 2012
God saw you getting tired
When a cure was not to be.
So he closed his arms around you
And whispered, "Come to me"

You didn't deserve
What you went through
So he gave you eternal rest,
God's garden must be beautiful
He only takes the best.

And when we saw you sleeping,
So peaceful and free from pain,
We could not wish you back
To suffer that again.

Day 89 - Nada Chair


Usually after a round of Botox, Shay's legs are really loose.  Unfortuantely, Shay has been a bit under the weather for the last two weeks with a bad inner ear infection.  When he is sick, Shay's tone and tightness tends to creep up on him which is so frustrating for all of us.  The goal following Botox injections is to build Shay's muscle and strength in Physiotherapy sessions and stretch the muscles as much as we can daily to try to maintain his muscle length.  The Nada chair is one of the best and easiest ways to get a good stretch of Shay's hamstrings and adductor muscles - and as you can see in the picture above, he is tolerating it nicely.  Another good way to stretch his his legs is after a nice hot bath as the muscles are much more relaxed.  A bonus that came with our new house is a hot tub - we are hoping to have it cleaned out by the end of Easter weekend so that we can add the hot tub to Shay's stretching regime.  He is very to go swimming in his hot tub.

Day 88 - Wednesday

I was so sure that Rowan would be walking before his first birthday.  He has been creeping along the furniture confidently since he was ten months old.  Well he is getting close to thirteen months and he is still not walking independently.  Instead, he is literally running through my house with his very own walker.  He is a madman in his walker - running forward, backwards, navigating around corners, through halls....his walker is his tried and true right hand man - he brings it everywhere with him!

Day 86 - Mission Impossible?


18 is my favourite number - it is now and it always has been.  18 is my soccer number.  Sadly, 18 is the number of days I am behind in Mission 365.  The past month has been overwhelming on so many levels.  I am back to work and we have had so many things to work through with our boys, ourselves, our family. I have pictures to account for the last 18 days and I am going to work backwards to fill in the gaps.  That being said, I have decided that I too must move forward with my posts and fill in the gaps as time permits...or the task will become impossible....as will my mission.

Day 71 - Happy Birthday Ovo!

On Sunday March 11, 2012,  we gathered with all of Cris' family to celebrate Ovo's 69th birthday.  I am so thankful that we all had the opportunity to be with our Ovo to celebrate such an important day with him.  Despite being gravely ill, Ovo enjoyed the couple of hours he had with his sons and his grandchildren whom he absolutely adores.  I've always been really touched by Cris' Dad's interest and love for our boys.  It makes me really sad to know that the boys will never really have the opportunity to truly get to know him.  Happy 69th Birthday Ovo - today, forever and always....



Day 68 - Happy Birthday Baby Boy!

Happy Birthday Rowan!!!  You have brought such an immense amount of love, joy, and laughter to our lives in the past year.  We are beyond thankful that you are part of our little family.  You amaze us daily.  We love you more that any of us could ever express. 



Day 66 - Cortical Visual Impairment

Okay - I am soooo far behind on Mission 365, yet determined to catch up.  I have downloaded all the pics for the first seven days I am behind on.  Last week was a huge week of appointments which comes with lots of things I want to share.  So much to share that I have not found the time to write many of the posts....I just have the pictures downloaded.  I've decided that I will post the pics with a sentence or two...and will catch up with my writing when time permits.  If I don't get back on this, I am afraid I will fail my mission the second time around. 

Tuesday was a day of  tremendous insight for Cris and I.  Maureen our PT from Sunnybrook arranged for Ciaran to have a functional vision assessment from Dr. Christine Roman a renound researcher and clinician in Cortical Visual Impairment....(more to come)

Day 65 - Botox

Today Shay received his 4th round of botox.  This time the lead up to the botox appointment was a bit emotional for Shay.  When I told him two weeks ago that the botox appointment was coming up, he got very upset and told me he didn't want to go as it hurt too much.  Of course, my heart just broke for him.  It was probably a good thing that things went down the way that they did as it helped Cris and I better prepare Shay for the appointment ahead.   We talked about the procedure and told him what an amazingly brave boy he is and just reinforced over and over again whatever he needed to hear.  It was a bit of a wake up call for me.  So much for a little four year old to take in - and as per always, he took it all in stride.  Oh how he continues to inspire me!

We changed the routine up a little bit this time around to try to help calm Shay's anxieties.  We had Shay pick a toy for being brave prior to the appointment so that he could bring it along the day of.  We thought this may keep his mind occupied and hence make him worry less.  He chose a big log truck and it seemed to have done the trick.  Shay was much more focused on getting his log truck then he was on the pain he would to endure to get it.  As you can see in the picture below, he was pretty chuffed with his new fleet :)


We did get some fantastic news today at Shay's appointment.  Dr. Kim did an ultrasound on Shay's legs to take a closer look at his muscles.  Usually at this age, the muscles start deteriorating because they are not being used - instead the tone is the stabilizer.  To Dr. Kim's surprise, Shay has big muscles in his legs - a huge reinforcement for us that all of the efforts and driving that goes into PT appointments are soooo worth it.  We were beyond thrilled to say the least!!! 

Day 64 - Back to Work March 5

March 5 marks my first day back to work.  I have very mixed feelings about returning to work part-time.  Of course, I would much prefer to be at home with my little baby boy.  He grew up way to quickly, it really hard to think that nearly a year has already passed since we welcomed Rowan into our family.  On the other hand, Rowan is going to a daycare with a lovely care provider and a lot of young kids that he will have fun playing with all day.  I think the interaction, more predictable schedule as he is not be running around with me to appointments will be really good for him. 

We have had an INSANE schedule the first week back to school (which is why I am one week behind on posts).  I will do my best to get caught up.  It is hard on the crazy weeks - because when we have big appointments - there is so much more to post and I want to take the time to do each appointment justice especially with such significant ones.  We definitely had some breakthrough appointments this week....stay tuned....in the meantime, I will do my best to maintain some sense of balance in my life now that I am back to work...

Day 63


Today we worked on finishing the final touches on Rowan's room.  It has been a long time coming.  Here is the quote that we put on a decal for his room.  I love the quote and I think that it is the perfect choice for Rowan.

Day 62 - Reading before bedtime

Day 61 - DC Man


Our house is a proud supporter of DC shoes.  Ciaran and Shay's have been wearing them for years as they are one of the only shoes that fit over their AFO's that still have a little bit of the cool factor.  Today Rowan joined his brothers as a DC supporter and man did he ever look cute in them :)



Day 60 - Monkey See Monkey Do


Rowan follows Ciaran and Shay around the house like a little puppy.  He chases them, encourages them to chase him and just tries really hard to do whatever they are doing.  When they are in the mood, Ciaran and Shay love entertaining Rowan.  The giggles flow endlessly around here.  I am so glad they all have each other.

Day 59 - My new mantra

Day 58 - Independent Soul

Shay is one independent soul.  He demands that we give him the opportunity to do everything on his own. He does not want any help - he just needs time.  He is the keeper of the sunroom (known to them as the playroom).  When he decides that he is done playing at the end of the night, he closes shop.  He tells everyone to leave the room, turns out the light and closes the door all on his own.  No one can be in the playroom if he's not in there. 








Day 57 - Isolating a Child with Disabilities Can do Lifelong Damage

Just read an amazing article entitled "Isolating a Child with Disabilities Can do Lifelong Damage".  To read, click here.

The end of the article is what most struck a chord in me.  I count myself lucky that Ciaran and Shay live in this day and age where children with special needs are more accepted and embraced.  That being said, this in no way takes away from my fear and anxieties that they will be defined by their disabilities or their equipment now and in the future or that they may be socially isolated by others because of their disabilities.

The more I think and worry about it, the more I realize what happy and inspiring little souls Ciaran and Shay are.  Their attitudes towards their challenges make me want to be a better and more determined person on a daily basis.  Their love for life and learning is contagious.  How then could others isolate them?  I am learning that isolation is a result of "ignorance".  The "ignorant" children and parents are not ignorant in the negative sense of the word.  They just don't know perhaps how to interact with someone that is different.  I genuinely think that the isolation occurs sometimes for this reason more than any other.  Looking back on my own life, I can remember a number of peers/colleagues that I didn't interact with as much as I could because I didn't want them to feel different or I didn't want them to think I pitied them.  Looking back, I was so in the wrong.  In trying to be empathetic, I was actually isolating.... Because I was not exposed to children like Ciaran and Shay when I was a child, I never got the lesson that individuals like this were actually exactly like me - in nearly every sense of the word.






So a big job in the upcoming months, years, decades is to help others realize how normal kids with special needs are. They really are just like any other kid. They have more obvious struggles than most - but they don't necessarily have more - their struggles are just more evident to the human eye.

At the end of the day, my number one priority is that Ciaran and Shay remain happy, go lucky, confident and determined little things who always strive to be the very best they can be.  As the article outlined, children with disabilities are far from weak - Ciaran and Shay are actually two of the strongest people I have ever met in my lifetime.  I often wish that I could be a little bit more like them.  I have worked with children with special needs for over fifteen years now - I have always been empathetic and compassionate but I can say wholeheartedly - I had NO idea what an incredible journey each of the kids had been on to have gotten them to the place they were at, at that moment in time.  Perspective.

I think I could go on and on.  But I won't.  I will finish in saying - Ciaran and Shay, I hope that you continue to shine so brightly.  I am so proud of both of you and am so in awe of you.





Day 56 - JOY

The boys had an absolutely amazing day today.  Tina came over with Ericka and Alessio.  They showered the boys with love and attention and Ciaran and Shay completely ate it up.  The pictures tell the story much better than I can.  I think the name 'JOY' for this post is so evident in the pics below.

Thank you to the Lunas for an awesome day!  We love you!!!






Day 55 - Dreaming of Summer...


We were supposed to have a snow day today.  We were supposed to get snow and freezing rain.  It didn't happen - so I am cheating and using a picture Cris took last week of the backyard of a winter wonderland...except, I am not digging this winter wonderland.  I know we have had a great winter but I am done.  I'm sick of snowpants, jackets, hats, mittens and boots everyday.  It gets so tiring and adds so many minutes to getting out the door every morning.  Bring on the spring, bring on the spring!!!

Day 54 - Good people


Jessica came over today.  The boys adore Jess.  They haven't seen her since the beginning of the summer, but the minute she walked through the door, it was as if no time had passed.  Seeing Jess, and the boys reaction to seeing her really got me thinking..

We have sooooo many amazing people involved in our lives.  Ciaran, Shay and Rowan are so blessed to have so many quality people who take a huge interest in their lives.  It's inspiring really - they are growing up with role models of all ages.  They are loved.  They are cherished.  They are respected.  They are happy.  They are in love.  There are so many incredible people who are helping to shape our boys - and we feel beyond lucky that each and every one of you take such an interest in our boys - it makes a significant difference - you bring joy, love, and confidence to their lives and for this we are so appreciative. 

Day 53 - The Lokomat

Yesterday was a pretty cool day for Shay and I.  We were invited to be involved in a training session at Bloorview Hospital for the Lokomat Treadmill which is a 500,000 piece of equipment.  An amazingly inspirational foundation called Three to Be (for more info click here) raised enough money this year to purchase a Lokomat for Holland Bloorview to research the benefits of use for children with neurological mobility impairments.  Unfortunately, we are not able to be in the study as we are not affiliated with Bloorview - but it was exciting to at least have a chance to give this incredible piece of equipment a shot.  As per usual, Shay was pretty incredible.  The equipment and cameras were pretty intimidating, as was the fifteen plus people being trained in the room.

I have some really cool video footage but the file is too large to download onto the blog.  I will get my IT guy on it :)