The Brave Little Soul

There is no denying that Dave and I are on a path today that two years ago we NEVER could have imagined we'd be on. Sometimes when I'm alone with my thoughts I find myself asking, why? Why me? Why Liam? Why do bad things happen to good people? Why would an innocent baby be brought into this world only to struggle? Why? WHY!?

Then I came across this poem - it really is inspirational. And makes you wonder - do things really happen for a reason? So much of what is expressed in this poem has actually happened in our life - to our family, friends, neighbours and even strangers. Liam is an inspiration to so many - and he really has brought so much joy to so many people! Maybe there is a reason for everything! It's a comforting thought...

The Brave Little Soul
By John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?"

God paused for a moment and replied, Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. i tell you this-it is the greatest miracle of all.

Many souls have bravely chosen to go into the world and suffer -to unlock the love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am a brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. it was good. the world was a better place. the miracle had happened

Crazy Talk!

"MOP!" Doesn't seem very exciting does it?  But it can produce belly laughs out of our youngest son! It's his official 4th word. Yes, he says "mama", "milk", "more", and "yea", but really is he just exercising his lips?  Babbling? Or actually  speaking...we can't really tell because those words aren't 100% complete yet. But MOP - there's no denying it - MOP is MOP! Dave and I are longing for Liam to begin speaking. He (and we) are becoming increasingly frustrated with not knowing what Liam wants/needs. A sighted child still not speaking at 25 months could walk to an item they desired, or at the very least, look and point to it. For Liam everything is a guessing game. Let me break down a typical meltdown for you:

Liam: Waaaaaaa - WAAAAAA (Liam crying)

Mom: Liam, use your words, what do you want?

Liam: Mi (which could be anything from milk, to more, to bed, to bath - everything is 'mi')

Mom: Liam, do you want (then we roll through the endless list of possibilities until we get to an item he wants) your piano, your turtle toy, your music, your rocking horse, a snack, your milk (thankfully the list really isn't THAT long since Liam really doesn't have a lot of toys to clutter his space - a few toys that he can learn and explore to the max are just fine for him - and really - it's more beneficial for him to have fewer things that we can really explain and help him understand)

So after we exhaust the list...most times (praise god) he will give us some indication - usually with a nod and a 'yea' that we've listed something he wants...we present him with 'his wish' and all is well with the world again - at least for a moment.

At times, we hear Liam 'singing'...once at daycare Monika swore he was humming a Barney tune! I believe it - he and Barney have a close personal relationship - they dine together every morning for breakfast! Liam, Barney and the rocking horse - morning must-haves!

Other times Liam will just rant away "bala aksdlf kadjf jakdl", it's as though he's practicing sentence structure. His busiest time honing this skill is at night in his crib. He entertains an audience of many each evening - Ellie, Doggie, and Tyrone from the Backyardigans to name a few - BFFs! They all share the sleeping space in Liam's crib.

I can't wait until the day that Liam articulates something  to me - actually calls out to me and asks me for something - maybe tells me how much he loves us all! But for now it's all just 'Crazy Talk' - and we'll take it! (but not for much longer I hope!)

Liam enjoying
his new MP3 player,
Summer 2011
at Nan's in Brighton.

Here today, gone tomorrow...

Well it happened... one of my worst fears... Sal has left her position as Enhanced Staff Teacher with Liam! You see, I put it out there in the universe...I wrote the words in this blog...and it happened.

(There are a few other words I like to put out there in the universe and maybe they'll happen too - like "OHIP will fund Liam's out of country medical procedures"...there's a biggie - let's see if THAT happens - hey you never know - you can always dream! LOL)

Back to my 'worst fear'...

It was a regular Monday - I left work to pick up Liam and when I arrived at daycare all 'seemed' normal. Then...Sal began to speak....the words kept coming despite my best efforts to will them to stop:

"I had an interview with OFVIC (Ontario Foundation for Visually Impaired Children)...and they offered me the position of consultant, I start in 3 weeks"...

Everything became hazy. I started to sweat, time stood still, I started to cry... (cry are you kidding me... it's not like I was just told my 5 week old baby was blind or anything... you'd think I'd save CRYING for a more appropriate crisis.) Crisis...was this a crisis? Not in the true sense of the word - but it was a loss, a devastating loss for Liam...for me. I walked into the nursery area of the daycare, where Liam was sleeping - with no knowledge of what was happening to his world. One of the most important people in his life was leaving him. I know, it all seems a bit mello-dramatic. But in that moment...at that time...it felt like it was the end of the world...again.

Sal's words came out of left field - they knocked the wind out of me - took my breath away. My mind was racing, I was mad, angry, hurt, betrayed, confused all at once - I HAD to get out of that daycare...I NEEDED to talk to Dave - the ever-present source of stability in my life.

I picked Liam up out of his crib, clumsily put on his jacket and walked out of the daycare barely able to mouth the words 'good-bye' to Sal and Monika. I cried the whole way home. Some sappy song was playing on the radio which only magnified my sorrow and all I could think was, "I hope the Chardonnay is chilled!"

Fours weeks have passed since that 'Regular Monday', and once again, life is returning to normal. Liam has a new enhanced staff worker, Monika - she's our 'other angel' from back in the 'Heaven Sent' post. She's known Liam since his first days at daycare way back in August 2010. It's funny how things just fall into place sometime. Sal gave 3 weeks notice, her last day was Friday, April 15th, ironically, Monika's last day of school was Friday, April 15th - she started her new full time position with Liam on that following Monday... If it hadn't been for Monika I don't think the transition to a new Enhanced Staff Teacher would have been so smooth! THANK YOU Monika for being there for Liam, for stepping into Sal's shoes... I KNOW you and Liam will make great strides together and I can't wait to see all the amazing things you do together!

I will always love Sal for what she's done for Liam and our family. Since Liam came into our lives, so many people have said to us, "everything happens for a reason". I used to believe that those people were just trying to say something nice - to make us feel better. But you know, maybe they're right...

Maybe Liam was meant to be in Sal's life... to guide her towards a path she may not have discovered on her own. Liam and Sal have brought so much positivity into eachother's lives...and I truly hope their story doesn't end here. To be continued...

So my baby is blind... Now what!

When I first discovered Liam was blind, my heart broke. Here was this beautiful baby boy who would never be able to see his own beauty, or even the faces of his parents and siblings. I admit to being depressed, extremely depressed, with a dash of suicidal thrown in…but I knew I couldn’t stay that way forever – and I WANTED to get better. It was a long road to recovery (with many dark, very dark days), but I’m happy to say I’ve made it!!! I remember thinking, “I will never again wake up happy, N E V E R”. I believed that every morning the first thought to enter my mind would be, “OMG Liam is Blind”, followed by a devastating sadness in my heart and weight on my chest – the weight of a heavy burden that I would carry on my shoulders for the rest of the day, the rest of my life. A few months after Liam’s diagnosis, I connected with another mom of a visually impaired girl who was now 9 years old. She assured me that one day, I would indeed wake up and the first thought to enter my head as I opened my eyes WOULD NOT be, “OMG Liam is blind”. Of course even though I agreed with her as we spoke, I didn’t believe a word she said. But you know what! …she was RIGHT (and is a fellow Newfoundlander to boot!)

Liam looking oh so cute! Summer 2010

Because of Liam’s blindness, he is experiencing some physical delays. He didn’t roll over until he was between 9-12 months old (or sometime in there - this was still during my denial/depressed/semi-suicidal stage so the details are a bit hazy), he was ‘tied up with pretty scarfs’ until 12 months to be able to sit on his own without folding in half – face directly over feet position, and still can’t hold his own bottle/sippy/cup (give me strength). He is now 18 months old and does not crawl or walk (which in some strange way could be viewed as a positive!).

But here’s what he CAN do! We’ve taught him some ‘Baby Sign Language’ (which just AMAZES so many people...’HOW do you show him’, I’m always asked. We physically put his hands in the position over and over - and eventually, he gets it! I know, CRAZY!). To date, he signs for “more”, “all done”, “thank you”, and “play”. He says “Momma”, “Dada” which actually sounds like “a-a”, “more” and “milk” which sound the same ...”muh”. He has mastered getting into a standing position from a seated position, and will eat just about any food you place in front of him – albeit with his fingers – he is not a fan of ‘the utensil‘ yet, but that’ll come. He splashes the water out of every bath he takes, is wearing the wood from his rocking horse, loves ANY genre of music – as long as there are no commercials or long pauses in between tracks, blows the BEST air kisses on command and can melt a heart in an instant! Liam is a HAPPY and HEALTHY baby who loves to laugh and play and doesn’t know that he is different. I am so thankful for that.

1. Bouncing away in his jolly jumper, 10months old.
2. Pouting...but looking oh so cute! 12 months old.
3. Swinging in the backyard, loving the motion, the wind, the sun! 14 months old

I can’t explain what it meant to me to hear--for the first time--positive things about blindness and about what Liam would accomplish. Somewhere I came across these words of wisdom:

    “The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exists. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.”

Liam STANDING at the bath!
Mommy and Lukas are thrilled! Feb. 2011

OMG how this baby
LOVES his baths!

I think the most important thing is not to make assumptions. Blindness affects HOW a child learns, not WHAT he can learn. He will learn differently, but he will learn.

So far, having a blind child is not much different than having a sighted child. Here are some of the things I’ve learned and read about raising a blind child:

1. At times, loud noises can be disruptive and overwhelming because of sensitive hearing. Kids may need to be removed from a noisy situation.

2. Do NOT touch their hands. They are their eyes.

3. Do not just give or take away a toy. They can develop Fairy Godmother syndrome. They believe that things just magically appear and disappear and they have no control over it. Instead, make a noise with the toy off to the side. Let the child hear and find that toy themself, tell them if you are taking or placing a toy for them, and use directional cues, “Liam, your rattle is on your left side/in front of you/behind you”.

4. Textures are very important. Let them feel anything and everything.

5. Explain everything. Tell your child about the colour, texture, taste, temperature. I talk to Liam constantly – I’m actually used to it now! Another tip from a mom told me it would become ‘second-nature’ and it has!

6. Music is a life saver. Music can calm or excite. It is also good for developing the brain and fostering a love of music. Many blind people are amazing musicians...

7. A positive attitude is very important. Children can pick up on attitudes even before they can talk. Do not think that because your child is blind they cannot live an adventurous life. Believe that anything is possible and they will too. Don’t make them afraid to experience life.

8. Treat them like any other child. Do not pamper them or do things for them because you feel sorry for them or think they can’t do it.

9. It’s never too early for braille. Just because they are young, doesn’t mean they can’t learn. Let them feel the braille and get used to it. It will help when they are old enough to start learning to read. A sighted child sees print everywhere starting from infancy – even though they don’t understand it for years. Expose your visually impaired child to Braille at a very young age – we label EVERYTHING with Braille – this was a tip from the CNIB, they lent us a brailler which works like a labeller.

10. Rocking is normal. Liam usually rocks when he listens to music – however sometimes it can become a habit for blind children (not for Liam specifically) – and rocking for no apparent reason isn’t socially acceptable so something we will teach Liam is to not ‘rock for the sake of ‘rocking’. It will be a lesson in manners, like no elbows on the table and use please and thank you.

My hope is that I can share some of my knowledge and maybe help another parent who has just discovered or will discover their child is blind or visually impaired. I know I found a lot of comfort from speaking with moms and reading about other parent’s experiences and I hope that one day I can help another mom the way so many have helped me.

If you need a little smile today, check out Liam on YouTube.
You won’t be disappointed!

Newfoundland Girl

I just came across this little blurb while 'creeping' around Facebook. Since I'm a true Newfoundland Girl - and proud of it - I just had to share...

"Sweet girls come from the south, Barbies come from California, but us Newfoundland girls have fire and ice in our blood! We can drive in the snow, handle the cold, beat the heat, be a princess, throw a right hook and drink with the boys! We can cook a wicked good meal and if we have an opinion... You bet your ass you're gonna hear it!"

God I just love that, and I think it sums me up nicely! I miss St. John's, Signal Hill, Roaches Line, Cape Spear, the Waterfront, the Regatta, the Avalon Mall, Chesses Fish and Chips, Venice Pizzeria and George Street!

Heaven Sent!

Liam started daycare in August of 2010. This was a monumental event in our lives considering when I first learned of Liam's vision problem I thought I'd never return to work, I'd be his sole care-giver for eternity, that no daycare in the land would accept him, that my life was over - again, this was back during my DARK DAYS when I could barely peel myself out of bed, aka, the dark pit I continued to fall deeper and deeper into. I couldn't have been any more selfish or wrong!!!

One of Liam's
first days at daycare
 

Enter Schoolhouse Playcare...we know the centre and ladies well as my middle son Brady attended this very daycare from infancy until he started JK. The ladies in the infant room have been nothing less than extraordinary with Liam! They’ve all been so open to my never-ending suggestions and constant ramblings about all things 'vision', so patient about having to do a little/a lot extra with Liam, and very welcoming to the steady stream of resource professionals who visit Liam in his daycare setting. I was absolutely terrified that the ladies wouldn’t know what to do with Liam and would be apprehensive about having him in their care – within the first days of starting daycare my fears had all but vanished!

By December of 2010 Liam’s daycare hired Enhanced Staff Worker, Sal. Because of Liam’s disability, he is entitled to a one-on-one teacher during his time at daycare. Sal is has been heaven-sent! She reminds me of a friend, Melissa, who cared for my oldest son Lukas, now 7 years old, when he was a baby – tragically, Melissa and her dad were killed in a car accident 5 years ago when Lukas and her own daughter were just babies. Melissa did wonderful things with Lukas and I will forever love and remember her for that. I feel as though we’ve been blessed with that same type of person having Sal in our lives for Liam. She spends 6 hours a day with Liam teaching him about everything and anything! Sal has developed her own IPP (Individual Program Plan) where she outlines his development in various areas; cognitive, physical, sensory, and social/emotional. Sal has identified his strengths and needs in each of these areas and every day she works on activities with Liam to help him meet goals she has set out for him. Are there really people like this in the world….YES!!! Sal has accompanied me to Liam’s visual playgroups and even to his Speech/Language development appointments at Grandview Children’s Centre! My biggest fear is that some other daycare or children’s facility will gobble her up because she has SO MUCH TO OFFER! But just for now she’s all Liam’s! We LOVE her and she loves him – but really, what’s not to love! (insert big proud mom smile here…)

At the end of each work day I make my way to pick up Liam and he is always found HAPPY in the arms of Sal or our other Angel, Monika. These girls are truly 'heaven-sent' and we are so blessed to have them in Liam's life!

My new obsession

Anyone who knows me can attest to the fact that I have a little ‘crazy’ running through my veins. And no, not "Dexter Serial Killer Crazy", but a little "Hyperactive Kristina Crazy". And although I don’t accurately fit into the diagnosis OCD I do have somewhat of an obsessive or addictive personality. When I get something in my mind I just can’t let go! Mind you, I’m not the ‘tap the light switch 10 times before turning it on’, or the ‘scrub my hands clean until the skin breaks” type, but I do have some degree of obsessive compulsive tendencies. My latest obsession seems to be noticing, reading, learning, promoting, educating, meeting, befriending, and researching anything and everyone that in some way has any association with blindness, visual impairment, vision loss – whatever you want to call it.

Jose Feliciano (Singer/songwriter most known for his Christmas tune “feliz navidad”)
Ronnie Milsap (Country music singer)
singer Apl.de.ap (of Black Eyed Peas fame)
Peter Falk (aka: TV’s Columbo!)
Sammy Davis Jr (The Brat Pack)
And yes, closer to home, The greeter at my local Walmart

What do all these folks have in common? 

Varying degrees of visual impairment.

Liam with Aunty Karen, Summer 2010

For some reason I’ve become somewhat of a magnet for people’s ‘blind’ stories too. It’s as though they feel the need to share and say, “hey, I know someone who’s blind too, can we be friends now?” Although I make a joke of it, I do find it comforting that so many other people share their stories with me. Stories of men, woman and children living life, a FULL life, with varying degrees of vision loss. It’s becoming less of a big deal in our household that Liam has a significant vision loss. Or as Dave refers to it, “Liam’s little vision problem”. Ha ha! Hey we all have our coping mechanisms! Whatever works right?