I often find myself 'stalking' Liam. I just sneak into his bedroom while he's sleeping and watch him, or sometimes even when he's awake. I just watch...observe...most times in amazement. He plays or sings, sits up or walks around. YES, I said WALKS AROUND! For months now (or more accurately, YEARS) we've been waiting for that monumental moment where Liam takes his first steps. He's been doing VERY well at daycare with Amra (his new one-on-one teacher who is AMAZING in every single way). Amra encourages him to use his walker for sometimes up to an hour a day! But try as I may, at home, Liam REFUSES to walk but instead crumbles himself into a lump on the floor, if we DARE to attempt to - god forbid - make him use his legs!
The other nite, I invited Dave on my 'stalking' excursion. We walked upstairs and could hear that Liam was awake. I turned on the light in his room to find him 'cruising' around his crib! He was smiling from ear to ear, singing away! We watched him walk, sit himself down and by using his crib rails, pull himself to a standing position.
Is this kid so intelligent that he's figured out, "...and all I have to do is cry, just a little, and mommy and daddy do EVERYTHING for me; including carry me, feed me AND, the ultimate coo, hold my sippy cup while I relax in their arms!!!" I think slowly but surely Dave and I are realizing that Liam CAN do it, but he CHOOSES not to.
Enjoying a summer swing, 2011
Like father like son -
Liam in daddy's lazyboy,
complete with remote control!
Liam providing
musical entertainment
at Johnny's Restaurant
during brunch
Backyard BBQ
with the family, Fall 2011
Liam's world, although the same as mine, is different. Sometimes while I 'stalk' him, I turn the light on and off to see how it will effect what he's doing. It doesn't...he keeps playing or walking or singing... The other day I witnessed my two older sons walking across the street from the neighbours. I noticed Brady had his eyes closed and Lukas was guiding him across the street. When they got home I asked them what they were doing. Lukas replied, "Brady was being blind and I was guiding him home - that's what I'm going to do for Liam". It made me realize that together, we all have a very 'bright' future. Ironic isn't it?
It's been over two years now since our lives were turned up-side-down - two years of learning, adapting, struggle, sorrow, fear, confusion...and eventually - acceptance - and peace. Finally we feel 'regular' again - just like we did in the days before Liam's birth before we were swept up into this flurry of the unknown.
I still to this day follow blogs of other moms living lives with special needs children - and I still find myself wiping away tears as I read the words that so often mirror my very own thoughts. But more and more each day just feels 'normal'. Really?
We just returned from a routine eye exam in Detroit with Dr. Trese. For some reason I always feel drained - physically and especially emotionally after I return home from those appointments. I feel deflated. These appointments remind me that Liam IS blind and as his mom, his protector, his biggest advocate, there is NOTHING I can do to change it. As though all the acceptance I've built up in the months between appointments is somehow washed away when I sit in Dr. Trese's waiting area and I'm forced to listen to the stories of mom's who are 'just devastated' about their son/daughter with limited vision in ONE eye. I know that to that mom YES it must have been devastating to hear your child is blind in ONE eye - but - they WILL read print, they WILL drive, they WILL nagivate without a cane, they WILL see the resemblance between themselves and their siblings, they WILL know colours and watch the leaves change in fall, they WILL see the twinkling lights on your Christmas tree and watch the sun rise and set - they WILL see your face and know you are there in a crowd of people just by catching a quick glimpse from far across the room.
Just when I think I'm there - that I've 'accepted' that my baby is blind and there is nothing I can do to change it - boom - I'm overwhelmed with grief again - waking in the middle of the night with an overwhelming ache in my heart.
So - are we there yet? Well, the denial/semi-suicidal days are a distant memory...but as for complete acceptance - I think I have a way to go yet.
It was through pure chance that we learned of another Ontario family with a child suffering from PFVS/Norrie's. Until that day in May 2011, I believed we were the soul family residing in Ontario with a child blind from this disease... Through a contact at OFVIC (Ontario Foundation for Visually Impaired Children), I learned that another child residing in Ontario with the same diagnosis as Liam, was successful in receiving Ministry funds for his out of country care with our surgeon ... Dr. Michael Trese!
Liam's applications to OHIP (Ontario Health Insurance Plan) for treatment with Dr. Michael Trese have been denied since December 2009. And how can that be when the ONLY OTHER PERSON in all of Ontario suffering from PFVS/Norrie's has been receiving funding, for the same procedures, with the same doctor, for the past 7 years!
Our MPP Christine Elliott has been supporting us since June 2011. Even after sending 3 letters directly to the Minister of Health, Deb Matthews, Liam is still being denied OHIP funding. Ms. Elliott's most recent letter of September 9th remains unanswered. In this letter, Ms. Elliott asks the question, "How is one family covered and the other not...for the same disease, with the same out of country treating physician, for the same procedure?"
The "other family" (who have asked to remain anonymous for fear of losing funding), were successful in receiving out of country funding only after their MP approached the Minister of Health directly with a phone call all those years ago. For 7 years one little boy has received out of country care that OHIP has funded - and for the past 2 years we have struggled endlessly with OHIP to support our child, Liam, without success.
The taxpayer dollars that have been waisted away at the Ministry's hand include 3 pre-hearing conference calls, an oral hearing, a 3-member Health Services Appeal and Review Board panel with hearing room fees and a court reporter, plus deliberation time which can run into weeks, payment by the Ministry at a rate of $250 per hour in their search for "a local expert" that never materialized - but 3 Ontario physicians all benefited from the $250/hour payment for their time, although no Ontario 'expert' ever did attend or present evidence at our oral hearing. When the sole doctor - a cataract specialist??? (Liam requires a retinal specialist) learned that Dr. Trese would appear via conference call to present evidence at our oral hearing, the 'cataract specialist' suddenly changed his mind' about appearing stating 'he feared legal action'. He backed out just 3 days prior to the hearing. Makes you think doesn't it?
Even at the point the Ministry was made fully aware of the existence of another child residing in Ontario with the same condition benefiting from funding with Dr. Trese in Michigan, Liam's most recent application was STILL denied - and ironically, Liam's application mirrored the other child's application - whose appointment in Michigan was just 2 days after Liam's appointment. His appointment was funded by OHIP, Liam's was not.
Dr. Trese actually commented that his patients living in communist countries have an easier time being funded with Dr. Trese for such rare retinal conditions as Liam's. Italy's government has a contract with Dr. Trese so that those children living in Italy and surrounding areas with exceedingly rare retinal conditions can be afforded the BEST possible care with the BEST chance of success. Meanwhile we sit in Ontario still struggling with OHIP for funding that should have been provided to us at the start of this journey - when Liam still had vision in his right eye - before it was taken away by a botched surgery at Sick Kids Hospital on November 6th, 2009. By a doctor who had seen just 3 other cases in his lifetime - a doctor who should have known better than to touch Liam's eye, the eye diseased by a condition he was unfamiliar with, and lacked the expertise to treat.
It still keeps me up at night - the fact that Dr. Trese is so well known in the pediatric retinal world - that's Liam's case is so rare that only 2 Ontario children suffer from it - that we should have been made aware of Dr. Trese's existence - that another child was afforded this expertise that was/is funded through OHIP - that Liam, 2 years later is still fighting for the same care another Ontario child has had for 7 years. Liam's world could have been so much more 'colourful'...
L-R: Lukas, Liam and Brady. I'm so blessed to have these 3 angels in my life! They are so luck to have eachother!
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
"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.
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...
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!
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!
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!
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?
What to buy the visually impaired child…. The gift of music! It seemed to be the popular choice for Liam this year! And I expect, for many years to come! Santa delivered a drum, harmonica, flute, tambourine, and maracas for Liam's, and our, musical entertainment!
He really is such a 'baby Bocelli' (as in Andrea Bocelli) playing all his little baby instruments and singing in his little baby voice!!! I just love that nick-name given to him by Great Aunt Wanda! So fitting...and maybe by putting it out there in the universe he may just become the next Jeff Healey/Stevie Wonder/Ray Charles! I think Liam "Wonder" has a nice ring to it, don't you?
It’s been 7 months now since Liam’s palate repair surgery. That was definitely the most difficult of his surgeries to date. June 2, 2009 - Another early morning, we arrived at Sick Kids to check in at 6am. Liam’s surgery was the first of the day scheduled for 8am. We knew that this surgery required at the least one overnite in the hospital, maybe 2 nights at the most.
Dave and I left Liam in the capable hands of the Sick Kids nursing staff and ventured out into the beautiful June day and enjoyed a breakfast at EggSmart near the hospital. We made our way back to the waiting room and eventually we were told we could go see Liam. He seemed ok – he was lying on his tummy to allow for drainage out his mouth, he was swollen a little, but was being kept comfortable with a healthy cocktail of painkillers. Once he was moved to the recovery floor we were told he would be watched through the night by a nurse and that it was preferred the parents leave the hospital for that first night. Dave and I spent the nite at my sister’s apartment downtown and ordered pizza and watched some ‘computer’ – they don’t have cable – who doesn’t have cable? The next morning, Dave dropped me off at the hospital with my overnight bag – overnight, not overnight’s’ plural - and he made his way to work. I was NOT prepared for what I was about to see.
The morning after palate surgery
Liam was still lying on his tummy and when I turned him over his eyes were completely swollen shut. His face was puffy and he looked so sad and helpless. I asked the nurses about his eyes and they weren’t certain why this was happening, it wasn't the norm after palate surgery. They just figured it was because the doctors had checked his eyes during his palate surgery. My heart sank! I KNEW this wasn’t the norm as Liam had his eyes checked during surgery many times and nothing like this EVER happened. Why were the other palate repair kids up and eating, some were walking around – why was Liam comatose in his little hospital cot? I was told to try to keep him propped up to help the swelling go down from his eyes and face. It was heartbreaking. He was still very groggy, on a lot of pain medication and IV fluids. By mid-day we were moved to our own room – for ONE nite… well, 6 days later we were released!
2 days post surgery
Sitting up, 4 days post surgery
5 days post surgery
Daddy and Liam, still hooked up
to meds and fluids
HAPPY to be finally going home!
6 days post surgery
Liam REFUSED to eat or drink anything! He didn’t eat a morcel for 6 days straight. The nurses kept him on IV fluids to keep him hydrated, but try as I may, he wouldn’t eat or drink. Eventually, after 5 days alone with Liam at Sick Kids, Dave came and stayed overnite to give me some time to recharge at home. At that point the nurses suggested to Dave that he force-feed Liam his fluids by syringe…that if Dave was able to get 10 mls into Liam by syringe we would be allowed to take Liam home. The next day Dave got 10, then 20 mls in Liam. And so started our 3 month battle of force-feeding by syringe. Liam never has taken to the bottle again – to this day he refuses to even hold a bottle or sippy cup! I was advised by Sick Kids not to force too much, as this would make Liam associate feeding with something negative – I started spoon feeding him fluids – SPOON FEEDING FLUIDS! I’m thankful to say it’s all in the past now… we went from not feeding, to syringe feeding, to spoon feeding, and thankfully now, to a sippy cup – albeit that I still hold for him – but hey, baby steps!
This surgery marks the end of our 'cleft related' surgeries for some time now. Liam will be seen again by the cleft team when he's 3 years old. The next biggie will be a bone graft surgery where bone from Liam's hip will be removed and placed in the cleft area of his palate. This will happen at around 6 years of age. The bone will assist in keeping Liam's adult teeth in place. A nose revision surgery will take place sometime when Liam is between 4 - 6 years old. Followed by many dental interventions/sugeries and possible further nose/lip revisions. Surgery will give him what mother nature didn't - a perfectly symmetrical face - even though he'll never see it. Scratch that - NEVER say never right? Who knows what the future holds...
Well, Liam's glasses finally arrived, and for a while we were doing SO WELL wearing them! When I didn't see an immediate difference in his vision or his behaviour, I became so discouraged that I stopped using them! I've since learned that kids who have had both lenses removed surgically will not see ANYTHING without the aid of some sort of artificial contact lens or glasses. Liam has had both lenses removed so in order for him to have any sort of usable vision his glasses are a must. What might seem like no degree of vision to me might be the world to him! It's not unreasonable that he can only see 1 or 2 inches from his eyes...even with his specs.
You simply can't comprehend the 'mass' of the goggles, ah-hum...glasses... from a mere picture. The term 'Coke bottles' just don't give an accurate visual of these babies! The lenses actually BLUDGE in the centre, so from a profile view, they appear dome-ish (if that's even a word). In the centre picture you can see Liam's long luscious eyelashes...that should give you some indication of the amount of magnification! In the right image you can get a very clear look at his 'brown' eye. This is interesting as he has BLUE eyes! His right eye turned from beautiful blue to brown after our surgery at Sick Kids Hospital in December 2009. His iris has now started to shrink - very frustrating that this is surgery induced - it's a build up of blood from a vitreous hemorage during surgery and subsequent scar tissue! His eye will never return to its original blue colour, our only alternative now is a cosmetic contact lens which we'll look into when Liam is a bit older.
If there was only some magical potion to make Liam WANT to wear the coke bottle glasses life would be grand! Not only are they thick, they're HEAVY! But he looks pretty darn cute if you ask me!
February 2010 trip to Detroit - Right eye surgery:
Liam just before surgery in Detroit
On February 15th we had an EUA (Evaluation Under Anesthetic) and procedure on Liam's right eye booked. We were so disappointed to learn during the EUA that Dr. Trese was unable to operate as Liam's right eye is still full of blood from his Sick Kids surgery way back in November. Until the blood is absorbed surgery is on hold - we're scheduled to return to Detroit in June, 2010 for another EUA and hopefully a vitrectomy/retinal reattachment and repair on his right eye.
We felt deflated. But little did we know how much our appointment with Dr. Ferrence on February 16th was about to lift our spirits! We entered her office not really knowing what to expect - what does a blind baby need with an optometrist! No glasses prescription was going to give him sight - but we went anyway. Dr. MaryJo Ferrence is a pediatric Optometrist specializing in vision rehabilitation in babies. She works alongside Dr. Trese in Detroit. I believe she may be the only one of her kind in all of the United States. I'm unsure if we even have someone like her in Canada! My mom and I went to this appointment a little sadened as our February 15th EUA had been so disappointing. Dr. Ferrence conducted many tests that day, in fact, our entire appointment took 4 hours! She tested Liam's reaction to stimulation using coloured lights - after a few attempts at yellow and green he finally reacted to red light in his left eye! She then put a pair of VERY strong glasses (coke bottles) on Liam, he was lieing on a mat on the floor. Dr. Ferrence then asked me to get really close to his face and speak to him, she said "come on mommy, get close to Liam and let him see mommy's face for the first time". I got about 2 inches from Liam's left eye and started talking to him, "mommy's here Liam, can you see me...". Well his eyes were as big as saucers! His body became totally stiff! Was he seeing me! Was he seeing sights he'd never seen before! Was Dr. Trese's December surgery a success! Although I was directly in front of his face, Liam's eyes were facing to his left. I asked Dr. Ferrence about this and she said it's because Liam is using the inner part of his left eye to see, so by looking to the left, he was using that small patch of vision to see...something! Both Dr. Trese and Dr. Ferrence saw areas of attached retina at our February appointment - she said it would be like looking through a piece of swiss cheese - she gave him a visual acuity of 20/400, and said that rarely does she see babies with Liam's potential in her office! We left that day with a prescription for glasses and so much hope for the future! I'm still a little skeptical, I can't actually SEE that Liam is using his vision - but Dr. Ference says that once we get him wearing his glasses and start exercising his eyes with different light stimulation and eye strengthening techniques that he should start developing some degree of vision in that eye, and we should start to see some changes! She likens it to when a baby has one bad eye - treatment is to patch the good eye to force the bad eye to develop - and it works! So why can't a very strong glasses prescription and stimulation therapy work with Liam! We'll soon find out!
New Glasses!
We're presently awaiting Liam's glasses to arrive around mid-March. At the point we have Liam's glasses in hand we'll start our at-home exercises and begin saying a few prayers! We'll see both Dr. Trese and Dr. Ference for follow-up appointments in the summer. We also have Liam's cleft palate repair at Sick Kids around that same time so it appears it'll be another busy summer at the Reid residence!
As far as milestones go, Liam will be delayed by virtue of the fact he's visually impaired. As he can't learn by SEEing what others are doing around him (sitting, rolling, crawling, standing, eating, using a spoon, holding a bottle, etc.) we have to teach him to do all these things using various methods taught to us by the wonderful people at Ontario Foundation for Visually Impaired Children and Durham Infant Development. So far, Liam is sitting up unassisted, rolling from his front to his back when prompted, discovering his voice, LOVES his jolly jumper and is developing some really good floor sliding skills I might add, and at LONG LAST starting to eat from a spoon (which is particularly challenging because he isn't aware of anything 'coming at him', let alone some 'instrument' - spoon- with a strange textured substance all over it! (Textures are extremely difficult for some V.I. kids). All in all we're thrilled with Liam's progress! He still struggles with head movement, but lately has been moving his head to the beat of music which is really adorable! He's an amazing little guy and I can't wait to see what he'll do next!
December 2009 trip to Detroit - Left eye surgery:
Face down position to keep gas bubble pushing
on retina to keep it in place
On December 18th my mom and I travelled to Detroit for the second time. With so much uncertainty, we didn't know what to expect! Liam's surgery was scheduled for 1130am and we were to arrive at the hospital at 10am for registration. Dr. Trese spoke with us briefly about what he would be doing, a vitrectomy and lensectomy on Liam's left eye. After about an hour, Dr. Trese emerged from the O.R. to tell us that he had successfully removed much of the tissue and stalk that was blocking Liam's vision. He had increased the size of Liam's pupil to allow more light to the back of the eye, and said his retina, although thin, was attached in places and he had inserted a gas bubble to keep the retina pressed up against the back part of his eye. For the next 4 days, we were to keep Liam in a position where he was facing the ground to let gravity assist the gas bubble stay towards the back of his eye. This was no easy task - but in typical "Liam fashion" , he endured all he was required to do! Mind you 4 days in a hotel room with a 6 month old only able to face downwards isn't an easy undertaking! Dr. Trese says Liam's eyes are pretty bad, but he's seen worse. He expects that as a result of this surgery, Liam should have light perception and hopefully some motion vision. And as I've repeatedly said, any degree of vision will make a big difference in Liam's life and that's all we can hope for at this point! Only time will tell. We'll return to Detroit in early 2010 for surgery on his right eye...and now the eye drops begin...21 drops a day! This kid's a trooper!
Liam's Eye Surgeries:
After Sick Kids surgery
In November of 2009, Liam underwent a vitrectomy and lensectomy to hopefully restore/save some vision in his right eye. Unfortunately, sometime during our lengthy 6 week wait for surgery time, his retina completely detatched, and during surgery, was torn. Our surgeon chose not to reattach his retina at this time. Currently, he sees nothing from this eye. But in late December 2009, we will travel to Detroit to see Dr. Trese. He will preform a retinal reattachment, silicone gel and membrane peeling, in the hopes some degree of vision can be restored.
In January 2010, Dr. Trese will attempt surgery on Liam's left eye. His plan is an enzymatic vitrectomy (this is the experimental procedure not funded by OHIP, or performed in Canada, which has given so many kids with PHPV and FEVR a fighting chance at sight), silicone gel and membrane peeling. Again, with the hope of providing vision.
We won't know for awhile if these procedures work, but even to have the hope that some degree of vision will be restored is enough for us! The thing about visual impairment is that there are varying degrees of blindness. Before Liam's diagnosis, I didn't realize just how important ANY degree of vision can be. To even see shadows, or have some light perception can make such a difference in a visually impaired person's life. We want to give Liam this chance!
Liam's Cleft Surgeries:
Liam has had many procedures to date. His most noticable being his lip repair on October 28th, 2009. He looks absolutely gorgeous!
Liam with full tape gear wearing
his NAM to pull together his
palate before surgery
Our first view of Liam in recovery...
without a cleft!
Heading home today! Wearing No-Nos
Dr. Fisher at Sick Kids did such an amazing job! His cleft palate will be repaired around Liam's first birthday. He will endure many other surgeries throughout his life to complete his cleft lip/palate repairs. Nose revisions, further lip adjustments, his palate repair, a bone graft (to assist with dental issues cleft babies have), as well as many dental procedures and a lot of orthodontic work. We have a lot of support from Sick Kids and we know we're in good hands.
Our family...we are...Kristina and Dave Reid. We live in a suburb about 45 minutes east of Toronto. We've been married for 7 years and together have three wonderful sons, Lukas, Brady and Liam; as well as Dave's oldest son, Nathan.
Lukas, our eldest, is 7 years old, attends Grade 1, loves to play hockey, ride his bike, and is currently addicted to video games! Lukas is our kind-hearted and thoughtful 'angel-face'. He fits into his big brother role so wonderfully, always making sure little brothers "Braid" and "Lee-Lee" are happy.
Brady is 5 and attends SK. He is our mischievous one, we like to say he's 'spirited'!!! Anyone who knows Brady can attest to this! He can usually be found wearing his tattered and torn Spiderman costume, that is now, I think, 2 sizes too small! This costume has been well loved - but I think Santa will bring him a new one this Christmas! Lukas and Brady can be found on any given day, playing and having fun and sometimes getting into trouble! But no matter what the activity, they will undoubtedly be found 'together'.
Liam is the newest addition to our family - he's our Gemini baby, born in June of 2009. He's the quietest and most content baby you could meet. Always happy, just taking in the world around him. I've often wondered why he's so quiet, but recently I was told some visually impaired children are quiet because they are taking in the world around them - using their ears, not their eyes - to 'see' or discover their environment. He smiles when we kiss him, and loves to be held and cuddled.
It's a busy household... but we love every minute of it and wouldn't change a thing.
Liam Kristopher Reid was born Thursday, June 18th, 2009 at 7:53am at Lakeridge Oshawa Hospital. After a very LONG labour, we were finally introduced to our third son - and we were elated that he had finally arrived to complete our family of five. At my 20 week ultrasound, we learned Liam would be born with a cleft lip and palate (click here to view before and after photos, the change is astounding!). It was difficult to accept, but after networking with SO MANY other families, we realized that if Liam had to be born with a 'birth defect' (those words are hard to come to terms with when you're speaking of your own child!) that a cleft lip and palate paled in comparision to other congenital conditions. Liam was in our lives, the Sick Kids appointments began, and life went on - he fit perfectly into our little family, and his big brothers Lukas, Brady and Nathan adored him!
Almost right after his birth, we noticed that there was something wrong with Liam's left pupil, it didn't seem to ever dilate, never changed with light, always remained small, and in pictures his pupil would appear 'white'. After 3 visits to my family doctor, always being told 'he's fine, it's ok', we insisted his eye be examined more closely. It was discovered that Liam had a congenital cataract on his left eye, that if not operated on within the first few weeks of life, could cause blindness. We were immediately referred to the Sick Kids Opthamology Clinic, where it was discovered that Liam suffered from something much more than just a cataract. A congenital eye condition affecting both eyes called PHPV left him blind in both eyes. This diagnosis has been devastating to us. We were told surgery wouldn't help, that there was nothing medically to be done and we would raise our baby boy as a blind child. We left Sick Kids in a daze. I don't think any of us remember that drive home, Dave and I barely spoke, but just sat in traffic and wondered about the future of our 5 week old baby who was sleeping soundly in the back seat.
Since then Liam has had an EUA (evaluation under anesthetic) on both eyes on Sept. 8th/09; his cleft lip repaired on Oct. 28th/09; suture removal on Nov. 4th/09 and a lensectomy and vitrectomy on his right eye on Nov. 6th/09. All surgeries have been successful except his Nov. 6th eye surgery. We had hoped it would have restored some sight, but sometime during our lengthy SIX WEEK wait for surgery time, his retina had completely detatched. In an attempt to clear out his right eye and hopefully make way for some vision, our surgeon tore Liam's retina and decided that reattaching wasn't an option. Again we left Sick Kids and drove home in a daze.
But I just couldn't stop there... I researched LIam's condition and found a doctor in Detroit - Dr. Michael Trese. He operates on kids from around the world with PHPV and has achieved some wonderful results! We travelled to Detroit on Nov. 18th, and during our consultation with Dr. Trese he seemed hopeful that he could help restore SOME sort of vision for Liam. Even light perception or shadows would be incredible as currently he lives his life in complete darkness. His first surgery is scheduled for December 18th, 2009 in Detroit. His 2nd surgery will take place sometime in January 2010. These will be the beginning of his many surgeries with Dr. Trese.
