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| Just another day at daycare! Learning, reaching, playing, balancing! Thank you Amra! For all that you've done and all that you continue to do! |
Thursday, April 19, 2012
Picture Perfect!
Monday, January 23, 2012
Mission Impossible!
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. St. Francis of Assisi
It certainly 'feels' like the impossible when it comes to Liam + walking. This kid just DOES NOT WANT TO MOVE! It's easy for me to shrug my shoulders and say, "I don't get it", but really, I do. Liam has no frame of reference, no real understanding of space and his surroundings - except for me 'telling him' - that I'm 'walking' to the kitchen, the living room, daddy's lazyboy, daycare, he really has no idea what I'm doing. Maybe he can feel the bumpiness while he's in my arms of me walking, but really, they are merely words to Liam. He doesn't have the visual understanding that people walk, kids walk, babies walk. That there are many different rooms in a house, that there is a ceiling above us keeping out the elements. That we walk to get to a destination, to find something we need, to get to the car, to go to the fridge. For Liam, his entire world, quite literally, ends at the tips of his fingers. If he can't feel it, it simply doesn't exist. Sometimes this concept overwhelms me, when I drive late at night and all you can see is whatever direction your headlights point, that gives me some sort of 'look' into Liam's world. All I can see is just a few feet in front of me. I can't see beside me or behind me, it's a comforting feeling for me. I almost get a feeling of contentment and safety. It's just me in the car with my music.
The other night, Liam took his own hand and placed one finger in the palm of his opposite hand. The next thing I realize, Liam was actually reciting, "Round and Round the Garden Like a Teddy Bear" while doing the motions to himself! OMG I was beaming listening to him! Then he started singing, "Frere Jacques"! His words are still something only a mother (or dad or his teacher Amra) could understand, but still, it was a song - that he was singing - and knew EVERY word to!!!
Here's a picture of Liam taken this summer. All I can say is CUTEST PICTURE EVER! Love this little guy!
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| Liam, Summer 2011 |
Saturday, November 26, 2011
It's me mommy - the stalker
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.
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?
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.
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| Enjoying a summer swing, 2011 | Like father like son - Liam in daddy's lazyboy, complete with remote control! |
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| 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?
Tuesday, October 25, 2011
Acceptance - Are we there yet?
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.
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.
Tuesday, October 18, 2011
Just the two of us...
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'...
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'...
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| 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! |
Thursday, September 29, 2011
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
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
Tuesday, September 20, 2011
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: 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!)
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| Liam enjoying his new MP3 player, Summer 2011 at Nan's in Brighton. |
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