Liam's teacher, Amra, sent this to me today and I thought it was so beautiful! It made me cry, but in a good way!
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You may think us "special moms" have it pretty rough.
We have no choice. We just manage life when things get tough.
We've made it through the days we thought we'd never make it through.
We've even impressed our own selves with all that we can do.
We've gained patience beyond measure, love we never dreamed of giving.
We worry about the future but know this 'special' life's worth living.
We have bad days and hurt sometimes, but we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.
For our kids, we aren't just supermoms. No, we do so much more.
We are cheerleaders, nurses, and therapists who don't walk out the door.
We handle rude remarks and unkind stares with dignity and grace.
Even though the pain they bring cannot be erased.
Therapies and treatment routes are a lot for us to digest.
We don't know what the future holds but we give our kids the best.
None of us can be replaced, so we don't get many breaks.
It wears us out, but to help our kids, we'll do whatever it takes.
We are selfless, not by choice, you see. Our kids just have more needs.
We're not out to change the world, but want to plant some seeds.
We want our kids accepted. That really is our aim.
When we look at them we just see kids. We hope you'll do the same.
~April Vernon
Thursday, June 20, 2013
Thursday, May 16, 2013
Approaching 4
In just 1 short month it will be exactly 4 years to the day that Liam entered our lives. It wasn't the typical delivery that all moms dream about. We knew Liam would be born with challenges due to the cleft lip and palate that was discovered in our 18 week ultrasound. None-the-less we celebrated as a family the arrival of our new baby boy. My family all came to visit - I'm sure with fear of how they would react at seeing Liam's baby cleft face for the first time. Nurses would parade into my room, I believed to get a look at "the baby born with the cleft". And as difficult as those first days and weeks were transitioning into a life with now 3 children under the age of 6 - we had the added struggle of plastic surgery appointments, orthodontic visits, NAM fittings, the Haberman bottle (the only way Liam could drink was from a specialized bottle designed so that mommy squeezed the milk into Liam's mouth since he didn't have the ability to suck), the devastating news that our baby was visually impaired. As hard as those first few weeks were, little did we know we had an even bigger challenge lurking in the shadows.
In an even more evil twist of fate, we would not only have our shoulders saddled with the heavy burden of Liam's medical needs, we would have a 3 and a half year struggle with Ontario's Ministry of Health to secure financial support for Liam's out of country medical procedures.Funding that another Ontario child was receiving for the treatment of the same disease with the same out of country physician!
I remember the day I started preparing our initial appeal with the Ministry of Health in December 2009. I was sitting in a hotel room with my mom and my then, 5 month old son Liam who had just undergone the first of many surgeries with Dr. Michael Trese in Michigan. Little did I know it would be another 3 and a half years; 42 months, 3 of Liam's birthday celebrations; 5 filed and ultimately denied applications for out of country funding; countless conference calls with the Ministry of Health officials; an exhausting and complete sham of an appeal before the Health Services Appeal and Review Board; the services of a specialized lawyer to provide us with representation the ministry insisted we wouldn't require; direction from the Information and Privacy Commissioner in securing ministry documents under the Freedom of Information act that supported our claim another child was receiving provincial funding; communication with Ontario's Ombudsman in an attempt to right the many wrongs; countless meetings - telephone calls and emails with our local MPP, Christine Elliott; an eventual visit to Queen's Park to attend question period - Liam in tow - and a media scrum afterwards; personally meeting Minister Matthews and phone conversations on numerous occasions with the Minister, her chief of staff and countless other ministry officials; the onslaught of media coverage including local tv personality visits to our home; our interviews at the SUN media television headquarters; Christina Blizzard's unrelenting coverage of Liam's struggles; the Globe and Mail, and Toronto Star stories; an appearance on Canada AM and the Michael Coren show; and 3 radio interviews on Talk 1010 radio. All this while working full-time, meeting Liam's medical requirements and raising a young family!
Here we sit, finally successful - but my god, not without a lot of hard work, sweat and tears. We have been successful in securing support from the Ontario Ministry of Health for the coverage of Liam's out of country surgeries with Dr. Trese because - as I've said countless times in the past 3.5 years - and as evidenced by the unsuccessful surgery on Liam's right eye at Sick Kids - the expertise to treat this disease DOES NOT exist locally. Sadly, Liam has lost all vision in his right eye as a result of surgery performed at the Hospital for Sick Children - he will now wear a prosthetic shell to keep the structure of his eye socket in place as due to the trauma of surgery and build up of scar tissue, his eye is shrinking. This should never have happened. Thankfully though, he left eye, treated in Michigan under the skilled hand of Dr. Michael Trese has faired much better. His eye is healthy, his retina attached - his eye is growing and beautiful!
So for at least the next 3 year term - the ministry's arbitrarily imposed timeline - we can rest with the knowledge that Liam will be supported with ministry funding. We’re grateful to the ministry for finally supporting Liam, even if only for the next three years - and we’re hopeful the ministry will continue
Here's a link to Christina Blizzard's article published in the Toronto Sun April, 21, 2013.
In an even more evil twist of fate, we would not only have our shoulders saddled with the heavy burden of Liam's medical needs, we would have a 3 and a half year struggle with Ontario's Ministry of Health to secure financial support for Liam's out of country medical procedures.Funding that another Ontario child was receiving for the treatment of the same disease with the same out of country physician!
I remember the day I started preparing our initial appeal with the Ministry of Health in December 2009. I was sitting in a hotel room with my mom and my then, 5 month old son Liam who had just undergone the first of many surgeries with Dr. Michael Trese in Michigan. Little did I know it would be another 3 and a half years; 42 months, 3 of Liam's birthday celebrations; 5 filed and ultimately denied applications for out of country funding; countless conference calls with the Ministry of Health officials; an exhausting and complete sham of an appeal before the Health Services Appeal and Review Board; the services of a specialized lawyer to provide us with representation the ministry insisted we wouldn't require; direction from the Information and Privacy Commissioner in securing ministry documents under the Freedom of Information act that supported our claim another child was receiving provincial funding; communication with Ontario's Ombudsman in an attempt to right the many wrongs; countless meetings - telephone calls and emails with our local MPP, Christine Elliott; an eventual visit to Queen's Park to attend question period - Liam in tow - and a media scrum afterwards; personally meeting Minister Matthews and phone conversations on numerous occasions with the Minister, her chief of staff and countless other ministry officials; the onslaught of media coverage including local tv personality visits to our home; our interviews at the SUN media television headquarters; Christina Blizzard's unrelenting coverage of Liam's struggles; the Globe and Mail, and Toronto Star stories; an appearance on Canada AM and the Michael Coren show; and 3 radio interviews on Talk 1010 radio. All this while working full-time, meeting Liam's medical requirements and raising a young family!
Here we sit, finally successful - but my god, not without a lot of hard work, sweat and tears. We have been successful in securing support from the Ontario Ministry of Health for the coverage of Liam's out of country surgeries with Dr. Trese because - as I've said countless times in the past 3.5 years - and as evidenced by the unsuccessful surgery on Liam's right eye at Sick Kids - the expertise to treat this disease DOES NOT exist locally. Sadly, Liam has lost all vision in his right eye as a result of surgery performed at the Hospital for Sick Children - he will now wear a prosthetic shell to keep the structure of his eye socket in place as due to the trauma of surgery and build up of scar tissue, his eye is shrinking. This should never have happened. Thankfully though, he left eye, treated in Michigan under the skilled hand of Dr. Michael Trese has faired much better. His eye is healthy, his retina attached - his eye is growing and beautiful!
So for at least the next 3 year term - the ministry's arbitrarily imposed timeline - we can rest with the knowledge that Liam will be supported with ministry funding. We’re grateful to the ministry for finally supporting Liam, even if only for the next three years - and we’re hopeful the ministry will continue
Here's a link to Christina Blizzard's article published in the Toronto Sun April, 21, 2013.
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| Cutest kid ever, with a great looking red reflex in his left eye! |
Friday, May 18, 2012
An Ugly Day
I remember one of the 'dark days' in particular, the day I naively asked Liam's vision consultant, even though I knew the answer deep in my subconscious, "will he need a cane to walk?". She looked at me with tender eyes and replied softly, "yes". Liam slept in his swing just a few feet from me completely unaware of the devastation ensuing around him. I was standing in my kitchen facing the backyard. I looked outside choking back tears that July morning: a blue cloudless sky, plush green grass, and a tall red maple tree stared back at me. It was an ugly day.
The thought of my baby needing a can to walk around, to navigate within his world absolutely broke my heart! I could barely contain the waves of nausea that took over my body when the I tried to process the words I was hearing. I cried oceans of tears in the coming weeks and months - and if I'm being honest - even years after hearing those words. Nothing could soothe the complete and utter devastation I felt, nothing - except time.
Fast-forward 3 years...
The pride I feel when I see how far Liam has come since those days prior to any of his cleft surgeries, prior to having any notion that the newborn baby I held in my arms was blind, prior to the 14 weeks of waiting for the diagnosis of bilateral PFVS/Norries, prior to the MRI that indicated Liam had normal brain function, prior to his 3 ear tube surgeries, prior to his countless evaluations under anasthetic, prior to my 8 trips to Detroit for check-ups and surgical procedures, prior to Liam's endless occupational, physical, speech, and vision therapy appointments, prior to all the loss and fear of the unknown...here we are today.
A happier and stronger family that has endured far more than most of the people in our lives. And conversely, far less than many of the families of special needs children we have met since Liam's birth. We live now with a sense of contentment, we don't sweat the small stuff, but we marvel in the little things each day brings us.
I sit here today 3 years later - still with tears in my eyes - but now tears of joy. With the realization of how much we have all grown as a family. Of how we have all become better people: a better spouse, sister, brother, daughter, son, friend, neighbour, colleague, parent. Liam has brought so much into our lives - and although there is still fear of the unknown - when I reflect on how far we have come in 3 short years, the excitement I feel for the future is almost too much to contain! Thank you Liam for choosing us to be your family!
The thought of my baby needing a can to walk around, to navigate within his world absolutely broke my heart! I could barely contain the waves of nausea that took over my body when the I tried to process the words I was hearing. I cried oceans of tears in the coming weeks and months - and if I'm being honest - even years after hearing those words. Nothing could soothe the complete and utter devastation I felt, nothing - except time.
Fast-forward 3 years...
The pride I feel when I see how far Liam has come since those days prior to any of his cleft surgeries, prior to having any notion that the newborn baby I held in my arms was blind, prior to the 14 weeks of waiting for the diagnosis of bilateral PFVS/Norries, prior to the MRI that indicated Liam had normal brain function, prior to his 3 ear tube surgeries, prior to his countless evaluations under anasthetic, prior to my 8 trips to Detroit for check-ups and surgical procedures, prior to Liam's endless occupational, physical, speech, and vision therapy appointments, prior to all the loss and fear of the unknown...here we are today.
A happier and stronger family that has endured far more than most of the people in our lives. And conversely, far less than many of the families of special needs children we have met since Liam's birth. We live now with a sense of contentment, we don't sweat the small stuff, but we marvel in the little things each day brings us.
I sit here today 3 years later - still with tears in my eyes - but now tears of joy. With the realization of how much we have all grown as a family. Of how we have all become better people: a better spouse, sister, brother, daughter, son, friend, neighbour, colleague, parent. Liam has brought so much into our lives - and although there is still fear of the unknown - when I reflect on how far we have come in 3 short years, the excitement I feel for the future is almost too much to contain! Thank you Liam for choosing us to be your family!
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| A Beautiful Day! Top: Riding his bike at daycare Bottom: Liam's first white cane! We love you sweet boy! |
Thursday, April 19, 2012
Picture Perfect!
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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! |
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.
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