So my baby is blind... Now what!

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

Liam looking oh so cute! Summer 2010

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

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

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

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

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

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

OMG how this baby
LOVES his baths!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Newfoundland Girl

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

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

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

Heaven Sent!

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

One of Liam's
first days at daycare
 

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

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

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

My new obsession

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

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

What do all these folks have in common? 

Varying degrees of visual impairment.

Liam with Aunty Karen, Summer 2010

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

*Baby Bocelli* Celebrates Christmas

Merry Christmas! Now where's breakfast?

Daddy helps Liam
open his first gift of the day

Poppy I LOVE my new drums!

Lots of laughs with
Aunty Keri & Aunty Karen

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?

Palate Repair Anyone?

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...

Goggles, I mean glasses

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!