Transmitted, Filtered, Reflections

I saw a post on Facebook today that had a picture of two men in Central Park underneath was this quote:

"We're eye doctors."
"What's something about the eye that most people don't realize?"
"The eye doesn't see. The brain sees. The eye just transmits. So what we see isn't only determined by what comes through the eyes. What we see is affected by our memories, our feelings, and by what we've seen before."

I remember when I was younger, I would watch someone I really cared about act in a way that said she thought she was not beautiful. I remember watching her intently and thinking... 'but you can't see what I see'. She would only see what the mirror showed her, she would never see herself in the 'first person', it would always, only be a reflection of the person she is. 

I remember going with my Dad to a special event that he was running (My Dad is a PR specialist and was the communications director of Canon Canada) the event was to show off some of Canon's new products, one of those new products was a camera that could take a picture of your eye ball... no kidding. You would line your eye up with the view finder and it snapped a shot, but you didn't get a photo back of your beautiful blues/browns/greens or hazels, you got a picture that showed the actual eye ball. Obviously this was a special camera, used for medical purposes but they allowed us to take a picture, and what I got back was a Polaroid style shot of my eyeball. It was pretty cool really. 

I also remember thinking, years later when I knew this particular woman who so struggled with her self image, about that picture of my eye. It caused me to think about what I see, and also what I don't see. I look at the sky and it's blue, but someone who is colour blind may say it's green. So then, what colour is the sky? What about a reflection? If I stand at side by side with you and look into a stream I will not see the exact same thing as you, even though we are looking at the same thing. We may be different heights, and we are not staring at the exact same spot, and the ripples from the breeze may differ slightly, and because we are side by side and not on top of each other we will have different angles of light, different shadows, different reflections staring back at us. 

So that leads me back to what we see in the mirror, that reflection that we stand in front of on a daily basis while getting ready to go out and face the world, the one we often have a problem with. I can look at her, (my reflection) and see a lot of things, but they are only ever a reflection, or as these eye doctors have said, a 'transmitted, 'filtered' view of ourselves. We see the lies that we have whispered to ourselves for years, we see  the self doubt, we see the things that people have told us about ourselves, we see the 'filters', we see the reflection, we do not see ourselves in the first person.

a line of courage

Sometimes, when Josh and I are alone, I get a glimpse into his mind, get a chance to hear what he is thinking about... it's rare but when it happens I am often surprised by the depth of thinking he displays.

This morning Kaleb slept in and left a good hour for Josh and I to share breakfast together. We were chatting about all sorts of things and as often happens he started to ask about his heart, and his scar. I don't know how the conversation started this morning but we talked about his birth story, and that led to him wanting to see pictures. He saw one of the ones I had of him in hospital and as he looked at it I asked him how he felt when he saw the picture. His response was 'I feel broken when I see that picture'... it moved us into discussing those feelings and how he isn't 'broken'. Then he asked me where his scar was and I explained that he hadn't been born with it, that he got it when he was 6 months old. This led to the next batch of questions about old he was for each of surgeries. I said he was 6 months, 2, 3 and then 5 years old. Then he asked 'when will my surgery be when I am six? and I said he wasn't going to have one when he was 6, so he asked 'when I am seven?'. At this point I know I can't say he won't need one when he is seven, I can't make promises like that. So we talked about how having a special heart means that we are given a special gift, a gift that allows us to fully  enjoy each day and be grateful that today he doesn't need a surgery. He thought about this long and hard and then while rubbing his scar he said 'I don't want to lose my pig valves' and I explained that someday he would need new ones but they would still be pig valves. At this point he looked up at me and said 'I don't want them to use a knife to give me new pig valves, it scares me and hurts me'.

Now this may seem like a very normal thing to hear... but for Josh it is the first time he has ever articulated his fear around the surgery itself, the first time he has ever said anything about being afraid of it, or remembering that it hurt. In fact, most times when he speaks about his surgeries it's to talk about the outcome (the fact that he has pig valves or that he has no leaks), not the ordeal. I have heard of his fear of 'the dragon' which has plagued him since his second surgery, I have heard of his fear of the dark that started after one of the surgeries, in fact, he has always been clear about being 'afraid' but he has never once articulated a fear of the surgery itself. Not once has he put the two together in words, possibly even in his mind. So, while this may seem very 'normal' for a child who has been through what Josh has been through, as his Mum I see it as a huge leap forward in his understanding of  his situation, for him and for me. How many nights have our halls rung out with screams? Too many to count. I've always known the two are connected but hearing him say that he sees that too, seems like a step forward, one step closer to leaving the dragon behind.

What do you say? I couldn't think of anything to say to him; so I said 'I would be scared and hurt too; I get it, its scary to think about that'. Then I asked to see his scar and he pulled up his shirt. I touched it and I said 'Do you know what I see?' and he looked at me waiting...

"I see a line of courage, a line that says "I am brave", I see a line across your chest that says 'I am alive', I survived". He looked at the scar again and rubbed it up and down and I continued. "If you are never scared, then you can never learn to be brave, not many people get to learn so quickly how to be so brave." He smiled at this and then touched his scar again and said 'I think I will keep it"

There is nothing better to me than when Josh shares a bit of himself with me, allows me into his mind and shares with me his fears and dreams and hopes and worries. Knowing him, all of him, fills me with joy and being able to talk to him and ease his anxiety a little helps the mothers heart in me that always feels so helpless. We talked at length about learning to not borrow trouble from tomorrow, that we have to enjoy today for what it is. I said to him that if he had to have a surgery when he was seven, or eight or nine, then we would deal with it and worry about it then; but that TODAY he doesn't need one, and we can celebrate that. I don't know if that part got through to him but I know he left the conversation looking more at peace than during the talk.

Later he came back to the kitchen, this little boy who has a language impairment, and told me all about his head, thorax and abdomen... He amazes me on so many levels! What a joy and blessing he is.

a dangerous walk to school...

I was walking this morning taking Kaleb to school, he was doing his 'slow' walk which is very similar to his normal walk but even slower (if that is possible?!). When I walk to pick him up it is a fairly quick 15 minutes, but when I have him with me it is easily half an hour. I have finally stopped caring about time, if I am late then I am late and, that's life. We leave at the same time every morning and some days we make it and other days we are late... today was a 'we are going to be late' sort of a day. I was getting annoyed to be honest. I have things I want to do, the longer he dawdles the longer it takes me to get on with my day. You know?

We got into a section of the street that he loves, mostly because it's a back alley and he has no need to worry about cars, he can just play. As we were walking he had to stop at each puddle and toss some pebbles in it to watch the ripples. As we passed each flower he had to stop and inspect it (he was looking for bugs that might be dangerous), every fire hydrant I got treated to the story of what fire took place that they used that particular hydrant (yes, he's becoming a master story teller). The trees, now shedding their blooms make for another 5 minutes stop and conversation (perhaps an alien came down in the night and broke all the flowers off to eat them all up?!). Slowly... very slowly we are getting further down the street, step by step we are getting a little bit closer to the school.

I kept calling him 'Kaleb! Let's go!' until we hit the next alley we pass through... this alley was littered with puddles, and I just sort of gave in to the fact that we would be late. So, I slowed down and stopped bugging him. As we passed each puddle, his little hands tossing in the pebbles, his feet dancing around the puddles to avoid waking the scary sea monsters, as we climbed along the side of the alley (a curved curb) because it was a bridge to save us from the evil sea monsters that live in the puddles I began to smile. Somewhere between alley number 1 and alley number 2 it dawned on me that I am at risk of turning it 'Calvin's' mother! You know her right? Calvin and Hobbes... and the Mom who spoils all their fun!

Every year I used to get a Calvin and Hobbes book from 'Santa'... it was always the very first gift 'he' brought me and it was left beside my bed in generous attempt to allow my parents a bit of a lie in. I would read the stories and dream that one day I might have a child as awesome as Calvin! He was so cool, his imagination knew no bounds and though often twisted... his humor was unmatched.

Walking to school today, facing hungry aliens and sea monsters and at one point even a bunch of garbage that had been torn through by an evil purple minion I realized that my prayer had been answered. He even comes with a Tiger. How can I be annoyed by that?

End results of this mornings walk... we were late, but we were spared the wrath of the sea monsters and paid homage to them by giving them pebbles, and thankfully the evil purple minion was gone before we walked past, and didn't return on my walk back home. I wonder what will happen on the way home?

All for a smile

There is nothing more special than seeing your kids being treated like they are special. It's that simple. Want to win my heart? Win my kids hearts. Want to make me happy? Treat my kids well. Want to say thank you? Say it by being nice to them.

In my strive to make people aware of the problems that kids with Congenital Heart Defects face (along with their families) I have come into contact with many people. I have met other families, I worked with many charities, and I have had the pleasure of meeting some pretty great people. Toronto has a lot of great people, but sometimes you get the chance to meet some that are just really special, who just want to do something nice, to make you smile. I have met many along the way. Some, friends who have journeyed with us from the very beginning, and still others who are total strangers and yet they care.

One of the things that I did this year was to arrange a day at Kaleb's school, raising awareness and some funds, during this event we had the very fun opportunity to meet with David Clarkson of the Toronto Maple Leafs (and Carlton too!!). I wont go into a of detail because I have already blogged about this day. I remind you of this because later, in March, I was asked to do an interview with the Toronto Maple Leafs discussing David Clarkson and his work with families through in southern Ontario. I happily agreed and the video was made.

Now, at the time the team that came to the house for the interview told me to let them know if we would ever like to come and see the ACC for a tour, and I decided to take them up on it. I wrote and asked if it would be possible. I got an email back the following day. A tour would be difficult, but they would like to give us playoff tickets to the Marlie's game five! Now, I don't know about you... but a tour of an empty building can't even come close to comparing to going to a playoff game! I was stoked! This was awesome!

As it turns out, they also invited the boys to join them for pre-game warm up... on the bench!! It was like some kind of dream for them (though our shy little Kaper didn't seem too thrilled until after the fact).

Josh giving pre-game high fives to the team

We had amazing seats, and we quickly settled in to watch the game. Kaleb in my lap and Josh between Tim and I. My parents rounded out our group on my left. Through out the first period the boys; Kaleb in particular, was watching Duke (The dog mascot for the Marlie's) intently. Every time he spotted him he would shout, 'Mama, there's Duke!!' and if he got close to our section he would grab Josh and together they would yell 'DUKE' as loud as they could in hopes they might capture the dogs attention. So, half way through the second period you can imagine their immense pleasure when Duke came straight to their seats and said he was looking for Joshua and Kaleb! The boys practically (well... no practically about it....) climbed over my mom and I to get close to the giant dog. Duke, who then gave them two large gift bags full of Marlie's toys and T-shirts posed for a photo with them, gave them high fives and a quick snuggle. It was a moment that they wont soon forget I can promise you. I think my two guys were the envy of every kid in our section!

It is not often that you have a day so packed full of 'specialness' of memorable moments that will reach far into their futures and yours, days when you just know 'they will never forget this'. Yesterday was one of those days! The Toronto Maple Leafs went above and beyond yesterday to make sure we knew they appreciated us, not just Josh and all the reasons why his story helped make their story better, not just me for being willing to share that story, but the whole family, and Kaleb, who one of the members of the Maple Leaf team specifically made sure to include when she thanked us.

Josh's story is not just about Josh, it's not about me. It's about our family, together we have traveled this road. Kaleb too, has had a long and difficult few years watching his family suffer all while not fully understanding what was happening; and yesterday he felt just as special as Josh in every way that matters. He even made it to the interview we did for the "the Leaf".

These two boys, their Dad, my parents, Tim's parents, and all of our siblings and friends have stuck together on this journey and together we have grown and changed as a result. We know that not everyone gets many of the special things that we get as a result of the hand we were dealt, but we also know how blessed we are; and we want you to know we appreciate it, and are truly grateful for each opportunity. We do not take for granted the gifts that come our way.

We, as a family wanted to say thank you to the Toronto Maple Leafs for making yesterday so awesome. We want to thank all the organizations like Cardiac Kids and Starlight who do everything they can to help families like ours feel the joy and pleasure of being a kid, no matter what the day to day looks like. We want to thank all the people in between, all the David Clarkson's and Ally Williams' and Meghan Hurley's in the world who strive to make the kids smile in spite of their circumstances.

Thank you.

L