June 7, 2014

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.

June 6, 2014

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.

June 3, 2014

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?

June 1, 2014

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.


May 25, 2014

The finish line

This weekend has truly been a walk through the past 6 years. As I faced the 10KM walk ahead of me on Sunday morning I started on Friday mental preparing. After two years of deciding and waiting to reach my weight loss goal, I finally went on Friday and got a tattoo that reflects  my journey this past six years. A well thought out design that bares witness to the life changes we have made as a family and how it has led me ever closer to understanding the cross. As I sat in the chair, feeling the pinch of the needle I allowed my self to go back to the beggining of this journey we began many years ago with Joshua. I thought about his birth, his subsequent health issues, surgeries, caheterizations and all the stuff in between. To say it's been a journey is false in some ways... it's been more of a roller coaster ride... that looked very much like a ECG reading. Ups and Downs... I thought of those ups and down as the artist worked on me, in many ways the act itself was cathartic.

 This morning, as I prepared for the walk I prepped my ipod full of music that has been the soundtrack to my life through out this chapter in our life. I started the walk with the doom and gloom of first learning his diagnonsis and I ended on the triumphant 'this is where the healing begins' that lead me through the last surgery. walking, up and down the trails (twice, since it was only designed to be a five KM walk) was so reminiscent of the daily walk we make each day. Some hills are harder, some of the flat ground were easy, and the final push through the last quarter (which I decided to run) was like last summer, painful on my knees, hard, and yet, as I saw the finish line coming closer into my line of vision I was overwhelmed, to the point of true emotion. Not because I had almost finished the walk, but because it symbolizes so much more to me.

Ever day of our lives, whether we realize it or not, is a race to a finish line. Ready or not, when we get there we are done. When we pass through that gate that signals we are done, we move into a period of eternal rest, with no pain, no suffering, no tears, no sadness... no broken hearts.

It struck me, walking and running through the 10 K, thankfully on my own, that as his Mum it is just so fitting that I am the one to do this. I am walking, not do any great destination, but with each step I get closer to achieving a goal. I am his mother, I walk alone in many areas of this life we have. Tim is beside me to listen, he helps make the tough calls, but the daily grind of appointments and anxiety and tears lay on my shoulders (a burden I chose, one I would not give up for anything. I find it an honor to hold Josh's hand through the yucky parts of CHD. When he gets tired, I can life him up and carry him, and when I get tired, God lifts me up and carries him.

Too many times I have heard from heart families only the diagnosis of their kid... I want Josh's legacy, our families legacy, to be not what CHD did to us, but we did for CHD. When I die I want to go knowing that I did everything I could to further the cause, I want to die knowing that Josh will be left with a medical system that is fully ready to take on the task of keeping him healthy. I want to know that though my role is small in many ways, that I have taught people something, shared our story in a positive and helpful way. Highlighting the great and amazing things that have come from Josh having this amazing and incredible heart. He may not be perfect, but he is mine. He may have a diagnosis... but he's more than that.

More than anything. I want to share that God has brought us from the pain and fear and anxiety, into the shadow of the cross... that we are always heading towards. No pain, no suffering, no fear, can not be met with love and answers from a God who loves us enough to provide the cross.

When we sit in the gutter and mud, we have a decision to make. We can sit there, and stare at the dirt on our knees and hands and face, we can think about horror of  the spot we are in... or we can choose to look up, we can choose to reach up and grab the hand outstretched, offering help to stand, the help to move on. I choose to look up. Walking today... even the running, was in one direction... The finish line. My finish line is (hopefully) a long way off, and I have a lot of up hill, hard won, victories ahead of me, but when I get tired I know that there is another side of the hill... and it goes downhill with easier terrain.

We were offered no promises of a joyous journey. Life sucks sometimes and it's HARD. We were however, promised that one day all the hard bits would end, the sorrow would leave, the tears would only be tears of joy. Pain would end, bodies restored, FOREVER. I hold to that promise, and wait with expectation. BUT, in the mean time, I will walk and run the race set before me, and do the hard stuff that motherhood demands.

It was beautiful day. Hard, and beautiful!

May 15, 2014

looking back

The Glasshaus (written in the German/English dialect typically found at the Schloss Mittersill. We had names for everything, like a language all it’s own. The glasshaus was one of those places of solace where the world stops while you are in there.  I have often wondered about the ghosts of memories that must haunt those walls. Truly, if every the phrase ‘if these walls could talk’ this would be the place to go and listen. You would learn A LOT about life at the castle. The people, the secrets, the dreams and the millions of frustrations that lay in between the two. This simple room was like none other I have ever entered. You walked in and nothing else ‘out there’ existed.
I spent many mornings in there, watching the sunrise on the valley, sipping hot coffee and prepping myself for a full day, and I often ended my day getting into all kinds of trouble and mischief. Some of our best pranks and plans began around a table in the glass haus and some of my fondest memories of times gone by were with friends within those four walls. That is life in a community of foreigners living in a world that sometimes doesn’t feel like it really exists.
The castle sits on a hill, in a small valley in the Austrian alps. When the mist lies in the valley you can truly begin to believe that you live in the clouds. It’s mystical and beautiful, happy and wonderful and sometimes it’s lonely. That was the way of things when living in castle on a hill. The saying ‘Das laben ist hart in den bergen’ was one that floated through every nook and cranny of that building. The English translation is ‘life is hard in the mountains’. We used this line as both a joke and a sigh because it was true and yet it was a gift and we all knew it.  Community was the centre of who we were, it created intimacy and it was founded on trust and belonging. It didn’t matter where in life you came from, or where you were going. When you entered the gate (as a guest , student, volunteer or staff) you became a member of a very special family; a family that exists to this day. I know that if I land in a city anywhere in the world I will most likely know someone there and that if I ever needed a pillow for a night all I would have to do is say the word and the door would be opened. 
I first discovered the castle as a 19 year old rebellious girl, desperate to break out on my own and ‘find myself’. I hadn’t expected to grow so attached, or to be loved so freely there. What I found was not just a job for a year, but a home, a family, and what I later described as a hospital for the soul. Years later I returned broken and bruised and in need of a new life and with one email I was warmly welcomed home. I spent three years there that time, three years of growing, learning, laughing and often crying. Three years of discovering who I am, who God is, and who God wants me to be. I found healing there, I found hope there, I discovered joy there and when I left, leaving part of my heart behind I left a new person; a new woman with a new purpose in life and new energy to take on the world. It was a rare gift indeed, one that I took for granted during my years there but one that I have thanked God for every day since.
I was looking through old photos the other day and as often happens I was reminded so clearly of where I have been, and where I am today and as I thought about it I wanted to take the time to remember with my words what community is, what it should look like in the context of the church and what being a member of a church family really should look like. It loves without judging, it’s praying for each other, it’s sharing ourselves with others, it’s holding each other to account, it’s laughing together, playing together, and sometimes it is crying with each other. It is celebrating life’s victories and mourning and grieving together. It is about helping each other grow deeper in our spiritual lives and knowing, more than anything, that regardless of where we have been or where we are going, that we are not alone. We are family. Once known that deeply, there is no goodbyes, only ‘see you later’s’.

May 11, 2014

A mamma's prayer

This is for the two boys who have taught me the wonder of God's love; not because of anything they have done, but simply because they exist. What a beautiful example they have been to me of Grace, unconditional love and selfless sacrifice. Each day they teach me about love, patience, joy, hope, grace, laughter, and above all God. Each day I learn from them how to be a better person, and how to ask for forgiveness when I don't get it right. These two little men have given me much more than I ever imagined and I am eternally grateful to them and to the God who created them. What an honor!

My arms are not strong enough
to hold you here forever;
my tears and kisses cannot heal
the pain and hurts you weather.

Yet each day I pray for you
letting you go in my heart;
to the one who can do anything;
even heal a broken heart.

Every hour of every day I lift you up to him,
so that one day when I am not near,
you can turn your eyes to him,
and let his voice be the one you hear.

I talk to him about you,
I share the silly things you do, silly things you say.
I ask him to watch over you
every hour, every day.

xoxox Mamma.