Photographs by Laurie @ Horizons Photography

December 31, 2013

Goodbye 2013

It's the last hours of 2013. I stand on this threshold and wonder that we made it through the year. This past year has been one of the harder ones we have had to get through. We watched Josh declining into full on heart failure, we changed churches and communities, Tim changed jobs, we said goodbye to my dog, we watched Josh go through another catheterization, and then another open heart surgery, we let our youngest go for three weeks this summer while we handled Josh's health issues, we traveled miles getting Josh to all of his therapies, we moved houses and neighborhoods, searched for tenants for our old house, we sent both boys to new schools, and we have struggled with countless problems at Kaleb's school. It has been busy, chaotic, scary, insane and to say that I am glad it's over is truthfully an understatement. 2013 was not a year I would want to look back fondly on, it's not a year I would ever want to repeat.

Yet, even as I write this, I think back to each and every stress, each and every moment of uncertainty or trial, I can at the same time see each face of the people who have stood beside us through out this past year. I see the new friends at the new church who have welcomed us into their home and gathered us up in our times of fear and worry, whose support literally moved us to tears on a number of occasions. I see the faces of old friends who gathered behind us and kept us moving forward when all we wanted to do was stop and hide. I see the faces of doctors and therapists who were working hard to heal our son. I see Josh, I see Kaleb and I see them smiling, not because of what they have been through but because of where we are now.

Leaving 2013 behind is a joy, because once again we have survived and flourished. We have grown stronger, our relationships are deeper, our trust and faith has been stretched and not snapped. We have overcome great odds and still we laugh, still we smile. I started this year knowing that 2013 could be tough, had I known then what I know now I may not have been able to cope; however, life tends to take you through things one step at a time and before you know what's happened you have scaled a mountain.

I won't sit and tell you that I have any great insight for 2014, I have no idea what will unfold this year. I could be great, it could be tough. All I can do, all anyone can do really, is take a step, and then another, and when we reach our destination we can look and see the beauty of the journey.

In the last hours of 2013 I can sit here, safely behind my computer and say that the journey was stunning, in all the impossible moments there was a profound beauty and love that I don't want to forget. I don't want to repeat it, I don't want to sit and remember the pain, but I would happily sit and remember all of those faces, all that love, all that support.

It's been quite a year...

I wish you all a blessed journey into 2014, I wish you joy, and a glimpse of the beauty in your journey. Happy New Year!

December 13, 2013

Special heart



This little guy is a deep introspective little man. Last Thursday we 'celebrated' the four month anniversary of Josh being released for sick kids. He's had many ups and downs since then, though happily more ups than downs. 

Tonight he came to be for a snuggle (increasingly rare as he ages).. He sat in my lap and I hugged him, I whispered that I love him, then I said ' buddy, you are awesome. Normally this garners smiles... Today he didn't act as I expected. Today he looked up at me and said ' no Mummy. I'm just different'

It's entirely possible to actually have a million thoughts in just a few short breaths. It happened to me tonight. Every time think it's further in his mind, hoping he's forgetting and the ugly truth comes back to taunt us.  

'Why do you say that Josh?
He looks down at his hands and slowly lifts them, placing the carefully over his heart. 'My heart is different'. 

These are the moments in life, the ones where words count more than ever. 

On December 2nd I posted a video with many photos of CHD survivors . I pulled the video up on the screen and we watched it, frame by frame, faces of survivors filled the screen. Josh's eyes watches intently, watching in the silent way he has, just taking it all in. Each face we saw I pointed to and whispered 'he has a heart like yours, or, she has a heart like yours. How can you be different when there are so many just like you. You are not different, you are special! The video ended and Josh looked me, he eyes were misty but I could see the doubt was leaving his eyes... I made him say it 'I am special! 

We hugged for a bit while we talked about his awesome, miraculous heart.then I had to ask 'did someone tell you that you are different Josh?'

His answer... 'No. I just know. My heart gets tired sometimes Mummy'

Oh how I pray these are just words... Words uses to describe a year of pain and illness and not present day realities. Hearing these words send chills down my back, fear fluttering through my stomach. 

I wouldn't change one second of the time we've had with our son, not one second. However I feel I could write a book on the ache that the doctors can't warn you about because though they see it countless times in a day they can't possibly know what it's like to live with this on a day to day basis, in a child you would yourself die for; they don't know about the fight that continues day in and day out.

For now, he's safely in bed and this information he's given me will tucked in a private 'pain spot' in my brain. But my guard is up, I'm on watch duty now. 

Living with a congenital heart defect has the power to consume your life. Were it not for my faith, I think my strength would have failed long before now.

My prayer will be that this tired heart he speaks of is in the past tense, but if it's not I pray we have the wisdom to discern. 

December 11, 2013

Home Run!


Yesterday was a good day, I was asked to attend an award ceremony at Joshua's school to witness him receive an award for Responsibility. He was one of 48 students who received an award and I couldn't have been prouder of him. His teacher and principal were the ones who gave him the award and their words were special. Josh is eager to learn, he takes responsibility for his belongings, his school work and his attitude within the classroom. He is always kind and fun to be around and when given something to work on he goes at it full steam ahead. (these were his teachers words to me before the award was given, and I am glad she told me because as I watched through teary eyes I have to admit I didn't hear anything they said, I was too busy watching him). The award was a surprise for Josh, he had no idea he was even nominated and you can see from the picture above that he was very proud of himself. During the ceremony there was a little girl (probably about grade 2) who WALKED to the podium for after teaching herself to walk again. Chills run down my spine again as I review it in my mind. Listening to the crowd cheering, seeing her smile as she slowly walked up to receive an award for courage, it's a memory I will remember for the rest of my life.

In other news... Last June we had an eye clinic appointment and the doctor told us that Josh would most likely need a second eye surgery. She decided to put it off and allow us to deal first with his heart and then make decisions about his eyes. Before the heart surgery she asked for permission to go in and have a good look at his eyes while he was sedated since he wasn't very co-operative when he was awake. We agreed. Today we had the follow up appointment and I have to admit I was geared up to hear that we would need more surgery... HOWEVER... it turns out that he will NOT need anymore eye surgery. This is GREAT news! The not great news is that his eye problems are not actually 'eye' problems but rather a result of the stroke and nothing can be done. His eyes do not work 'together' but it shouldn't impact his learning, it's not affecting his sight and it seems to not be bothering him that much. So, other than annual check ups we are cleared!!

We take hits... but sometimes the hits are home runs! This week, Josh is hitting out the park!

December 5, 2013

Don't know the next step...


This little man started JK this year. We have moved into a new area, and he's in his first few months of a long school career. It's been a very rough start and I won't lie to you; I have deep concerns about his safety and well being and the future of his education. Kaleb is like me in many ways, and because of that I can see how vital it is for him to have a positive beginning to a school career... too many things have happened to this little boy for me to list here, and most of them are confidencial in nature so I can't be specific. However, it's made us (Tim and I) question what's best for Kaleb. I am writing this post today to ask you all to pray for us. We need to hear God's direction in this, as far as where Kaleb is safest and where he should be. I won't lie and say I am not worried... I don't know the best 'next step' for Kaleb. Please, pray for us, for wisdom, discernment and guidence and a clear path as we slog through this process. Pray for little Kaleb too... he's fairly unaware of things for now and that's the positive side of all of this but every day I leave him and I am filled with anxiety for his welfare (now and in the future).

Thank you... You have all been so incredibly faithful to our family as we faced hard times before. You prayed Josh through some very hard times and I have total faith that you will now pray for his little brother.


December 2, 2013

I am 1 in 100





I have had the absolute honour of creating a video for the Canadian Congenital Heart Alliance to help raise awareness for Congenital Heart Defects. The video, is filled with as many survivors as I could fit into the short video. The response was pretty awesome and reading each story, particularly the stories of the adults gave me so much hope for the future of CHD and the survivors who bare the scars.

Please, check out cchaforlife.org to find out how you can help!

Kids!


Kids. They are those amazing little creatures that awe us at every turn with their sweet hugs, powerful love and amazing cuteness and then seconds later make you wonder what the heck was wrong with you when you chose to have kids?!

The boys, on occasion declare a truce that lasts long enough to make you believe all is well but what is actually going on is a hesitant allied force against a larger evil (Mummy) which lasts as long as it takes to win and then one of them will break the treaty and once again declare war on the other. Peace deals brokered by those two are acts of war against me. The only time one of them makes a pact with me is when it is against their brother. The endless 'Mummy, Kaleb hit me" or "Mummy, Josh won't play with me" or "Mummy, he threw a ____ (name anything and it's been thrown in this house) at me." Some nights I can hear those calls repeating in my dreams like that song you can't stop singing... You know the one right?!

The battle of the bunks... that's a story in itself. The bottom bunk has now become a place of envy and every night there is a war to see who gets to sleep there. One night Josh got 'smart' and made sleeping on the floor seem like a great idea to Kaleb so they both made up little beds on the floor and then, once Kaleb had fallen asleep Josh quickly moved to the bottom bunk. At two in the morning Kaleb woke up, discovered Josh's trickery and moved to the bottom bunk as well, thus waking Josh, and another battle ensued.

There is of course moments of togetherness that have nothing to do with waging war on Tim or I...

Just this morning I watched Josh try to leave the house in Kaleb's pants (2 sizes too small). The little legs ended at his calf, the button barely did up, and I still can't figure out how he managed to pull them up they were so tight on his legs. Alternatively Kaleb had Josh's pants on, he walked through the house looking like a 13 year old whose pants are sitting under his bum, the legs so long he was tripping around the house. They were so pleased with themselves for picking out their own outfits that it was hard to ask them to change.

Occasionally Kaleb will have a moment of 'kindness' and ask for a cookie for Josh (knowing of course that he himself will get one if Josh gets one). One day I gave him the cookie for Josh and then moved about the kitchen as if I was done, it wasn't long before Kaleb was tugging my leg and saying 'but what about my cookie Mummy?' They may be small but I have learned through experience that they are much smarter than we give them credit for. Whoever said kids are born sinless never had kids.

It's funny to me, watching them think up ways to get what they want, or to trick their brother into something. You can actually see the wheels turning if you watch closely enough. Try it. Come over anytime you want (to babysit while I head to the spa for an hour) and see for yourself. These little people who that we gave birth too... they are masters at their game and worth of any opponent!

All that being said though. They are also the first to fight tooth and nail for me if Tim dares to tickle me, Kaleb particularly will launch at Tim, growly face and all, to defend his Mummy. If they see me sad, they are the first to come for a hug or snuggle and of course, to try and woo me back to my normal state with funny faces and giant whoops of laughter. If Josh is hurt (by someone other than Kaleb) then it's Kaleb who is first to ask if he's okay, the first to kiss the ouchie better, the first to say 'don't hurt my brother'. If someone dares take something from Kaleb (other than Josh) then it's Josh who is first to dive in and get it back for his brother. Already at this young age I can see the men that we are raising and I have to admit. I am so proud of them. For all the angst of daily life with two young boys I wouldn't trade a second of it. Wars and peace deals, whining and crying, fights and chaos and all!






November 25, 2013

Movement



In the day to day of things I don't notice change, growth or movement but if I look back at what was, and see what is, I can clearly see change, growth and movement. On the ship I would be in the dining room and not feel that we were moving but if I stood on the balcony of our room I could look out and see the waves rushing past us. Just because I didn't feel movement in one place didn't mean we weren't actually moving.

Life is like that.

I look back at the summer, I see photos of Josh and I see a boy who was so skinny that you had no fat, I could see his spine, and hip bones clearly pronounced and there was literally no meat on a bum that should have had meat. I think back to the summer and I remember how tired a simple walk could make him, how the simple act of getting up and eating were enough to wear him out for the morning. I didn't see those things at the time, or if I did it, was such a slow transition that I didn't see how bad it had become.

This weekend we celebrated Tim's birthday, and we went to Tim's parents place for dinner. Josh ate three large helpings of beef stew, a piece of bread, two large cupcakes, and a bowl of fruit and custard. He simply ate and ate, and it was amazing to watch. I looked at him more carefully that night while he dressed and got ready for bed. I can no longer see his spine, and his hips are now fleshy, his bum has filled out and there is meat on it where it should be. He looks now, like a healthy young boy. He walks now and there isn't the constant litany of 'can you carry me?'' or 'Im too tired' or 'Can we rest now?' He's got energy, he's got appetite and he's slowly starting to come further in his development.

The other day I looked back through diaries from last year at this time. I read the things that I wrote about Josh saying and I was shocked by how far his language has come in the past year. He sings on a regular basis, he chats non-stop, he strings a few sentences together and just recently he has started to explain words to me that he can't find the right word for... (for example, if he wants to say 'firetruck' but can't find the word because of his processing disorder he will say something like, 'the red truck that comes if a fire happens'). Basically he is slowly learning techniques to overcome his weaknesses.

It's hard to see things on a day to day basis, it's easy to get frustrated by how long things take to happen. This is true in almost every aspect of life. However, move from the center of the ship and stand on the balcony and you will see the movement of the waves, and land is approaching.

November 22, 2013

Majesty




Taking time to look at the sunset, and sunrise... it's something I haven't done in a long time. While on holiday we had plenty of opportunity to both (though I freely admit I only managed to wake up in time for one sunrise (middle shot). What I found so awesome about it, was that each one was different. Each sunset, each different set of colours, each unique cloud formation, and yet all where no one should really see it. For the most part we were far out to sea, no land for miles and yet so incredibly breathtaking. Why do I find this so awesome? I guess while I was sitting there watching the sunrise one morning it dawned on me that this was created for no one, it is what it is, and it's there just because. How many things on this planet are created this way, long before we were placed on this earth God created the sunrise and sunset, he created the forests, the flowers, the mountains, rivers, oceans, stunning views, breath taking plants and animals. Even now, there are thousands of varieties of sea life, deep in the depths of the oceans that no one has seen.

Walking through the streets of New York City I watched person after person pass by me, bump into me or sit beside me on the subway. I did the same on the ship, and at each port where we stopped. Each face, thousands of faces, all different. Have you ever really stopped to think about that?

The other day I saw a set of photos that someone took, they were macro shots of snowflakes and each one was perfect, each one stunning, each one totally unique. How many snowflakes fall in a winter?

Sometimes I get so busy, so needy or just too tired to really think of God as anything more than someone to turn to when life gets hard. When I am struggling with understanding Josh's health, when I am worried about Kaleb's food allergies, when I am needing strength to get through a hard week. I forget that God is the creator of the universe, that He is the great artist of each tiny snowflake, each beautiful sunset, each stunning sunrise and each unique person.

I forget that he is Majesty. Perfect majesty.

November 6, 2013

Direction


Today is the big day! After months of waiting, Tim and I are finally getting the holiday we couldn't have this summer! We fly to NYC today where we will spend four days, and then we get on board a cruise headed to Bahamas (with a stop in Orlando for a theme park - not telling the boys about that one)! I am so excited that I am away as of 3:45! Insanity! (I will not be posting while on holiday)

Quick update. The meeting the other day went very well. I prayed that I would be given understanding and I came out of the meeting having not once bumping into science! :D Instead they actually gave me hope for a better adult care system that may one day be a reality. I can't say much about that now, but I have every intention of writing a post that will be run by them before it's published and then you will get details. All I can say right now is that I have high hopes for the adult system but it will take a lot of work.

The meeting left me with one thing. A goal, direction for my future walk with Congenital Heart Disease/Defects.

I know that a lot of heart parents read this blog and I would like to appeal to you personally in this post. As parents going through this with our kids it's sometimes hard to see past the horror of 'now', we want to help the pediatrics units, we want to give our time and energy to helping make things easier for our kids. All of this is good, and normal. For a moment though, I ask you to think about your son or daughter when they turn 18, and many of them (THANK GOD) will because of the advances in medicine. When they turn 18 two things happen.

1) They start making their own choices medically. We were in the Cardiac Critical Care Unit once when a boy who had just undergone one of many surgeries turned 18. The day after his birthday the doctors told him that he needed yet another open heart surgery. Now that he was 18 he would need to sign consent. He refused. For one thing, he was in a great deal of pain, and the idea of going through more surgery didn't sit well with him, and his lack of maturity and normal belief of any teenager that he was immortal left him not realizing the true gravity of his situation. His mother and father begged him for days to sign the forms and thankfully he finally gave in and had the surgery, but it pointed out a glaring flaw in our laws surrounding pediatric care. 18 years of life, old enough to go to war and make your own medical decisions that mean life or death, but you can't drink and certainly don't have the true maturity to understand the ramifications of your decisions for the longer term. Educating our kids is vital, they need to know that their special heart is always something that requires care, it doesn't end when you leave pediatrics.

2) Once you are 18, out there making your own choices medically you are also sent to a new hospital, a new cardiologist, sometimes not even a specialized cardiologist (and I promise you there is a difference between CHD specialized Cardiologist and regular Cardiologist). They don't know your history, your quirks of health... for example. Joshua's doctor has known him since he was born, she knows every possible thing that has ever happened to him, she knows that his valves tend to reject faster than most, she knows that his circulation is different from most, and she knows that Josh is one of those kids who trends towards the rare side of situations. (If they say 1 in 100, Josh is usually the 1). However, when he is 18 he leaves her care and moves on to a new doctor who may not fully understand him, his problems and his history. They enter, at 18, a system that is underfunded, understaffed, and not yet ready for the influx of survivors that are now leaving pediatrics. This is fact, not a random guess.

As Parents of little heart warriors I believe that we have a responsibility to see that our adult health care is ready for our kids. I believe it's our job to ask questions of the politicians, the doctors, the hospitals as to what is being done to get that adult system ready. I believe we owe these kids, who have struggled through more pain and suffering than they should have, to educate them about their special hearts, to teach them about making these tough decisions in life, and to work towards making sure all the years of care we have given them are not wasted when they leave the children's hospitals/wards.

There are a lot of reasons why people give time and money, particularly to children's charity's, I myself support Sick Kids and Cardiac Kids; kids shouldn't have to suffer, they should be living their lives in innocence of this nasty world for as long as possible so we do what we can to make it easier for them, that's just normal. However, the reality is that as parents we should also look forward, we need to see past this horrible 'now' and see our babies at 18. We need to start now so that when they reach 18 they enter a system that is ready for them.

One last thing for the heart patients and the heart parents reading this. I am working on a new project with the Canadian Congenital Heart Alliance  - cchaforlife.org - we are asking that you submit a photo of your CHD survivor holding a sign that says "I am 1 in 100" (much like the one below). We are making a video for giving Tuesday (December) and we are hoping to make it viral for February (big goals I realize). Please send the pictures to me by December 1st! send to: lauriehaughton@me.com




Don't hesitate to contact me if you have any questions, want to help, or need to be connected to organizations in your area. I am here to help as much as I can. (though keep in mind I won't respond until I get back into town.

Many blessings friends, I will see you in two weeks! :D


November 4, 2013

in over my head

I can still remember that day in November, 6 years ago that we learned for the first time that there time that there was something wrong with Joshua's heart. There was a numbness to that moment, and looking back I see that I had no idea about the turn our path had taken. While I worried about things like 'would I be able to breast feed my baby?' instead of the bigger picture like 'will I lose my son?'. Shortly after getting the news Tim and I were headed on holiday to Florida for our annual November holiday. I remember that whenever someone wanted to know about the diagnosis I would have to get Tim to explain because I just didn't understand it. Now of course I know far too much about the anatomy of the heart, about the science of the heart and all the the little things that become an issue for the patient if the heart isn't working well.

This morning I will be sitting down with two of Toronto's most renowned heart surgeons, two of the very few Canadian CHD specialists; the goal? To talk about CHD awareness. I have a number of reasons for this meeting, I have a lot of questions and I won't lie to you I am nervous. I still often feel like the girl I was in the office of the Fetal ECHO lab that day, terrified and totally in over my head.

Sometimes in life we are given the directions, and our only choice to is to move forward on the path we have been placed on. When I was at the end of grade 10 I was failing Science. I hated it so much that if I went to class all I really did was annoy my teacher. One day, I was in the office waiting for something (not sure what all these years later) when my science teacher came in and sat beside me. I looked up at him, we were days away from the exam and I hadn't studied a thing. I remember smiling at him and saying something like this "Sir, you and I were wired completely differently. I hate science, I don't understand it and doubt I ever will. I need to pass grade 10 science to pass high school but we both know that isn't going to happen; which means that next year you will have me in your class again. What would happen if I promised you that I would  to never take science again, not here, not in college and not later in life, if you passed me through grade 10?" I can't remember his answer that day but I remember he smiled and moved about his day. One week later I found out that my science mark went from an F (no kidding, it was that bad) to a D, not stellar but a passing mark. I kept my promise to that teacher, I never darkened a science lab's door again. Then that day came when I was sitting at the Sick Kids Fetal ECHO lab, hearing all this confusing talk about science, anatomy and fear kicked in. For whatever reason God saw fit to put that girl who bribed her science teacher to pass her on a path for raising awareness about a medical issue. Research being done now is all science and I feel sometimes that God picked the wrong girl for this.  I am on this road blindfolded, but the reality is that I AM on this road and there are no exits coming up for me to get off. Today I will sit with these doctors and pray that God helps me understand, pray that this meeting is fruitful for the world of CHD, particularly in the world of adult care.

I tell you all of this because come ten o'clock this morning I could use any extra prayers you have time to send up on my behalf.

October 28, 2013

Who are you?


Who are you? Simple question right.

The answer is almost always what you do. 'I'm a mother, I'm a photographer', I'm a CHD advocate'...lawyer, doctor, teacher, nurse, pastor... fill in the occupation of your choice. However, that isn't what the question is asking really. I have been thinking about that all day. Who am I?

I am a woman who loves her family, I am strong but sometimes I am weak. I am funny but sometimes I am serious, I can love people but I have also been known to hurt people. I am rebellious but sometimes I follow the rules. I laugh and sometimes I cry. I am full of faith and sometimes I doubt. I am a maze of contradictions and yet somehow all of those contradictions make up the whole of me. I am not a static soul, forever the way I am today; I have changed since yesterday and tomorrow I will be someone slightly different from who I am today.

My job, my role, my interests are not who I AM, they are what I DO.

Thinking of those things leads me to think of my kids in the same manner. Sometimes they go through a phase I hate and I worry... 'is this tantrum filled, angry, rebellious, child the little version of the man he will become?' I have heard today a few people talk about what they want their kids to be when they grow up... a doctor, a lawyer, an engineer... (I personally had high hopes that one of my guys would be a Toronto maple Leaf). The reality is, that while I listened to these conversations I sat mulling over what I actually hope my boys will be. What will they answer one day when that question is posed to them. "who are you Joshua?" or "Who are you Kaleb?".

Here is what I hope they answer.

"I am a strong man, I defend the weak, I feel compassion, empathy, and love. I work hard to provide for my family, I am respectful, loving, faithful, and committed. I am full of laughter, though sometimes I am brave enough to cry. I believe, even through my doubts, I have loved and sometimes I have hurt but I have always known when an apology is necessary and I am humble enough to admit it. I am a child of God."


October 27, 2013

life beyond Eden



Sometimes the reality of the world we live in comes to our door and knocks. I used to have these terrifying nightmares where there was a 'bad man' trying to get into the house to hurt my kids and I was blind and unable to use my voice. I could hear the kids crying but I could do nothing to stop the man from getting in and hurting them. The dreams came after a particularly scary time when we nearly lost Joshua but the reality of the dream still manages to shake me to the core.

I know that sometimes scary, hurtful things happen. I know that I can't protect them from everything. I know that my job is to teach them how to rise above the hurts of this world and look to a future world that is without pain, without sorrow, without fear, and yet I still wish I could create a magic bubble to surround them in until they are old enough, strong enough, wise enough to handle the problems they will face, the pain and the fear and the reality of life beyond Eden.

Last night I snuck into their room and watched them sleep, so innocent in their beds, Kaleb curled in a ball with Tiggy clutched in his little hand, his thumb planted firmly in his mouth, Josh, sprawled out and snoring softly after a long day of fun. I prayed for them and it dawned on me, that is all I can do and though the power of prayer (as evidenced in my own life and in Joshua's journey) is strong, it still leaves me feeling powerless to really 'help' them when the times come.

I can come in after the fact, I can advocate for them, I can show them through actions that I mean what I say when I tell them I will do anything to keep them safe but the reality is that I can't actually protect them from everything. I can do my best to make sure things don't happen twice, I can step in and soothe the hurt, cuddle the fear, kiss the burdens and even pray against the inevitable pain but I can't stop it all. I can't make Joshua's heart better, I can't ensure that no child will ever hurt Kaleb again, I can't force Joshua's brain to heal completely, I can only pray that all this happens in time. One day a girl will hurt them, one day an adult might say something that hurts them, one day I myself may unwittingly hurt them.

Last night as I watched them I longed to stop time right in that moment, when they were safe and sound and happy in their beds. I knew that one day the love I have for them would mean that it would hurt me, that is the nature of love. You can not love without being hurt. As a parent it makes me see the love of God so much differently, how much he must ache to see us safe, protected, loved, and safe within our beds at night and yet in order for us to grow he must allow us independence, and with independence comes inevitable pain, sorrow, fear and suffering. How we must break his heart.

October 26, 2013

Mama bear


This week I was called upon to stand between my son and a system that sometimes fails. I was put in a position to defend and advocate for him & for his safety and to show my mama bear claws. It has not been an easy week, it's been stressful, upsetting and often very frustrating. However, I have learned a lot this week about being a Christian woman in the midst of a stressful situation, I have learned how to defend in a Christ like way, how to act with dignity while fighting tooth and nail for a child I would die for. This week, I had the privilege of showing Kaleb through actions that I love him every bit as much as I love his brother, that I would do, and will always do whatever it takes to keep him safe, and to ensure that he also feels safe.

At the beginning of the week Kaleb was assaulted at the school, it was later escalated through a number of mistakes made by a number of parties, and all the 'Mummy blood' coursing through my body had me wanting to go in raging. However, for the first time in my life I had a still small voice inside me reminding me that I am to be a witness, that being a woman of faith calls me to act differently, calls me to respond differently. I am not sure I can explain that feeling to you very well as it's been something new for me, and it was hard. I think it was harder than many things I have had to do because my natural response was to fight, to rage, to 'pitch a fit'.

I don't know why I was called to be a witness, I don't know who I was supposed to be a witness to, but with God's help I can see his hand on me through out this week, calming me, lowering my blood pressure at the right times and yesterday we had a meeting with both the principal and the superintendent  that has moved us on a path of restored trust and a rebuilding of faith in the school system that Kaleb has found himself. Actions in time will prove louder than words but I believe we have begun a process that will lead us to a solid educational experience for our son.

I know through your emails that many of you have been praying for Kaleb and I wanted to thank you, and I ask that you pray for the people involved in this incident, for the other student involved, for the leadership of the school, and for the teachers.

October 12, 2013

Thanksgiving

Every night before the boys go to sleep I ask them 'what are you thankful for today?' and the response varies depending on what crazy day they have had. One night Josh was grateful for being able to ride bikes at school, Kaleb was thankful for Tiggy one night; however the things they are coming to learn as things to be thankful for are changing, maturing. One night, Kaleb was thankful for Mummy and Daddy, Josh for being able to see Grandma and Grandad, or as in the case one night a few weeks ago Josh was thankful for a friend he hadn't seen in a while. He prayed for her because 'she is family'.  One night they asked me 'Mummy, what are you thankful for?' and my response was simple. Them, Tim and our family.

Today, as we move into thanksgiving celebrations I am in the process of a reading a book called Preemptive Love. It's a story of an organization that contacted me prior to Joshua's surgery this past August. They wrote for two reasons; 1) To tell me that there are people praying for Joshua in Iraq and 2) to ask for my help. I will tell you more about this organization in the days ahead but a quick overview... there are literally thousands of kids on 'backlog' for heart surgeries. Kids who because of war, because of chemicals that rained down on their parents in 1988, because of a lack of doctors, equipment, and often because of politics can't get the surgeries that they need.  Josh was born with Complex Pulmonary Atresia, had he not had intervention hours after birth he wouldn't have survived this particular heart defect. Had we lived in Iraq we wouldn't have him with us, and there are thousands of parents mourning the loss of their kids today for things that though not easy to fix, are fixable here in Canada. The Preemptive Love coalition is working to change things in Iraq for these kids, sometimes with the fear of death hanging over them. As I said, I have a lot to say about this organization in a future post but for now the point is that I have a lot to be thankful for.

In Canada, as much as we are criticized for our social health care, long wait times in the ER and other little annoyances, we are blessed though we don't often see it. We have grown so used to social medicine that we don't understand how lucky we really are. 

I remember one night sitting in the ER waiting for a foot X-ray, I sat and read my book (as the mother to two much younger boys at the time this was actually a welcome chance to read in peace! A break!) while I waited, but being a people watcher I actually spent more time watching those coming in around me. There was a lot of grumpy, tired people but a funny thing happened... after the doctor was finished patching them all up and sending them on their way, they simply walked or rolled out of the hospital having paid NOTHING. One night, sitting in the CCCU at Sick Kids we chatted with an American Doctor who let us in on a secret. Josh's bill for his first surgery (just the OR, OR staff, and the medicines used in that surgery) was a bill for half a million dollars. This did not include the CCCU stay, the medicines or the medical staff during his stay, it didn't include his transfer to step down, nor did it include his transfer to ward. It also didn't include his four catheterizations, subsequent three other open heart surgeries, his multitude of ECHO's, MRIs, his stroke therapies in hosptial. We would have been bankrupt, or we would have lost our son. The other secret that we were let in on... Joshua's four surgeries would have in the US been considered 'elective' by the insurance companies. There we would have had to wait (unless we had amazing health care or loads of cash) for his heart to be so bad that our only option was heart transplant.

This, of all the things that I am thankful for this thanksgiving is my biggest cause for praise and thanksgiving. That I live in a country that cares enough about her people, that we have social health care. I thank God every day!

Just this morning I saw a bill from a woman I have met through social media whose son also had heart surgery this summer. It was one bill, the smaller of them all, it was just shy of $200,000. My heart aches for these people, who either can't get the surgery for reasons I listed above in the conflicts of Iraq, or because they just can't come up with the money. I pray for them and I thank God that Josh was born Canadian.

Tomorrow and Monday as Canadians sit around their tables eating turkey and telling others what it is they are thankful for I will also share my thanksgiving story and pray for those whose path isn't as easy as ours.

Tonight, saying what I am thankful for is easy. I am thankful to be Canadian. I am thankful to God for the gifted surgeons, top notch hospitals, and amazing nursing staff at Sick Kids, I am thankful to God for my children and the truly amazing and loving young men they are turning into.

God is good.

Happy Thanksgiving my Canadian brothers and sisters!

October 10, 2013

I need your help



Today's post will be short and to the point as I am running very close to 'out of time' for the giant list of 'to do's' that await my attention.

As a Mom who has made it my mission to raise awareness and one day (hopefully, money) for CHD I am now in a race to see what news outlet will pick up the story for February (heart month). I have a lot of planning already in the works and an article in the process of being written. However, in past years, regardless of the copious amount of work I do, I still can't get interest from the media.

I am writing this because I need you, my faithful readers, to help me. If you know, have friends that know, or may are, a reporter, editor, in TV, anything... I need you. I have the connections for the world of Congenital Heart Defects, the medical personnel, the charities, and I have a lot of ideas for 'the hook' that the media requires. What I don't have is the connections to the media to make the story go live.

Please, read and share this and maybe this year... finally... we can begin to get the stories of CHD survivors out there, raise awareness for better adult care, for screening on newborns, and possibly influence students of cardiology to go into a specialty. One day, with your help, we can find a cure!

Thanks for the help!

Laurie

October 9, 2013

Happy Birthday




Dear Kaleb (a.k.a. The Kaper),

When you were born the very first thing you did when you saw me was suck my nose, I don't have a clear memory of your birth because you were born through a C-section and the meds were powerful, but I do remember seeing you and I remember you looking at me and then sucking on my nose. It left an imprint on my heart that grows with every day, week and year of your life. Just when I thought my heart couldn't possibly love another person, when I thought my heart so full that there was no more room, you popped into my life and I found my heart expanding to an even greater capacity; and every day it gets stretched to new limits as I grow even more in love with the little man you are becoming. There is not a day that goes by that you don't make me smile and laugh. You bring warmth and light into my life, you bring beauty and creativity, and you bring love and compassion into our home.

We have had a rough road this year, it's not been easy and you have been too young to fully understand the changes that have taken place, yet you have met each challenge and remain standing, stronger because of the caring and compassion you exhibit. The love I see between you and your brother brings a tear to my eye as I know that years from now, when your Daddy and I are long gone you and he will have each other and be stronger for it. There has not been one day through this past year that I haven't thought of you, loved you, longed to spend time with you, and prayed for you. I pray for you EVERY DAY. I pray that you will discover your gifts at an early age, and I pray that I will have the courage to help you reach your dreams even if they pull you away from me. I pray that you will grow into a strong, committed and compassionate Father, Husband, Friend. I pray that you will change the lives of those who know you through wisdom, strength, courage and joy. However, my biggest prayer for you is that as you grow you will find a faith of your own, a deep and lasting relationship with your Father in heaven, and that through your faith you will find the strength you need to handle and adversity that comes your way.

Kaleb, know that you are loved. So fully that it cannot be expressed in words. You are loved, valued as a unique member of our family. It was you who completed our little family and we thank God for you!

Happy Birthday little man! I love you!

Mummy xoxox

October 8, 2013

Power Kid? Raising Attila the Hun.



Today marks the last day of the Kaper being three years old; it (to me) is significant. Starting tomorrow I move from having any 'toddlers' and having two full blown 'kids'. The summer was hard for Kaleb, struggling to find his place in a family focused on his ailing brother he sought attention through temper tantrums, rough behavior, anger and easy meltdowns. I knew the main cause of his problems but struggled to find easy solutions, I felt like I was letting him down, neglecting him, and in the end failing him. Then September started and with it a new routine of school and home life. It was not a seamless transition for any of us. Kaleb fought me hard on walking the 15 minute walk to school, he came home utterly exhausted at the end of the day and by 6pm was a force to be reckoned with. Then I started reading a book that I was given for review called 'Parenting your power child' by Kevin Leman.  I didn't start out thinking it would do anything to help me, in fact I read it only because I 'had' to for the blog and to be honest I am late in my review because each chapter was packed full of advice that I wanted first to try before I did a review.

One night I was sitting drinking coffee, recovering from yet another family dinner gone wrong when I started reading a chapter called 'Raising Attila the Hun' and the more I read the more I saw THE KAPER. Yes, my sweet, adorable, beautiful child was my power child. He was my own personal terrorist! Through the book I was able to see that I was actually walking on egg shells around him, not just because of his attitude (though that was part of it) but because of my guilt from the past year of trying to get Josh the help and care he needed. Kaleb had figured out how to 'work me' and he was getting pretty good at it. This book has many examples of the 'power kid' and as I read each one I realized that I was reading about Kaleb as if Kevin Leman himself had met and written a book about my sweet youngest son. I also began to see how as the parent I had lost control, and how it was on me to get that control back. So I began to change simple things, dinner for example had become a battle ground of him refusing to eat and then when finally forced to eat he would chipmunk his food until finally someone (generally Tim) would have to dig it out of his cheeks for fear of him choking on it in the night. I began to dread dinner time! I tried Kevin's advice and told Kaleb that he didn't HAVE to eat but he did need to stay at the table until we were all finished. If he didn't eat, but wanted a snack later I would set his left overs in front of him. It didn't take long for him to realize that he might as well eat with us because he'd have to eat it eventually. If he didn't eat it, and didn't ask for a snack later then he just went to bed, no dinner but big breakfast in the morning. Things slowly began to change at the dinner table. When the talk changed from 'Kaleb eat your food!' it left room for 'how was your day?' and now when I sit down with my guys I get to hear all about their friends at school, the games they play and how many sleeps it is until the next thing they are looking forward to.

This book is changing the quality of our family life. The routines I have set up as a result of this book have left me room to enjoy quality time my youngest who was so desperate for attention, it's made room for less time outs and many more hugs and snuggles. Kaleb now has 20 minutes alone with me to walk to school, 20 minutes alone with me to walk home from school and a little time left over to read a book before Josh gets home from school. Tantrums still happen, but my attitude towards them have changed, I meet them with calm and quiet and there is no giving in. As a result they are becoming less frequent, less 'violent' and I am starting to see a new child emerge.

At school yesterday I had another mother ask me if Kaleb was my son, I felt my stomach knot at first as I hesitantly said yes (thinking ... what has he done?) but she smiled and said 'oh, he's such a lovely boy, always so pleasant and sweet to the other kids); the teacher who overheard this agreed and said 'he's such a pleasure to teach.'

So. One Kaleb's last day of being three I decided that it was time to finally write this book review and to thank Kevin Leman for writing this book for mothers (and Fathers) like me, who struggle with a power child. The things I have learned will serve us well for both boys in the years to come.

 "Book has been provided courtesy of Baker Publishing Group and Graf-Martin Communications, Inc. Available at your favourite bookseller from Revell, a division of Baker Publishing Group".

September 30, 2013

itsy bitsy spider


For most parents, hearing their little munchkins running around singing a little song is something so common that one would be tempted to ask them (in a kind voice) as them to stop... We however are not most parents. We have heard Josh humming, but never have we heard him sing a song with lyrics. Today though things changed. Today as Josh was getting his shower (post hair cut) we had the utter joy of listening to him sing (with words and proper tune) 'itsy bitsy spider'. It was so normal that I almost didn't notice it, and then I put the scissors down (I was cutting Kapers hair) and listening in awe. Just one month into his new school and Josh is singing! My heart started singing in that moment. I find it amazing how the mundane can so quickly become a joy in the right circumstances.

This week I have noticed a few things, minor things really but improvements. He tells me about his day, fights with Kaleb over who will tell me first, he asks us 'how was your day?' when he comes through the door. The progress is slow... but then it always has been; but in the last month I have seen change and with that change has come a new hope. My prayers for him have always been for total healing, heart & stroke alike. I pray that one day he will stand before a crowd and speak (perhaps through his work, or maybe to tell his story, or it could be a message to his new bride on his wedding day) and he will speak so clearly that no one will ever know what he has achieved through hard work, patience and God's healing hand. That is my prayer for my son. Total healing. It's the reason why I rest my hand on his head each night and silently pray for the brain to heal, for new pathways in the brain to form and it's why when a therapist tells me that he may never 'speak normally' or 'may never gain his word retrieval back' I simply nod.

This God we serve, he has done infinitely more for Josh than I could have imagined, and through our son I have learned so much more about God than I dared dream. He has taught me what faith is, and how sometimes all it takes is a mustard seed.

(Josh - who was supposed to be in bed - just came down to use the washroom. When he finished he ran back upstairs singing that little song again... so beautiful)


September 20, 2013

post op terror


After every surgery that Josh has had we have noticed three things.

1) He comes home and the first night, sometimes two nights he is elated, smiling A LOT, thrilled to be out, energetic to the point of dangerous (wanting to jump off beds 5 days post op).

2) Day 2 or 3 he becomes moody and depressed, realizing I guess that the pain wasn't left behind at the hospital.

3) after a month or so, when everything seems to be over, when the pain meds are no longer needed, when the energy has returned, when the dark cloud has lifted... the nightmares begin.

After surgery number 3 those nightmares lasted for over 7 months, it seemed endless, we were exhausted, we had tried all the tricks in our arsenal, nothing worked. The fear had a name we discovered... it was a red dragon. In the end we got a sword and slayed that dragon.  It took some time, and we slayed a lot of those pesky dragons but eventually the night terrors ceased.

Josh, now almost two months post op has begun to have the nightmares again. 2 or 3 a night. I have tried all the tricks used before but so far with little to no success. We pray nightly for 'no bad dreams' but it doesn't work. He has even taken to making a bed for God beside him so that God will be with him all night, but still the dreams persist. He wakes up night after night, running into the hall screaming and inconsolable, and I won't lie it breaks your heart.

I am not sure what else to do for him, they say that a lot of patients that have been on bypass have nightmares post op, but they don't tell you how to help them. He won't talk about it during the day, and this time he won't tell me what it is that he's dreaming about. I can't help him and that's the hardest part of all this CHD mess. Looking at a child that you love so much it hurts and seeing terror in their eyes... there are no words to describe how gutted it leaves you. Long after he's gone back to sleep you are still lying awake waiting for the next round to begin.

I have come to know many of my readers, and I know that many of you are praying people. Please, pray for Josh to find peace, rest, pray his nights are filled with good dreams and that this post-op horror ends quickly.

September 19, 2013

Commitment





When I was a young girl I imagined that life would be like a Disney movie. I would wake up one day and my fairy godmother would turn me into a princess, perfectly dressed and waiting for my prince to place a glass slipper on my foot. The older I got the more I realized that it may not happen the way I had dreamed of. I had been sure that God had the perfect man chosen for me, that he was waiting for me, that someone out there was 'the one'. I searched for him in ever face I saw and even thought a few times that I may have found him.

I have now been married for 6 years and change, and what I have learned is that life is not a Disney film. Love is something that happens over time, true love is what you find when the squishy romantic feelings fade, when life gets hard and there is someone standing beside you at the end of the day offering a shoulder to cry on. Love is what happens when the bills pile up and you have someone there to strategize with. Love is what happens when you haven't slept in months because you have a new baby who demands all your time and energy. It happens when you look at the person you have promised your life to and they don't need you to say a word, they just know what you need. Love, love is cleaning up the kitchen for you in the morning before you wake up so that you have a fresh start on the day. Love is bringing you a cup of coffee to your bedside table when you have been woken up through out the night and can't seem to muster the will to get out of bed. Love is coming home to find a clean home, dinner laid out, kids bathed and entertained, love is forgiveness, compassion, creative, hopeful, changing, dreaming. Love is faithful regardless of feeling, it's action in the face of inaction. Love is commitment, love is a choice.

Love grows, it doesn't fade. It's work, often hard work. It is depth, intimacy, knowledge of the other persons flaws, it's acceptance, and it's at times painful. Love is a seed, it needs warm soil, sunlight, and constant watering to grow. Leave it undernourished for too long and it begins to die. Love is action. It's thoughtfulness. It's hope where there seems to be no hope, faith and belief in you when you can't have faith in yourself or belief in yourself. Love changes you. Love changes your dreams, it is selfless, it hopes for only the best of your partner, it is protective, it can be fierce. Love stands by your side no matter what, not because it has to, but because it chooses to because love is a choice. Love is waking up in the morning and saying 'I choose to love you today', It says 'I know we are having a hard time right now but I choose to work through it with you', Love is saying 'I made a commitment to you alone and I intend to work at it until I die.' - and at the end of the day, if you continue to choose that love, to work out that love, then it grows deeper, more intimate.

Tim and I loved each other deeply when we married but when I look back on that day and think about how I felt then compared to how I feel now I am amazed by the capacity that my heart has to love as fully as I do. It's grown so much deeper than I ever imagined it could. He has stood beside me when the worst that life has thrown at us threatened our footing, he's held my hand and kept me standing. Together, through the fun and easy, the happy and joyful times, together in the heart wrenching moments, the tough calls, the sleepless nights, the worry, the anxiety, the fears... He has never wavered. Everyday he makes a decision to love me, to stand by me, to lead our family into a place of wholeness. Everyday he works to make this home a happy and healthy one for me, and for our boys. He is not prince charming, he's not some hero that God sent for me alone; but he's my miracle, my blessing, my best friend.

I thank God everyday that Tim chooses to stand by that commitment to love me, I am not always easy to love. I aim to teach my guys how to be men like their Dad, not the hero's girls are told will come and rescue them from their ugly step sisters and give them a life as a princess, but men who will stand beside them through whatever life throws at them.

Sunshine call



We are in week three of Josh's new AMAZING school (Bloorview School Authority - attached to the Bloorview Rehab hospital). I have to tell you, I never dreamed that it would be as great as it is. I knew it would be good, but the little things they do to give us added comfort with the care and teaching that Josh is getting just adds immeasurably to my total belief that this school is the best place for Josh, and that when he completes the two year program he will be leaps ahead of where he is. Prayerfully even on target for his age!

The first day of school, the teacher, who knew that I was a little worried about him taking the bus, called me mid morning just to say that he was doing okay. She has phoned me a number of times since to ask questions, give reports and follow up. I have also spoken with two of his therapists (Physio & Language) who have done the assessments and started working on their goals. It is such a weight off my shoulders to know he is FINALLY getting the care he needs.

Today I received my first 'sunshine' call. A sunshine call, I have learned is a phone call from the teacher to report that your child has met one of his therapy goals! One of the many issues with Joshua is his legs, they are curved in such a way that his hips are turned in, causing him to walk a little like a duck, add to this they tip toe walking and we have a number of problems, frequent falls, tight muscles, high tone and trouble doing things that other kids find natural. For example. Joshua has long struggled to ride a bike. His feet won't stay on the pedals, so we have had to get foot plates for his bike which we then 'tie' his feet into. It works, he can ride the bike (particularly now that he has the energy to do so). The biggest problem with foot plates is that if he falls he is 'tied' onto his bike and can't get up on his own. I spoke with his therapist and asked her if we could make one of his goals riding without foot plates. Today, my sunshine call was to inform me that he did it! He rode all through his mobility class with NO FOOT PLATES! The teacher called and when I told her to tell Joshua that I was very proud of him she called him over and put him on the phone so that I could tell him myself! How awesome is this school? This teacher?! He was so happy, so proud! He told me 'I went so fast!'. Now the hard part is going to be slowing him down and I have to admit... I don't mind one little bit!

This school is just one more daily reminder of the way that God is looking after Josh. I will never forget the day we drove up there for the interview. I prayed all the way there 'make me hate it Lord' because I knew that getting in would be a very long shot. Instead, I came out of there totally in love with the program and totally discouraged at the same time because the principal had told me that there were only 100 spots, and there were applicants from across Canada and the US. It all boiled down to who the other applicants were, what there needs were and if they were compatible with Josh. I didn't think we stood a chance. The day we received the acceptance letter was the same day that learned that he would need a fourth surgery. I had been so discouraged and getting that letter, on that day, seemed like God offering me hope for the future.

Today, when I got that sunshine call I wanted to cry with relief, not because it's a huge deal that he can ride a bike with no foot plates (though I guess it is) but because we are only at week three and already we are getting results. The biggest issue is his language, and I still pray for that daily... but I have a feeling that if ever there was a place that could help him, God has brought him to it.

September 17, 2013

the raw truth



The plan was to read a few blogs and hit the hay for the night, but I guess I hit on the wrong blog, or maybe it was the right one. I am not sure which yet.

This post is me, me being as honest as I can be and I have wanted to write it for months, maybe years even. I have kept it hidden in the deepest parts of me, believing I was wrong to think it, wrong to need it, I have been eaten with guilt, that I am a horrible, selfish Mom who makes things all about me. That is the lie that I have been sitting with for a long time, and as the last few months of played out, the lies have become stronger as the desire grows in me to say the truth. Then I read that post.

A woman writes about how her husband had an accident, he was left with severe brain damage, he changed, they nearly lost it all, he was angry, depressed, tried suicide, all because he had damaged an important part of his brain. Needless to say they were on the verve of losing it all, the house, the business they had worked hard for years to build. She was at the end of her rope and doing her best but it was cutting it. Her husband would have some lucid moments, when he would 'return' and in one of those moments she shared with him the truth of their situation. They were desperate. He quickly went and put all the vehicles on the large front lawn (they lived on a farm) with a giant sale sign. Not long after that he received a call, not from a buyer but rather a neighbor who called to berate him about the way the 'sale sign and items' made the property value drop, he threatened to call the police if he didn't take it down and so and so forth. The husband, still lucid, sad quietly listening. At the end of the call the husband responds with this, " “Sir,” he said, “There was a time in this country, in this community…when if you drove past your neighbor’s house and saw every single thing they own was for sale in front of their house…and that their lawn had not been mowed for weeks….that you would stop and say….WHAT IS GOING ON, SOMETHING MUST BE TERRIBLY WRONG, WHAT CAN I DO TO HELP YOU?”... the man was quick with an apology, and offer of help. That's the gist of the story. That's not was evoked such a raw emotional response.

Through out the posting she talked as well about wearing signs... 'I haven't eaten in 3 days', or 'my child has cancer', or 'I am doing the best I can'... this went on. She talked about wishing that she could wear a sign, one that read 'my husband is recovering from a brain injury, and under all of this he is amazing and my heart is broken, please be gentle with us'

I wrote a few posts back about Josh's scars, his proof of life. Through out that post there is a second post, one that is read between the lines because I just couldn't bring myself to write the words for the world to see, not when I couldn't even say them out loud to myself. I feel like though Josh fought that war, he battled through that pain, it was him on that table, it was him who was forced at 6 months, 2 years, 3 years and 5 years to be braver than I have ever dreamed of being, it was him who toughed it out through literally hundreds of different appointments, therapies and tests. He's the hero... he wears that badge of honour... but I wish I had a sign too, a scar, something that could tell the stranger 'my son has a broken heart, and it's breaking mine. Be gentle with me'. I don't want the sign so that I can get special treatment, or recognition... but there is a part of me that feels very alone in a crowd some days. All the faces in the grocery store, all the strangers I pass each day, they look at me and yet they can't see me, they can't understand what has happened in our home for almost 6 years. Just as I can't possibly know what they would write on their own sign. It feels selfish, it feels wrong and guilt over these thoughts has been eating at me for YEARS. It was Josh's battle, God's victory, I was merely the cab driver. I don't want this to be about me... that's not what the sign is about, I just want (for me, and for others who feel the need to hang their own signs) for the world to see those signs and be more compassionate, more patient, more 'gentle'.


Great destiny?



C.S. Lewis once said 'hardships often prepare ordinary people for an extraordinary destiny' and I believe that in many cases he is right but I think too that hardships can refine you, shape you, not for some 'great' destiny but rather simply to make you into a better version of yourself, the version that God created you to be.

I have been told that God has a reason for Josh's struggles, for our suffering while we walk him through these years and there is a part of me that really longs for that to be true, I want to believe that God has some HUGE future for Josh, something so amazing that all of this will be worth it. I want to look back from that place in the future and see a reason, to get the answers to the tougher questions that I have had to ask God. However, I have to wonder at what our idea of 'great destiny' is, and is it compatible with what God sees as a 'great destiny'.

I was thinking about Jesus this morning, here is a man who was born in a stable, with the stench of cows coming on the heals of his first breath on earth. Here is a guy who had to work for 30 something years as a lowly carpenter, hands full of splinters and hardened by years of blisters. Here is a guy who, when he finally got to work (full time) on his 'great destiny' was laughed at, ridiculed, tormented and eventually tortured and killed. Yet, he had the greatest purpose in all of time, his story has passed from generation to generation, his accomplishments and teaching cross all religions, have shaped culture and law, even if you don't believe he was the son of God, you know who he is, you have heard of his teachings and you most likely (at the very least) believe he was a good person, with good morals and maybe even a prophet. His 'great destiny' was unmatchable, yet my guess is that at the time, when he was bent over the rough table, sanding it smooth, he didn't look much like a guy who had great things ahead of him.

Of course, I realize that he is the son of God, so to compare ourselves to him is a mute point; however, it does raise questions in me. What a 'great destiny' is to God, is not necessarily stardom, riches, success on the corporate latter, it's not wealth or fame, it's not incredible talent or brains. My best guess is that it means, humbleness to serve, love to reach those in need across the oceans and in our own back yards, compassion to forgive those who have hurt us and those we love, and when the day is done, words that give only God the glory for all that he has done in our life. How do we achieve this 'great destiny?' I believe that one of the ways that God leads us there is through hardships, just as the late Mr. Lewis says.

September 16, 2013

How or What to think?


We send kids to school at 3 years old, we expect them to learn things that we ourselves didn't learn until we were 5. As a Mom I have looked at my youngest and thought, he doesn't know his alphabet yet?! What have I done wrong?! Josh, he knew his alphabet before he could say a full sentence (literally!).  Why is one kid learning and the other one isn't? What did I do differently?!

Then I thought back to my days as a school girl. I HATED school, I was terrible at it and got easily bored and frustrated by the lessons I was supposed to learn. Was I stupid? Not at all! Was I made to 'feel' stupid... most definitely! Why? All because I learned differently. I could read a chapter about science 10 times and walk away without a clue as to what I had read, but if I did an experiment on the exact same thing I could tell you all about it. I was a hands on, visual learner in a system built for readers and listeners. Joshua, like his Dad before him, is a reader and listener where as the Kaper is more like me.

Today at Kaleb's school, I noticed that they had made a mistake (see above photo) when painting an alphabet caterpillar on the ground where the kids play. You hop from A to Z, from the tail of the caterpillar to his face; hopping from A to Z on a caterpillar in the playground is much more likely to teach Kaleb the alphabet than sitting him down with a book about it. Does it matter ultimately if the order of that caterpillar is wrong? Who decided where the Y goes anyway? Why can't the D be the last letter of the alphabet, and the Q be the first? Who chose the right and the wrong way to teach, and to learn? Now. Please, don't get me wrong. I believe that there is a rhyme and reason to things and that we should teach our kids the alphabet properly, not because I think it makes a difference in how they will eventually learn to read but because I think he will be made fun of or look stupid if he were to recite it wrong, or God forbid he one day chooses to be a painter and paints a school yard with the giant caterpillar and the letters are in the wrong order. :) I guess my point is... will learning things differently really change the scope of what they learn, or, could it be, that if we took into account how each child learns individually we could actually teach them more, bring more out of them, teach them how to learn, not what to learn.  I hope I am making sense here...

Let me say this. I was speaking with a Mom last year who was frustrated because her daughter was being taught the answers, answers to be memorized and known but she was not being taught how to come up with those answers on her own, she wasn't being taught how to learn, how to think, just what to think. By taking religion, politics, social issues out of the classrooms, by leaving no room for open discussions (for fear of being non-politically correct) kids are not learning HOW to think for themselves, how to articulate what they think, how to listen well to other opinions and share their own opinion in a safe and free way.  We have kids who are being told WHAT to think, WHAT to learn, how to behave to be 'normal', we aren't teaching them HOW to think or learn.

Let me also say that I believe that the home is a valuable space for this, I am not ruling this out. I just wonder at a society so bent on freedom that it is actually the exact opposite of that. As a Christian my thoughts and views often 'offend' and therefore I am the one who is 'wrong' or not 'politically correct', I am the one who often fears sharing my opinion because I will most likely be viewed as wrong. (Not that God called me to be politically correct, nor comfortable for that matter. I was called to live for him, worship him and serve him. That's it. Not to judge or abuse, not to hate or placate.) As a society we have set into play a new system wherein we are not 'tolerant' of anything but what society says we should be tolerant of. We tolerate certain things but we don't tolerate the 'other opinion' on the matter at hand. We say we accept ALL, but we don't do we? If we are truly honest with ourselves.

So, wow! From a mistake on the playground to politics in the space of a few paragraphs. This is what happens when you give a Mom too much time to think in a day. :) I would love to hear the opinions of others on this.

I want to raise my boys to learn how to clearly state their thoughts, to hear what others have to say and listen without judgement yet stand firm by their own convictions. I hope to raise my boys to learn HOW to learn, however it works best for them, I want them to be able to 'figure it out' and not just recite it by rote. I hope that one day, when they are older they will be able to say what they think without fear, that the tides will change where we aren't ruled by 'correctness' but live in true freedom. 

September 11, 2013

Not to act is to act



Today, for obvious reasons the Western media, and those affected by what happened on September 11 2001 will look back 12 years and relive some of the most horrific scenes in recent years. I don't want to spend time today doing what every other media outlet is doing, I don't want to go back and rehash that day. We have all seen the footage, we have all heard the heart breaking stories. Instead I had some questions about the future, and I warn you, this may be offensive to some of my readers, please know that I value all opinions and only attempt to share mine.

In 1988 while the west slept peacefully in their beds bombs were flying in a town called Halabja, a Kurdish town about 8 miles from the Iran border. Then the 'chemical rain' began to fall. Over 5000 Kurdish men, women and children were killed and over 10,000 maimed. The perpetrator? Saddam Hussein; in his quest to wipe out the Kurds from northern Iraq he committed acts of war that once upon a time we said 'never again' to. Genocide.

The reason this particular event sits so well in my heart right now is that personal. Right before Joshua went into his surgery this past summer I was contacted by a woman who was reading my blog all the way over in Iraq. She wrote and told me about the project that she and others like her were working on. It's called the 'Preemptive love coalition'.  (more to come about this organization in the weeks to come). They are seeing the effects of the 'chemical rain' even to this day in the children that they bore post attack; birth defects are abundant there. Why is this so personal to me, because there are thousands of little boys and girls with birth defects, and many of them have heart defects. Almost all of the surgeons have fled the country, there is very little to no help for these kids. Unlike my son who was blessed to be born in a country, a city, where we can get him the help he desperately needs for his life saving surgery, there are mothers and fathers who are burying their kids for things that here would be a day surgery. It makes the 'heart mom' in me ache to think about those kids, those parents going through what we have gone through with next to no hope to cling to. How does this have anything to do with today? What does this have to do with September 11th? As I read the news today I am reminded that we went to war because there was a 'threat' of chemical weapons.

Today as we take the time to remember what started this particular war with 'terror' I ask that you also remember that years before 9/11 ever took place there were entire towns destroyed, villages wiped out, families obliterated and the reaches of those bombs have now killed into the next generation and threatens even more children, more families.  we stand in the place where we should have stood in 1988, we have a choice. We can act to save this heinousness from happening to anyone else, or we can stand silently by and watch. I am not normally a believer is war, I tend towards pacifism  Then I see what happened in Syria, I look 24 years into the future and I see the children of Syria bearing children with heart defects, and other known birth defects; If of course, they can bare children at all. I look into the future and I see more horrific events like the world trade center, I see more death, more destruction and many more tears. The enemy is real, there is no question that it is real and all politics aside (I know there are many issues at play here) I say that we should remember the holocaust, I say we look at the photos of the 6,000,000,000 Jewish people who were murdered while the world for the most part remained silent.

“Silence in the face of evil is itself evil: God will not hold us guiltless. Not to speak is to speak. Not to act is to act.” Dietrich Bonhoeffer

September 7, 2013

a million moments




It's raining out, the kids are playing quietly upstairs and Tim's in his office working, so I am enjoying a nice hot cup of coffee and taking some time to think about things.

On Wednesday last week I took my baby to school for his first day of JK. He went in really well, and with relief I walked away from the school. I had really thought he would give me a hard time over it but other than a little shyness he seemed to take it all in just fine. I on the other hand, got about 5 houses down the street when it hit me fully. My three year old, is in full day JK! How did that happen? When do they go from being tiny little creatures who need you for everything, into little people with opinions, and voices, kids who can dress themselves and feed themselves and not need you every second of the every day? Little people who can be left in a building in the downtown core, without their Mummy but rather strangers, and not cry and scream and pitch a fit?

Now, for those of you who think I am a total mess over this, let me assure you... I am REALLY loving the time to myself. The house is cleaner this week, I've had a lot of great work outs, and I am finally getting some actual work done. This is all good, and I don't take one second of the time for granted (not yet at least). However, around 2:00 every day I start checking the clock, wondering if it's time yet for me to go pick him up; missing the tug on my leg, the sound of his voice telling me some inane thing that he feels the need to share with me or the feel of his arms when he is needing a snuggle.

Life is suck a paradigm of desires, you always want something different from what you have, never satisfied with the here and now. You are pregnant and you can't wait to hold you child, you have the baby and you can't wait until they are sleeping through the night, they are sleeping through then night but can't feed themselves, they can feed themselves but they drive you nuts because they are always around you feet and you can't get anything done... and then BAM! Before you know what's happened... they are in school and you are alone during the day wishing you were awake in the night, holding them, feeding them and singing them a lullaby again. You look at their dirty clothes and skin when they come home from a day of school and you remember how it was only yesterday that you had a lavender scented infant in your arms, his dark eye lashes resting quietly on his cheeks, his thumb planted firmly in his mouth and his ear pressed up safely next to your heart. Everyone always says 'enjoy it, it goes so fast' and you hear it, you want to do take their advice and you do your best to be there in the moment, but life moves quickly sometimes and you find it hard to stand still, savor this moment, this hug, this kiss, this laughter, this new step into manhood.

I don't know how my new born baby boys turned into school boys... it's happened overnight and it happened in a million tiny moments, a million touches, a million kisses and that is something I will cherish for all my days. I can't stop the hands of time from changing, I can't stop my babies from growing up, nor can I clip their wings, as much as I hate the thought of them needing me less I know that the less they need me the better I am doing at my job. Today, is a day for me to collect a few hundred more tiny moments, kisses, touches so that tomorrow, when they are grown I can remember all of them.

September 6, 2013

Proof of Life


Summer is at it's close, the months of endless days have turned into full days of school for both the boys and for the first time in a long time I have both time and internet (finally!) to begin blogging again. It's been a long and at the same time very short summer. June and July seemed to drag along and then all of a sudden it was August and now here we are in September a full five weeks post op. It's amazing. 

On August 28th Josh went for his one month post op ECHO. The results were ASTOUNDING! The doctor smiled and said that the regurgitation is so mild that it's almost not worth mentioning, and the valves are not leaking. Just a month and a half ago Josh couldn't walk to the park without needing rest, last Monday we spent the entire day at the Island where Josh walked, ran, played with his brother & friends; not once did he ask to be carried, not once did he say he needed a rest, not once did I observe him and feel the quaking fear that comes with knowing that his heart is failing. He's eating more than ever before, and now, just a few days into his new school he's a happy energetic little boy. 


Scars tell of a battle fought and won. They emerge in a red, then white, often jagged line across the wounded area. They shout out to those who see it “Look what I have been through!” and “Look what I survived!” I remember the first time Josh went into surgery and right before they took him in I traced my finger down his still perfect white chest and I ached that it would never be perfect again. I mourned that loss long before we went into the OR that day. No longer would people look at Josh and say ‘He looks so perfect’, instead they would see the line, or zipper as it’s been named in the CHD world. That feeling when I look at the scar has changed over the years, gone is the mourning, the sorrow and the fear that someone will stare, that feeling has been replaced now with one of pride because it screams ‘I survived!’ at me with every glance of his still beautiful skin. I hope to teach him to take pride in his battle scars; I hope that one day they will embody for him all that they do for me.

I was in a plastic surgeons office a few weeks ago, I have to have a biopsy done (nothing crazy serious) and so I met to him to discuss the surgery. As I sat in the office I noticed all the posters for creams that promise a miracle cure to making scars invisible, the doctor himself talked to me about what my scar will look like, and promised to make it look good. I almost laughed because it was so in keeping with my thoughts of late. I remember after my first C-section I was so upset about the scar, it bothered me horribly but after my second C-section I realized that it was proof of life. Proof that my boys came from my body, that I carried them, nurtured them and gave them life. I have never thought too much of scars, they were something that happened over the course of a life, but lately I have noticed that scars almost always come with a negative connotation. The bad guys in the films almost always have scars, beauty is rarely seen in them and yet I look at Josh and I don’t see an ugly red/white line. I see the symbols it represents, the bravery, the fight, the healing heart beneath. When he looks at the scar, the same one that has often caused him shame; he now declares ‘I have no leaks, see!’ and pulls up his shirt for you to see.

I look at Joshua’s marred and yet beautiful chest and I see the same thing I see when I look at my C-section scar. Proof of life.