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."

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.

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.

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!

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

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

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".