February 8, 2015

Redemption of the pain



A few weeks ago Tim gave a sermon at Little T and in it he said that in biblical times when they spoke of the heart they didn't just mean love, they meant that it was the core of who you are, it was the center of you and what makes you who you are. I look at Josh and I see that, I see that his heart has defined him, his strength, his interests, his dreams and sometimes his nightmares have all been shaped by his physical heart and the struggles he has faced as a result of it. What I also see, and what I think they meant more by the terminology of the day is his heart, the spiritual side of himself that feels joy, love, hope and compassion. A week or so ago we visited a sick friend in the hospital, Josh was with us because we had just come from an appointment at Sick Kids. He stood by our friends bed and looked at his 'ouchie' (he had just had surgery) and you could see in his eyes understanding. When we were leaving Tim asked our friend if we could pray for him and before Tim could begin Josh stood up beside our friend and clasped his hands together and prayed out loud for him. His empathy, his compassion, his heart, has been shaped by the pain and suffering that he has himself gone through. He understands what it is like to lie helpless and in pain post surgery, and he knows the comfort that comes when someone stands beside you and offers up a simple prayer.

I don't think I will ever understand suffering, not on this side of heaven at least, but sometimes, on rare moments like that I catch a glimpse of how God can use the suffering to spread love and compassion. Sometimes I see for myself what Josh's life can do for others and when I do there is nothing I can do but stand back at watch with wonder at how God can turn things around

When our journey of the heart began I asked God endlessly 'why'? I have sought answers, I have asked for the reason, I have searched for the purpose... I don't think I will ever know, we are broken, all of us, we all have fallen short, we all have suffering in our lives, we all have known, do know and will know pain. It is a given, it is the only guarantee in life (aside from death). Yet, sometimes He allows us to see the way that he can redeem that suffering, all that pain, and use it to help others.

January 30, 2015

7 years.

This morning when I woke up I could hear Josh talking to his brother, I wasn't coherent enough to really know what they conversation was about but they were chatting, not fighting; an important distinction these days.  As I lay there trying to get up the courage to get out of bed and face the day I couldn't help but be transported back 7 years. 7 Years ago today I went to the doctor for an ultrasound and we booked an induction date for three weeks from then. I remember being so scared, having a date made everything that much more real. Tim and I talked in the car ride home and I remember both of us saying we weren't sure we were ready yet.

Less than 24 hours after that appointment we were in the OR having an emergency C-section and meeting Josh for the first time. As they wheeled me into the OR Tim and I were praying that he'd make it, we didn't care about anything else, we just wanted him to live.

Just a few years later he was turning four and as I said goodnight to him on the eve of his birth my only prayer for him was that he would talk to me. I didn't care what he said, I just wanted him to speak.

Today is the eve of his 7th birthday and I look back and see all those answered prayers wrapped up in the gift of this amazing little boy, who lives life to the fullest, who laughs, who brings joy, whose love of humour brings joy to our home and laughter to our lives, who is braver & stronger than most of the people I know. He did live, and his words I love you each night are beautiful reminders to the faithfulness that God has shown us through out this journey. Just this week he stood beside his friends bedside after his friends surgery and he bowed his head, clasped his hands and prayed for him... then laughed at me because I almost cried... this is Josh. Fully in the moment and always seeing humour in life.

Watching Josh light up this morning because 'It's pyjama day'! Seeing his smile when he describes 'the perfect cake' (which I have to bake - scared) is a soothing balm. I have often heard people say 'I don't know how you do it?'... my reply it seems is this:

I wouldn't want to not do it, this child is who he is because of where he's been. I am who I am, because of where Josh has taken me. Our story is not a sad story, it's a story of overcoming, it's a story of joy and miracles, hope and love. There is no greater joy in my life than recognizing the gifts God has given me, and the top three are Tim, Josh and Kaper. I wouldn't choose another way, I wouldn't pick another kid, I am sitting front row to a thousand miracles!

Since I am fully aware of what tomorrow (his actual birthday) is going to look like, I decided to write his birthday post today, on the eve of.

Josh,

One day when you look back on your life I hope that you too will see the many ways that you have touched our lives, and the lives of those you love. My prayer as you grow is that we continue to see the miracles and healing comes your way. I pray that you continue to grow strong in your faith, that you attain each dream you set for yourself. Daddy and I believe in you and know that you have what it takes to do anything you want to do (even be a scientist who makes hamburgers walk). We are so proud of who you are, and all the things you can do. We love you,'all the way to space' ;)

Mummy xoxox

January 28, 2015

Hope

Of approximately 96,000 adult CHD patients in Canada, only 21,879 (23%) are being followed in one of the 15 centres. The other 77% are considered "lost to follow-up

I have told you about this exciting new phase in my life, the stage in the game when I put my words into actions and begin to make some change. Before Christmas I announced the birth of Joshua's Hope, a charitable organization that will focus on the future of Cardiac Care, for kids and adults alike.

Money raised by Joshua's Hope will go directly to the Labatt Family Heart Center at Sick Kids in Toronto. There it will be used for the highest priority needs for the center, with a focus as I said on the future care of these kids.

On Monday our logo was finalized by Andrew Haughton, my amazingly talented brother in law. Tuesday and Wednesday I attempted my first ever go at a website... and now the fun begins!!

I am so thankful to all of you who have been such an amazing team of supporters as I have gathered information and experience through out this process, without you I wouldn't be here and I am fully aware of that. I deeply appreciate all of you. Thank you.

In a few days time we are celebrating Joshua's 7th birthday... that alone is a miracle. It seems fitting that all of this comes together in time for that big celebration. 7 years of joy and laughter, tears and heart ache, fear and worries, but above all those are love and hope. Hope. Nothing can happen, nothing can change without Hope.

click below to check out the new website!

January 13, 2015

Life does...



January is almost half over... I don't even know how that happened so quickly. On Sunday I realized that Josh's birth is literally around the corner! I remember when I was a kid and the years seemed to stretch out before me and days passed like eternity. Now I feel like I am in warp speed... Yesterday I was walking the dog passed a car (an empty car, on a seemingly empty street) when the car suddenly started by itself; I actually caught myself looking for David Hasselhoff! That was when it hit me... I am quickly getting older.( and if you know what I am referencing then you too are getting older my friends) This new year marks the end of my thirties, come May I will enter a whole new decade of life, a new phase, a new chapter and I do so with so much excitement! My twenties were not so much fun, but my thirties were the best years of my life and it makes me look forward with anticipation to my forties.

I have so much to be thankful for. Looking back I can how God used the pain of my life to shape me, to change me and to bring me into this new person who is so ready to get old and face new challenges. It gets busy, life does, and it has challenges, life does; but when I can see how the things I have learned along the way can bless others then I am once again just so grateful. To know that a purpose came from the pain brings peace, and sometimes that has to be enough.

I am late in wishing all my readers a Happy New Year, but I do, I wish you all the joy and peace that comes with life, I wish you hope, strength, endurance, growth and laughter, even tears that move you to healing.

May God go with you into 2015;
Laurie

December 24, 2014

A single light



It is Christmas eve. I love this particular holiday. This year we gifted the whole family with a new puppy named Max. He's a joy to have in the house but he is a puppy and he can be rambunctious; lots of walks are needed to keep him at a good level of sane while in the house. My shoes demand that he be too tired to chew on them! This morning I set off for a walk with him, the streets were fairly quiet, it was mild out and it was still dark. I passed several people on my walk and a funny thing began to happen. In an age when 'Merry Christmas' has been replaced by 'Happy Holidays' I was pleasantly surprised when a young man passed me and wished me a Merry Christmas, a few more steps and an older woman walking her dog also wished me a Merry Christmas, then it was the older homeless man on the corner near Queen, then the Muslim woman with her son, and the Muslim man walking his elderly parent into the grocery store. In fact, not once, did I hear Happy Holidays, and I was walking through a very Muslim area of town. Each person I passed (except for a few who seemed to be rushing to get somewhere) smiled at me as I passed and wished me a Merry Christmas. It was so great! Their smiles, their Christmas greetings gave me the spirit to move down the street offering the same smiles, the same greetings.

Tonight, we went to the service at the church where the children put on a very cute portrayal of the Christmas story, it was mayhem. Kids dressed as sheep, and several animals that I couldn't identify... even an elephant, angels, shepherds, scribes,  kings, and of course Mary and Joseph. In the madness something came home to me... this is exactly what Christmas must have been like back in the first century. Not the trees and gifts or things like wishing people the latest politically correct thing... but the madness, the mayhem. The busyness that saw a pregnant woman needing to give birth in a barn, the animals, the noise, the smells. At the end of the service Tim took the advent candle and he lit my candle, I in turn lit the boys candles and we turned and lit the candles of the boys behind us... the light spread from row to row until the entire church was lit; all from a single light.

I think of the beautiful light of the star that night, how the light of the world was born in that barn, and that single light has passed from person to person and lights the world. It may not always seem bright, in fact in recent days with the threat of terrorists and the fear of the politically correct it seems that it's darker than ever; but that light is still lit. It is alive in me, it's alive in many people I know and as we move into the new year my prayer for you is that you pass your light along, share it with the person sitting behind you so that we light the world.

Merry Christmas my friends. Thank you for sharing in this wonderful year with our family!


December 16, 2014

Joshua's Hope


For the last three years I have been feeling led to start a foundation to aid in the fight for better adult care of Congenital Heart Survivors; I say 'led' because I felt that God was asking me to do it... and my answer was always 'No, I can't'. I am not sure if you know what it involves (even I don't know the extent of it...) but it takes a lot of 'seed' money and lawyers and buerocracy that I know nothing about. It was/is overwhelming to me so I continued to shut the idea down. Money alone stops me, forget all that red tape stuff. So I have moved into the 'mother volunteer' role and it's been serving me well, serving the agencies well, and hopefully one day serving Josh well. However, this past year the answers have become increasingly clear. I want to do more than be a bystander to Joshua's future; I am simply not satisfied with waiting for others to get the job done. I want to be at ground zero, on the front line; I want to be a part of making it happen. I have learned a lot about the health care system, I have discovered the amazing things that are happening, and the awesome things that are about to happen. I am learning daily about the specialty of Congenital Heart Defects, and how incredibly hard they are to treat. I am also learning about all the problems, the setbacks, the stumbling blocks that face Josh and his peers in the years to come, if nothing gets accomplished now to change that for them.

My dream, shared by some key people is to have a Heart Institute within the walls of Sick Kids that treats all Congenital Heart Defect patients. Pre-natal, pediatrics, and adults alike. All patients, one model of care, one building. It would be a first, it would be a ground breaking project and it would forever change the face of medicine, particularly in this field.

The first steps are baby steps, reaching out to parents of CHD kids, sharing with them the key problems that face our kids, talking with our government officials, asking tough questions of the government and boards of the hospitals. It isn't going to happen over night, sadly it may not happen in my lifetime without a LOT of support from key people... people like you, people who have read about Josh's story and been touched by it.

A few weeks ago I once again entertained the idea of starting a foundation, with the key mandate being to aid in this endeavour. Once again the same issues arose... but then I had a thought, God inspired if you ask me. I could start up a third party organization under the umbrella of the Sick Kids foundation. The name even came to me on the spot... Joshua's Hope. I contacted my rep at Sick Kids and asked her about it and received a green light... and before you know it, here we are!

Joshua's Hope will raise awareness about the growing issues surrounding adult care for kids like Josh, and the money we raise will go directly to the highest priority needs of the Labatt Family Heart Center at Sick Kids Hospital, my aim is to help fund the little projects that will lead to the larger project of this Heart Institute. This is a huge undertaking, it will require skills that I didn't know I had but will have to come up with, it will require the help of some good volunteers, and yet, I know that it can happen.

I haven't put together all the little bits and bobs just yet, with Christmas on the horizon I have decided to wait until the new year to think about websites and things of that nature but I urge you to visit our donation page on the Sick Kids foundation website (Joshua's Hope). I also ask you to share this with your social media contacts so that we can start getting the word out. Your help in this is both greatly appreciated and SO necessary! I really can't do this without you.

Hope for their lifetime starts today,
L