March 5, 2015
Yesterday the report was not so great, I think Josh has finally left our cardiologist stymied. No kidding... he is constantly doing things that aren't normal! I wish he would be less extraordinary for a little while.
On to the report; his pulmonary valve has seen very little change (a really really good thing!) However, his tricuspid valve which at the last ECHO was showing a sever leak has now gotten so bad that she said 'It can't get any worse' (basically the valve is there, but it is not functioning as a valve at all, so he might as well not have a valve). The right side of his heart has continued to grow and at this rate we run the risk of further complications which would be new problems for him. He is asymptomatic right now (another good thing) but the question remains, how long can his heart continue to grow at this rate? The other big question of course is why that valve is rejecting so quickly and so horribly. Once upon a time it was the pulmonary valve that rejected (repeatedly), but now the pulmonary is holding but the tricuspid is rejecting... it just makes no sense. (to anyone).
There are valves for the pulmonary that can be replaced in the catheterization lab, but there have not been many (that our doctor knows of) kids who have needed the Tvalve replaced like this so we don't know if it can be done without open heart. Our cardiologist has said she will speak with the cath. surgeon to find out how possible it might be... that is something you can pray for... if we have to do something I would prefer to keep his chest closed.
So for now, we wait... we wait for answers from the Cath surgeon, we wait to see the rate that his heart is growing and the trajectory that he is on. We wait for symptoms of heart failure... we wait; and the waiting sucks.
In other news, Josh's dental surgery is NOT neccesary. Not yet anyway, he will most likely need it when he's older but we can hold off for a while on that which is really great.
I also had Kaleb's allergy appointment today and we had some good news there too... we can introduce pecans, walnuts, brazil nuts and hazelnuts... (though I admit I am terrified to do). I did however buy myself some turtles loaded with pecans to treat myself after this week... I didn't share them with him, but I kissed him when I finished them, and I did it without fear. That's a good feeling.
It has been a tough few months, this week in particular was hard, but it has been such a comfort to hear from so many of you, your encouragements and offers of prayer mean so much. Thank you.
March 2, 2015
Have you ever thought you had your kids figured out? The youngest is like me, the oldest takes after his Dad... you know them best right? So obviously you of all people should know who they are, what they like, what their personalities are and what makes them tick...
Yeah... I thought I had it all sorted out. The Kaper... he takes after me in many ways and Josh tends to favour his Dad... except that I was wrong in many ways. Really wrong!
A few weeks ago Kaleb had to come home from church early due to asthma and allergies, Josh spent the afternoon with his cousin and Grandparents. Between his brother talking to him all morning, then all the kids in church and then an afternoon with his extroverted and talkative cousin he was totally done in. I put the boys to bed (they shared a room) and within minutes Josh was back downstairs announcing he just couldn't take it anymore.. 'Everyone talks! Too much talking! I need quiet! I need my own room!' It was comical really because he was so emphatic about it and as an extrovert I just don't get what the issue is. I would love to just be around people all day and all night. I talked him off the ledge and got him back into bed that night but on reflection I knew that he was right, it was time to sort out a space for him to call his own.
The next Kaleb was home from school because of his asthma so while he sat quietly in my office I went about clearing out space in there for Tim to move his office into mine and making Tim's office a bed room for Josh. It took all day but when Josh came home he had the surprise of his life; his very own room! He was beyond thrilled (he literally smiled for a week after!)
Over the following few days I looked into each of the boys rooms every day, and I began to see something of a trend emerging. I had always assumed that since Kaleb is more like me, and Josh like his Dad, that it would make sense that Kaleb would be the messy unorganized one and Josh the neat and sorted one. I was wrong. As the days passed I noticed that every morning Kaleb attempted to make his bed, he put his dirty clothes in the hamper and his toys were always put back into the box provided. Josh however, had clothes strewn from end of the room to the other, his toys deposited whereever he had last been playing with them. His bed was not made, not even once. Josh would come home from school and head to his room for some much needed quiet time after school and Kaleb often headed to the playroom downstairs.. the playroom had always been a mess, always! However, with Josh not down there I began to notice how neat Kaleb was keeping it. He would play with something and then when finished he would return it to it's rightful home. The more I noticed the more there seemed to be to notice. At school I watched as Kaleb neatly put his things away and became unsorted when the box for their lunch boxes wasn't in it's rightful place, when I joked about it with the teacher she said 'oh that's Kaleb, everything in it's place and keeping things tidy'. Even this teacher knew my child better than I did!
I had often forced Kaleb to clean the mess in the playroom believing it to be his mess, and there was always a battle about it. However, once I realized that it was actually usually Josh's mess down there I began to get Josh to clean his own mess up. Two things happened; Kaleb started to feel understood, and his attitude began to shift. The meltdowns have trickled off and since he now has his spaces sorted he is more at ease with himself and his environment. Josh, having been getting away with a lot all these years had actually been building an identity around being the 'good' kid, and as he was found out, exposed shall we say, he began to unravel at the seams. Kaleb also began to form a new identity, the one of the neat child and he took great joy in naming his brother as the messy one. As these two dynamics began to play out Tim and I began to talk to the boys about where they should build their identity... it has been such an exciting period of growth for all us.
Teaching the boys that they are not loved for how they behave, or the state in which they keep their room but rather for who they are to us. Our children, dearly loved for no other reason than they are our children. End of story. Nothing can separate that love from them, they are our sons and no matter what they do, say, think, become; they remain and will always remain, loved. As we watch them struggle within this shifting time in our family dynamics I have found myself considering where I have placed my identity. Have I put my worth in something tangible or have I placed my value, my identity in being a child of God, loved for being nothing more than His? As I said, it's been an interesting shift in our home, on all fronts we are all learning through the process.
March 1, 2015
I once found myself on the top of a mountain in the Austrian alps with a bum knee. I was sitting there contemplating the hours it took me to reach the top and the agony that awaited me on the climb back down that mountain. I sat in contemplation for a long time, gathering strength, hoping for a relief from the pain that splintered through my knee in fits and bursts. When I finally gathered up all the courage I could muster I stood, and slowly, step by step, painful crunch by painful crunch I made my trek down.
They say that the climb is the hard part, you are tired, you are out of breath and your thighs burn the longer you climb; there is a reward waiting for you though and once at the top, viewing the valley below you it is easy to forget the exhaustion you felt only moments before. However, the decent... the decent can be wreak havoc on your already tired and sore body; the jolting down word steps, the impact on the legs, the post awesome view blues can be wearing on your body and soul. That day was like that for me, each step sent a jolt of pain through my knee that screamed and begged me to stop. I could very easily have just stayed put. It was summer after all, there was no risk of dying from exposure, and it was Austria... no bears or cougars or other scary animals lurking around waiting to make me their supper. I came upon a meadow at one point and sat in a field of wildflowers, the sun warming my back, the breeze cooling my sweaty brow. I sat there and knew that if not for the fact that people would worry about me I could very easily become one with that meadow. The urge to stay in that spot was strong, to this day when I think of that meadow I can feel the sunshine, smell the wild flowers and feel the cool breeze on my cheeks. I just need to close my eyes and I am back in that spot. For all the pain, the fear of moving forward, that place still brings me peace.
Sometimes I feel that I am in that decent again, fear, worry, pain... with each step of that decent I can feel it clawing its way up my throat and I long to stop and find a field of wild flowers to escape in. When I find such a place, where life stops and the peace sets in, it takes every ounce of courage I have remaining to get up and move further down that mountain.
A lot has happened this last few months, it seems that every aspect of our lives is in turmoil. Not one area of our lives has been left untouched by something or someone meant to cause anxiety and stress. We have discovered that Joshua needs eye surgery, nothing major by comparison to his life story, but a worry all the same, Kaleb has been suffering this month more than any other from asthma that won't ease; we have had stress thrown at us from every possible angle and I see no end in sight for the moment.
Then this morning we sang a song in church, and as I sat there singing 'I need you, oh I need you, every hour I need you, you are my one defence, my righteousness , oh Lord how I need you...' I found that meadow... for a moment I felt that peace that can only come when you give it all up and admit you can't do this alone. When the song ended, when I was forced to move I was afraid, I didn't want to make the step out of that peaceful place I had found myself... but life is fluid, we need to keep moving.
That day on the mountain, as I made my final downward steps before reaching flat land I remember thanking God for getting me there, for being the arm that I could lean on to ease the pain. Today, as I moved through the rest of my day I found myself saying the same prayer...
On Wednesday we face ECHO day... for those new to this blog that means that we go back to the cardiac clinic for more tests to show us the state of Joshua's heart. Every time I feel anxious, every time, no matter how many times we have done this in the past I fee the familiar clawing at my throat, I have the same nightmares, the same tremors run down my spine.
On Thursday we head to the doctor with Kaleb to investigate further Kalebs allergies and look at some options for therapy for him and again on Thursday Josh sees a dentist because as luck would have it, the kid has a third adult tooth up there and it needs to be surgically removed... it's actually laughable... if it wasn't so... well, sucky for lack of a better word.
Oh I need you, every hour I need you, my one defense... oh Lord how I need you.
February 8, 2015
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
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.
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' ;)
January 28, 2015
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
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;