A deep dive into the unknowns of motherhood and faith. Now also a book!
May 30, 2017
Into battle
In true warrior fashion, Josh is going into battle today, a battle for understanding from his classmates. He had to write a poem a few weeks ago called 'I wish' and in the verses he said that he wished the kids would understand about his heart and what that means for him as he plays and tries to keep up. A good friend of ours who is also a teacher offered to go with him to do a presentation on his heart and stroke, what happened to him but also how that affects his daily life. Today he will stand, vulnerable in front of his class and talk about these things in a hope to gain empathy from his classmates.
I could not be more proud.
I have had a lot of people telling me to pull him from school, suggesting that he should have a break. Here is my thinking on this... please bare with me.
Life sucks. Kids can be mean. The playground is a harsh terrain where kids find out what they are made of and where they learn to overcome. Josh is and has always been a kid who overcomes. What he is learning through this painful process are resilience and fortitude. He's also learning compassion, forgiveness, hope, and problem-solving.
Due to Josh's stroke, he has very poor problem-solving skills but during this process, he managed on his own to figure out that maybe if the kids understood where he was coming from they would have more empathy. For him to figure this out on his own, and to work towards doing that is no small feat for him. This morning we talked about this and I told him how proud I was of him for solving the problem and he said 'Im solving, it's not solved. We don't know yet if it will work.' He is right of course, and now is the time to pray that it works, that at least one or two kids have their eyes and hearts opened to his situation and find it within themselves to be more patient, more loving, more open to being a friend to him. This is my prayer.
All that being said, the past few days as I have struggled to understand this reality that Josh is now facing I have become aware of a few things. He isn't alone. God is with him on the playground, his brain is healing more and more every day, and my kid is one of the toughest, most resilient kids I have ever met. A friend wrote to me and said this: God needs soldiers and he is forming Josh right now. Josh is is in boot camp, the hardest part of training. He has brought your little man into an intimate relationship with him that is beyond what we can fathom, you've seen glimpses of this, let that be your comfort. Another friend wrote: He didn't bring him this far to leave him there. These words have offered me a great amount of comfort and hope for our little man as he does battle with this depression. I don't know what today's outcome will be, but I know that no matter what happens I am so incredibly proud of him for being willing to stand in front of kids who haven't been very kind and to share some of his most vulnerable feelings. It is kids like him that change the world.
We were never promised an easy life, I want God to have mercy on Josh, I want things to be easier for him, I want to see his joyful self back but I am also raising a child who is not my own but God's and God loves him so much more than I do (as impossible as that seems to be); he knows the big picture and he is even now forming Josh in the man he needs to be for the future he has planned for him. Through all of this, I have to hold onto the promises God has given me, that he will do (and has already done) the impossible for Josh.
I could go through a list of 'He will never's' that doctors and therapists have given me over the years but I prefer to list my own "He never list'
He never stops trying
He never lets someone tell him what he can't do
He never stands down in the face of adversity
He never lets fear stand in his way
He never stops trying to be the best he can be
He never quits
There is more to this kid than most will ever know, more to him than even I know and that I am blessed to be his mom is something that still leaves me awed.
So please, say some prayers today as Josh heads into this new battle with our friend. Pray that the kids hear him, understand him, have mercy in their hearts for him, and that if nothing else they respect him for doing what he is doing, such an incredibly courageous and brave stand he's making.
May 26, 2017
when the heart breaks it's not always physical
For the last six weeks, we have noticed some significant changes in Josh. He has become moody, angry, sad, and extremely tired. We have looked into all kinds of reasons, had many talks with him and yet it persists. His largest complaint is being too tired to keep up with the other kids at school, causing them to not want to play with him and leaving him to be alone through the recess times. It is enough to break your heart. It came to a head this week and I reached out to our neurology team to see if maybe the medicine he is on would cause the anger and moodiness that we are seeing, but they disagreed and told me to contact his cardiologist. So, on Wednesday morning I wrote an email to our cardio and explained what was going on. She called us in immediately (immediately in the hospital world was actually today at 8 am). My heart sunk, I won't lie. I was really looking forward to not seeing her for a year. However, that is life. Everything must be looked at through the lens of 'is his heart okay?'
So, today we went for the ECHO and EEG. After the tests, they paged the doctor and she came right over. Her news was both good and a bit sad. There has been no physical change in Josh's heart since his last ECHO. (GREAT NEWS!) Apparently, she had read my email and expected the ECHO to show that one of his two faulty valves was no longer functioning. So yes, this is good news!
Then we talked at length about how many kids with a heart like Josh's come to an age where they start to become aware of their body and the limitations that their body has. With Josh being the competitive type it would be compounded for him. As he begins to get excluded from things he enjoys because of his limitations (by the other kids, not by us or himself per say) she believes he is dealing with a form of depression, causing the anger, the sadness, the tiredness, the frustrations and explosions we are seeing. She thinks this is a mental health issue and not a physical one per say. This is the sad part of the meeting today. I am thrilled that his heart is okay for now, but I am so deeply saddened that he is struggling right. We have a meeting with a social work clinic to get him talking with someone about his feelings about his condition and his frustrations surrounding that. She also suggested a psychologist.
I find myself relieved, but heartbroken at the same time. I hate seeing him suffer in any capacity, both physically and mentally. I just want to keep him home with me in my arms where I know he is loved and protected. Leaving him at the school, watching him trying to play basketball with kids who wouldn't pass the ball to him, kids who kept fighting over who 'had to take Josh on their team, watching the sadness on his face... if I am honest it made me want to grab him and take him home. Teaching him to face his limitations, to cope socially, to deal with the hurt feelings is harder than even watching him face the pain of open heart because at least with the physical pain you know that there is hydromorphone and that the pain will end.
L
May 16, 2017
I wasn't crazy
I have two amazing kids. I love them. They bring joy and laughter to our home.
That being said though; it wasn't always so simple for me to say that. I, like many women, struggled with postpartum depression. I had two very tough pregnancies, with Josh I was living with a lot of unknowns given his cardiac condition. We were constantly being told he wouldn't live. When he was born (and when he lived) I was thrilled, terrified, sad, worried, angry, confused, emotional... I was a mess; but then, that's normal when your kid is so sick right? I didn't think much about it, I look back and see that I suffered from post-traumatic stress, I hit almost all the markers for it but I didn't know it then.
When I was pregnant with Kaleb I had pre-eclampsia and my chances of a normal pregnancy went out the window. I was on bed rest and really sick and finally one night they decided my blood pressure was just too high and they had to take him out. Two pregnancies, two unplanned and unwanted C-sections, two times I felt I had failed at being a Mom before even holding them. One nurse told me (while pregnant with Josh) that I had an 'unfriendly' womb; Kaleb's situation only confirmed this lie... I felt like the worst kind of failure. I was sad, I blamed the pregnancy blues, I blamed hormones, I blamed sleeplessness. I was angry, scared, worried, and had lost all patience with both boys, two boys that I loved more than anything, two boys who in one breath changed my world for the better. I knew what was expected of me, to be all glowy and happy that I had these amazing kids, to be 'together' and over the moon in love with them. I was; I just didn't feel like that all the time. Each day would be different, some days I didn't want to leave my bed, and when one cried I would want to scream, some days all I wanted to do was hold them and kiss their foreheads and tell them all the dreams I had for them. Some days one would puke and I would feel so angry, other days one would puke and I would cry, or sometimes they would puke and I would giggle about how they timed it so perfectly (right after I would put them in a clean outfit). No day was the same, I was an emotional mess. It took a toll on me and finally, Tim asked me to see someone. I thought he was crazy, I felt like a failure all over again. I was the worst kind of Mom. I went to the doctor though, I sought help and it changed me. Talking about it wasn't as easy.
This is postpartum. It's not pretty, it's not all glowy joy and rose buds. It can be messy, it can be sad and scary and lonely.
My boys are now 7 and 9 and in that time I have come to realize that I was normal, that many women struggle with postpartum and there is no 'right way' of having a baby (natural vs C-section; breastfeeding vs bottle). I wasn't a failure, I was doing the best I could do given the situation. I wasn't weak, I wasn't a bad mother, I wasn't weird or crazy. I was sick, I was sad, I was scared and until I started talking about it I was alone.
November 26, 2016
Be advent.
As unreal as it seems we have once again come to that time of year when we need to sit back, watch, wait, celebrate, and allow the good news of Christmas and the coming King to wash over us, renew us; in some cases to breathe life back into us.
It has been a hard year, the world seems to have gone a bit mad, or at least more mad than usual. Hate crimes and terror attacks, racism, fear, bullying, extreme weather, global catastrophes, deaths and suffering; it’s everywhere we turn. If you watch the news, read a newspaper, use any form of social media or in some cases, just look across the street, or hallway at school. Fear, hate, anger and ignorance have filled the air worldwide with a stench that permeates into our everyday lives and souls. It is ripe, like a disease it spreads and we can smell it on more and more people, ourselves included. It is so easy, to get sucked into the abyss of fear and anxiety, the very things that create the stink of hate and bigotry.
… and yet; this is a season of hope, and in hope there is no room for fear. This is a season of love and where is there love hate can not win. This is a season of awaiting for our King, a King who will unite us, a King who will save us, a king who comes to us all, with no political agenda, only to save us by grace alone; only to love us. A king who has already won us victory with his blood.
As we reach into this season, as we celebrate the joy, the peace, the light, the love, the hope. My prayer for us is that we be the joy; the joy to our neighbour who is alone or grieving. Be the joy for the lonely, the bright spot in their day, the smile of a stranger, the kind word and gentle touch, the compassionate hand that holds them up when they feel they are falling.
Be the peace, when you see the fear stirring up hate, when the verbal attacks online are full of offence. When the group of kids are picking on child of a different race, when the teen is so filled with anxiety that they can’t breathe, when it feels like everything around you is spinning and there is no safe place, reach out, be a voice of reason, be the calm and soothing arms that offer a safe place, be the person who sits beside someone and just counts to ten for them; be the peace.
Be the light, the light that lets the world see the good that still exists, the light that drowns out the darkness. When it feels like the clouds will forever storm, that there is only pain, suffering, hopelessness and despair and the sun is eternally eclipsed by the moon. Be the light, offer to guide, lead. Be the light that guides to the everlasting light where there can be no more darkness.
Be the love, the love that opens itself despite the risk, the love that moves people to change.The love that turns the other cheek, love that forgives, even when it’s hard. The love that opens itself up and bears the pain of another so that they can know they are not alone, the love that sacrifices our ourselves to give, the love that serves, the love that hurts and the love that drives away fear, hopelessness, despair, hate. The love that brings joy, and unity; compassion, the love that heals.
Be the hope, with hope comes faith, with hope comes healing, with hope fear subsides, with hope the anger that once burned starts to doubt. Hope drives out despair and allows peace, joy, love, light and faith to flourish in its glow.
In this hurting and broken city, country, world, we can shine brighter because it’s so dark. This is an opportunity to be more, to love more, to be the hands and feet of our Saviour, while we wait for his return. Advent is a season, but it’s not just the 4 Sundays prior to Christmas, it is the entire wait, every single day between now and His return; its not dependent on snow, Christmas lights, Santa, wreaths, fireplaces, hot chocolate, carols. It is us. It is now. It is every single day between this moment and the return of our King.
L
November 22, 2016
Happy Birthday (a day early) to the man who stole and kept my heart!
Almost 10 years ago to the date (Dec. 8th 2006) I was asked by the most amazing man I have ever met to join my life to his and be his wife. I loved him, I said yes and I haven't doubted or regretted that decision; but I have to be honest, when I think back on the maturity of that love I laugh. I had no idea what loving this man, what being his partner in life would look like, I had no way of knowing that what I felt for him then (in all it's hugeness) would one day pale by comparison to the love that would grow between us over time. We have weathered a few storms together and come out laughing and when I look at him I can't imagine a life without him in it. He's more than a husband, he's more than a friend, he is the other half of me. He is family through and through. I could sit here and list of the amazing things he does, the person he is, the value he adds to my life but then this post would never end (and I actually have other things to do today). I will say this, Tim is someone I respect, he's someone I seek counsel from, he's someone I can laugh with, someone I feel safe fighting with, he is a companion I enjoy spending time with, he's a soft shoulder, strength in times of stress and he loves so beautifully and humbly. I am never in question of the blessing I have found in him.
Tomorrow he celebrates his 40th birthday, and I can't let the day go by without celebrating him and saying how thankful I am that he was born. There is no other person in the world I would rather have to spend my life with than this incredible man!
Happy Birthday love, thank you for loving me.
L
November 20, 2016
It is us.
Tim and I were away for a week to the Dominican Republic for our annual 'just us' holiday. After the past number of months where anger and fear and hate made way for the deaths of many in the summer shootings, the mass shootings, the Nice tragedy, Paris, Brexit, the hate crimes, bigotry, the police and people at what often feels like war, and of course the outcome of the US election results, I have to admit that this year, more than most I was excited to be leaving. No newspapers, no news, no social media... sounded like bliss to me!
I of course hopped on that plane with dreams of tropical sand between my toes, hot sun on my shoulders, warm breezes in my hair, rest for my soul. What I was met with was not what I anticipated, but it was what I really needed. It was a wake up call.
We arrived to rain... rain that only broke for a brief time each day, we had one partly sunny day but other than that, it rained. Now, rain here is one thing but rain there is something entirely different. It was a downpour, and before we knew it the whole area was flooded. The flood waters grew, receded, grew again. Every morning we heard stories from staff and other guests about homes lost, a school, mudslides, overflowing rivers, roads that had become too waterlogged to drive on. Yet, we were always met with smiling faces, people who came early each morning to work after being up all night trying to save their families' home, tired, but content. One of our waitresses was pregnant, she came to work with a cheerful smile and yet she had spent the entire night awake trying to keep their home secure, and her work clothes clean so that she wouldn't miss a day of work and much needed money. We saw people coming together to rebuild. We found out that the president had come to help the clean up efforts. There were no guests complaining about the weather, the soaked floors, the rivers running past our rooms, the constant feeling of wet clothes as you ran from your room to the dining room, from the dining room to the cabana. It was a taste of what the world should be, and yet isn't.
We learned that the average wage there is roughly 200 a month, yet a home is about 400-500 a month. Yet, these contented people work together, they help each other, they feed each other, they rebuild together, they don't have time to sit behind computers bellowing at their neighbours about politics, they haven't got the energy to hate a person who has more, or less, than they do. They are in this together. They epitomized community. It was beautiful. As we drove through the city, as we watched from high above in a cable car going up the mountain, I became very ashamed. I was ashamed at how our wealth, our freedom, our way of life, our technology have been used to hurt, to hate, to waste time on tearing down rather than building up. We consider ourselves first world, yet this third world poverty proved to me that the problem isn't economics, it's us. We need to re calibrate, we need to re think, we need to be better.
I didn't get the sunny tropical holiday I had planned, my skin isn't the shade of brown I was going for when I got on that plane a week ago, but my heart is softer, my mind more open. It wasn't what I was hoping for, but it was what I needed. I found rest, in the knowledge that these immigrants from poor countries that the world loves to hate, could actually teach us a whole lot about what it means to really love your neighbour, to feed the poor, to give sacrificially, to work together for a better tomorrow.
October 21, 2016
Even LIttle Details
Writing is something I have missed, somehow in the busyness I have gotten out of the habit and it actually wears on me. Here's the thing though, Once I sit down and actually make myself think about writing it all comes to me in such a rush that I don't know where to start, there is just so much to say and then I become overwhelmed and I close the computer, pour a coffee and try to justify to myself that it's okay.
Today is different. Today I have decided to push everything aside and try to focus.
Last year was a rough year for both of our kids at school. They really struggled in a very tough school, they were lost in the fray so to speak of a school that had so many problems that the kids who behaved were easily dismissed. They didn't learn, they were anxious. They hated going, every morning was hard. I was scared to go to far from our neighbourhood because I was called so frequently to the school for injuries, or concerns, or sometimes I just felt the actual need to check up on what was actually happening on the playground. I never had my phone off, never left it where I couldn't hear it, it was a lifeline in many ways because I knew that it was entirely possible that I may need to go rushing there at a moments notice and the school would need me available.
Josh also had a number of seizures in January and February, on the night of his birthday we had to rush him to the ER where he was unresponsive for over an hour. With changes in medicine doses we did eventually sort him out but it scared all of us, teachers included so we had a number of calls for that as well from the school.
It was at the end of May that a few things happened that prompted me to seriously question the placement of the boys. I won't get into details but I will say that it was the worst school I have ever heard of, and the administration was not doing anything to change things, teachers were left unsupported so they were left to deal with the discipline fall out. I saw that the boys were not only not happy but they weren't learning anything either. I couldn't continue to put them (or us) through that. These two boys have seen enough in life, they have fought to hard for everything, they deserved a chance to flourish, not be left to wilt and ultimately (I believe) fall through the cracks simply because they were not the problem kids in their classes. After numerous talks with the administration I began to see that nothing would change, that I was being told what I wanted to hear but there was no actual follow through, and hadn't been in the three years we had been associated with this school. In a very clear moment of assertion I finally made the choice to pull the kids from that school and have them transferred. The question became, to where? I didn't know what to do, I didn't know what school to ask for so I just asked God to make the decision for me. In the end when I spoke with the school superintendent (a last resort to get my kids out of the school they were in and into a new school) he suggested the school they now attend. It is a school that I wouldn't have chosen at first, but they have two best friends that go to this school so I agreed and hoped and prayed it was what God wanted.
Here's the thing: When I told the boys that they were not going back to the old school in September they were elated! They were beaming and hugging each other, they repeatedly thanked me, Kaper even called me his hero and numerous times told me he was proud of me. It wasn't until that moment that I realized just how bad it had been, just how strong they had needed and proven to be. With light at the end of the tunnel they were both overjoyed and for the rest of the time they had to attend that school they walked taller, lighter from the burdens no longer on their backs.
We are now bringing October to a close, Kaper just turned 7 years old, Josh's heart is unchanged (great news), his seizures are under control, here's what I can tell you about what I have learned through out this past year.
GOD IS IN CONTROL, He knows what he's doing, he cares about not just our health, he cares about the things that we care about, the bully's, the politics in schools, the worry about education, the daily struggles we all face that aren't necessarily something we think to go to him for because they seem small. He is there always, not just when your kid is lying in the ER unresponsive but also when he comes home feeling beat up after a difficult day, week, month... year.
This year when they started that new school they were EXCITED! Josh had his best friend IN HIS CLASS and all four boys have each other to count on at recess. They have teachers who care that they learn, they have administration that doesn't put up with any problems within the classrooms and because of that, they are surrounded by kids who sit and listen, who work to hard to achieve success. Kids want the boundaries adults set and these kids are all proof of that.
The support the boys are getting this year is incredible, just this week I met up with the spec ed teacher that works with Josh. Here is what he said:
Josh is doing incredibly well, 7 weeks into transition into a full size class all day and he's doing fantastic! His reading is not far off grade level, though he needs support still. His math is at grade level and in some cases he's understanding some grade four stuff. (really not my kid). He is well behaved and most important HE TRIES really hard, his effort is amazing. His one teacher said that he tries so hard he must come home exhausted. (He does).
Two years ago we were told that Josh would always have a language impairment, but on Thursday morning his teacher told me that orally he's doing fantastic and just needs some help with his writing and reading. We were told that he would need a special education program for him but this year he's in a regular classroom and thriving. Last year were told his spelling was atrocious (evidenced in absolutely EVERYTHING he tried to write - including spelling - which he spelt speling) but the last two weeks in a row he's gotten 100% on his spelling tests. Everything you tell this kid he can't do he does, he fights, and not only does he fight, he wins.
Last May when I was trying to decide what to do about the school situation I literally spent nights sleepless, not knowing what the best call was, I worried that after the time I spent investing in the relationships at the old school that it would be a difficult step to uproot them and trust a whole new administration and teaching staff. I worried that it was letting the other kids down if I wasn't there to fight on their behalf. Sitting here now, drinking my coffee and reliving it for you I have to say. Moving them was the best call we have made as parents (except for a few medical decisions along the way). Sitting here now, I can see how God was moving, working and taking care of my boys in ways I couldn't have planned or imagined; in ways I couldn't do as their mother because I can't see the bigger picture.
The take home from all of this? He is there regardless of the situation. He cares about EVERY SINGLE LITTLE DETAIL that we come across in our lives. He knows our every worry and he's already moving toward a solution, we can rest in that. For the first time in 8 years I am at rest; knowing that all is well with my boys and my family. Knowing that God is with me even now, he's with them, he's with Tim, he's with you.
February 19, 2016
Get real.
I don't often use this forum to rant but when I do it's often because whatever issue it is has been upsetting me and the only way to feel heard and process why it's upsetting me is to write it down.
This past week there has been a lot of furor at Sick Kids over a silly petition, I'll tell you the basics and then take you through point by point why this upsets me. I encourage you to stick with me here because I know many of you might have seen the article in the paper or on the news and not thought too much about it.
So, a life coach has decided that children need to hear positive words and associate positive things when they are going to the hospital (I am paraphrasing), and she has put forward a petition to change the name to one that is 'easier' on the ears of children. A few of her thoughts: 'the magical hospital' or 'the miracle healing centre'.
I start to talk about this and my blood actually starts to get hotter, then I rush to tell all the reasons why this is so upsetting and wrong and it all comes out in a garbled angry mess. So, bear with me while I take you through this is a more orderly fashion. (This is going to be hard for me since I am used to typing until I am done and just letting my thoughts roll out).
1) Let's talk about the brand Sick Kids. It is the second best children's hospital in the world. Doctors come from all over the globe to be taught by our doctors, because they are best. When someone in China, the Philippines or any other place on the planet hears the name Sick Kids they immediately think positive things. Why? Because there are positive things happening there. One of the doctors we had early on in our Sick Kids journey was a man from Saudi Arabia who was here to learn all that he could from our doctors so that he could go home and save children's lives in his home country. That is what Sick Kid does. Because Sick Kids has built a brand and that brand is known world wide for being the best. It is prestigious. So, given the brand already in place, the reality is that if suddenly we change the name to 'the magical healing centre' (or some such ridiculousness) and then asked someone in, lets say India, about it, they would look at you blankly because they haven't ever heard of it. This means obviously, that in order to change the name of this prestigious brand we would have to go through a re-branding process that would cost us millions (Im guessing on amounts, I have no idea what it would cost but I imagine it would be multiple millions). Guess where that money would come from? STRAIGHT OUT OF OUR HOSPITAL; straight out of research, straight out of new technology and straight out of the funds for new and better facilities. Basically, re branding Sick Kids would be at the cost of our kids. What's so positive about that?
2) Josh is sick. Every kid that steps into those hallowed halls is--close your eyes for a second if you can't handle non-positive talk--SICK. They (for many different reasons) have entered that building to do battle. They didn't come to ride a roller coaster of fun; they go to Wonderland for that. They came to Sick Kids because they are a) Sick and b) want to get better. Josh himself said to me "You go in sick, you come out better". As parents and caregivers we don't hide the truth from them (and I am not just speaking for me here, I have heard from MANY parents on this topic in the last week). You can't tell your son he's going to the magical hospital and then hand him to a surgeon for open heart. It is the stepping stone to losing the trust that we as parents need when navigating this horrible journey. I need to know at all times that Josh trusts me with his life when I take him to that place. I tell him going in what is going to happen, all the painful stuff and all, then I hold him while he processes that information. He asks the questions he needs and in the end, walks away from the conversation knowing that I wouldn't do this unless I had too. The positive talk? That comes when he's seconds away from the OR and he's terrified. That's when I pray with him and remind him who he is; a brave, strong, warrior who is loved beyond measure. Positive talk comes in the nights after open heart surgery when he's begging me to make the pain stop and screaming that he 'can't do it'. That's when I stand beside his bed all night, holding his hand and tell him that he can do it, that he already has done it and that he is the fiercest knight I have ever met. Positive talk comes when the nurses, doctors and child life workers walk into his room and do their best to make everything as painless as possible, or to reassure him, or bring him a smile. Positive doesn't happen in a name... it happens inside those walls of a building we never wanted to be in but in an odd way have come to love.
3) I raise my son to believe in God;, to turn to Him for hope and strength and courage. I do my best to teach him that God answers prayers but sometimes those prayers do not get the answer we want. This is a hard lesson. Better to learn it young. Here's a hard truth. Babies die. Kids die. There is nothing, absolutely NOTHING that can prepare someone for that. Here's another hard truth. Kids like Josh are afraid of dying. It will come up. It does come up, because they are scared that when the anesthesiologist puts that mask on their face they may not wake up. Those conversations need to take place. No positive talk will make that fear go away for a kid. Going to a 'miracle healing centre' and then the child dies? What does that say about death? What does it say to a kid like Josh who would expect a miracle healing, but wakes up in the ICU with his chest cracked open and sewn shut? A kid like Josh who will never be 'cured'. I believe in miracles, I teach my boys about them, I have sat front row for thousands of them in our journey and I always point them out to Josh. But let me say this: to know a miracle for what it is, you must first know the desperateness of the situation. (Me getting a coffee in the morning is not a miracle. But if you knew how many lives were spared by me having coffee every morning you would indeed see the miracle).
4) Kids, are people. (WHAT?! Who knew?) They are little people who are growing into big people and they need to know how to cope in life. Life will throw some hard things at you and it hurts. People can be mean, employers can be unfair, spouses can betray, children can hurt you. How do we prepare our little people into the world ready to cope with life when we couch everything in pretty words and bubble gum softness. Let's be real here. It's like giving them an award for showing up every time they show up and then sending them into a world where they are expected to more than show up and then being mad at them for not knowing that. It's insane what we are doing to our kids, we are not teaching them truth, we aren't preparing them for real life, we are not doing them a service we are setting them up to be crushed when they fail. Is that really what is 'best' for them?
5) This is the last thing on my list (thank you for your patience) but to me it's one of the things that frustrates me the most about life in the modern world. The media. Here's the situation. There are millions of really news worthy stories in Toronto, good deeds not reported, worthy causes that don't have the right 'hook' to make it to the news. Yet, there are these people in the media who pick on the truly useless stories (like this petition issue) and make that a top story? Really? This 'life coach' gets more coverage than the kids in that hospital who are waging war on their bodies to find health? She and the media are more concerned with what we call the place than we are with who is inside it, or what illnesses led these kids there? When did we as a society become to callous? When did the media start caring more about the Kardashian's of the world and the silly 'puff' pieces than they do about the truth? We live in a society that cares more about what Trump said last night than we do about the kid who is lying in a bed down the street from you dying from pulmonary hypertension because of the lack of funding for research and care. That is who we have become, Toronto.
The kids who are lucky enough to go for treatment at Sick Kids are sick. They fight daily for the life they have. They struggle through pain and anxiety and wear their scars with pride. They hear 'Sick Kids' and they hear "hope"! Not because of the name but because of the amazing staff and people in that building. They go there to put on their armour, they go there to become warriors, they go there and find strength, resilience, courage. They go there to win. They don't go there for magic, they go there for the awesome doctors, nurses, technicians, child life workers, therapists and everyone else they run into contact with. They go there for the science that gives them life, not "magic" that promotes false hope. They fight a legitimate battle, and for them, using "cushion words" is demeaning. It belittles and takes away from the legitimacy of what they face.
This past week there has been a lot of furor at Sick Kids over a silly petition, I'll tell you the basics and then take you through point by point why this upsets me. I encourage you to stick with me here because I know many of you might have seen the article in the paper or on the news and not thought too much about it.
So, a life coach has decided that children need to hear positive words and associate positive things when they are going to the hospital (I am paraphrasing), and she has put forward a petition to change the name to one that is 'easier' on the ears of children. A few of her thoughts: 'the magical hospital' or 'the miracle healing centre'.
I start to talk about this and my blood actually starts to get hotter, then I rush to tell all the reasons why this is so upsetting and wrong and it all comes out in a garbled angry mess. So, bear with me while I take you through this is a more orderly fashion. (This is going to be hard for me since I am used to typing until I am done and just letting my thoughts roll out).
1) Let's talk about the brand Sick Kids. It is the second best children's hospital in the world. Doctors come from all over the globe to be taught by our doctors, because they are best. When someone in China, the Philippines or any other place on the planet hears the name Sick Kids they immediately think positive things. Why? Because there are positive things happening there. One of the doctors we had early on in our Sick Kids journey was a man from Saudi Arabia who was here to learn all that he could from our doctors so that he could go home and save children's lives in his home country. That is what Sick Kid does. Because Sick Kids has built a brand and that brand is known world wide for being the best. It is prestigious. So, given the brand already in place, the reality is that if suddenly we change the name to 'the magical healing centre' (or some such ridiculousness) and then asked someone in, lets say India, about it, they would look at you blankly because they haven't ever heard of it. This means obviously, that in order to change the name of this prestigious brand we would have to go through a re-branding process that would cost us millions (Im guessing on amounts, I have no idea what it would cost but I imagine it would be multiple millions). Guess where that money would come from? STRAIGHT OUT OF OUR HOSPITAL; straight out of research, straight out of new technology and straight out of the funds for new and better facilities. Basically, re branding Sick Kids would be at the cost of our kids. What's so positive about that?
2) Josh is sick. Every kid that steps into those hallowed halls is--close your eyes for a second if you can't handle non-positive talk--SICK. They (for many different reasons) have entered that building to do battle. They didn't come to ride a roller coaster of fun; they go to Wonderland for that. They came to Sick Kids because they are a) Sick and b) want to get better. Josh himself said to me "You go in sick, you come out better". As parents and caregivers we don't hide the truth from them (and I am not just speaking for me here, I have heard from MANY parents on this topic in the last week). You can't tell your son he's going to the magical hospital and then hand him to a surgeon for open heart. It is the stepping stone to losing the trust that we as parents need when navigating this horrible journey. I need to know at all times that Josh trusts me with his life when I take him to that place. I tell him going in what is going to happen, all the painful stuff and all, then I hold him while he processes that information. He asks the questions he needs and in the end, walks away from the conversation knowing that I wouldn't do this unless I had too. The positive talk? That comes when he's seconds away from the OR and he's terrified. That's when I pray with him and remind him who he is; a brave, strong, warrior who is loved beyond measure. Positive talk comes in the nights after open heart surgery when he's begging me to make the pain stop and screaming that he 'can't do it'. That's when I stand beside his bed all night, holding his hand and tell him that he can do it, that he already has done it and that he is the fiercest knight I have ever met. Positive talk comes when the nurses, doctors and child life workers walk into his room and do their best to make everything as painless as possible, or to reassure him, or bring him a smile. Positive doesn't happen in a name... it happens inside those walls of a building we never wanted to be in but in an odd way have come to love.
3) I raise my son to believe in God;, to turn to Him for hope and strength and courage. I do my best to teach him that God answers prayers but sometimes those prayers do not get the answer we want. This is a hard lesson. Better to learn it young. Here's a hard truth. Babies die. Kids die. There is nothing, absolutely NOTHING that can prepare someone for that. Here's another hard truth. Kids like Josh are afraid of dying. It will come up. It does come up, because they are scared that when the anesthesiologist puts that mask on their face they may not wake up. Those conversations need to take place. No positive talk will make that fear go away for a kid. Going to a 'miracle healing centre' and then the child dies? What does that say about death? What does it say to a kid like Josh who would expect a miracle healing, but wakes up in the ICU with his chest cracked open and sewn shut? A kid like Josh who will never be 'cured'. I believe in miracles, I teach my boys about them, I have sat front row for thousands of them in our journey and I always point them out to Josh. But let me say this: to know a miracle for what it is, you must first know the desperateness of the situation. (Me getting a coffee in the morning is not a miracle. But if you knew how many lives were spared by me having coffee every morning you would indeed see the miracle).
4) Kids, are people. (WHAT?! Who knew?) They are little people who are growing into big people and they need to know how to cope in life. Life will throw some hard things at you and it hurts. People can be mean, employers can be unfair, spouses can betray, children can hurt you. How do we prepare our little people into the world ready to cope with life when we couch everything in pretty words and bubble gum softness. Let's be real here. It's like giving them an award for showing up every time they show up and then sending them into a world where they are expected to more than show up and then being mad at them for not knowing that. It's insane what we are doing to our kids, we are not teaching them truth, we aren't preparing them for real life, we are not doing them a service we are setting them up to be crushed when they fail. Is that really what is 'best' for them?
5) This is the last thing on my list (thank you for your patience) but to me it's one of the things that frustrates me the most about life in the modern world. The media. Here's the situation. There are millions of really news worthy stories in Toronto, good deeds not reported, worthy causes that don't have the right 'hook' to make it to the news. Yet, there are these people in the media who pick on the truly useless stories (like this petition issue) and make that a top story? Really? This 'life coach' gets more coverage than the kids in that hospital who are waging war on their bodies to find health? She and the media are more concerned with what we call the place than we are with who is inside it, or what illnesses led these kids there? When did we as a society become to callous? When did the media start caring more about the Kardashian's of the world and the silly 'puff' pieces than they do about the truth? We live in a society that cares more about what Trump said last night than we do about the kid who is lying in a bed down the street from you dying from pulmonary hypertension because of the lack of funding for research and care. That is who we have become, Toronto.
The kids who are lucky enough to go for treatment at Sick Kids are sick. They fight daily for the life they have. They struggle through pain and anxiety and wear their scars with pride. They hear 'Sick Kids' and they hear "hope"! Not because of the name but because of the amazing staff and people in that building. They go there to put on their armour, they go there to become warriors, they go there and find strength, resilience, courage. They go there to win. They don't go there for magic, they go there for the awesome doctors, nurses, technicians, child life workers, therapists and everyone else they run into contact with. They go there for the science that gives them life, not "magic" that promotes false hope. They fight a legitimate battle, and for them, using "cushion words" is demeaning. It belittles and takes away from the legitimacy of what they face.
February 15, 2016
Painful light
You know those months, or two, that seem to go on and on with no end in sight? Yeah, that's what we have been living the past few months. After Josh's last scare (see last post) we got him home and after a few days rest he got back on his feet and seemed to be coping okay. Then we got news from the Eye clinic that his eye surgery was scheduled for February 12th. The last time he had eye surgery I swore that we would never put him through that again... recovery was tough. His eyes have always been his weak spot, when he's scared or anxious he rubs at his eyes, when the light is too bright his eyes water, he HATES anyone touching his eyes, even talking about his eyes around him causes his eyes to water.
So you can imagine how he feels when someone cuts into them and works on them, that for him, is the worst feeling in the world.
The week prior to the surgery he was very scared, and the night before he asked God to give him all of Gods strength and to help him be brave. It just about breaks you heart, because if I could I would do this for him and yet there is absolutely nothing I can do. I have to sit helpless.
The morning of the surgery he asked me to pray for him at least 4 times, and right before they put him to sleep he asked me again. As he drifted off to sleep there were prayers being lifted up around the world for him, I know that, because I know the community we have and I know that their prayers are ever faithful.
Recovery went ok and we were sent home, but it's not been an easy few days. His pain is horrible to watch. He sits in my lap and says 'It's just too much mummy' and all I can do is hold the ice pack on his eye and snuggle him until it eases and the meds start to kick in.
He's also been showing signs (or at least more serious signs - since his recent bouts of seizures) of having photophobia. He hates the lights on, and complains that the light is bothering him in even a dimly lit room.
Last night he prayed 'Please God, make my eyes normal again'...
This is a bummer post... Im tired and this seems all consuming. Please pray for him, for his eyes to heal quickly, for the pain to ease, for the light sensitivity to diminish, for life to find a new normal. So far, this year has been a tough one but it doesn't have to continue this way; pray that God gives us a season of peace after this.
Thank you all for you patience; Ive had many emails about my lack of updates... my computer has been on life-support at the computer hospital, but it's all better now and will hopefully remain in working order.
February 1, 2016
Day 1 - Year 8
Josh's take on life is that you can't ever let people be satisfied with the status quo... if people start to settle in and relax then it's time to shake things up; or at least that is what I think he thinks sometimes. Yesterday, after a fairly regular day of church, lunch, lego and bed he decided that he was going to spice things up.
At 10:00 He came crashing (literally crashing and stumbling) into our room, fell onto our bed and began telling us some strange things he was seeing in his room. He appeared drunk, and he was seeing things like lego figures walking through tunnels from his CD player, or a ghost tongue, and robots climbing on our bed. This went on for hours, I did some neuro tests that they have taught me to do and called the fellow on call for neurology. He spoke about feeling like he was floating and inquired as to when he would feel 'normal' again. At 4:00 he really began freaking out when he saw ants crawling all over his room and trying to rip down his posters. I brought him to Sick Kids and at about 5:00 he fell into a very deep sleep. Nothing we did would wake him; it was terrifying. At one point we had the ER doctors, the Neurology staff and fellow, the ICU doctors, a respiratory therapist and a whole contingent of nurses leaning over his bed trying to get him to wake up. They resorted to some painful tactics but still he wouldn't wake up. We were sent to CT scan to look for a brain bleed, he had an eye ultra sound to see if his optic nerve was enlarged and then he started to have the facial ticks seizures that he had after his stroke when he was a baby; which brought back all of those horrible scary moments.
(I am telling this in a very matter of fact, quickest way possible because I honestly can't think straight.)
At some point (no idea what time) they got through to him a little with pain, he didn't wake up per say but he was responsive to the pain which was a positive. At around 1:00 pm he woke up and was quite groggy, had unresponsive pupils and not a great recall on the events of the night/day but within the hour he was doing much better. We had an MRI and it's showing no new stroke sights and no brain bleeds which was the main concern for all involved. We have been admitted to the Neurology ward and have an EEG scheduled for tomorrow sometime; they are now assuming it's more seizure activity.
That is how Josh shakes things up when things are status quo.
For obvious reasons we are all exhausted and feel like we have been through a combat zone. We have had some pretty scary moments with Josh, that's not new, but seeing him lying unresponsive was enough to make me ill.
All that being said... He's now playing star wars WII and just finished his second pepperoni pizza. When I joke with him about this being a hotel he smiles and says its fun. Today, in a weak moment I started crying in the coffee line and looked up to see the chaplain we have known since our first night of knowing Josh, he wrapped a gentle hand on me and led me to Josh's room to pray with him. It's those stars in the dark night sky again, shining through when you are looking up.
I think sometimes Josh just likes to remind us that we are still alive, and he does it by giving our hearts a restart.
January 31, 2016
The 'Could be's'
Tough comes to mind, tough and yet fragile. Strong, and gentle, kind and cheeky, worried and hopeful, a really complex array of contradictions that make up one amazing kid. I can't say little boy anyway, that dawned on me today... he's not so little these days. I won't reminisce this year, there has been enough looking back for me about this amazing child, he and I are looking forward, planning his future and dreaming about all the 'could be's' in his life. Right now his big plan is to rescue animals and help them get better, particularly the babies who've been left without a Mummy or Daddy to care for them. Every day it changes but there is always a consistent thread; his desire to help; his hope for a better future; a better planet, and a happier 'human'.
Each night when he says good night to God he makes sure to thank him, and each night he tries to thank him for different things. It ranges nightly. Once he thanked God that his brother had gone out that day and he didn't have to listen to him; another time he thanked him for having a brother. Sometimes he thanks him for nature, for the earth, for peace, for a home, for breath. His thankful heart, his enduring spirit, his witty sense of humour have served him well and promise to help him as the journey continues.
It has been 8 years since we welcomed this little man in our home, into our hearts. 8 years of lessons and love and hope and beauty and this amazing proof that God answers prayers. His quiet soul has been held in his makers hands and Josh's peaceful heart is the evidence of that encounter. I am so beyond excited to watch him grow another year older, another year taller, another year wiser...
Happy Birthday Joshua! I am so proud to know you, even more so to call you son. Daddy and I love you more than you can ever possibly imagine; we along with Kaper are so incredibly glad you are a part of our lives. Hugs to you Mr. Man... (I won't say kisses, I know how gross you find those) :D
Love you,
Mummy
January 26, 2016
a tiny view into my life as a pastors wife
Before I even start this post I need to place a disclaimer:
This is not a post about our church or anything to do with our church. I absolutely love the family of believers that we have joined and feel blessed to be a part of this amazing community.
This is a post that has been banging out about in my head for years and Ive never had the words to properly express how I feel about it. It's a post that I have worried would be taken offence too so I chose to remain silent... but today I have the words, and today I am not worried that it will cause offence because I think for the average person reading it you will see that it is simply a call to awareness, not a pity cry, not a fishing rod sent out for words of encouragement. It is simply a glimpse into life as a pastors wife; into a pastors life.
In the church, (again, this is the church in the greater terminology not one specific church), when a person is dealing with difficult times, when a person needs comfort or help or prayer or guidance; you turn to your pastor. You seek someone who can lead you forward and help you see things from a new and different perspective. It's a beautiful relationship really, one that I have called upon many times in the past when I was struggling with things, or when I needed hope that only a pastor can clearly offer (and offer in confidence). It's not simply turning to a friend, it's like seeking counselling and you know that this person loves you, loves God, and desires the best for you. You also have a deep trust and knowledge that this person (your pastor) will keep these deep and private thoughts to him/herself.
What I have come to realize in the last 9 years of marriage is that for a pastor, there is no pastor. A pastor and his family have no such person to turn too. We struggle along the best that we can and when things go wonky there is no objective, loving person to offer guidance and hope and direction or even just to offer up a prayer with us. Being a pastors family can be a lonely place and with no one there to really turn to is there any wonder that pastors burn out? It strikes me as sad that there is no appointed pastor to pastors or pastors wives. Even for the mundane things that sometimes just need an outsider to give clarity too... It grieves me. (This is not a pity post! I am fine, we are fine! I really want to stress that. It is simply as I said, a call to awareness of life with a pastor; because sometimes we aren't fine. Sometimes we need someone to pray with us, to offer advise, to give what Tim is used to giving. Objective, loving, confidential counsel from, not a friend, not a family member but a pastor.)
I am not sure that the general population fully realizes the loss until they find themselves in the situation and that is why I thought to share this today.
January 25, 2016
wait for the scar
Sometimes healing is a quick and painless; a cut that stings but quickly clots and scabs. Sometimes though it is a festering wound, one that needs time and treatments; painful treatments. I once had a burn on my leg from a heating pad. When I woke in the morning my leg stung and had a red sore, I bandaged it and went about my day. That night I discovered it was blistered, I re-bandaged it and went to bed. A few days later the blister burst, again I put on a band aid. Days, in fact weeks went by and that leg got more and more sore, until finally putting any weight on it at all caused me pain. Finally in an attempt to figure out the problem I was forced to give in and see a doctor. He explained that the burn (though it had seemed small and inconspicuous at the time was in fact a third degree burn which had ulcerated on the bone. To heal I would need to take special pains to clean and care for the burn. Twice a day I had to peel off the white scab that was trying to form and wash it clean before I put another bandage on it. It was painful and quite honestly took a large amount of strength and courage (I prefer to ignore painful things if I am honest, and hope they somehow get better on their own). As the days wore on and I stuck to the twice a day cleaning I began to notice changes, the redness eased, walking became easier, and slowly I could begin to see the ulcer as it rose from my bone to the surface. When the ulcer finally surfaced my leg was able to scab up and heal properly.
Healing, emotionally sometimes feels much like that ulcerated burn. Sometimes peeling back the white scab of the raw infected wound is almost more than you can bare and yet it is the only way to really get health back. Old hurts, the ones that are caused by those who you love most, the ones that should be there for you when it matters most but aren't, those are the hurts that most often leave the ulcers on the bones; and they are they are the ones that we too often just bandage and leave alone to fester, those are the ones where infection thrives. Wounds like that take time, they hurt, healing comes at a cost.
I look at my leg now and I see only a scar, a reminder of that little life lesson I have learned along the way... Sometimes I just touch it and remember that there are times in life when you have to take the bandage off and deal with the wound; even if it's only between yourself and God, even if the person who wounded you isn't here to or is unwilling to say they are sorry, even if you have to quietly just say to God 'I choose to forgive them today, and I will have to do it again tomorrow.' As the days of saying those words move forward you one day wake up to realize that the ulcer has reached the surface and all that is left is the scar.
January 16, 2016
Here's the thing...
Here's the thing. It was a crappy week right? We are all tired and not feeling wonderful and we are running a range of emotions... BUT. We have it pretty good. I spent a few days feeling sorry for us, sorry for Josh, sorry for me, sorry for our family, but this morning I was walking the dog and I passed a man sleeping on the cold wet ground, I saw a woman who was sitting on the corner asking for change, and as I made the final turn to head home I saw a young man being arrested. As I finished the last bit of our walk I looked at our situation with new eyes.
Things could always be worse. In the grand scheme of things even the hardest things we have faced as a family are first world problems. Yes; even the stroke and heart problems. Here's why; we are situated in a city that houses the best children's hospital in the country, second in the world. Our teams of doctors are the top medical minds, the same minds that train doctors from all around the globe. We don't have to wait for someone to travel overseas to see us, we don't have to pray bombs don't destroy our hospital today, we don't have to worry about the impending bill that is inevitable in some countries. We don't need to worry if our insurance thinks a procedure is 'elective'.
Sometimes putting things in perspective allows you to see how great you have it, instead of thinking about the crap you are going through. That was me this morning. I woke up still tired, but as I walked past the man sleeping on the cold pavement I was reminded that I slept in a warm bed last night. I grumble A LOT if I don't have enough coffee; but as I passed the woman asking for change I realized that I had coffee in the house, I didn't need to ask people for the change it would require to go buy it. I thought about the health concerns, impending surgery, the fears and I remembered a night in the ICU with Josh when a doctor from the states was telling me that the procedure that had literally just saved Josh's life was actually considered 'elective' in the states and insurance would never have covered it there.
It (for me) is a daily struggle to take time to put things into the right perceptive, this week has been no different. Life sucks sometimes BUT it can always suck more so I need to be thankful for what I have, remember the things that could make this harder, count my blessings that my kids are safe, alive and have amazing care when they are not well.
January 15, 2016
Scare
As most of you know by now Josh had a stroke when he was a baby... 3 months old to be exact. At the time we had no idea of the implications of that little clot... not a clue as to how it would change all of our lives. After years of worry and fear and anxiety and hopelessness and in the last few years even joy and relief I can now say I know exactly what that means... and it terrifies me.
Yesterday I got a call from the school that Kaleb had a headache. I picked him up but the truth of the matter is he seemed fine to me. Then I got a call saying that Josh had a headache and tummy ache and could I come get him. I packed Kaper into the car and we went to get Josh. When I got there I learned that it wasn't just a headache. When the teacher looked at him he was flushed and his eyes were watering, she asked if he was okay but he found that he was unable to talk. The teacher called for assistance to get him to the office and the teacher that came to transport him reported that when he could finally speak he seems disoriented, confused and was repeating his words. His head hurt, and his tummy was upset. You can imagine that the first thing that came to mind was a stroke. I bundled him and Kaleb up and we went to Sick Kids where Tim's Mom met us and took Kaleb for me. After a long and quite frankly very scary wait we learned that Josh had a focal seizure in the sight of his old stroke (in the scar tissue). SO... while it sucks (this is a new type of seizure for him) it was NOT a stroke and for that I am so thankful!
This has been a week I would have preferred to skip, the boys have been tired, Ive been tired. Josh and I learned on Wednesday that he needs to have another his eye surgery (his right eye). He was visibly upset for good reason, it was a horrible surgery for him last time. He's also got fluid in his ear causing him trouble (they believe that it helped to cause the seizure). Kaleb has been showing signs of stress about Josh and if I am honest I am so tired I think I am running on fumes. It's just been that kind of week.
There's a lot going on, but through out I have been blessed by all the notes and emails. Thank you for your prayers and shows of concern.
January 9, 2016
Last year and today.
It is a new year...
With new years I often stop to think about the past year and all the blessings that we have seen in our lives, and sometimes I thank God that the year is over and we can start fresh and hope for a better year to come. This new years I was sick... Ive been sick for over a month so I haven't really stopped long enough to dwell on the last year, or to explore the blessings.
This has been a year full of so many amazing things, and so many tough things as well. Looking back I realize that it seemed like 730 days, not 365. So much happened, good and bad, hard and easy, fun and hard, stressful and carefree. I don't want to dwell on the bad things and the blessings are too many to be numbered here so this post isn't going to list it all and remember; this year I start with the amazingness that is already happening in 2016!
On the eve of 2016 I was anxious. We were days away from another ECHO day and I was worried about what the outcome might be. Josh has had his pulmonary valve for a record amount of time now. He usually rejects it within a year or two. His last pulmonary valve was placed in August of 2013, we have surpassed HIS sell by date by 7 months and as we prepared for the ECHO I have to admit I wondered... 'what if?'. The night before the test Josh prayed for his own heart, something I have always done but this was the first time he did it himself. He prayed 'Dear Jesus, make my heart work good tomorrow. You have 13 hours and 5 minutes'. He added a thank you and an 'I like you' for good measure and went to sleep comfortable in the knowledge that only childlike faith and innocence can bring, that God would do as he had asked.
The ECHO went well, the ECG was a breeze, and we were greeted warmly in the cardiac clinic by out nurse and cardiologist. The smile on our doctors face was an instant relief. I have gotten to know her well in the last 8 years; I have seen her face crinkled in confusion, I have seen her brows knit in concentration, I have seen her worried frown as she reads the ECHO report, I have heard the changes in her voice as she relates the findings to us. I know the voice for a good report and I know the hushed tones of a bad report. I have even seen her tears, and I have seen the hopeless and helpless ache in her eyes. I can take a quick look at her and I know exactly what sort of report I will get. So, on Wednesday when she walked into our little office I knew. Today is a good day.
Things have not 'improved' BUT, things have not gotten any worse either. Everything looks basically the same. The pulmonary valve is only slightly more leaky but still well within a range that he can tolerate. His new tricuspid valve (one of the worst and best parts of 2015) is holding well with almost no leak and together the two valves seem to be keeping the right ventricle from getting any larger. Since April, when Josh got his new valve, this is the only time in his life that the right ventricle has not grown any larger, in fact for a little while after the replacement it even got a little smaller.
I don't know what this new year will bring, I have begun to finally see that life is not to examined on an annual basis but on a daily basis. Was today a good day? Did I do my best today? Have I taught these boys well today? Where do I need to make adjustments? Where can I learn? What needs to change? What was the best part? What was the worst? Where did I see the blessings? Where did I miss them? To wait a year to do these things means possibly missing out on more than I ever want to miss out on. Life is fluid, every day is a moving target and something to be learned from. On Wednesday when we walked out of the office after being told not to come back for 6 months (we usually get told to come back in three months so this is really exciting) Josh looked up at me and asked 'So, God did it right?!'
Yes. Yes, Josh, God did it. He always does, he always will. The question though, the hard part, is seeing it when it's shrouded in the mists of tears and pain. Sometimes we miss it, sometimes he doesn't do it the way we thought he would, sometimes he chooses to say no, sometimes he we have to close our eyes, hold our breath and hang on. Sometimes though, sometimes he does it exactly as we wanted, when we wanted, how we wanted, and the only thing to do is look up at him and smile and say thanks. (Then, breathe a sigh of relief).
I have no resolutions for this new year. I only have one for today. I resolve to be more present with these boys. I resolve to love these men in my life (Tim I include you first on this list) to the best of my ability today. I resolve to lay down in my bed tonight and look over my day and say 'thanks', even if today sucks. (Which it hasn't so far) and I resolve to look hard so that I don't miss the blessings. Tomorrow... Tomorrow I will have a new resolution, but it will be the same as today's.
November 25, 2015
Reality Check
I took the kids to beavers tonight, I have an impending cold, the kind that teases you for days before it really lets loose and parties in your head until you think it might actually blow your head up... I had a great coffee chat with a friend while the kids were in beavers and then I took the kids home and rushed them to bed so I could have time to myself... to feel sorry for myself with a kleenex in one hand and a warm lemon drink in the other. To 'entertain' myself I flipped on Netflix and picked a film called Blood Brother...
REALITY CHECK: I have first world problems.
This film is based on a true story about a guy named Rocky who went travelling as a tourist to India. While there he went to an orphanage and stay for a while getting to know the kids, after a set time he leaves to finish his travels but they all seem empty to him compared to those kids he'd left behind. He was faced with a decision. Adopt one? Forget them all? Become a part of their family and move to India.
These kids all have HIV/AIDS. He serves them with such love, unimaginable love, sacrificial love. There is one portion of the film that takes you through him caring over a sick child in hospital who he was sure was going to die. He worked tirelessly to make that child as comfortable as possible, to give him a 'special' death. The boy however lives to the amazement of all. He credits God, the doctors credit him.
I was so moved by the love in this film... especially in the world climate we are living in right now. There is so little love like this left it seems. Everyone is always 'picking a side' or being offended by a group, or hating based on bias, or killing in the name of religion, terrorizing millions of men, women and children... it's such a dark time.
Strokes me that we could all use a little bit more of this particular kind of love... it's the kind of love that moves people to change, the kind of love that offers hope, the kind of love that breaks down barriers and as in the case of that young boy... it's the kind of love that can save lives. It's the love that faces fear but does it anyway, it's the kind of love that is honest, painful, awe inspiring.
I see the suffering of the children living there; I think of our Hospital stays and the many comforts I miss as a result... and I am truly humbled. What we have seen, what we have gone through is absolutely NOTHING. It is, while hard and often scary, a first world problem. We walk around the streets of the cities we live in and we pass a millions blessings that we no longer see, maybe we never saw them to begin with because it's our way of life... Running water, nurses who cover us when we need a coffee, heck... even coffee makes the list of the thousands of things we take for granted every single day. Electricity? Wifi? Car? Ambulances when tragedy strikes? The list is endless, and we sit in our warm homes and complain about politics or how offended we are by Starbucks red cups...
I hope; I hope that one day someone can say that I loved well, that I was able to show love, that I will serve and serve sacrificially. That is my prayer, that I will choose love or selfishness.
I urge you to take the time to watch this film... BLOOD BROTHER... (on netflix) it was worth the hour something I spent for the eye opening.
REALITY CHECK: I have first world problems.
This film is based on a true story about a guy named Rocky who went travelling as a tourist to India. While there he went to an orphanage and stay for a while getting to know the kids, after a set time he leaves to finish his travels but they all seem empty to him compared to those kids he'd left behind. He was faced with a decision. Adopt one? Forget them all? Become a part of their family and move to India.
These kids all have HIV/AIDS. He serves them with such love, unimaginable love, sacrificial love. There is one portion of the film that takes you through him caring over a sick child in hospital who he was sure was going to die. He worked tirelessly to make that child as comfortable as possible, to give him a 'special' death. The boy however lives to the amazement of all. He credits God, the doctors credit him.
I was so moved by the love in this film... especially in the world climate we are living in right now. There is so little love like this left it seems. Everyone is always 'picking a side' or being offended by a group, or hating based on bias, or killing in the name of religion, terrorizing millions of men, women and children... it's such a dark time.
Strokes me that we could all use a little bit more of this particular kind of love... it's the kind of love that moves people to change, the kind of love that offers hope, the kind of love that breaks down barriers and as in the case of that young boy... it's the kind of love that can save lives. It's the love that faces fear but does it anyway, it's the kind of love that is honest, painful, awe inspiring.
I see the suffering of the children living there; I think of our Hospital stays and the many comforts I miss as a result... and I am truly humbled. What we have seen, what we have gone through is absolutely NOTHING. It is, while hard and often scary, a first world problem. We walk around the streets of the cities we live in and we pass a millions blessings that we no longer see, maybe we never saw them to begin with because it's our way of life... Running water, nurses who cover us when we need a coffee, heck... even coffee makes the list of the thousands of things we take for granted every single day. Electricity? Wifi? Car? Ambulances when tragedy strikes? The list is endless, and we sit in our warm homes and complain about politics or how offended we are by Starbucks red cups...
I hope; I hope that one day someone can say that I loved well, that I was able to show love, that I will serve and serve sacrificially. That is my prayer, that I will choose love or selfishness.
I urge you to take the time to watch this film... BLOOD BROTHER... (on netflix) it was worth the hour something I spent for the eye opening.
November 5, 2015
They can overcome.
For most of Josh's seven and half years we have been told he has a language impairment and learning disability resulting from the stroke... he's heard it over and over again at multiple appointments... he's heard the doctors say repeatedly where is weaknesses are, and he's heard his teachers tell me over and over again where he's missing the mark... it's been a fact of his life; it's become a fact of our lives...
Last fall Josh came downstairs after only 4 days of school crying; he told me that he didn't want to go to school because it was 'too hard' and he 'can't do it'... he told me that he 'can't read' and that all the other kids are reading but not him... it was hard to hear him so defeated but no matter how hard we all tried his progress was painfully slow. His test scores for reading were quite low (way below his grade level should be - according to provincial standards, which is not necessarily achievable by the average kid if you ask me)...
When my Grandpa died we had to drive up north to the funeral; on the way to keep the kids from fighting I started asking Josh math questions... turns out that he can do double digit (carrying the 10) addition in his head, as well as subtraction... I made a bit of a deal about it because I was so impressed... The next day I noticed something different about him; he was wanting do math more and more, he kept asking me to ask him questions. That was when I was hit in the head with the truth of Joshua's life. I should have seen it before; but Josh has been hearing how he 'can't' do things from everyone, doctors, teachers, therapists, and even me when I am talking to the doctors and teachers... without even realizing what we were doing we were crushing his self-confidence. You hear you 'can't' enough and you start to really believe you can't.
So, I started that very day working to build that confidence in him. I talked endlessly to whoever would listen (when Josh could hear me) about how much his reading was improving, how his language was so much better, how the new medicine he was on was allowing him to do things he couldn't do before. I started telling him multiple times a day that he 'can' do it, that he 'was' doing it.
It has been a month since Grandpa's funeral, just one month. Josh is reading is getting so much better already, he's not where he needs to be, he's got a long way to go, but he's TRYING, and he's getting it, I can see his brain engaging and the code of letters is starting to click for him. Yesterday he started to try to read the signs on the way back from an appointment at Sick Kids... We were sitting in the cab and the taxi driver commented to him what a great reader he was and Josh's little face lit up like it was Christmas.
This morning when we waited for the bus I told him how proud I was of him, that he was getting so great at reading and that when Daddy (who has been a way for the week) comes home he will be so surprised with how far he's come... Josh looked at me with so much pride in himself, and then he came over and initiated a heart warming hug. It almost felt like a thank you. (I hug Josh so much that he never really initiates hugs; so to get one from him was a gift).
I got so used to the appointments where Josh is being tested for things (learning and language), appointments where he's present but often busy with a game or colouring, that I forgot he's taking in absolutely EVERYTHING we are saying about him; and he's taking it to heart. It should not have taken me so long to see this, to change the language we use around him from 'can't' to 'can'. It should not have taken so long... but I am so glad it didn't take longer.
If you learn anything from our story learn this: Words are powerful. They can break a spirit or they can make a person whole. They can defeat a person or build them up to be victorious. They can be heard even when we don't think the person is listening. How and when we use words to describe our kids will determine a lot of things about who they will become. It can't always be helped; these conversations sometimes need to take place; but balance is imperative; when the doctors/teachers are done telling them what they can't do, you need to step in to tell them that they can, and you need to help them believe it. The change I have seen in Josh in just one month is proof that self confidence in a child, believing in themselves, is a huge part of the battle and it will determine if they win or lose that battle.
The wonderful thing about kids? They bounce back; they overcome.
Last fall Josh came downstairs after only 4 days of school crying; he told me that he didn't want to go to school because it was 'too hard' and he 'can't do it'... he told me that he 'can't read' and that all the other kids are reading but not him... it was hard to hear him so defeated but no matter how hard we all tried his progress was painfully slow. His test scores for reading were quite low (way below his grade level should be - according to provincial standards, which is not necessarily achievable by the average kid if you ask me)...
When my Grandpa died we had to drive up north to the funeral; on the way to keep the kids from fighting I started asking Josh math questions... turns out that he can do double digit (carrying the 10) addition in his head, as well as subtraction... I made a bit of a deal about it because I was so impressed... The next day I noticed something different about him; he was wanting do math more and more, he kept asking me to ask him questions. That was when I was hit in the head with the truth of Joshua's life. I should have seen it before; but Josh has been hearing how he 'can't' do things from everyone, doctors, teachers, therapists, and even me when I am talking to the doctors and teachers... without even realizing what we were doing we were crushing his self-confidence. You hear you 'can't' enough and you start to really believe you can't.
So, I started that very day working to build that confidence in him. I talked endlessly to whoever would listen (when Josh could hear me) about how much his reading was improving, how his language was so much better, how the new medicine he was on was allowing him to do things he couldn't do before. I started telling him multiple times a day that he 'can' do it, that he 'was' doing it.
It has been a month since Grandpa's funeral, just one month. Josh is reading is getting so much better already, he's not where he needs to be, he's got a long way to go, but he's TRYING, and he's getting it, I can see his brain engaging and the code of letters is starting to click for him. Yesterday he started to try to read the signs on the way back from an appointment at Sick Kids... We were sitting in the cab and the taxi driver commented to him what a great reader he was and Josh's little face lit up like it was Christmas.
This morning when we waited for the bus I told him how proud I was of him, that he was getting so great at reading and that when Daddy (who has been a way for the week) comes home he will be so surprised with how far he's come... Josh looked at me with so much pride in himself, and then he came over and initiated a heart warming hug. It almost felt like a thank you. (I hug Josh so much that he never really initiates hugs; so to get one from him was a gift).
I got so used to the appointments where Josh is being tested for things (learning and language), appointments where he's present but often busy with a game or colouring, that I forgot he's taking in absolutely EVERYTHING we are saying about him; and he's taking it to heart. It should not have taken me so long to see this, to change the language we use around him from 'can't' to 'can'. It should not have taken so long... but I am so glad it didn't take longer.
If you learn anything from our story learn this: Words are powerful. They can break a spirit or they can make a person whole. They can defeat a person or build them up to be victorious. They can be heard even when we don't think the person is listening. How and when we use words to describe our kids will determine a lot of things about who they will become. It can't always be helped; these conversations sometimes need to take place; but balance is imperative; when the doctors/teachers are done telling them what they can't do, you need to step in to tell them that they can, and you need to help them believe it. The change I have seen in Josh in just one month is proof that self confidence in a child, believing in themselves, is a huge part of the battle and it will determine if they win or lose that battle.
The wonderful thing about kids? They bounce back; they overcome.
November 2, 2015
pause the chaos
It is an interesting thing when you set traditions... we started one a long time ago when Kaleb was just a year old; one we didn't know we were setting but has turned into one of my favourite things to anticipate each year. When he was one and Josh was two and a half we dressed them up in their costumes and we drove to our friends house where the men took the kiddies (five in total) around the streets for halloween. Kaleb in his stroller as Tiggy and the rest racing around banging on doors and begging (very sweetly) for any treat they might have. Every year I get a group photo (some years were a trial with four boys and a young lady). Each year I look at them and remember what they all looked like the year before and I can't get over how much they have changed; how much they have grown. I look forward to seeing them grow; to seeing how long we can keep this tradition alive before they would rather go trick or treating with their friends.
There is something so magical about childhood, as they get ready to go out, as the anticipation amps itself up and the thrill of being outside on the dark streets comes to it's brimming head I can distinctly remember what that feeling was like. Then the return; when you get to show mum all that loot! The inevitable 'sorting' of the candy where in our house we check for all the scary things my parents used to check for but also for any peanut treat. (Sometimes when it's something Mama really likes she finds things on the label written in invisible ink - glad he can't read yet). It works in our favour that Tim and I are known to take a week holiday to ourselves following halloween so all those peanut butter cups manage to find a home in our suit case.
This year as I watched their rosy cheeks return, when they picked up their over flowing bag and tried to hug it to themselves because it was so heavy I was overcome with how fleeting this thing called childhood is. The little lady I talked about, the only one in a group of four boys, looks so much older this year, Josh too is getting so tall and grown up. It's hard, when you are in the thick of it with them to stop and appreciate the moment for what it is. It's hard to watch the chaos and not sit in it for a few seconds and just enjoy it. It's life's fluidity I guess but it seems like only yesterday that I was the rosy cheek little girl clinging to my own over stuffed bag of candy waiting for my Dad to remove 'dangerous' items that he would sacrifice himself for me and eat on my behalf.
May you each have a really wonderful November and try to pause the chaos long enough to enjoy it for what it is... a very precious memory.
L
October 27, 2015
missing you
He was a quiet, stoic man. His life wasn't easy. Every ounce of love he had for me had to be masked, hidden, because unfortunately my Grandma wasn't an easy women. It took years for me to come to terms with that... maybe I am still working on that. Those walks, just he and I, there was no need to hide, no need to pretend. His calloused hand holding my much smaller child one is a tangible thing that I can feel as soon as I close my eyes.
If you went to the cottage you would find Grandpa in the garage, building something usually. I would follow him around and he would let me. No matter what he was building he made space for me beside him and hand me some wood, nails and a hammer and together we would work. The smell of sawdust still takes me back to that workbench; his body close to mine. When the work was finished he would announce that it was time to go to the beach and we would run down to the beach and there, for hours, he would row our boat filled with friends, we would jump off and he would haul us in, just for us to jump off again. He never seemed to run out of time for us. He didn't say it often... but in his actions we knew we were loved.
As I got older and the visits became harder I would get random cards in the mail from him, reminders that he loved me. Once when I was living in my first apartment on my own I got a St. Patricks day card in the mail. Who gets a card for St. Patricks day? It's one of the few I put into a special place, to pick up on days like today when I am missing him...
It saddens me to say that it wasn't until 15 years ago; that I got a real chance to know my Grandpa. He moved in with my parents and for the last 15 years he's been a welcome and fun part of our family. He made several trips to Europe to visit me while I lived there. We went to Wales, visited Venice and explored Austria together. There are so many things about him that make me smile, so many things that I miss... it's been almost a month since he passed away; I think I am still trying to come to grips with that.
He was, is, part of me. I see him in myself, I see him in my boys. I thank God for the time we had with him, particularly the gift of the last 15 years. I thank God that he is at peace now, and that one day I will get to hold his hand again. Until then, I will miss everything about him, everything.
Goodbye Grandpa, I love you.
L
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