The lilac

I have never been a gardener; I enjoy them but to me, they always just seem to be another room that needs maintenance.  I have lived in a few homes now that had beautiful gardens and I have always managed to keep them clean and maintained but to say I found any joy in it would be lying to you. The one thing that I have always loved though are flowering trees. When Josh was born we planted a cherry tree so that every spring we could enjoy the cherry blossoms; we moved before I ever saw one but that doesn't matter because each spring we drive by and I take pride in the fact that I left something beautiful behind. When Kaleb was born I planted a lilac and again we moved before I really saw any real blooms. The last mothers day before we left that house I was given a magnolia and I planted it in the front so that we could drive by and see it as it grew and bloomed. The house we are in now had a beautiful garden when we moved in, a huge butterfly bush full of beautiful dark purple blossoms added so much colour and beauty until it died during the ice storm a few years back. We had a lilac here too that survived and seemed to thrive. Every year I enjoy both the look and the smell of the lilacs on the breeze and I have to admit to a bit of sadness each year when I look outside and see the ground covered in a purple carpet of fallen petals. 

A few years ago I found an old blue dresser that someone was throwing out, I picked it up and it was stored at my cottage waiting for me to have space in the car for me to bring it home, this spring it finally made it's way to Toronto with Tim and Kaper and as I pulled out the drawers and started looking it over I quickly realized that it was not going to be suitable for an indoor dresser. However, I hated to throw it out so I decided to use it as a garden piece. It was blue so I didn't need to paint it. I bought soil and some plants and lined the drawers with plastic and added some holes for drainage and made it into a leveled planter. When I stood back and looked at my work I realized that the sides of the drawers hadn't been painted the blue colour and were actually not overly attractive so I pulled out some paint and added some dragonflies and flowers to it. On the top of the dresser, I put some pots with flowers and one used one of Kaper's old rain boots to make a cute little pot for the last of the flowers I had. The entire thing only took an afternoon but spending a beautiful day in the backyard making something look both cute and whimsical made me feel really good. I felt that I had accomplished something that wouldn't be destroyed or messed up the next time the guys came home from school. So began a discovery of the joy of creating a garden. I began to look at my backyard differently, I worked, I created, I painted, I beaded, I planted, I watered, I enjoyed myself and found peace while I was doing it. 

As I began to take more interest in the garden I also started learning how to care for the plants I have for so long basically ignored. One of those things was my lilac. One day I was up on the roof of my shed trying to trim back the apple tree and the lilac tree when I realized that the apple tree was actually killing the lilacs; it was just too crowded. I took out the apple tree since it never bore fruit and I focused on the lilacs. Now, most people who read this will know that a lilac is a bush; I knew it... but mine had become a lilac tree. I was so tall, you could barely see the blooms. It took a friend looking at it to point out that I needed to prune it harshly in order to get it back to being a bush, to push the green down and allow the blooms to really flourish. Yesterday I took the tree trimmer and I went after the lilacs. As I worked and cut I felt like I was killing it, All the branches were falling at my feet and my heart was so sad as it got more and more bare. Now, sitting below the lilac is a fairy home, in the lower branches hang fairy lights and beaded suncatchers, glass bottles with lights also hang from the lower branches in an attempt to add magic to the garden even after the sun goes down. It is a pretty spot. When I stood back after my extreme pruning I saw all the bare spots and sat on the deck contemplating it with both sadness and hope. Then I had an epiphany.

It is an age-old analogy, but pruning a tree to give it more health and beauty is necessary. Pruning humans will have the same results. My lilacs were really pretty, I enjoyed them, they bloomed each year, but they were not what they started out to be. They were meant to be a bush, they started as a bush but time and neglect had turned them into a tree and it was getting so tall that the beauty was becoming more and more difficult to see each year. It took someone reminding me that it was actually a bush for me to finally realize I needed to do something about it. 

Last November when I sat in my doctors' office and answered the questions she asked me it was like someone pointed out that I was not a tree, I was actually meant to be a bush and my beauty was becoming more and more difficult to see because I wasn't who I was supposed to be. The pruning process is hard, it hurts, it's left me bare, I may be hanging a few pretty lights and beads on it to look okay but the reality is that it's an ugly process. Some of the questions made me remember who I was, the person I was before all the years of struggling to keep my head above water, and I was shocked that I had forgotten that woman, that she had become so distant that I could barely remember being her at all. I have neglected her to focus on more pressing matters but it's springtime and now I need to prune her, or God does at least. 

As I sat on my deck looking at my poor bare lilac I began to have hope, because the promise is that all that pruning will bring even more green branches and blooms next year, and the beauty will be more visible, and even more the year following that. It was killing a tree to bring back a bush. 

As I sift through the last 11 years I realize that I have a lot of pruning to do, cutting out the internal voice that has been lying to me, the fears, and the anger that has gone so deep into my roots that it spreads into all areas of my life and just leaves a deep sadness that needs to be sorted through and cut out, and that will take work, sweat and tears, it will leave me bare for a time, it will feel ugly for a bit but with time my true self will begin to show herself again. I will once again bloom and be visible and known for what I was actually intended to be.

known

After taking a bid deep breath yesterday I closed my eyes and hit send and my post went live; having opened up I felt raw and exposed and very very nervous about the possible response I would receive. I didn't want to look at the responses that I was receiving, the texts, the emails, the messages on Facebook because the bandage being ripped off my silence left me feeling so exposed. I have to admit that when I finally did look; when I finally opened the messages I was so comforted by the responses I read. So many people who are in similar spots, so many people with the same struggles, so many people who offered comfort, prayers, love. I am realizing how little credit I have given the people in my life and the world in general. It all seems so silly really, given I know myself I wouldn't think less of someone if they told me what I told you yesterday.  Thank you all for the love and show of support and acceptance. I needed that more than you can know. Sometimes I feel very 'unknown' and there is a part of me today, though still feeling rather exposed, that feels a little more known.

This is a journey that so many are on and while I take comfort in knowing I am not alone I find it a sad thought, to know how many others are feeling the weight of what I am feeling. Many people said 'you are not alone; I understand' and so now I say that to you. You are not alone,  I understand.

More to come, but not today. My brain needs a break today; I just wanted to say thank you for your kindness, compassion and gentle response to my post yesterday. It has helped.

L

Time to fight back

I haven't written in a long time, I have been putting off to busyness and time management but when I really sit and think about it I have to admit that I stopped writing out of fear. The last few months I have been trying to face some of those fears, trying to come to grips with where life has brought me and how I got to this point, this chapter. As I sit here I struggle with where to start because it seems like my brain is so full and trying to make sense of it all is hard for me. However, I have always found that writing, feeling heard and known is a source of therapy so I am going to start and let it flow.

In early November I finally found a doctor who was much closer to our new home and I went to meet her, I liked her immediately and had all my records sent to her and she became my new doctor. She had me come in for a routine check-up a few weeks later and as we chatted through my family medical history I told her all about the boys and their health issues. I guess she was listening to all that I was saying, and not saying because at the end of the appointment she asked me to fill out a screening test. It didn't take too much time but as I answered the questions I began to see a pattern, things that I kind of knew about myself but that I hadn't wanted to face and address. When I handed the test back to her she scored it up, looked at me and said 'do you realize that you are living with a moderate depression, and high anxiety? I wanted to cry because as she spoke the words resonated and I was both angry and a little hopeful. Angry that I was the way I was, and hopeful because someone recognized me, someone, who might be able to help me. We talked at length and she prescribed some medicine to get me over the crunch and she suggested I talk to a therapist. The problem was, I don't talk to people about how I am doing mentally, or if I do it's 'Im good, I've got this, I trust God'; all of which is not untrue but it doesn't cover the whole truth. Therein lies my fear in sharing this post, in picking up the blog again. Sharing with you my deepest fears and admitting the absolute truth is not easy, but it also means that I have to also delve into some painful areas of my life that up until now I have safely avoided (or at least ignored until I couldn't anymore. )

Tim and I were talking last night and he was trying to get me to open up with him about it all since I am still resisting therapeutic help he reminded me that he's been a pastor for 15 years and has a little experience. He asked 'do you ever really talk about this stuff with anyone?' and I had to admit that I don't. Writing has always been my way of working through my thoughts, and so it was him to got me to a place where I am now sitting here writing this post.

Over the last winter, I have been struggling to understand my mental health and figure out how I got here, and where to begin in finding healing, coping strategies. I have also struggled with deep shame and sense of failure about it all.  Shame and failure. Just admitting that brings embarrassment.  Throughout the last 11 years, I have heard so many times about how well Tim and I have handled what we have gone through with Joshua. People continuously tell us how strong we are, how they admire the way we have coped... having to sit here and tell you that I am not strong, that I haven't been coping brings a deep sense of shame; and failure as I know this post will let people down. I also think back to those days of pregnancy after the diagnosis when God told me 'Be strong and courageous' I have failed there too. I want to be strong, I put on the smile,  I am pretending.

As the winter wore on it became clear to both Tim and I as well as my doctor that I am suffering from PTSD; I get it, my brain understands it but it makes me feel weak, it makes me feel like I am whining just saying it out loud and so I am stuck in silence and I haven't been able to move. There just seems like so much stuff to work through that I don't know where to start and so I take my pills and I try baby steps but then I slip and anxiety overwhelms me and I go back to hiding.

I don't want to hide anymore. I am tired. I want to let go of the shame, I want to be the honest person that I have always claimed to be on this blog. I don't want to let more people down, I want to do what God has called me to do, I want to be strong, I want to be courageous and so here I sit. Coffee beside me growing cold, a sore throat from fighting the tears that both threaten to flood me but also cleanse me.

This is not going to be worked out in one post; this will most likely be a series of posts as I allow you to join me on my journey back to myself, back to wholeness.

Thanks for reading, and listening.

L

Warrior child

Photo was taken last week

I was worried this afternoon.

In a gym with about 10 kids and two karate teachers, I listened as the sensei asked the kids to start the warm-up. First they had to do sprints, no biggy. Then they had to run sprints and touch the line, again no biggy, then he said I want you to run sprints and when you get to the line I want you to do 10 push ups... my gut twisted and I looked at Josh who was so focused that he didn't see my panicked look of concern. Lets just say Josh is not my 'co ordinated' kid; with a weaker right side and high muscle tone things like athletics don't come naturally to him. I quickly looked at my phone and tried to make it look like all was well but I was worried. Does he even know how to do a push-up? Does he have the arm strength to do this? I can see he's already winded from all the sprints, what if the warm-ups become the sticking point on what could be the perfect sport for him?

The kids lined up on the white line, they crouched and waited for the go signal. 20 eyes all set in one direction; I was only watching two of them and they were focused, clear, determined. I held my breath as the sensei yelled GO, and I watched as Josh sprinted past the younger kids, then past the tallest kid in the group, then as he slid to the first line I moved to the edge of my seat as quickly as he slid into the push-up position. One, then two, three, four... all ten perfect push-ups and before I could gasp for the breath I had been holding he was up and sprinting the next line to do it all again. I swear I was beaming, and my throat hurt from the lump that formed there. When he was done three sets he sprinted back to the start line; his smile said he knew what he'd done, and when he got to the line he looked at me with a shy "I'm too cool to want my Mom to show me how proud she is of me but I am still young enough to really care what she thinks" smile. I nodded at him and smiled in an"I'm proud of you but know that I can't jump up and run over there to give you a giant hug because you are nine and that would embarrass you' kind of way. It was a silent understanding that passed between us in that quick meeting of eyes, an acknowledgment that he has been aching for in every sport he tries. He wasn't last, he wasn't second to last, he was almost the first kid back to the line and he knew it.

As I sat on the sidelines watching him I saw the warrior child I have seen so many times in the hospital, or when facing something very serious or painful or scary. He had his "this means war" face on as he learned the punches and kicks and bows, where to place his feet, how to hold his arms, how to make a proper fist; and his attention to detail was noticed and commented on by his sensei who patted his back on the way out and then came over to chat with me about how great he was.

I was proud (to put it mildly). We have worked so hard, come so far together and while this was his success alone I have to admit I was just as anxious, just as out of breath, just as proud as he was. He has so longed to find a place to fit, a place to put his competitive side and not be crushed in defeat and today he rose to the occasion and he was shining.

For those of you who follow this blog (dwindling as it is because of my lack of writing lately) you will know that last spring this was something we were all praying for, a moment like this for him and I was very aware of all those prayers today when I sat on the sidelines watching God answer them.

Thanksgiving gift that keeps giving

Today in my memory app there were obviously a lot of posts about a special young man in my life, a sweet little Kaper who happens to be our Thanksgiving baby.  Each post went something like "I can't believe my baby is one already... WOW, Kaleb is already 2,  where have the years gone, Kaleb is no longer 3,4,5,6 and today, he's no longer 7. I shouldn't be surprised, each year I someone look at him and feel surprised that he's taller, older, more articulate, but that's life really right? The thing is, he's my baby, my youngest and last;  and it comes home with each year older he gets. There is something else that happens each year though, this amazing transformation of the baby, toddler, boy... a human who I have the absolute pleasure of watching emerge as a man. I watch him and feel so much pride in the person he's becoming. The kid who stops playing if someone is hurt and runs over to make sure they are okay, the kid who prays for peace when his friends are fighting, the kid who hurts when the world hurts, the kid who finds every bug, no matter how small and wants to bring it to me as a gift, a show of pride?, (maybe it's like a cat with a mouse? - still haven't figured this one out as I HATE BUGS) the kid who can be causing trouble while smiling at you and with sparkly eyes tell you how much he loves you so that it's impossible to be annoyed about the mess.  The kid who comes with me on a photoshoot as my assistant and manages to calm the clients, ease the tension they feel, find the perfects spots for shooting, and manages polite conversation like a pro.  This kid is going places, I just can't wait to see where.

Today as I reflected on his birth with him, I reminded him about how he was our gift from God for Thanksgiving; so that no matter what happens in life we will always remember to be thankful for the gifts we have been given and I was taken back 8 years ago to the moment when they took Kaleb out in the OR and put him close to my face, he sucked on my nose and my heart grew to  a size I thought impossible. The hole in his heart that they feared was there was pronounced healed and the pediatrician in the room looked at me and announced that he was a healthy baby boy. What a wonderful gift, what a beautiful memory. I don't have many memories from that day, I was pretty sick and some of my memories are mixed up or just stories that Tim has told me to fill in the blanks but those two memories are clear as day, I can still see the doctors eyes look into mine as he made his announcement and I can still see little Kaper's eyes as he sought me out, like he knew deep down that I was his Mama and that he was home.

There will never be a time when I don't wonder that they two amazing little people came from my body, there won't ever be a time when I don't realize how blessed I am that God is working in their lives and is there to help me raise them, there is never going to be a day that I breathe on this earth that I don't love them with everything in me, that I won't fight for them and pray for them and move heaven and earth to be the best mama I can be for them, even if it hurts.

Kaper,

I am so thankful for you, for your life, your heart, your passions, and joys, for the love that you show to each member of our family, for the wonderful conversations and bountiful snuggles. You cheer me, you encourage me, you take interest in me the way most children don't with their Moms. I am so fascinated by you, and genuinely interested in the person you are and will be. There is no way for you to know how much I love you until you have kids of your own one day but I do, so much. I want to wish you a happy birthday and to say thank you for the joy, the laughter, the love. You are truly a wonderful gift!

Happy Birthday! All of my love,

Mama xoxox

His decision

When the boys were babies we had a choice to make regarding whether or not we would have them baptized or dedicated; I had been raised that you had a believers baptism and when you were old enough to decide if you wanted to follow Jesus then you made that choice on your own; Tim was baptized as a baby and saw both sides as equally relevant so he didn't have a strong opinion either way, or at least he went with me on my preferred choice and together we stood before God and dedicated our boys to him, promised to raise them to know the Love of God and to understand his call to his followers. We took a lot of flack over our choice as it's not the typical 'anglican' way; we heard all the arguments and were even told that Josh wouldn't be so sick if we had gotten him baptized. However, I was sure of my convictions and we smiled at the nay sayers and did what we felt was right.

This past summer year and I have been reading the Bible together, as we worked our way through the New Testament this summer Josh was presented with baptism multiple times and he had a lot of questions about it; we had a lot of talks about the gift of Jesus and what it means to follow him. In early September the conversation again came up as we finished the Bible (and started it again as per Josh's request). As we chatted I asked him if he would like to think about getting baptized and again we had more talks about what that looks like, what it means. His biggest concern was that he didn't have enough faith yet. (Big smile here because if I had waited for enough faith I never would have been baptized). He said he wanted to think about it and I did the hardest thing a parent ever has to do, I sat back and let God work in him. I resisted the temptation MULTIPLE times to ask him about it, or talk to him; instead, I waited.

On Tuesday night Josh called me to his room to listen to a story he had on the audiobook. It was about a little girl who was running away from God, but he was pursuing her and using people to show his love to her. In the end of the story, she decided that she wanted to be a Christian. At the point of her decision, Josh jumped up and stopped the CD player with a big smile. I have to admit I was confused. I asked him what it was about this story he wanted to share with me and he replied 'I like that God loved her and she was running away but he kept showing her he loved her and then she chose to be a Christian" I smiled and agreed that it was a nice story and then I asked him. "Do you want to be a Christian Josh?" and he smiled so big it lit the room. "YES"! I want to be baptized and I want Daddy to it!".

I share this because I am so humbled as I am once again reminded that the Holy Spirit is working in my kids, he and Josh have been working together to come to this choice and I am so happy for him, and so thankful I didn't keep pestering him about it. When we started out by making a choice to dedicate over baptize it was so that this moment could come, where he made that choice on his own, not for Tim and I but for him and had I done what I really wanted to do (bug him about it consistently) he would have been doing it for me, or possibly not do it all just rebel against my harassment.

I am feeling really blessed as we head into this special celebration with Joshua. God is faithful.

Happy New Year!

Most people see January as the first month of a new year; rightly so I suppose since it is the new year after all. However, for me the new year traditions always come in September; maybe it's the years of starting school in september and always being told about fresh starts with a new teacher or new school etc. Whatever the reason I have never shaken the habit of seeing September as a place to rewind the things that need rewinding and starting fresh again, with new plans, new hopes, new goals. I always get my new agenda in September and when I see those crisp clean pages I feel a fresh beginning stretching out before me.

During the summer months I had time to think, time to refresh and what I found was a sense of lacking, a feeling of loss or complacency or maybe both. I couldn't figure it out, I was both sad and frustrated and I yearned for more but I couldn't tell you what that was.

The other day I watched a movie on Netflix and while I was watching it I was hit with a realization; it was a spiritual thing. My longing was for more joy, more closeness with God. My feelings of loss came from that lack of time spent with him; and my sadness was the missing of that closeness we had.

One of the things that became apparent quite quickly was that for me, writing is a way of sorting out feelings and thoughts, it helps unscatter my brain and figure out what is actually going on up there. So, here I sit. On the abyss of something absolutely wonderful that is to come. Starting to once again spend time each day, proper time, not just throwing prayers into the wind as I move from A to B. Time where I pray for my husband, for my kids, for my friends, for my church and for the world. Time where I share my thoughts and worries, fears and disapointments, hopes and dreams with the God of the Universe who made me for relationship with him. Already I am seeing him, like scales falling off my eyes I have begun to once again purposely look for the ways in which God is working in my life and the life of my kids and it's fun.

The other night Josh was praying for rain and cooler weather and I was quick to correct and tell him that God isn't Santa, you don't hand him a wish list and walk away... (which is true yes) but I quickly learned so much more about God and relationship when God gave Josh exactly what he had been praying for. It poured yesterday, I mean buckets, in between were sunny periods and then more rain, and it was cooler. When the kids got off the bus after school Josh was screaming "God answered my prayers!" and Kaleb was screaming "It's Josh's fault mama, God answered his prayers!' (When I say screaming I really mean it, the whole of the distillery district probably heard their proclamations of answered prayer. I laughed and we chatted about it, because here is what I learned.

1) God wants to hear from them, whatever they have to say, whatever their worries are, whatever their desires and while I need to help them learn I shouldn't try to control that budding relationship they have with Him.
2) God uses the littest prayers (like rain and cooler weather) to build a foundation of faith in the lives of his children.

I was so happy to see that rain yesterday, despite hating that it actually did rain, I was happy that God loves my kids so much that it matters to him that they believe in the power of prayer, and that they learn that their voices, their thoughts, matter to the God who made it all.

What a beautiful rain...
What a beautiful September...

Happy New Year.
L

opened the door and light came in...

Took a pie to his face at the carnival yesterday

Sometimes the answer is in the knowing. You wander around looking for a door in a dark hallway and keep stumbling into walls, hands in front of your face, you get tired, frustrated, scared, and usually bruised. Then, someone tells you, 'You are in a dark hallway' and suddenly you know that if you just walk straight ahead you will come to the door and find your way out. It's still dark, your hands are still in front of your face but you walk straight, feeling a little lower for the door handle and before you know it, you find the knob, turn, and light falls through the open door filling all the shadows and taking any fear away with it.

When the doctor told us that Josh was dealing with a depression it was like someone came along and whispered the answer in my ear, it was still dark and scary but I knew the path we were on and somehow that gave us the direction that we needed to take in order to help our son. The changes that have occurred have been significant. Last week the door opened and sunlight poured into that hall, gone are the shadows and darkness, there is so much light ahead.

Let me share what changed.

I won't lie to you when I heard the doctor tell me what was wrong I felt a lot of powerful emotions. I was scared, I was exhausted by what seemed like an insurmountable situation. I was so incredibly sad for Josh, and as a mother, I felt like I had somehow failed him. There were a number of things going on that has resulted in what is being called a 'circumstantial depression'. There was the new realization that his body has limits, and a deep sadness that came with that realization as he is navigating what that means for him now and in the life that he has planned out for himself. There were the kids at school who were being mean to him due to his limitations, tiredness, and honestly his anger at the feelings he was struggling with. Then there is the part where I come in. As a result of the stroke, Josh has ADHD (a rare kind that initiates in the central temporal lobe of his brain). He is on medication to help him focus and it has changed his life and ours as a result; however, it is a tricky medication because when the dose is wrong it messes with his seizure meds and he is at risk for break through seizures. I have noticed for a while now that his focus hasn't been the same as usual for a few months but if I am honest I didn't want to mess with his doses since I am terrified of him having more seizures and it took us so long to get the meds all sorted out for safe levels. I lowered his sugar intake drastically (much to his horror) and stopped all chocolate after lunch (again, this is a totally unwelcome change for Josh). The attention didn't get better and in fact, it was much worse. We would ask Josh to do the simplest things and it wouldn't get done, going anywhere with him was an exercise in frustration because he was more often than not in his own little world and would wander off, bump into people, or just generally drive us crazy with his total lack of focus in whatever activity we were doing. Tim, Kaleb and I were constantly annoyed and frustrated and I feel like we must have said 'Josh, pay attention' at least a thousand times a day. Josh's teacher also began having trouble getting him to accomplish his tasks at school which meant that at the end of the day when the kids were all done and playing games at their desks Josh was forced to continue his school work. All these things, all this negativity were his constant companions since January at least. It is no wonder that he internalized it all and began to slide a slippery slope into childhood depression. For my part I felt like the worst kind of Mom, and I had no idea how to make things better for him apart from a med change and a patience check every time I had to repeat instructions.

I began by saying sorry. That was the easy part; I sat him on my lap and I told him I was so desperately sorry for the part I played in the negative things in his life. His simple and easy forgiveness was a humbling experience. He seemed happier to know that I was promising to change, it was enough to know that I acknowledged his sadness. Then we talked. A LOT. We talked about the kids at school, we talked about praying for them and forgiving them, we talked about his limitations and how to engage them when he was feeling frustrated. It didn't change overnight and I literally prayed every time his name came to my mind. It was a simple prayer "I don't know how to help him, I can't do this for him but I know you love him so I need you to step in and do something for him". I was expecting God to give him a new friend, or change the hearts of the kids around him... but I wasn't expecting the answer I got.

I had a long talk with Josh one night about what happens at school and realized that it was really the afternoon recess that he struggled with the most since by then he was very tired and unable to keep up. We talked about not needing to play with the kids he knew, that he would be able to play with the kids who looked like they were doing something he would enjoy, or he could look around for a kid who was alone and ask that child if he wanted to play. Then we had a chat about how everyone has limits. Some people have a natural ability to do things like sports while others have a natural ability to do art or music or were naturally gifted in academics. We discussed that there were three main types of things in life.

1) There are some things that you will never be able to do. Sometimes you have NO SKILL or TALENT do something (and honestly you usually don't like doing that anyway so it doesn't matter) I for example can NOT do math. I hear a number and my brain freezes. No lie.

2) There are things that you are not naturally good at but you enjoy it. These are things that you need to work for, practice at, struggle with. I shared with him a story I once heard Ed Sheeran share about his music ability. He used to suck at it (really, he shared a recording of himself singing and it did suck) but he wanted it badly enough that he worked hard to make it happen and seriously, look at him now?!

3) There are some things that you have a gift in, things that come easily and readily for you, things that you do that some people can't.

I told Josh that while he was not naturally gifted at sports, he was good enough that if he practiced at what he enjoyed (baseball and a soccer goalie) he would become good, and only get better the more practice he put into it. Then I told him what I have known for a long time. He is naturally gifted at school. He's very smart, his teacher called him a math whiz and he's already ahead of his grade in math. He is also now at grade level in reading despite all therapists telling me that it would take him years to catch up because of the language center of his brain being affected by the stroke. By the time our chat was over I felt I had been lecturing him and he probably didn't hear most of what I had said... but the power to fix him was intoxicating and wanting to 'talk the problem better' was my way of making it go away. I finally said good night to him, gave him a kiss and silently prayed again that God would step in and do something for Josh.

The Saturday before last Tim and I had Josh to ourselves, we had errands to run so we took him with us and Josh was bored so he picked up Kaper's book which was left in the car and he was reading it. As we walked through the Man Depot and Sobey's Josh trudged along behind me... READING. I didn't make a big deal about it, in fact I didn't say much at all because I didn't want him to stop doing it. It was such a pleasure to see him actually choosing to read. When I tucked him into bed on Sunday night he mentioned a book that he had seen at school that he was hoping he would be able to get the next day, again I just nodded and smiled and didn't get too extreme afraid that it would put him off.

This is where I learned (again) that God answers prayers in ways that are best, not the way we may think is best, but what he KNOWS is best.

On Monday Josh came off the school bus holding up his new find, the first book in the Amulet series, he was beaming from ear to ear. His day, he said, had been fantastic. When I asked what made it fantastic he simply pointed to his borrowed book. He ran off to play and I went to make dinner. That night I had to ask him four times to turn out the light because he just couldn't put the book down. The next morning Josh told Tim 'this book has changed my life' and let me tell you something. It really has.

He has taken control back on the play ground. In the afternoon when he knows he's too tired to play he takes his book to a tree near the back of the school ground. A tree that he used to call his 'sad tree' and he sits there and reads. He no longer feels left out of that recess because of his limitations, he no longer worries about the kids telling him he can't play with them because when he's most tired he is making the empowered choice to not want to play with them. Since September Josh's Grandma has been keeping a tally of books that he has read, telling him that when he gets to 10 'proper size' books he will get $25. As of last week he was sitting at three books. Today the tally sits at 8 books. He did something last week I never thought I would see him do, he used his lego money to buy two books in the series, and thanks to some very generous people he is now the proud of owner of the entire Amulet series (book two is still enroute).

Yesterday I watched Josh from a distance while we were celebrating Little T's 175th. I was taking photos of the event so I saw him through the eyes of a photographer and not just his Mum. What I saw was a different child from the one living in our home for the last few months. He's engaged, where he was withdrawn, he's energized, where was exhasted, he's focused (in part due to med increase) and he smile was brighter than the hot sun we got to enjoy yesterday.

Sometimes the answer is in the knowing; knowing what the problem is that needs to be faced. Knowing the needs that need to be met. Knowing the probelm that needs to prayed for and the times when you need to hold, love, and nurture the problem; but sometimes God has a much better idea for how to work out a problem than we do and we need to step back and let him work. Josh will still have to learn to live with his limitations, he will still have to deal with his feelings, there is still work do but I was reminded this week of a few things, he is loved beyond measure by the God who created him and has a much bigger plan for him, by a God who knows how to help when I can't, and who is building him into a man who is ready for the future that He has in store for him. Knowing that, sometimes it's okay for me to step back and let God figure it out when I just can't. It's not my job to fix every problem the boys find themselves facing; it's my job to teach them to turn to God, and it's my job to pray for them daily, to seek his wisdom and guidence when it comes to the choices we make regarding them.

I also learned... I don't altogether suck at this mothering thing. Apparently I can't fix everything but I can hold them and love them, and sometimes that is all I am needed for. God has the rest.

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.

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

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. 

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

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

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.

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.

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.

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. 

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.