Photographs by Laurie @ Horizons Photography

September 8, 2017

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

June 12, 2017

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.


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.