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.

The 'Could be's'

Tough comes to mind, tough and yet fragile. Strong, and gentle, kind and cheeky, worried and hopeful, a really complex array of contradictions that make up one amazing kid. I can't say little boy anyway, that dawned on me today... he's not so little these days. I won't reminisce this year, there has been enough looking back for me about this amazing child, he and I are looking forward, planning his future and dreaming about all the 'could be's' in his life. Right now his big plan is to rescue animals and help them get better, particularly the babies who've been left without a Mummy or Daddy to care for them. Every day it changes but there is always a consistent thread; his desire to help; his hope for a better future; a better planet, and a happier 'human'.

Each night when he says good night to God he makes sure to thank him, and each night he tries to thank him for different things. It ranges nightly. Once he thanked God that his brother had gone out that day and he didn't have to listen to him; another time he thanked him for having a brother. Sometimes he thanks him for nature,  for the earth, for peace, for a home, for breath. His thankful heart, his enduring spirit, his witty sense of humour have served him well and promise to help him as the journey continues.

It has been 8 years since we welcomed this little man in our home, into our hearts. 8 years of lessons and love and hope and beauty and this amazing proof that God answers prayers. His quiet soul has been held in his makers hands and Josh's peaceful heart is the evidence of that encounter.  I am so beyond excited to watch him grow another year older, another year taller, another year wiser...

Happy Birthday Joshua! I am so proud to know you, even more so to call you son. Daddy and I love you more than you can ever possibly imagine; we along with Kaper are so incredibly glad you are a part of our lives. Hugs to you Mr. Man... (I won't say kisses, I know how gross you find those) :D

Love you,
Mummy

a tiny view into my life as a pastors wife

Before I even start this post I need to place a disclaimer:

This is not a post about our church or anything to do with our church. I absolutely love the family of believers that we have joined and feel blessed to be a part of this amazing community. 

This is a post that has been banging out about in my head for years and Ive never had the words to properly express how I feel about it. It's a post that I have worried would be taken offence too so I chose to remain silent... but today I have the words, and today I am not worried that it will cause offence because I think for the average person reading it you will see that it is simply a call to awareness, not a pity cry, not a fishing rod sent out for words of encouragement. It is simply a glimpse into life as a pastors wife; into a pastors life.

In the church, (again, this is the church in the greater terminology not one specific church), when a person is dealing with difficult times, when a person needs comfort or help or prayer or guidance; you turn to your pastor. You seek someone who can lead you forward and help you see things from a new and different perspective. It's a beautiful relationship really, one that I have called upon many times in the past when I was struggling with things, or when I needed hope that only a pastor can clearly offer (and offer in confidence). It's not simply turning to a friend, it's like seeking counselling and you know that this person loves you, loves God, and desires the best for you. You also have a deep trust and knowledge that this person (your pastor) will keep these deep and private thoughts to him/herself.

What I have come to realize in the  last 9 years of marriage is that for a pastor, there is no pastor. A pastor and his family have no such person to turn too. We struggle along the best that we can and when things go wonky there is no objective, loving person to offer guidance and hope and direction or even just to offer up a prayer with us. Being a pastors family can be a lonely place and with no one there to really turn to is there any wonder that pastors burn out? It strikes me as sad that there is no appointed pastor to pastors or pastors wives. Even for the mundane things that sometimes just need an outsider to give clarity too... It grieves me. (This is not a pity post! I am fine, we are fine! I really want to stress that. It is simply as I said, a call to awareness of life with a pastor; because sometimes we aren't fine. Sometimes we need someone to pray with us, to offer advise, to give what Tim is used to giving. Objective, loving, confidential counsel from, not a friend, not a family member but a pastor.)

I am not sure that the general population fully realizes the loss until they find themselves in the situation and that is why I thought to share this today.

wait for the scar

Sometimes healing is a quick and painless; a cut that stings but quickly clots and scabs. Sometimes though it is a festering wound, one that needs time and treatments; painful treatments. I once had a burn on my leg from a heating pad. When I woke in the morning my leg stung and had a red sore, I bandaged it and went about my day. That night I discovered it was blistered, I re-bandaged it and went to bed. A few days later the blister burst, again I put on a band aid. Days, in fact weeks went by and that leg got more and more sore, until finally putting any weight on it at all caused me pain. Finally in an attempt to figure out the problem I was forced to give in and see a doctor. He explained that the burn (though it had seemed small and inconspicuous at the time was in fact a third degree burn which had ulcerated on the bone. To heal I would need to take special pains to clean and care for the burn. Twice a day I had to peel off the white scab that was trying to form and wash it clean before I put another bandage on it. It was painful and quite honestly took a large amount of strength and courage (I prefer to ignore painful things if I am honest, and hope they somehow get better on their own). As the days wore on and I stuck to the twice a day cleaning I began to notice changes, the redness eased, walking became easier, and slowly I could begin to see the ulcer as it rose from my bone to the surface. When the ulcer finally surfaced my leg was able to scab up and heal properly.

Healing, emotionally sometimes feels much like that ulcerated burn. Sometimes peeling back the white scab of the raw infected wound is almost more than you can bare and yet it is the only way to really get health back. Old hurts, the ones that are caused by those who you love most, the ones that should be there for you when it matters most but aren't, those are the hurts that most often leave the ulcers on the bones; and they are they are the ones that we too often just bandage and leave alone to fester, those are the ones where infection thrives. Wounds like that take time, they hurt, healing comes at a cost.

I look at my leg now and I see only a scar, a reminder of that little life lesson I have learned along the way... Sometimes I just touch it and remember that there are times in life when you have to take the bandage off and deal with the wound; even if it's only between yourself and God, even if the person who wounded you isn't here to or is unwilling to say they are sorry, even if you have to quietly just say to God 'I choose to forgive them today, and I will have to do it again tomorrow.' As the days of saying those words move forward you one day wake up to realize that the ulcer has reached the surface and all that is left is the scar.

Here's the thing...

Here's the thing. It was a crappy week right? We are all tired and not feeling wonderful and we are running a range of emotions... BUT. We have it pretty good.  I spent a few days feeling sorry for us, sorry for Josh, sorry for me, sorry for our family, but this morning I was walking the dog and I passed a man sleeping on the cold wet ground, I saw a woman who was sitting on the corner asking for change, and as I made the final turn to head home I saw a young man being arrested. As I finished the last bit of our walk I looked at our situation with new eyes.

Things could always be worse. In the grand scheme of things even the hardest things we have faced as a family are first world problems. Yes; even the stroke and heart problems. Here's why; we are situated in a city that houses the best children's hospital in the country, second in the world. Our teams of doctors are the top medical minds, the same minds that train doctors from all around the globe. We don't have to wait for someone to travel overseas to see us, we don't have to pray bombs don't destroy our hospital today, we don't have to worry about the impending bill that is inevitable in some countries. We don't need to worry if our insurance thinks a procedure is 'elective'.

Sometimes putting things in perspective allows you to see how great you have it, instead of thinking about the crap you are going through. That was me this morning. I woke up still tired, but as I walked past the man sleeping on the cold pavement I was reminded that I slept in a warm bed last night. I grumble A LOT if I don't have enough coffee; but as I passed the woman asking for change I realized that I had coffee in the house, I didn't need to ask people for the change it would require to go buy it. I thought about the health concerns, impending surgery, the fears and I remembered a night in the ICU with Josh when a doctor from the states was telling me that the procedure that had literally just saved Josh's life was actually considered 'elective' in the states and insurance would never have covered it there.

It (for me) is a daily struggle to take time to put things into the right perceptive, this week has been no different. Life sucks sometimes BUT it can always suck more so I need to be thankful for what I have, remember the things that could make this harder, count my blessings that my kids are safe, alive and have amazing care when they are not well.

Scare

As most of you know by now Josh had a stroke when he was a baby... 3 months old to be exact. At the time we had no idea of the implications of that little clot... not a clue as to how it would change all of our lives. After years of worry and fear and anxiety and hopelessness and in the last few years even joy and relief I can now say I know exactly what that means... and it terrifies me.

Yesterday I got a call from the school that Kaleb had a headache. I picked him up but the truth of the matter is he seemed fine to me. Then I got a call saying that Josh had a headache and tummy ache and could I come get him. I packed Kaper into the car and we went to get Josh. When I got there I learned that it wasn't just a headache. When the teacher looked at him he was flushed and his eyes were watering, she asked if he was okay but he found that he was unable to talk. The teacher called for assistance to get him to the office and the teacher that came to transport him reported that when he could finally speak he seems disoriented, confused and was repeating his words. His head hurt, and his tummy was upset. You can imagine that the first thing that came to mind was a stroke. I bundled him and Kaleb up and we went to Sick Kids where Tim's Mom met us and took Kaleb for me. After a long and quite frankly very scary wait we learned that Josh had a focal seizure in the sight of his old stroke (in the scar tissue). SO... while it sucks (this is a new type of seizure for him) it was NOT a stroke and for that I am so thankful!

This has been a week I would have preferred to skip, the boys have been tired, Ive been tired. Josh and I learned on Wednesday that he needs to have another his eye surgery (his right eye). He was visibly upset for good reason, it was a horrible surgery for him last time. He's also got fluid in his ear causing him trouble (they believe that it helped to cause the seizure). Kaleb has been showing signs of stress about Josh and if I am honest I am so tired I think I am running on fumes. It's just been that kind of week.

There's a lot going on, but through out I have been blessed by all the notes and emails. Thank you for your prayers and shows of concern.

Last year and today.

It is a new year...

With new years I often stop to think about the past year and all the blessings that we have seen in our lives, and sometimes I thank God that the year is over and we can start fresh and hope for a better year to come. This new years I was sick... Ive been sick for over a month so I haven't really stopped long enough to dwell on the last year, or to explore the blessings.

This has been a year full of so many amazing things, and so many tough things as well. Looking back I realize that it seemed like 730 days, not 365. So much happened, good and bad, hard and easy, fun and hard, stressful and carefree. I don't want to dwell on the bad things and the blessings are too many to be numbered here so this post isn't going to list it all and remember; this year I start with the amazingness that is already happening in 2016!

On the eve of 2016 I was anxious. We were days away from another ECHO day and I was worried about what the outcome might be. Josh has had his pulmonary valve for a record amount of time now. He usually rejects it within a year or two. His last pulmonary valve was placed in August of 2013, we have surpassed HIS sell by date by 7 months and as we prepared for the ECHO I have to admit I wondered... 'what if?'. The night before the test Josh prayed for his own heart, something I have always done but this was the first time he did it himself. He prayed 'Dear Jesus, make my heart work good tomorrow. You have 13 hours and 5 minutes'. He added a thank you and an 'I like you' for good measure and went to sleep comfortable in the knowledge that only childlike faith and innocence can bring, that God would do as he had asked.

The ECHO went well, the ECG was a breeze, and we were greeted warmly in the cardiac clinic by out nurse and cardiologist. The smile on our doctors face was an instant relief. I have gotten to know her well in the last 8 years; I have seen her face crinkled in confusion, I have seen her brows knit in concentration, I have seen her worried frown as she reads the ECHO report, I have heard the changes in her voice as she relates the findings to us. I know the voice for a good report and I know the hushed tones of a bad report. I have even seen her tears, and I have seen the hopeless and helpless ache in her eyes. I can take a quick look at her and I know exactly what sort of report I will get. So, on Wednesday when she walked into our little office I knew. Today is a good day.

Things have not 'improved' BUT, things have not gotten any worse either. Everything looks basically the same. The pulmonary valve is only slightly more leaky but still well within a range that he can tolerate. His new tricuspid valve (one of the worst and best parts of 2015) is holding well with almost no leak and together the two valves seem to be keeping the right ventricle from getting any larger. Since April, when Josh got his new valve, this is the only time in his life that the right ventricle has not grown any larger, in fact for a little while after the replacement it even got a little smaller.


I don't know what this new year will bring, I have begun to finally see that life is not to examined on an annual basis but on a daily basis. Was today a good day? Did I do my best today? Have I taught these boys well today? Where do I need to make adjustments? Where can I learn? What needs to change? What was the best part? What was the worst? Where did I see the blessings? Where did I miss them? To wait a year to do these things means possibly missing out on more than I ever want to miss out on. Life is fluid, every day is a moving target and something to be learned from. On Wednesday when we walked out of the office after being told not to come back for 6 months (we usually get told to come back in three months so this is really exciting) Josh looked up at me and asked 'So, God did it right?!'

Yes. Yes, Josh, God did it. He always does, he always will. The question though, the hard part, is seeing it when it's shrouded in the mists of tears and pain. Sometimes we miss it, sometimes he doesn't do it the way we thought he would, sometimes he chooses to say no, sometimes he we have to close our eyes, hold our breath and hang on. Sometimes though, sometimes he does it exactly as we wanted, when we wanted, how we wanted, and the only thing to do is look up at him and smile and say thanks. (Then, breathe a sigh of relief).

I have no resolutions for this new year. I only have one for today. I resolve to be more present with these boys. I resolve to love these men in my life (Tim I include you first on this list) to the best of my ability today. I resolve to lay down in my bed tonight and look over my day and say 'thanks', even if today sucks. (Which it hasn't so far) and I resolve to look hard so that I don't miss the blessings.  Tomorrow... Tomorrow I will have a new resolution, but it will be the same as today's.

Reality Check

I took the kids to beavers tonight, I have an impending cold, the kind that teases you for days before it really lets loose and parties in your head until you think it might actually blow your head up... I had a great coffee chat with a friend while the kids were in beavers and then I took the kids home and rushed them to bed so I could have time to myself... to feel sorry for myself with a kleenex in one hand and a warm lemon drink in the other. To 'entertain' myself I flipped on Netflix and picked a film called Blood Brother...

REALITY CHECK: I have first world problems.

This film is based on a true story about a guy named Rocky who went travelling as a tourist to India. While there he went to an orphanage and stay for a while getting to know the kids, after a set time he leaves to finish his travels but they all seem empty to him compared to those kids he'd left behind. He was faced with a decision. Adopt one? Forget them all? Become a part of their family and move to India.

These kids all have HIV/AIDS. He serves them with such love, unimaginable love, sacrificial love. There is one portion of the film that takes you through him caring over a sick child in hospital who he was sure was going to die. He worked tirelessly to make that child as comfortable as possible, to give him a 'special' death. The boy however lives to the amazement of all. He credits God, the doctors credit him.

I was so moved by the love in this film... especially in the world climate we are living in right now. There is so little love like this left it seems. Everyone is always 'picking a side' or being offended by a group, or hating based on bias, or killing in the name of religion, terrorizing millions of men, women and children... it's such a dark time.

Strokes me that we could all use a little bit more of this particular kind of love... it's the kind of love that moves people to change, the kind of love that offers hope, the kind of love that breaks down barriers and as in the case of that young boy... it's the kind of love that can save lives. It's the love that faces fear but does it anyway, it's the kind of love that is honest, painful, awe inspiring.

I see the suffering of the children living there; I think of our Hospital stays and the many comforts I miss as a result... and I am truly humbled. What we have seen, what we have gone through is absolutely NOTHING. It is, while hard and often scary, a first world problem. We walk around the streets of the cities we live in and we pass a millions blessings that we no longer see, maybe we never saw them to begin with because it's our way of life... Running water, nurses who cover us when we need a coffee, heck... even coffee makes the list of the thousands of things we take for granted every single day. Electricity? Wifi? Car? Ambulances when tragedy strikes? The list is endless, and we sit in our warm homes and complain about politics or how offended we are by Starbucks red cups...

I hope; I hope that one day someone can say that I loved well, that I was able to show love, that I will serve and serve sacrificially. That is my prayer, that I will choose love or selfishness.

I urge you to take the time to watch this film... BLOOD BROTHER... (on netflix) it was worth the hour something I spent for the eye opening.

They can overcome.

For most of Josh's seven and half years we have been told he has a language impairment and learning disability resulting from the stroke... he's heard it over and over again at multiple appointments... he's heard the doctors say repeatedly where is weaknesses are, and he's heard his teachers tell me over and over again where he's missing the mark... it's been a fact of his life; it's become a fact of our lives...

Last fall Josh came downstairs after only 4 days of school crying; he told me that he didn't want to go to school because it was 'too hard' and he 'can't do it'... he told me that he 'can't read' and that all the other kids are reading but not him... it was hard to hear him so defeated but no matter how hard we all tried his progress was painfully slow. His test scores for reading were quite low (way below his grade level should be - according to provincial standards, which is not necessarily achievable by the average kid if you ask me)...

When my Grandpa died we had to drive up north to the funeral; on the way to keep the kids from fighting I started asking Josh math questions... turns out that he can do double digit (carrying the 10) addition in his head, as well as subtraction... I made a bit of a deal about it because I was so impressed... The next day I noticed something different about him; he was wanting do math more and more, he kept asking me to ask him questions. That was when I was hit in the head with the truth of Joshua's life. I should have seen it before; but Josh has been hearing how he 'can't' do things from everyone, doctors, teachers, therapists, and even me when I am talking to the doctors and teachers... without even realizing what we were doing we were crushing his self-confidence. You hear you 'can't' enough and you start to really believe you can't.

So, I started that very day working to build that confidence in him. I talked endlessly to whoever would listen (when Josh could hear me) about how much his reading was improving, how his language was so much better, how the new medicine he was on was allowing him to do things he couldn't do before. I started telling him multiple times a day that he 'can' do it, that he 'was' doing it.

It has been a month since Grandpa's funeral, just one month. Josh is reading is getting so much better already, he's not where he needs to be, he's got a long way to go, but he's TRYING, and he's getting it, I can see his brain engaging and the code of letters is starting to click for him. Yesterday he started to try to read the signs on the way back from an appointment at Sick Kids... We were sitting in the cab and the taxi driver commented to him what a great reader he was and Josh's little face lit up like it was Christmas.

This morning when we waited for the bus I told him how proud I was of him, that he was getting so great at reading and that when Daddy (who has been a way for the week) comes home he will be so surprised with how far he's come... Josh looked at me with so much pride in himself, and then he came over and initiated a heart warming hug. It almost felt like a thank you. (I hug Josh so much that he never really initiates hugs; so to get one from him was a gift).

I got so used to the appointments where Josh is being tested for things (learning and language), appointments where he's present but often busy with a game or colouring, that I forgot he's taking in absolutely EVERYTHING we are saying about him; and he's taking it to heart. It should not have taken me so long to see this, to change the language we use around him from 'can't' to 'can'. It should not have taken so long... but I am so glad it didn't take longer.

If you learn anything from our story learn this: Words are powerful. They can break a spirit or they can make a person whole. They can defeat a person or build them up to be victorious. They can be heard even when we don't think the person is listening. How and when we use words to describe our kids will determine a lot of things about who they will become. It can't always be helped; these conversations sometimes need to take place; but balance is imperative; when the doctors/teachers are done telling them what they can't do, you need to step in to tell them that they can, and you need to help them believe it. The change I have seen in Josh in just one month is proof that self confidence in a child, believing in themselves, is a huge part of the battle and it will determine if they win or lose that battle.

The wonderful thing about kids? They bounce back; they overcome.

pause the chaos

It is an interesting thing when you set traditions... we started one a long time ago when Kaleb was just a year old; one we didn't know we were setting but has turned into one of my favourite things to anticipate each year. When he was one and Josh was two and a half we dressed them up in their costumes and we drove to our friends house where the men took the kiddies (five in total) around the streets for halloween. Kaleb in his stroller as Tiggy and the rest racing around banging on doors and begging (very sweetly) for any treat they might have. Every year I get a group photo (some years were a trial with four boys and a young lady). Each year I look at them and remember what they all looked like the year before and I can't get over how much they have changed; how much they have grown. I look forward to seeing them grow; to seeing how long we can keep this tradition alive before they would rather go trick or treating with their friends. 

There is something so magical about childhood, as they get ready to go out, as the anticipation amps itself up and the thrill of being outside on the dark streets comes to it's brimming head I can distinctly remember what that feeling was like. Then the return; when you get to show mum all that loot! The inevitable 'sorting' of the candy where in our house we check for all the scary things my parents used to check for but also for any peanut treat. (Sometimes when it's something Mama really likes she finds things on the label written in invisible ink - glad he can't read yet). It works in our favour that Tim and I are known to take a week holiday to ourselves following halloween so all those peanut butter cups manage to find a home in our suit case.

This year as I watched their rosy cheeks return, when they picked up their over flowing bag and tried to hug it to themselves because it was so heavy I was overcome with how fleeting this thing called childhood is. The little lady I talked about, the only one in a group of four boys, looks so much older this year, Josh too is getting so tall and grown up. It's hard, when you are in the thick of it with them to stop and appreciate the moment for what it is. It's hard to watch the chaos and not sit in it for a few seconds and just enjoy it. It's life's fluidity I guess but it seems like only yesterday that I was the rosy cheek little girl clinging to my own over stuffed bag of candy waiting for my Dad to remove 'dangerous' items that he would sacrifice himself for me and eat on my behalf.

May you each have a really wonderful November and try to pause the chaos long enough to enjoy it for what it is... a very precious memory.

L

missing you

I remember walking along the beach for hours with my Grandpa... we would catch tadpoles, watch the waves, make sand castles, dig to China, skip rocks, smash rocks together and break them to see what treasure lay inside them... the hot sand on our feet made me skip along until I reached the water and there I would hold his hand and we would splash our way to the store further up the beach. He would buy me a treat, often a popsicle, and then we would make our way back, sticky melting sugar water making a big mess; but we didn't care. We talked, though I can't remember what we talked about. Now that I have children of my own I can imagine that the conversation was about everything we saw along the way and I imagine I peppered him with questions about life. Those are some of my favourite memories of him. Those walks that for many reasons stand out in my memories as my special time with him. 

He was a quiet, stoic man. His life wasn't easy. Every ounce of love he had for me had to be masked, hidden, because unfortunately my Grandma wasn't an easy women. It took years for me to come to terms with that... maybe I am still working on that. Those walks, just he and I, there was no need to hide, no need to pretend. His calloused hand holding my much smaller child one is a tangible thing that I can feel as soon as I close my eyes. 

If you went to the cottage you would find Grandpa in the garage, building something usually. I would follow him around and he would let me. No matter what he was building he made space for me beside him and hand me some wood, nails and a hammer and together we would work. The smell of sawdust still takes me back to that workbench; his body close to mine. When the work was finished he would announce that it was time to go to the beach and we would run down to the beach and there, for hours, he would row our boat filled with friends, we would jump off and he would haul us in, just for us to jump off again. He never seemed to run out of time for us. He didn't say it often... but in his actions we knew we were loved. 

As I got older and the visits became harder I would get random cards in the mail from him, reminders that he loved me. Once when I was living in my first apartment on my own I got a St. Patricks day card in the mail. Who gets a card for St. Patricks day? It's one of the few I put into a special place, to pick up on days like today when I am missing him... 

It saddens me to say that it wasn't until 15 years ago; that I got a real chance to know my Grandpa. He moved in with my parents and for the last 15 years he's been a welcome and fun part of our family. He made several trips to Europe to visit me while I lived there. We went to Wales, visited Venice and explored Austria together. There are so many things about him that make me smile, so many things that I miss... it's been almost a month since he passed away; I think I am still trying to come to grips with that. 

He was, is, part of me. I see him in myself, I see him in my boys. I thank God for the time we had with him, particularly the gift of the last 15 years. I thank God that he is at peace now, and that one day I will get to hold his hand again. Until then, I will miss everything about him, everything.

Goodbye Grandpa,  I love you.

L

celebrating life

This week we celebrated the life of my Grandpa who at 97 surprised us all by quietly and quickly passing away last week. This is not the day to post about how I feel about that, In many ways I am still processing how I feel; that post is to come. However, this week is also a week that we celebrate the life of our youngest who turns 6 today.

As Kaleb grows and I discover the many facets of his blooming personality I can't help but wonder at the boy he is and the man he is becoming. He is so fiercely protective, he's sweet, generous, kind, and he's got eyes and charm that manage to get him anything he wants... the two are a dangerous combo for the ladies in his future.

He can be a character and recently he's learned that humour cheers people up... when he's seen me with tears in my eyes he's there with a quick smile and some silly antic to make the smile return to my face. He has begun a fairly regular habit of waking me in the morning by crawling in beside me in bed and just snuggling for a while. This year when he started school he quickly decided that it wouldn't be cool to be seen kissing his mama goodbye; so we began the fist pump tradition. I won't lie, it was a wake up call, realizing that it meant the end of the baby years for me. The next day I dropped Kaleb off at the door of his class, we did the fist pump, said goodbye, and I walked away... I was half way down the hall when Kaleb came running out of class and yelled 'Mama! Wait!'.. I turned around and saw him running to me, his arms outstretched. I gave him a hug and then he gave me a kiss. A brief moment, but a reminder that he's still little, he still needs me, and as much I had missed the goodbye hug and kiss... he'd missed it too. 

He is growing up on me, there's no escaping that, but as I get to know all the wonders of his personality I can't help but enjoy discovering the man he's becoming. There are so many things to love about this little guy, and so many times he's made me proud; he's a remarkable little man.

Happy Birthday Kaper... all of my love, forever...

Mama, xoxox

Labels

I have always been wary of a label for Josh... once upon a time there was a doctor who insisted that Josh was autistic because he couldn't speak. I fought back and got him assessed by another set of doctors who quickly shut down the autism diagnosis and said that his language was a stroke issue and it's been that way for many things in his life. I hate labels! However, one label that I have not been able to argue and that has stuck with him through out all the assessments, through school (to date), and which has become an increasing problem at home is just three letters. ADD (the acquired variety and without the hyper active component). I have known that this is an issue for some time now and I have learned that it happens in many kids with CHD, but last year it became a growing and more pressing concern. I sought help from a few doctors and finally on Monday it was decided to put him on medication to help him; and to give him his best shot at his new school. Since we now know that he doesn't have an LD and he isn't language impaired and that he is in fact in 'catch up' mode we agreed that we want him to have the best possible chance at learning that we can give him. He started on the mediation yesterday morning...

Today I went for a walk with him... and for the first time in his life (NO KIDDING)... we had a back and forth fully understanding and understandable conversation. We covered two topics on the entire outing and we talked. He asked questions, he waited for my reply, he considered my answers and he responded in kind. I am so full of hope and so fully aware of the blessing that this is. Label's it seems can sometimes be good things.

There is a down side... and this is something that will require patience and prayer... and prayer for patience...

Last night... Josh was still wide awake at almost 12am! This is a kid who typically goes to bed at 7pm  and often asks to go to bed. In fact three times this week he has asked to go to bed BEFORE his brother! Josh didn't start sleeping through the night until last November... almost a full 7 years of sleep deprivation... I am afraid that this new medicine is taking us back a step, and yet already I can see how much he needed/needs it. There is hope of course, hope that he will grow accustomed to this new medication, or that last night was a one off... if it's not I have a lot of sleepless nights ahead I suppose.

The end result of course is only that today (though I am totally worn out after sleeping (sort of) beside him for most of the night, I am more hopeful than ever about this man who has taught me so much. I find myself excited to see the changes and growth! :)

L

P.S. Coffee intake will go up... is that possible?

The Haughton Escape

This past week Tim and I were able to take the boys on a much needed holiday together. We drove south east to the Adirondack mountains and stayed at a small out of the way cabin on Star Lake. It was so quiet, so peaceful and though the city girl in me got itchy towards the end, now that we are back I can say that it was so restful and nice to get away.

On the first day of our adventure we hiked into the Ausible Chasm and took a river raft ride, and then with less than stellar wisdom we chose to climb Mt. Joe. Tim and I hadn't been planning this trip for long, and the only thing we read up on the Mountain was that it had a family friendly trail... my idea of family friendly is different. It was a proper mountain, the path which started in a nature hike sort of way quickly transitioned into a rock climbing, dirty adventure. We saw the red spotted newt, lots of various mushrooms and Tim spotted a snake, which when he went off trail a little to see ended up with him having a broken shoe. You see, in our enthusiasm to hike this family friendly trail we didn't stop to change shoes, Tim and I climbed this thing in our croc flip flops! Tim climbed the rest of the way in bare feet. As the mountain got steeper and the path gave way to a creek bed (full with water running through it) I soon gave in and carried my flip flops too. It was simply far less dangerous to do it without the slippy shoes. Kaleb loved the climb, Josh struggled but with some rests we managed to get all the way to the top. Of course, we all know that climbing down and can be just as dangerous (if not, more so). Josh doesn't like to watch where he is going and gave me a number of near heart attacks that caused me to hold his hand 90 percent of the way down. I joked that if we all reached the bottom without a broken bone then it would be a success. It was Tim who was out down fall... half way down Tim's foot slipped in the UNENDING mud and he broke a toe! Thankfully, he managed okay and we all made it safely (unless you consider Tim's toe) to the bottom where a lake sits waiting for you to jump in.

As we drove back that night with an exhausted Josh, we had to think about the fact that just a few short months ago this little man had a valve replaced. This kid did it, and though there was some complaining done by him and I on the way down it was more to laugh instead of cry. He was quick to tell me (numerous times) on the way down that he 'will not climb mountains when he's big' or 'he's not a mountain climber' and after each time we shared a giggle. The not so family friendly hike was while not 'fun' with all the anxious moments of waiting for one of them to fall off a cliff, was a moment to witness Josh accomplish something that I didn't think he would ever be able to do. I don't know if he understands how big a deal it is... and that just makes it that much better.

Kaleb discovered a love for fishing and spent time learning all about various animals... his big highlight came at the end of the trip, our last night to be exact when he was able to bring me home a huge 15 inch bass!

All in all, it was a really wonderful time away with my three favourite men... though I am glad to back in the land of bathtubs and laundry machines :D

Courage

Today I had the amazing opportunity to sit front row and watch Josh receive an award for courage at his school. I must admit I bawled... and so did a number of other parents. Josh jumped up when his name was called and ran to the front and stood proudly while the teacher talked about his courage in the face of adversity and how quickly he rebounds and gets back to school and back to getting his work done. What a beautiful moment! After receiving his award he scanned the crowd, found me and threw me a big thumbs up; which prompted many more tears! :) So proud of my guy today!

"It is my pleasure to give Joshua the courage award. Joshua is receiving this award because of all the perseverance he has shown us in completing his school work despite multiple surgeries he's undergone recently. Joshua has always been happy to return to school after each surgery and eager to learn and participate. He has always been willing to catch up on missed work and recently impressed us when he chose to spend recess time in the library to start and finish a project he'd missed because of the surgeries. He drew a beautiful map of his neighbourhood and without any help he made sure his map had a legend, colours, symbols and a compass rose! Good job Josh!"  His teacher.

Insanity is coming to an end...

It's been a long two weeks... I wrote last about Josh's amazing assessment and hours after that post we had a call saying that his eye surgery would be that week. On May 28th, just one month post op for his heart Josh went again into the OR to have his eyes corrected. Every time you send your child into the OR, be it for something serious like heart surgery or mundane like eye surgery, there is an anxiety that can't really be described. We have done this too many times, he has suffered too much. The amazing thing though, is how he copes, how he braves the challenges that are set before him. I have seen him literally laugh in the face of these challenges and I have seen him rise above. May 28th was also the day of his big school transition meeting, and a large BBQ for Tim's work. It was a nutter day... a fully insane day. Yet, as I lay down in bed that night I realized two things.

1) He now has the entire summer to not worry about surgeries or appointments (once we get through his last one tomorrow) For this summer... he can be a kid. That is a really really great thing! He so deserves that after this year!

2) While it was a lot in one day... we managed it. We had help (we couldn't have done it all without a lot of help) Tim made the school meeting and advocated for Josh, getting him placed in the exact program I had been hoping for in Kaleb's school! (Both boys in the same school FINALLY will take a large burden off me next year). The BBQ was a success and Josh... well, he was home and his own bed so I have nothing to complain about there either.

The first few days post-op were (in a word) brutal. The first hours of recovery they wouldn't let me in the room because he was 'having complications' ... as it turns out they are a day surgery post-op recovery so they don't often have heart kids in there. They were freaking out about his SAT levels and heart rate and blood pressure; and thought that he was having trouble. Finally I begged to be allowed in and once there, I saw that while he was not doing great, it was all down to the fact that he was anxious and in pain and scared because he couldn't see. (Who wouldn't have high BP or a fast heart rate in that situation?). I sat beside him and explained that he had a patch in his eyes and that he was in the recovery room. We talked about the patients in the beds beside him, the nurses and what they each looked like, and as we talked he settled. We gave him some powerful pain killers and he slept, deeply, his SAT levels dropped and alarms started going off, sending our nurse into a panic. (It was actually a little funny). I reached over and silenced the alarm, moved the O2 mask to his face and his levels normalized... at that point she bowed to my wisdom and calmed right now. Within 45 minutes of being allowed to see him he'd had 3 freezies and was in a wheel chair headed down for a blueberry muffin at Tim Hortons' (his new favourite treat). The wisdom here is the power of healing that can be found in a mothers love. (not trying to bolster myself here either, it's a statement of fact. Kids need their Moms).

The surgeon had warned me that 'recovery would be hell' and she was right. He was in so much pain, and Josh's eyes are his weak spot. When he's anxious, scared, tired, worried, sad... he rubs his eyes. It's always been that way and here, in the midst of great pain and anxiety and he couldn't rub. For two days he couldn't open his eyes they were so swollen and painful. However, on day three he woke up feeling so much better, by the fourth day he was back at school and came home almost euphoric. He is a different child these days. He's so much happier, and though he can't explain why, he says he can see better, and given the happy child running around our house these days I would say it was worth the pain of those few days.

I also had the chance to see what a beautiful man our Kaleb is turning out to be; he care and compassion for his brother through this process has been an honour to see. He guided him, fed him, retrieved things for him, described things to him when he couldn't see and one morning, when he could see that Josh was needing to hold the cloth over his eyes (the only thing that brought him comfort) and try to eat, he jumped up, grabbed the cloth and said 'Ill hold this for you Josh, that way you can eat and mama can drink her coffee'. He is a beautiful child, who is being shaped by this journey just as we all are. It's humbling and awesome to see.

It's been a long few weeks, sleep in this house is a luxury, Kaleb's asthma is bad again and both boys are alternating nights of nightmares that keep us up. BUT... and this is important... Summer is coming quickly. Just a few weeks left of school, a few last appointments for the boys (Kaleb for asthma related stuff and Josh for his ECHO and post-op). We have two graduations, Kaleb is graduating kindergarten and Josh is graduating out of Bloorview. Then... then it's all just fun and summer rest! I am counting the hours!!

I am FLOORED... Awed and left humbled.

Ever since Josh turned one years old we have been struggling through the process of stroke repair, (his stroke happened at 3 months of age) language development and endless hours of therapy... it's been a struggle, a discouraging endless struggle. I have seen countless doctors, therapists and spent hours on the phone getting assessments and support. We fought every step of the way, we had to learn patience, we had to accept help, we had to battle the discouragement...

Last October Josh was diagnosed with epilepsy (resulting from the stroke) and he was given medication to prevent the seizures...

This year is his final year at Bloorview and at the start of the transition process I asked if we could get another psych assessment done because the medical situation was different (i.e., the seizures were being kept under control and he was finally - for the most part sleeping most nights). I wanted to know if those things would change his overall outcome.

All along this process we have been told that Josh would always have a language impairment, that he would likely always have a learning disability, and that we would have supports in place for him as he needed them. In other words we were told 'to get used to it, this would be his life'.

Today I got a brief overview from the phycologist who did the new assessment on Josh.

She said that the results were so dramatically different (from his assessment last year - just one year) that she had to score it twice thinking she had made a mistake... TWICE! His cognitive abilities (verbal and visual) have gone from seriously impaired to AVERAGE for his age!!! Let me repeat... VERBAL SKILLS ARE AVERAGE!!!! This is HUGE!! HUGE! I can't stress this enough!! We have been told all along that he would have a learning disability his whole life... yet they now say that they can't classify him as an LD because it's just not 'bad enough' and they feel that he may well be in 'catch up' mode. They want to re-evaluate in grade 3 to be sure but feel that given his current rate of advancement it's entirely possible that with some help he can catch up without issues. That with all the school missed, with the seizures, and the other medical situations it could explain why he's behind and they feel that with added help he can catch up no problem.

I AM FREAKING OUT!!!! How awesome is God!?! This is such a HUGE answer to years of prayer... I don't even know how to articulate myself properly! When I think of all the little details that had to fall into place for all the different supports we have had... the help from the Bishops company to get him therapy, and the special pre-school, the acceptance to Bloorview, even the epilepsy diagnosis that seemed so disheartening at the time... How can I not sit and praise God for every thing that has gotten us to this point? How can I not feel humbled...

That's it... just had to write to tell you all (who have faithfully followed and prayed) how incredible God is, how amazing my son is, and how proud I am of him, and ... well... just to share this awesome answer to literally years of prayers!

not always a Hallmark card

Mothers day brings so many emotions to the table... it can be a joyous day but it can also be a day filled with bitter disappointment, hurt, searing pain and grief. Mothers day is not always the pretty Hallmark holiday that is plastered on every card or shown for weeks on Facebook videos.

I think of the mothers who lost their children, the mothers who miscarried, the mothers whose child died before they got a chance to take a first breath. I think of the sons and daughters who lost their mothers, who grieve what is now a memory. I think of the men and women whose mothers failed them and hurt them. I think of the women who want nothing more than to be mothers but struggle with infertility or haven't yet met someone to share that journey with. I think of all these things and while I celebrate my own mother and my own sons I ache for each of these as well.

This year, acknowledge the pain that often lies in the hearts of the women you greet today. See the struggle in their eyes, show compassion. Hug the women in your life who you know have loved and lost, who dreamed but didn't conceive, who hoped but didn't hold their child, who have known the pain that comes from a broken mother of her own. Hold them, acknowledge them, stand beside them and grieve with them.

Mothers day isn't all tulips and sunshine...