Photographs by Laurie @ Horizons Photography

February 19, 2016

Get real.

I don't often use this forum to rant but when I do it's often because whatever issue it is has been upsetting me and the only way to feel heard and process why it's upsetting me is to write it down.

This past week there has been a lot of furor at Sick Kids over a silly petition, I'll tell you the basics and then take you through point by point why this upsets me. I encourage you to stick with me here because I know many of you might have seen the article in the paper or on the news and not thought too much about it.

So, a life coach has decided that children need to hear positive words and associate positive things when they are going to the hospital (I am paraphrasing), and she has put forward a petition to change the name to one that is 'easier' on the ears of children. A few of her thoughts: 'the magical hospital' or 'the miracle healing centre'.

I start to talk about this and my blood actually starts to get hotter, then I rush to tell all the reasons why this is so upsetting and wrong and it all comes out in a garbled angry mess. So, bear with me while I take you through this is a more orderly fashion. (This is going to be hard for me since I am used to typing until I am done and just letting my thoughts roll out).

1) Let's talk about the brand Sick Kids. It is the second best children's hospital in the world. Doctors come from all over the globe to be taught by our doctors, because they are best. When someone in China, the Philippines or any other place on the planet hears the name Sick Kids they immediately think positive things. Why? Because there are positive things happening there. One of the doctors we had early on in our Sick Kids journey was a man from Saudi Arabia who was here to learn all that he could from our doctors so that he could go home and save children's lives in his home country. That is what Sick Kid does.  Because Sick Kids has built a brand and that brand is known world wide for being the best. It is prestigious. So, given the brand already in place, the reality is that if suddenly we change the name to 'the magical healing centre' (or some such ridiculousness) and then asked someone in, lets say India, about it, they would look at you blankly because they haven't ever heard of it. This means obviously, that in order to change the name of this prestigious brand we would have to go through a re-branding process that would cost us millions (Im guessing on amounts, I have no idea what it would cost but I imagine it would be multiple millions). Guess where that money would come from? STRAIGHT OUT OF OUR HOSPITAL; straight out of research, straight out of new technology and straight out of the funds for new and better facilities. Basically, re branding Sick Kids would be at the cost of our kids. What's so positive about that?

2) Josh is sick. Every kid that steps into those hallowed halls is--close your eyes for a second if you can't handle non-positive talk--SICK. They (for many different reasons) have entered that building to do battle. They didn't come to ride a roller coaster of fun; they go to Wonderland for that. They came to Sick Kids because they are a) Sick and b) want to get better. Josh himself said to me "You go in sick, you come out better".  As parents and caregivers we don't hide the truth from them (and I am not just speaking for me here, I have heard from MANY parents on this topic in the last week). You can't tell your son he's going to the magical hospital and then hand him to a surgeon for open heart. It is the stepping stone to losing the trust that we as parents need when navigating this horrible journey. I need to know at all times that Josh trusts me with his life when I take him to that place. I tell him going in what is going to happen, all the painful stuff and all, then I hold him while he processes that information. He asks the questions he needs and in the end, walks away from the conversation knowing that I wouldn't do this unless I had too. The positive talk? That comes when he's seconds away from the OR and he's terrified. That's when I pray with him and remind him who he is; a brave, strong, warrior who is loved beyond measure. Positive talk comes in the nights after open heart surgery when he's begging me to make the pain stop and screaming that he 'can't do it'. That's when I stand beside his bed all night, holding his hand and tell him that he can do it, that he already has done it and that he is the fiercest knight I have ever met. Positive talk comes when the nurses, doctors and child life workers walk into his room and do their best to make everything as painless as possible, or to reassure him, or bring him a smile. Positive doesn't happen in a name... it happens inside those walls of a building we never wanted to be in but in an odd way have come to love.

3) I raise my son to believe in God;, to turn to Him for hope and strength and courage. I do my best to teach him that God answers prayers but sometimes those prayers do not get the answer we want. This is a hard lesson. Better to learn it young.  Here's a hard truth. Babies die. Kids die. There is nothing, absolutely NOTHING that can prepare someone for that. Here's another hard truth. Kids like Josh are afraid of dying. It will come up. It does come up, because they are scared that when the anesthesiologist puts that mask on their face they may not wake up. Those conversations need to take place. No positive talk will make that fear go away for a kid. Going to a 'miracle healing centre' and then the child dies? What does that say about death? What does it say to a kid like Josh who would expect a miracle healing, but wakes up in the ICU with his chest cracked open and sewn shut? A kid like Josh who will never be 'cured'.  I believe in miracles, I teach my boys about them, I have sat front row for thousands of them in our journey and I always point them out to Josh. But let me say this: to know a miracle for what it is, you must first know the desperateness of the situation. (Me getting a coffee in the morning is not a miracle. But if you knew how many lives were spared by me having coffee every morning you would indeed see the miracle).

4) Kids, are people. (WHAT?!  Who knew?) They are little people who are growing into big people and they need to know how to cope in life. Life will throw some hard things at you and it hurts. People can be mean, employers can be unfair, spouses can betray, children can hurt you. How do we prepare our little people into the world ready to cope with life when we couch everything in pretty words and bubble gum softness. Let's be real here. It's like giving them an award for showing up every time they show up and then sending them into a world where they are expected to more than show up and then being mad at them for not knowing that. It's insane what we are doing to our kids, we are not teaching them truth, we aren't preparing them for real life, we are not doing them a service we are setting them up to be crushed when they fail. Is that really what is 'best' for them?

5) This is the last thing on my list (thank you for your patience) but to me it's one of the things that frustrates me the most about life in the modern world. The media. Here's the situation. There are millions of really news worthy stories in Toronto, good deeds not reported, worthy causes that don't have the right 'hook' to make it to the news. Yet, there are these people in the media who pick on the truly useless stories (like this petition issue) and make that a top story? Really? This 'life coach' gets more coverage than the kids in that hospital who are waging war on their bodies to find health? She and the media are more concerned with what we call the place than we are with who is inside it, or what illnesses led these kids there? When did we as a society become to callous? When did the media start caring more about the Kardashian's of the world and the silly 'puff' pieces than they do about the truth? We live in a society that cares more about what Trump said last night than we do about the kid who is lying in a bed down the street from you dying from pulmonary hypertension because of the lack of funding for research and care. That is who we have become, Toronto.

The kids who are lucky enough to go for treatment at Sick Kids are sick. They fight daily for the life they have. They struggle through pain and anxiety and wear their scars with pride. They hear 'Sick Kids' and they hear "hope"! Not because of the name but because of the amazing staff and people in that building.  They go there to put on their armour, they go there to become warriors, they go there and find strength, resilience, courage. They go there to win. They don't go there for magic, they go there for the awesome doctors, nurses, technicians, child life workers, therapists and everyone else they run into contact with. They go there for the science that gives them life, not "magic" that promotes false hope. They fight a legitimate battle, and for them, using "cushion words" is demeaning. It belittles and takes away from the legitimacy of what they face.

February 15, 2016

Painful light

You know those months, or two, that seem to go on and on with no end in sight? Yeah, that's what we have been living the past few months. After Josh's last scare (see last post) we got him home and after a few days rest he got back on his feet and seemed to be coping okay. Then we got news from the Eye clinic that his eye surgery was scheduled for February 12th.  The last time he had eye surgery I swore that we would never put him through that again... recovery was tough. His eyes have always been his weak spot, when he's scared or anxious he rubs at his eyes, when the light is too bright his eyes water, he HATES anyone touching his eyes, even talking about his eyes around him causes his eyes to water. 

So you can imagine how he feels when someone cuts into them and works on them, that for him, is the worst feeling in the world. 

The week prior to the surgery he was very scared, and the night before he asked God to give him all of Gods strength and to help him be brave. It just about breaks you heart, because if I could I would do this for him and yet there is absolutely nothing I can do. I have to sit helpless.

The morning of the surgery he asked me to pray for him at least 4 times, and right before they put him to sleep he asked me again. As he drifted off to sleep there were prayers being lifted up around the world for him, I know that, because I know the community we have and I know that their prayers are ever faithful. 

Recovery went ok and we were sent home, but it's not been an easy few days. His pain is horrible to watch. He sits in my lap and says 'It's just too much mummy' and all I can do is hold the ice pack on his eye and snuggle him until it eases and the meds start to kick in. 

He's also been showing signs (or at least more serious signs - since his recent bouts of seizures) of having photophobia. He hates the lights on, and complains that the light is bothering him in even a dimly lit room. 

Last night he prayed 'Please God, make my eyes normal again'...

This is a bummer post... Im tired and this seems all consuming. Please pray for him, for his eyes to heal quickly, for the pain to ease, for the light sensitivity to diminish, for life to find a new normal. So far, this year has been a tough one but it doesn't have to continue this way; pray that God gives us a season of peace after this.

Thank you all for you patience; Ive had many emails about my lack of updates... my computer has been on life-support at the computer hospital, but it's all better now and will hopefully remain in working order. 

February 1, 2016

Day 1 - Year 8

Josh's take on life is that you can't ever let people be satisfied with the status quo... if people start to settle in and relax then it's time to shake things up; or at least that is what I think he thinks sometimes. Yesterday, after a fairly regular day of church, lunch, lego and bed he decided that he was going to spice things up.

At 10:00 He came crashing (literally crashing and stumbling) into our room, fell onto our bed and began telling us some strange things he was seeing in his room. He appeared drunk, and he was seeing things like lego figures walking through tunnels from his CD player, or a ghost tongue, and robots climbing on our bed. This went on for hours, I did some neuro tests that they have taught me to do and called the fellow on call for neurology. He spoke about feeling like he was floating and inquired as to when he would feel 'normal' again. At 4:00 he really began freaking out when he saw ants crawling all over his room and trying to rip down his posters. I brought him to Sick Kids and at about 5:00 he fell into a very deep sleep. Nothing we did would wake him; it was terrifying. At one point we had the ER doctors, the Neurology staff and fellow, the ICU doctors, a respiratory therapist and a whole contingent of nurses leaning over his bed trying to get him to wake up. They resorted to some painful tactics but still he wouldn't wake up. We were sent to CT scan to look for a brain bleed, he had an eye ultra sound to see if his optic nerve was enlarged and then he started to have the facial ticks seizures that he had after his stroke when he was a baby; which brought back all of those horrible scary moments.

(I am telling this in a very matter of fact, quickest way possible because I honestly can't think straight.)

At some point (no idea what time) they got through to him a little with pain, he didn't wake up per say but he was responsive to the pain which was a positive. At around 1:00 pm he woke up and was quite groggy, had unresponsive pupils and not a great recall on the events of the night/day but within the hour he was doing much better. We had an MRI and it's showing no new stroke sights and no brain bleeds which was the main concern for all involved. We have been admitted to the Neurology ward and have an EEG scheduled for tomorrow sometime; they are now assuming it's more seizure activity.

That is how Josh shakes things up when things are status quo.

For obvious reasons we are all exhausted and feel like we have been through a combat zone. We have had some pretty scary moments with Josh, that's not new, but seeing him lying unresponsive was enough to make me ill.

All that being said... He's now playing star wars WII and just finished his second pepperoni pizza. When I joke with him about this being a hotel he smiles and says its fun. Today, in a weak moment I started crying in the coffee line and looked up to see the chaplain we have known since our first night of knowing Josh, he wrapped a gentle hand on me and led me to Josh's room to pray with him. It's those stars in the dark night sky again, shining through when you are looking up.

I think sometimes Josh just likes to remind us that we are still alive, and he does it by giving our hearts a restart.