Tribute to Kaper

This weekend we had a fantastic day celebrating our little guy Kaleb at the Labatt Family Heart centre's siblings conference. the day focused on the siblings of our heart kids and gave them a chance (for once) to be the centre of attention and the focus of our appreciation.

It isn't often that we go to Sick Kids for a day of nothing but fun and celebration so to do so for Kaleb was so great! Josh even got into the spirit of things and bought Kaleb a little toy to let his brother know that he loves him. We met with other families who are in a similar situations and enjoyed watching Kaleb enjoy his moment in the sun (until it came time to actually stand up in front of everyone to recieve his medal - at which point his shy side kicked in and he blatenly refused to accept or wear the medal.) Yes, my Kaleb is a Kaper... loves attention and hates it all at the same time. The medal ceremony was beautiful, not a dry eye in the house as sibling after sibling stepped up to recieve their medal of honor for being an appreciated and valued member of each family. Each child had a little bit read to them about how special they are, why they mean so much to their family and how important they are to the family. It's a moment that I have been longing to give to Kaleb, in my heart of hearts I believe each member of the family, child or not, is a valuable member of the medical team and as his brother I wanted Kaleb to know we value him. That the nurses at the Sick Kids Heart center saw this need, and made the move to show these kids how much we appreciate them moved every single one of us to tears; and though he refused to wear the medal in front of anyone I can tell you he wore it with pride the rest of the day and slept with it that night. When I asked him that night what his favorite part of the day was, he replied 'going to the 'hopspital' (spelled as he said it).

This post is about a tribute to my youngest, the strong and beautiful boy who is truly a 'brother in arms' fighting along side Joshua in his battle of the heart. He is a compassionate, gentle and protective little brother who drives him crazy at times but would never let anyone hurt him without stepping in to take a hit himself. He is one of the sweetest most lovable people I know, and his desire to help and show kindness makes this mama so proud.

This is also a post to say thank you to the nurses and social workers at Sick Kids who made this day a reality. You do so much for our kids, all the down and dirty of their care but also the smiles and warmth you bring to them, and on Saturday you took the time to go above and beyond for their brothers and sisters. As the parents, I can promise you. We will not forget all that you have done for our kids. Thank you. It goes without saying that a huge thank you needs to go out to Cardiac Kids for being the sponsor to this really awesome event! Well done!

Falling Skies

 I am not sure how it happened but I found myself interested in a sci-fi series called 'Falling Skies'... Last night we watched the latest episode and today something about it struck a cord with me. The premise of the show is that an alien species has declared war on earth and is seeking to make a hybrid human/alien. It's weird... I realize this. (Again, I state that I have no idea how I got sucked into this show).

In the episode that last night the aliens send a weapon into the territory where rebel humans were hiding out. It was a space ship/egg thing that landed in the middle of their make shift town, and when it landed a fog came out of it and started spreading through the whole town. If a person got trapped in the fog (inevitable since it's fog and you can't hide from it) it glued the person to the spot they were in. They were defenseless. Once the person was stuck, a snake like alien attacked and seeked to latch itself to the person, not killing them, but changing them into a monster/alien. (The hybrid I suppose).

I look around me and I see so much pain and grief and sorrow, in our life, in the lives of friends and in the lives of the strangers we pass on the street, or really, any time we turn on the news these days. Pain, sorrow, grief, worry, fear, anxiety, anger; they are all like that fog. They move into our lives stealthy, then they trap us and we become paralyzed by it, defenseless, unable to move forward. If we do nothing we risk it turning us into something we don't recognize, someone angry, someone so drawn into themselves that they can't see beyond that fog, basically a very ugly version of the person we are.

Two of the characters in the show were trapped in the fog, the fear and the unknown were inevitable. The 'general' and a young boy just turned teenager were alone in a room and the boy was scared. The general was giving him a pep talk and he said 'We will keep fighting' and the two, though stuck and totally defenseless began to chant it. "WE WILL FIGHT TO THE END"

The chant didn't save them, I won't tell you how they got out or of they did (on the off chance a reader isn't caught up) because it's not the point of what I am trying to say. The point is the desire to keep fighting, even when thoroughly stuck in the fog that is consuming us.

I find that sometimes the fear and worry or the sadness and anger in my own life sometimes becomes so enveloping, so all encompassing, that it seems there is just no way out. There is no where to move, no where to run, and not enough strength to move if I wanted too. This past few weeks I have been hearing clearly God saying to me 'We will fight to the end"; not those words exactly of course, but words just as comforting and empowering as the words that the general spoke to the young boy.

The danger isn't gone, the words don't change the situation, they don't heal, they don't move time, they don't rescue, they don't grant wishes... but as I thought about that scene from the show last night I realized this. The general was stuck in the fog with the boy, he wasn't standing above it, or sitting in a safe spot. He was down in the fog with the boy. Isn't that so much like our God? Down on our level, facing the fog with us, and yet encouraging us to keep fighting all the while.

Just to clarify... I don't like sci-fi... never have... and again for clarity sake... I don't know how I got sucked into Falling Skies; but I blame my husband!

through the lens moment

With the first week of school behind us I have been flooded with memories of my own start to school. The fact that my kids are now old enough that one day they will remember things when they have kids of their own is both very cool and a real eye opener for me. What I say and do as a Mom in these early years will matter years from now. When they were babies I would joke about saving for their therapy fund for all the damage I may do to them over the years... but lately I realize that everything I say to them is important, everything they want to say to me, no matter how trivial it may seem to me, it matters to them and if they are telling me and I am not listening then it could lead them to stop sharing with me. I sometimes wonder in awe at the responsibility we have as parents... it makes me shudder but at the same time it excites me.

Then this morning, after walking Kaleb to school (he was not happy this morning as it was his first day in his uniform - which I should mention does not include batman on the shirt) I realized that I have the same relationship with God. What he says matters, and what I say to him, no matter how trivial; it matters. He cares if I am upset that I can't get my internet to work and he cares if I am frustrated with life, or tired, or scared.

Sometimes when I talk to the boys, particularly if they are tired or distracted, they are looking at me but I can see in their eyes that they aren't hearing a word of what I am saying. The other night I was talking to Kaleb about something really important and he was staring right at me but mid sentence he started asking me about having some juice...

I do this to God too often. I will be looking at him, bugging him to speak to me, but maybe I am tired and not really listening, or maybe I am distracted, or maybe I am too busy asking for something I want and I don't hear what he is saying...

Once again I have been brought up short in my life lessons from the boys and our relationship. I am to thankful that God uses them to teach me about himself, and I am so thankful he's more patient that I am, because I can promise I am more obstinate than my boys.

You said.

Be strong you said,

Be courageous.

I am God you said,

I will do the impossible.

Have hope you said,

I will heal him.

Have faith you said,

I can do this.

Be still you said,

listen for my voice.

Be patient you said,

I am not done yet.

Laurie

Mountains on the horizon.

Last year when Josh was being wheeled into the OR a song started repeating in my head, actually it wasn’t a song so much as a line from a song, one that got stuck on repeat in my brain throughout the entire time he was in the OR and in the days that followed. I didn’t know the song but when I did a Google  search later I discovered that it actually was a song, and though I didn’t know it I had the lyrics right and the tune correct.

“This is where the healing begins, this is where the healing starts”...

I don’t know what I expected from that little message, perhaps I secretly harboured a hope that we were leaving all this uncertainty behind us, or that at the very least we would have years of good reports ahead of us. Maybe we still do, but maybe we don’t.

All summer I have lamented the fact that Josh has gone through another growth spurt, he’s jumped 2 shoe sizes and is quickly shooting up... now I see how it’s not just the sadness of seeing my baby getting so big that is a problem...  with height change comes heart change. Josh’s latest ECHO (done on Wednesday) shows that his Tricuspid valve has moved from a mild to a severe leak; and the right side of his heart which had been shrinking in his ECHO in March is now larger again. The Pulmonary valve is still holding and his heart function is okay. So what do we do? He is Asymptomatic at the moment so there is nothing to do about it except wait... and that is tough.

Last week I read a blog post by a fellow heart Mom, she wrote about what it’s like to wait when you are talking about CHD. She wrote that you are waiting for your child to start dying so that they can go in and fix it... and she was bang on. Basically we are waiting for Josh to go into heart failure again so that they can intervene. Do you know what it's like to wait for your child to start dying? Maybe some of you do, maybe some of you also understand that pain, the fear.

I keep going back to that song, what did it mean? It seemed so heaven sent at the time of the surgery and it comforted me through the days and weeks following post op, but what if it was wishful thinking and not God at all? What if, somewhere along the line I had heard that song and it registered in my subconscious mind only to emerge when it seemed fitting? I am not sure.

How many times have I asked God to confirm his words to me, not just these but other things I have thought he said to me? Yet I am met with a form of silence? Does that mean he’s just waiting, or that he just can’t confirm the words? I’m at a loss...

This week I spoke with someone who is going through so pretty insanely hard stuff, he has some tough decisions to make and he expressed himself with the words “I am just so tired”. I feel that this week. Tired.

When I was in Austria I would use my days off to head up to the pass and try my hand at snowboarding, I still remember the very first time I got off the chair lift at the top of that mountain and stood in awe of the view before me. Mountains for as far as the eye could see, peaks and valleys for miles. It was awesome, and a little scary. One wrong turn and down the wrong side of the mountain and you would be hooped.  I look at where Josh is and on one hand I am so thankful, so fully aware of the blessings and miracles we have received in our lives, and on the other hand I see the mountains ahead of us and I am exhausted and a little scared when I see what still lies ahead of us. Not just Josh’s heart, but his brain too.

I was challenged this week on Facebook to do that gratitude challenge. 5 days of thinking on the things you are thankful for and I have to be honest, it’s been a tough week for it. Yet, I am really glad that I did it, glad that I was forced at the end of every day to sit and take stock of the blessings because if not for those quiet moments of introspection I would have struggled to see any good. The news about Josh should have been expected I suppose, valves don’t last and Josh has a history of rejecting them quickly... but I had hoped, really hoped that this time would be different.

With all that being said; and in the vein of the gratitude challenge I will end saying this. We have 6 more months until our next ECHO and barring him becoming symptomatic in that time we can enjoy those 6 months. I’ve often said that in our world, six months between appointments is a huge blessing.  It should also be said again that the pulmonary valve is still holding and as long as it’s holding it is keeping the heart functioning well enough.  I knew loving this much would hurt, that it would be hard, I just never realized how much or how hard, but this pain, this difficulty, proves that I love, and that is not something I should lament but rather celebrate. Josh, Kaleb, Tim...Those three men who have changed me with their love; I don’t need a five day challenge to know how blessed I am to be loved by them.