A diagnosis.

Today is world stroke day... I have been amazed at the damage that a stroke can cause, I learn more on a daily basis, not through books but by studying my son. It's been six and a half years since Josh had his stroke (at 3 months); it feels like 20.

Last week we had an EEG (sleep deprived - which in my old age takes a while to recover from... even though the sleep deprivation was for him). The results were "there's a LOT of activity going on in there".  Apparently he's having a lot of seizures in the site where the stroke happened, they figure there is a few different types of seizures and are occurring frequently. (There is much for me to learn in regards to this new information so pardon my lack of knowledge right now).

Why is Josh not sleeping? Seizures... not fear, not worry... seizures. Why is he not catching up developmentally? Seizures... The diagnosis is 'Epilepsy' which is a term given for someone who has had two or more seizures without known cause (ie. a fever or fall or illness). This was new to me, I had always thought that epilepsy was a disease that you were born with. Anyway, the reality for us as a family hasn't really changed that much; he's been having these seizures for who knows how long, but the label is a little scary.

HOWEVER... and this is big. We got answers! I have been thinking that I am crazy, worrying that I am for some reason seeing things in him that are totally not there, but the truth is now that we have a diagnosis I can rest a little easier knowing that we are on course to get him the help he needs. That help started in the form of new meds, and guess what? He started the meds 6 days ago... and we are on day 5 of sleeping ALL NIGHT LONG!! You have no idea how this little bit of change has and will impact our family. I feel like a cloud has lifted and though it's not fully light yet, the sun is shining through.

The meds should help in many ways, ways that excite me and have me hoping once again for dramatic changes and miracles in his life. One of the biggest changes is that we now have a neurologist following him, one who specializes in both strokes and seizures. This is great news given we have not yet had one specific doctor following up with him before.

Thank you all for your prayers last week, and for your patience in waiting for an update.

Please, take the time to learn about the symptoms of stroke, the help options for those of you who know someone affected by a stroke; you can use the link to the pediatric stroke page on this blog or just Google it. It takes a few minutes but it can save a life.

Super Josh visits Cardiac Clinic

Josh hands over his health card and gets himself registered... hes growing up.

on Wednesday we had our cardiology appointment, this update is past due and I apologize for that for those of you who have been asking.

The main reason (for those of you not caught up) for this last visit was that Josh has had several episodes where he suddenly goes very pale to the point of blue, gets very sleepy, and VERY cold. One episode had his core body temp on the borderline for hypothermia. We have also been noticing other 'odd' things that require further investigation. Then on Saturday during his brother's birthday party he had another severe episode, this time his colour was non-existent, not even blue, just no colour. He was cold and this time he was losing consciousness. After being rushed to hospital we were told that they believe it could be his heart again. I contacted his Cardiologist and hence the appointment on Wednesday...

OK. All caught up (see previous posts for more detailed description of events).

So, back to the appointment. We did all the required tests and then sat down to talk to our doctor. She really doesn't believe that it's his heart, (good news), she believes that this is neurological (seizures). She did however order a holter monitor for 24 hours to see if it's a heart rhythm issue, and we have a different monitor that we use during one of these 'events' but in her words 'this is to rule out the heart as the underlying issue.

While we were there we also got a call from the Neurologist who has bumped up his sleep deprived EEG to this coming Wednesday... and now we are praying for answers from that, because quite frankly, we need to know what is happening to him.


To make the day more fun for Josh he asked if he could wear his 'heart hero' cape when he went to the hospital so I agreed, and then he had me taking pictures of the different things he does during his clinic appointments. I only had my phone handy and he was moving a lot so the pictures aren't brilliant but they are fun... Enjoy them and please, remember him in your prayers this week.

The 'sticker test' (ECG)

Needs to know if he's getting heavier

...and definitely needs to know if he's grown at all

checking his SATS

now he's having his 'muscles measured' (BP)

nailed that part!

walking to the doctors office

waiting for the doctor

There she is...

He loves her...

nailed that part!

getting his holter

wearing the holter

post clinic tradition of a doughnut for him and a coffee for Mum :)
This is our favourite part of clinic days!

My brain may just implode

 For a long time I went about doing things in a disordered and chaotic way, I am not an organized soul... in fact once upon a time I took great pride in my disordered existence. Planning?? What's that?? I remember when Tim and I started dating and he took me out for dinner and he pulled out his planner and started planning weeks in advance what nights we would have dates so that he could schedule his meetings around it... I teased him for years about that night (still do actually). I made it my goal to teach him spontaneity; which lead to a few calls where he was calling to tell me that he was planning a spontaneous date night (four nights away). ;) For the first few holidays we took together as a married couple we actually had to plan time to 'be spontaneous' or our days were planned so perfectly that I wouldn't have time to just wander...

Yes, I tease Tim regularly about it. The truth is though, over the course of the last number of years I have come to envy his organized ways, I have come to appreciate that when we go away we know where we are going, and that we have a hotel when we get there. (My old plan was to arrive in a city and find the closest hostel to crash - which admittedly led to a few nights on a bench in a train station or two).

This month I particularly jealous of him, and I am quickly learning that I need to swallow my pride and admit I have a problem. Today for example... I am a photographer... yet I forgot that it was picture day for Kaleb and sent him to school looking.. well, less than stellar for a picture that will haunt him for years. I had to run home and grab a nice shirt so that his picture wouldn't scream 'my mama forgot it was picture day'. Last week I was annoyed with Josh's teacher for not telling me in advance that he need to bring a potato to school... (he came home and told me he needed a tomato so I went about getting one - not an easy feat that night)... but when he came home from school the next day he brought the tomato and a note from the teacher saying 'potato, not tomato'... turns out it was on the class calendar that is hanging in plain sight on my fridge!

I have two kids library books returning on different days (often I get the days, or sometimes the books mixed up ), I have photo shoot dates ringing about my brain, and meetings with doctors and organizations regarding CHD awareness... and now I have a a bunch of appointments for the doctors banging around up there too... I think, truly, that my brain is going to either fizz out and fry itself or explode (or possibly implode... can it do that?) if I don't sort myself out... hard to admit given my absolute pride in being a 'non-planner'.

I think of that movie (Multiplicity) where Micheal Keaton was cloning himself to get all the things he needed to do done... what I wouldn't give for a few extra 'Laurie's' hanging around.

Enough moaning... here's the latest plan/update on Joshua's recent medical status: We have a clinic visit tomorrow which will include an ECG. He will need to wear a 24 holter (it monitors the heart rhythms for a 24 hour period) and he will be sent home with a 'telephone transmitter' which quite honestly I have no idea what it is but I gather we use it during one of his 'episodes' to monitor what is happening during the event and then the information is sent to the hospital.

I also spoke with the neurology nurse practitioner who believes these 'events' could be seizures... (good thing we have that EEG booked). All in all... I haven't got a clue what's going on but I plan to find out.

Basically... it's just more stuff that will clutter an already cluttered brain. :)

Please, before you email with suggestions... I have a calendar on the fridge and on my phone... the issue is remembering to put the dates in... ;)

what am I thankful for?

It is thanksgiving weekend... it's been running through my head all evening... I don't need to sit and ponder what I am thankful for. Today it hit me like a freight train... I am thankful for my kids, my husband and for the friends who step in to help when life goes totally wonky.

My week started when on the way to pick up Kaleb from school I walked into  a crazy situation in which a man was shot multiple times and the shooters were running through the streets. Cop cars and ambulances raced past me to get to the scene... I was in a fog I guess, thought it was a scene from a movie until the principal from Kaleb's school came out and made me come inside to safety. At that point I was locked in the school office while the school when into lockdown. Kaleb on the floor below me, it was terrifying.  When we were finally given the go ahead to leave and I had Kaleb safely in my arms I was asked by a cop where I was headed, when I told him how far away it was he said 'carry him home, and walk quickly'. I can promise you it was only the adrenaline that gave me the strength to carry a five year old the 20 minute walk home, and I did it in about half the time.

My week ended (today) with what should have been a fun day with friends celebrating Kaleb's birthday party...

Just 45 minutes into the party Josh fell and hit his head on the concrete outside. He cried but he seemed okay at first, but within minutes he was asking to sleep, his skin lost all color, his lips so blue they were almost translucent. His skin was cold and clammy, and his eyes were rolling back in his head. He was losing consiousnes and it took all four adults to keep him upright and awake. We called 911 and before I could finish the call we had four police cruisers at the door, a fire truck and the EMS. We were rushed to Sick Kids where Josh was seen by doctors. I have only been that scared one other time and that was when we thought we were losing Josh when he was 6 months old.

Josh has had episodes like this before, not the fall, but the cold and clammy, the blue skin, the tired and lethargic state... but never like this. When I gave his full history to the doctors they did a few neurological tests and seemed satisfied that it was not a head injury that was the root of his problem.They believe it could be his heart.

About an hour or so after the event occurred Josh regained color, he became more alert, and then he slowly came back to himself, putting together a Lego toy and smiling and joking about his stinky feet. One would think nothing had happened to him.

Thankfully, we were released from hospital and Josh is sleeping peacefully in his bed (we just checked on him)...

Thanks to our friends who drove behind the ambulance to meet me there, Tim was able to continue Kaleb's party for him ... he got to have his cake and open his presents. When Josh and I returned home you could look around the house and assume nothing had happened. So, do I need to think about what I am thankful for this year? No. Not even a bit. I am thankful for our friends who changed all their plans to help us out when we needed them, I am thankful to Tim for stepping in and making sure Kaleb's birthday was still his special day, I am thankful for the first responders who came so quickly, I am thankful that this week is almost over... and I am thankful to God that Josh is upstairs in bed, where he belongs, safe (for the moment).

Please, pray for him and as as we navigate this new issue and try to figure out what is happening to our son.

I know that many of you were made aware of the situation today... the texts and emails were pouring in and I wanted to take a moment to thank you, your prayers are always valued.  Jill and Chris... you stepped up when you didn't have to, I have already told you this, but I needed to say it again, thank you.

waste of time

We had the appointment with the psychologist yesterday... to put it mildly it was a total waste of time and more frustrating than trying to clean the floors with a construction crew still doing dry wall...

My goal in these appointments is not to get Josh to stop waking me up in the night; for me, that would be a nice side benefit, but my goal is to help Josh learn to cope with his anxiety and worry. If he learns now that I don't want him to come to me when he's scared or has a problem then later, when he is struggling with something what is the foundation I have built for him to come to me??

I also don't want him lying in bed worrying and being scared, and feeling totally alone while does it. We are family, we face things together; even if it means waking up in the night (as much as I hate it). So, what to do now?

My plan for the moment is to buy books - a few recommendations I've been given - and use some of those coping tips to help him myself. I could use your prayers because this is going to a journey unto itself.

The one thing I did learn, was that it is totally normal for cardiac kids to be anxious and worried about death and surgeries and their hearts. So at least Josh isn't the only child out there struggling. I am hoping to find other moms going through the same issues so that I can talk to them about their coping strategies.

We also got our sleep deprived EEG appointment... and let me tell you, when they say 'sleep deprived' they really mean it... not just the patient but the family too. Turns out that Josh and I are doing this together too... We have to put him to bed at 10 (3 hours past his normal bedtime)... then, (and this is what will hurt)... I have to wake him up at 2am and keep him awake until his appointment at 8am... I can already see the coffee cups piling up just thinking about it. I am hoping and praying that we get some answers from that appointment that we didn't get from yesterdays appointment...

I think I have a million things to do this month (quite literally) and now I am taking on learning cardiac psychology as well. I am still not better after 2 weeks of illness and (if I could have a little pitty party for a second) I am so bloody tired!

....

pity party is now over... now it's time for a brand new five year old to celebrate at his birthday party!

Five incredible love filled years

5 years ago I was the OR having my youngest son. It was a Friday, the Friday before thanksgiving. I had gone in for a blood pressure check and an ultra sound (I had pre-eclampsia)... my condition had gotten worse and so they decided that they would do a C-section that night. He was 4 weeks early. I remember being too sick to really be too worried about much, but we did know that a possible abnormality was showing in his fetal ECHO and of course there are always risks that come with pre-eclampsia. I lay on the table and honestly do not remember much, it's all a foggy haze. I was violently ill and shaking uncontrollably... but when they put Kaleb on my chest the shaking stopped and my heart melted. From the moment I met him him face to face I knew a love like none other, it was a different love from even the love I have for Josh. He sucked my nose and stared intently at me. He was so beautiful. I don't remember the pediatrician taking him to check him over but I do remember him looking at me once he had checked him over, his stethascope in his ears, and his words, I will never forget his words. "you have a healthy little boy, I hear no murmer"... never have there been such sweeter words... other than the ones whispered years later 'I love you mama'.

Watching Kaper grow, hearing the way his brain works, listening to his stories, laughing at his antics and enjoying the way he discovers new things is such an incredible gift. His heart is huge, his compassion and generosity are humbling, his capacity for love without limits is something that warms me from the inside out. This little boy, he steals my heart on a daily basis, when I think I can't possibly love him more than I do already I am always hit by some new wave of love and it leaves me awed.

Happy Birthday little man. I love you beyond imagination. You have completed our family and your light brings laughter and joy into our home daily. Thank you for being the incredibly loving kid that you are. We are so proud of the person you are growing into!

All my love, forever.
Mama xoxoxox

Time out

Sometimes life requires a breather... a day to just be; to enjoy each other and to get outside and be thankful for the little things...

Every year since the boys were tiny we made the trek to the apple farm to pick apples and take a tractor ride. This year is filling up quickly, our busy schedules this fall is overwhelming and our weekends are filling up so yesterday when Tim suggested we do our apple picking, despite feeling sick I grabbed the opportunity to get outside... I can't say I felt great, in fact today is Sunday and I am bailing on church in favour of my pj's and couch... but watching the boys jumping off hay-bales, picking fresh apples (and eating them at the same time) was worth it. The weeks to come will be busy with work, appointments and yes, not to worry, some fun too... having a chance to connect as a family was a reminder to me that no matter how I feel, no matter what 'things' fill our schedule; these guys come first.

Setting aside time to snuggle with them, to give them traditions that they can remember when they get older, and watch them laugh and play is one of those important joys of parenting that sometimes get overlooked; particularly when we aren't feeling our greatest.  It was Tim who suggested this, and I am so glad he did. So glad that he cares so much about our family time, and that he protects it the way he does.

Daily news

I wrote yesterday about the stroke team meeting to discuss Josh's case yesterday... I've been sick with this nasty cold and we had Beavers last night so it took all my energy just to accomplish the little things like dinner and Beavers and getting them into bed; I all but forgot that they were to call me yesterday to fill me in on what was decided (if anything). However, at 8:00 last night I got the call. They have discussed it as a team and have decided that we need to do a sleep deprived EEG... (basically we wake him up at an ungodly hour and take him to the neurology ward for an EEG, the premise being that we will see things on the EEG that we wouldn't see if he was more awake and hopefully where he may fall asleep and we can also see what's going on in his sleep.)

While I hope and pray that nothing is happening I can't help but hope that they can see something, anything, that would help explain some of what's going on with him... does that make me horrible? I want answers and the brain is so mysterious to me, so foreign... If something is happening in his brain that is preventing him from developing normally or healing from his stroke then I want to know so that we can figure it out, get him on medication or... well, I don't honestly know what they can do. I guess I worry that we will leave still not knowing anything, but I also worry that we will discover something we didn't want to know.. makes zero sense I realize.

Last night I was thinking about it all, taken back in time to a moment in the Sick Kids chapel when I was literally facing losing Josh, sitting there, just at the beginning of this journey I thought it would be a quick fix, I thought 'if he survives this, then he'll be okay'. I thought the same thing after the first few surgeries. It was after the second surgery that it began to dawn on me that this was a life long journey, and that our lives would always include Cardiac appointments. It's sobering. It's also taught me a lot about love, the love a parent has for a child, the commit that it means, the responsibility. I thought having a baby would be all snuggles and sweet smelling baby powder, cute clothes and giggles. I knew we would be sleepless for a bit, but I had no idea the real journey that parenting is about. I don't want to go back to Sick Kids ever again, that is the honest truth. I want to have two healthy kids whose biggest medical need is a broken limb from a stupid stunt; but I don't, and that is what has taught me the most in this lesson of the heart.

No matter what, no matter when. They need me and I will gather up every ounce of strength I have to be there, through all the yucky stuff, through the not so sweet smelling things, through the less than cute moments, through the terror filled nights. Loving these two boys has shown me how much God loves me, how much my parents love me. I was too selfish before kids to really understand that love, to fully get what it means to love without conditions, to be willing to die for the chance at making life better for someone.

Sometimes when it's dark and the house is quiet I just lie there and thank God that I am no longer the same person I was before these three came into my life, I don't even recognize that girl anymore and for that I am grateful. Sometimes its the pain in life that teaches you the most, that stretches you the most... I just wish it didn't have to be Josh's pain that brought me to this new place of understanding...

On a totally different note... Josh was selected to be this months patient profile for the Sick Kids Foundation... (follow the link below). If you happen to feel like clicking the donate button please consider designating the donations to the heart centre so it goes straight to them. (Please, this is not a pitch, there is no obligation, I am just super proud of him and only share this link so that you can see his story on their website).



http://www.sickkidsfoundation.com/why-give/sickkids-stories/kids-stories/2014/10/joshua

Life is fluid

For anyone who has been following this blog you will know that for years we have had struggles with Josh's anxiety and fears. Most of the anxiety manifests itself in the form of nightmares that wake us multiple times a night. We have tried all the tricks we know, and I do mean ALL the tricks we know. Some have been successful for a month or two but the fears still lurk and the cycle eventually begins again. With every transition, change or doctors appointment the cycle begins again. This summer was a welcome respite from any therapy, appointments or change. other than a few nights we have had a fairly peaceful summer and the nightmares have for the most part ceased... until September 3rd when Josh heard that his valve is leaking. The cycle has begun again and after years of sleepless nights and calls to the psychologist at Sick Kids I have gotten to the very end of my rope.

Yesterday I called once again to try and get an appointment with the cardiac psychologist and to my amazement we were given an appointment right away! Next Friday to be exact! I am so thrilled that finally we can begin to delve into Joshua's mind and discover the fears and anxiety that lurks there, and hopefully give him some useful tools to help him cope with it in a way that allows him rest, and peace.

We have also got new worries in regards to Joshua's brain, we can't say for sure what is going on but there are enough little things happening with him that I am concerned and want them to look more in depthly at him. I was again shocked yesterday when I called and was told that they would discuss his case as a team and phone me today to let me know the plan of attack. My hope is that if there is something going on, seizures? Strokes? that they can find it quickly and get him help. The brain is so tricky, it's hard to know what is happening... please keep these things in your prayers as we move ahead in these areas.


With all that being said, life moves at a quick pace these days and to my amazement it's now October! In just 9 short days I celebrate my sweet little Kaper and the day that I can became the mother to a child so like me that I both stand in awe and cringe at the same time.September has flown by, last night Josh was telling me that it happened 'too fast' and I couldn't agree more. The boys are loving school (both of them!) and they are now full fledged Beavers! I have a lot of great new opportunities as a CHD advocate which thrill and excite me and Horizons is kicking of the year with some really awesome new clients! Life is always fluid, always moving, and for that I am thankful.

This post is more of an update post for my regular readers... thank you for your faithfulness and prayers. More to come!

L

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.

we aren't powerless

 If you have ever known someone who is in the midst of serious suffering then you know what it can feel like to really feel helpless in the face of their pain. It's hard to watch someone you love and care about struggling, to see the unshed tears in their eyes or see the slight slump in the shoulders and know that nothing you do will change their situation.

Now, magnify that by a million... and we sit back and watch our brothers and sisters around the world who are facing unthinkable tragedy, pain and torment, starvation, humiliation, torture... we have all heard the stories coming to use via social media, blogs and news outlets. It's horrific, painful, unimaginable... I am struggling to even come up with the right words because frankly there just aren't any words to describe it. Who beheads children? How desperate do you need to be to throw your own beloved child off a mountain just to spare them any more pain? What is happening to them moves us, but to what? To action? What can we do? I have been mulling this over since the world started to hear more and more stories coming out of Iraq. What can I do? Between being half a world away and totally ignorant of the politics involved in helping these dear people I am at an utter loss. In fact, one would almost believe that it's hopeless... almost.

I am not going to sit here and pretend that I have ever faced such horrible suffering. I just haven't. My life is full of rich blessings and to pretend otherwise would be like slapping these people in the face. However, I will say this. God doesn't know 'hopeless', he didn't create chaos, and he certainly doesn't have boundaries. When we faced some of our tough times it was Him who brought the help, via friends, families and even strangers. Knowing that they were praying helped, it didn't fix anything, it didn't stop the hurting, but it gave hope where all seemed hopeless.

If God can't use me on the front lines in Iraq, if I can't personally go there and rescue every single innocent victim of ISIS then I need to pray for those that can be there, for the Kurds who are the only line of defense and security for these people right now. I need to pray for the men, women and children who are fighting just to live. I also need to seriously start praying for the men and women of ISIS... yes; I said that. I spent an hour praying for them the other day, for they too are God's creation and God loves them, grieves what they are doing but loves them. Loving our enemies is not always easy, and it doesn't mean that we love what they are doing, but I believe they need prayer, and a lot of it.

In this new phase of suffering in Iraq, we can feel the hopelessness and choose to look away from it because 'there's nothing I can do'. I have been very tempted, trust me. However that is a lie, I can plead to the maker of the heavens on behalf of Iraq, for all of her people, and I can hope for them.

Prayer is a powerful tool... but I also urge you to look into some organizations that could use your support. There are humanitarian efforts that are set up and doing their best to get aid to the victims.

Four charities already on the ground and working are:

Mercy Corps
Save the Children
International Rescue Committee
Action against hunger
Preemptive Love Coalition 

I am sure there are more, if you know of any specifically please feel free to list them in the comments section.

There is a movement going forward this Sunday calling for the world to pray for Iraq. I ask you to join and pray with me, not just this Sunday but every day.

lessons on love from a four year old

I can still remember walking down the street when Kaleb was just a few months old. He was in the stroller, facing me, and Tim and I were returning from a meeting, Josh was home with a sitter. It was evening, the lights and sounds of the city were vibrant and full of life. There were neon signs on buildings and car horns blaring, people talking and laughing; not to mention the sirens of emergency vehicles. Yet, Kaleb didn't take his eyes off me. I remember thinking it was the most amazing thing in the world that this little baby, born only months before would think I was more intriguing than all the lights and sounds that filled the air that night.

Little has changed when it comes to this little man, for the time being I am still the love of his life and I have to admit that I revel in it, and will, for as long as it lasts before some beautiful woman comes to whisk his heart away. Yet, even then, I know that his love will remain.

He has such a good heart, a genuine love for us, a pure love, a giving love and when he looks up at you and smiles, you feel the warmth, almost as if it was a ray of sunshine that is warming you from the inside out. A number of things have happened this summer that brought me to this post; little smiles, hugs, kisses, flowers (weeds) given in outstretched hands and a multitude of other expressions of his love for us, for all of us, not just me, but his Daddy and brother too.

This week, in the wake of a few quiet days without the boys (they remain at the cottage while I deal with a few things here at home). You can call it an epiphany if you like. I saw something that was talking about a childlike faith, and it made me think about Kaleb. I wondered, when was the last time I looked at God in a childlike way? When was the last time that I was so intrigued by Him that I didn't get distracted by the lights and sounds of everyday life on the busy streets? When was the last time I gave him my expressions of love, even if they were only weeds? I am deeply saddened because I can't honestly remember. I get so caught in the daily grind of life that I forget my purpose, I forget that I was created for love and worship.

Thinking back over the summer, seeing all the little acts and tokens of love that Kaleb pours out into my life, knowing how life giving that love is, knowing how beautiful it is, how much it feeds my soul, and I wonder that I haven't done that for my own heavenly Father in too long to remember, well, it breaks my heart.

Today, I will lift my eyes to Him, and I will watch him and whisper "I love you" and sing to him, and talk with him, just the way Kaleb does with me because the reality is, I do love Him, and I can't call him friend, ask him for help, beg him for mercy or healing, when I can't even take the time to show him how much I love Him, how much I appreciate Him, how grateful I am; when I am too busy to worship Him in the daily cycle of life.

My kids are daily lessons of God's love for me, this week, they are a lesson in my love for God and I am left humbled.

sabath summer

In Sanibel enjoying a post dinner walk on the beach

This past weekend we marked a significant day in our little family. We hit the one year anniversary for Josh's last surgery. That may seem like less than a big deal, but we were advised that if we chose the replacement surgery over the paleative option that we would back in the OR in a year. Happily I announce that we haven't seen that OR, and God willing we won't for a while.

Last summer was not our most stellar summer in the history of us, in fact, I think I can safely say it ranked up there with one of our worst summers in history. It sucked on so many levels! We trudged through it and we made it, with God's help and with the help of family and friends who gathered around us and offered support and love.

I am very happy to say that this summer has easily been the best summer in our small family history, quite possibly in my life. We have been having a blast! (Thank you for your patience with my utter neglect of this blog for a while).

As soon as we busted the boys out of school a few days early we packed our car (to overflowing) and began a four day road trip to Florida. We made stops each day that added a holiday feel to a long boring drive. We road trains, swam in pools, played soccer on the side of the road, hit a blue grass festival in a small west Virginia town, wandered through an old castle and a pirate museum and collected enough McDonald's toys to drive us completely our of our head. We also found the strength to listen to the LEGO movie a bazillion times and can proudly say we have pretty much mastered the 'Everything is awesome' song. After driving for four straight days we found ourselves (by design of course) in Orlando, Florida where we spend a very fun 8 days playing by the pool, riding roller coasters and beating the heat on river rapids and logs that drop you off mountains. We walked hundreds of miles (only a mild exaggeration) and even got transported through time to see the dinosaurs of Jurassic Park. After leaving Orlando we headed straight to Sanibel Island where we got the chance to catch up with some really awesome friends that we haven't seen since just after Josh's surgery last year. We lazed on the beach, fished (well... Tim and Kaper fished... Josh and I avoided that sort of thing in favour of the beach). We watched as both a shark and several dolphins swam within feet of us, found star fish and sand dollars and a multitude of shells and we even managed to see a very large sting ray. Life is sweet when you have nothing to do, nothing to worry about, except planning the fun things you will do that day. Leaving Sanibel and our friends was tough, but we made it sweeter by doing loads of fun stuff on the four day drive home. We went bowling and swimming, saw Colonial Williamsburg and enjoyed the adventure of being evacuated from our hotel due to fire just as we were headed to the pool, so that we stood on the street in our swimsuits and little else. We went to a chocolate factory and hit the outlets, and then to cap it off we spent the night at Great Wolf Lodge enjoying on last kick at the can in the water-park.

Coming home was sweet, we had missed our home and Josh was missing his CN Tower (yes, it's his you know... just ask him). Kaleb was sorely missing his dinosaur (the one with one horn) and me? I missed my bed that is NOT in the same room with those two boys! ;)

The Sunday after coming home Josh and I had the privilege of being ambassadors for Sick Kids when Revitup for Sick Kids arrived at the University street entrance and revved their engines for the kids in hospital to hear and told us about the already 50,000 dollars they had raised for the Heart Centre at Sick Kids. Josh was a star that weekend and made most of the local news outlets that night and the newspapers the next day.

The following day we set off for a week of day camp at Little Trinity where the boys went on a wilderness adventure with Moses (a.k.a. Tim). They came home talking about the Bible and singing songs to Jesus. They also came home dirty and tired, and dirty... very dirty... really very dirty ;) BUT happy!

As soon as day camp ended we once again packed the car up and we made the move to the cottage (where we are now) for a month of country and beach life.

After the summer we had last year, this summer feels like a polar oppposite and I can see God's hand all over our time together as a family. We are renewed (if not rested). Josh is running and playing like kids his age should be, he's happy, really happy. Kaper is a monkey and a sweet heart and growing up so fast. He's discovering new likes and hobbies and is quickly developing into his own little person who is both independant and yet still my mama's boy at heart. It's a good age with these two, a really good age.

I haven't written much (at all really) this summer but as you can see... I am fully enjoying the moments with these boys while I can, and quite honestly we are having the time of our lives! God has been so good, so faithful, so incredibly giving. We are blessed beyond measure and we know it. I no longer take times like these for granted, we are in the resting place that God has provided and we are basking in the glow, we know we are blessed and we are sitting back and enjoying the time of peace while we have it.

While I have been busy with summer life, I have also been busy finishing a project that I have spent the last few years working on when I can. I have written a book and am moving into the editing stages of the process and then soon, the publishing phase. So, while I have been neglecting the blog a little I have still been writing and I will keep you posted on the release date. I haven't forgotten you, my faithful readers, and I have many more stories and things to share in the coming weeks. I do appreciate your patience and understanding!

Once upon a time I was walking a very dark road, I couldn't see the path below me or my hand in front of me but it caused me to look up, and what I saw were millions of stars lighting the sky. They were beautiful. Last summer was dark, I couldn't see where I was walking, I couldn't see my hand in front of me, but this summer I am seeing the stars and they too, are beautiful.

Many blessings to each of you.
L