Photographs by Laurie @ Horizons Photography

April 24, 2015

Do you trust me?

Of all the things on this journey that we are on with our family there is one thing that you are continuously learning... trust. Trusting God to be specific. It is not the easiest thing to do, in fact I daresay it is the hardest part of putting our faith in God. I believe, yet there are many days when I find that I am trying to take control back, that my trust is slipping. Yet, always we are brought back to that one question. Do you trust me? The answer is sometimes given with a gulp or a sigh.

Yesterday was pre-op for the catheterization on Tuesday. There are tests, and questions to answer, there is a lot of waiting and then that moment when you are face to face with the surgeon and in the face of all your anxiety you hear that whisper 'do you trust me?'. The moment when the surgeon runs through all the horrible things that could happen, all of your largest fears laid out for you on a paper in black and white. That moment when you look and see words like, stroke, vein perforation, blood transfusion, infection, death and then he hands you a pen and asks you to sign your name giving them permission to take all these risks with your son. That is the moment when you come face to face with God and have to answer the hardest question of faith. Do you trust me?

There was a time during our journey when I couldn't bring myself to sign that form, when I would force Tim to be the one to do it because those risks, those risks were just too much for me to give permission for, when I had to look God in the face and answer 'No, no I don't think I do trust you enough'. Things have changed in my life, I have seen that growth happen slowly over time. I can look at all those horrible things and I can face all those fears because along the way I have come to know three things. God loves Joshua much more than I do. He loves me, much more than I ever imagined, and he has a plan to redeem the pain we have all faced. I don't know what that will look like in the end; and I can only say I hope it turns out the way I want it too, but I know this... When God whispered 'do you trust me?' yesterday. I took the pen, signed the form and whispered 'yes' back.



*Joshua's catheterization takes place at 1:00 pm on Tuesday April, 28th. It set to last between 3-4 hours


April 21, 2015

breathe



A lot has happened since my last update, and when I say a lot, I really mean a lot. So, let me skip the unimportant and start at last Thursday. It was a quiet day, the kids were at school, I enjoyed a walk in the beautiful spring weather to go downtown to give blood. Lightheaded I made the trek home and then to get Kaleb from school. When I got there I found his class in the park behind the school, everyone was playing but Kaleb was lying down on the bench (totally not his normal behavior! The teacher spoke with me about how he has been very tired lately (something I had noticed as well at home). We started the walk home and Kaleb began complaining that his side hurt when he took a breath. I became concerned and after further questioning I decided it would be best to take him to the ER to have him checked out.

We got there and he had a whole bunch of tests, they took blood to test for everything from signs of cancer to infection, he had X-rays to look for pneumonia and an ECG to check his heart. It was decided that his symptoms must be from his asthma. After a lot of asthma meds (the kid was jacked up!) we were sent home. We had to go back to Sick Kids on Monday for more lung function tests so I had Kaleb home from school yesterday. Josh was up most of Sunday night with a bad cough so he too was home and headed to his Grandparents to look after him. At about 8:30 am I had a phone call from the doctor in the ER. Kaleb's ECG results had come back from cardiology and the results were abnormal, she wanted us to get a referral to a cardiologist from our family doctor and have a follow up as soon as possible. Now, I don't think I need to share with you the panic that those words raised in me, not after everything we have seen Josh go through with his heart, not after there were concerns when I was pregnant with Kaleb... my brain shut down and the only thing I could think was 'I can't do this again'. There was NO WAY I wanted to wait for an appointment with our doctor to get a referral to a cardiologist, the idea of sitting on this information actually made me want to vomit. I immediately wrote to Joshua's cardiologist and asked her for advice and within minutes of hitting send my phone was ringing and her voice was calming talking to me while I tearfully asked her what I should do. This woman, I need to mention, is a godsend! I have loved her and admired her for a long time now but yesterday she made me believe that she has wings and may actually be an angel. She said she had seen the ECG herself and thought of us because of the last name but she wasn't sure what Joshua's brothers name was. She then told me to bring him to the cardiac clinic right after his lung tests and she would personally oversee his follow up. No need for a referral, no need for red tape..See why she's so amazing!? How without yet praying, God answered the prayers of my heart?

We did the lung tests and then went to 4A to get a new ECG and speak with our cardiologist... turns out that his new test was normal, that the results from the ER one were probably skewed because of his asthma and that if the fatigue continued we should see the family doctor to figure out the root cause, but (and this was the most important part - it's not his heart!!)

Breathing is something we take for granted... but let me tell you, the first breath after you have been holding it all day is such a beautiful thing.

This morning, I finally got the call I have been waiting for. Joshua's catheterization was been scheduled. Quite possibly one of the worst days in April though, it's a day that I had a very important school meeting scheduled for Josh's transition to PS, and it's Tim's and my anniversary... and it's also the day BEFORE my parents fly home from Wales. April 28th.

As a side note - it was 7 years ago this Friday that Josh went in for his second catheterization - with this same surgeon - just four days before our first anniversary. That was the day that Josh had his stroke.  (trying really  hard not to dwell on the similarities)

So, tomorrow we head to Sick Kids for Josh's eye surgery pre-op (no date for that yet) and then on Thursday I take him for his pre-cath.

I know that anyone reading this is and has been praying for a long time for our little guys, and I know I don't even need to ask you to hold our family up before God again in the coming few weeks. As mentioned this is the first time Sick Kids will be placing a valve (the melody valve) in this position on a child. (It has been done before... just not by this surgeon and not at Sick Kids). Being the first at something is great but as you can imagine it's totally less than ideal in situations like this. I am absolutely terrified if I am going for totally honest here. Due to to Joshua's small size (as opposed to adults) they will be going through his neck which I understand heightens the risks of strokes. Again, if I am going for honest... this is one of my greatest fears surrounding this surgery.

That's it for now. I will have more news after the pre-op on thursday Im sure.

L


March 29, 2015

and so..

On March 4th Josh had an ECHO. The results were frustrating and negative. His tricuspid valve is pretty much non existent and no longer functioning. To quote the doctor 'it can't get any worse'. I asked her at the time of the appointment if there is any way that the replacement could happen in the cath lab, and she seemed genuinely usure. Let me back up for the new readers here...

Josh has had 4 surgeries, 3 pulmonary valves, 2 of which rejected within a year to 18 moths. This time around the pulmonary valve is holding but 18 months in and his tricuspid is as mentioned almost completely rejected. The big question and quite frankly the one that no one seems to be able to answer is why this keeps happening.

So back to the ECHO. Basically I left it with the doctor to investigate with the cath surgeon about our possible options (if any). The pulmonary valve is often replaced via cath. but the tricuspid is in a more difficult location and isn't often needing to be replaced in children. (In fact when I try to google this I come up empty).

Yesterday I had a phone call from  our cardiologist. She has spoken with the cath surgeon and he believes it could be feasible to try. This is good news as we don't need to open his chest, and it's scary news because its still an invasive procedure (albeit less invasive than stopping his heart and putting him on bypass).

On April 6th our cardiologist and a team of surgeons will meet to discuss Josh's case, to make sure they all agree with this possible next step. We would really appreciate your prayers surrounding this meeting, most important would be the best possible outcome for Josh. We really would like to have this behind us for longer than 18months... I don't think we've ever made a full 2 years between interventions and replacements and it's wearing and scary. If only we could figure out why he can't keep his valves... ?

That's it. That's our latest update. The doctor kindly refers to Josh as 'unusual'... I am tempted to call him something else... anyway you look at it the kid is a rare bird in many ways and I love that about him as much as it drives me insane in moments like this.

Answers would be nice...

L

March 25, 2015

'See that cross mama?'

This an old picture of Kaper, but seemed absolutely fitting for this post


The other day on the walk home from school with Kaleb we passed a church that had a cross above it's door. We have passed by this church many many times and he's never taken notice of it before but a few days ago he said 'mama, see that cross?'... 'that's like the one that Jesus died on right?' and I agreed. Then he said 'Do you know why he had to die on it?' I said yes but I asked him if he knew and he said 'yup, he died because he loves me so much and wanted to save me.'

It was a statement of fact. No hint of a question. He died because he loves me so much and wanted to save me. So simple right? If a five year old knows it, why do I still struggle sometimes to understand the depth of that love for me? The cross has long been a symbol of his sacrifice and love for us, Easter is a time that we reflect on that sacrifice and take comfort in our salvation. The vale was torn, the kingdom of heaven is open to us, we are adopted into His family and his arms await us on our physical death.

The last week has been a bit of a journey for me, I have begun again to ask God some tough questions. What he meant when he told me certain things. What about his healing promises, what about Josh? I have asked him to speak, and speak loudly to me... and the gates have opened and he's been talking to me. Sometimes rebuking me for faulty thinking, sometimes clarifying and sometimes confirming.

I was chatting with Tim this morning over breakfast and sharing with him some of the things God has been saying to me lately. Back when I was pregnant with Josh I was clearly told by God to be 'strong and courageous' and that 'with man it is not possible but with God all things are possible'. I have clung to those two things, first; knowing that it would be hard or he wouldn't have asked me to be strong and brave and second, that he would do the impossible. I shared with Tim how frustrated I was that he hadn't yet fulfilled the second part of his promise to me even though I had been trying to be strong and courageous as he had asked. Tim shared with me a story.

He had been in school working and studying towards his dream of being a missionary doctor and was about to sit for his M-CAT; he was praying about it, asking that God would help him and the night before he was to sit the exam he felt that God said to him 'I will make you a great healer'. Tim obviously interpreted that to mean that he would do well on the test and become a physician, he went to bed that night, slept soundly and did very well on the exam that day; but 20 years later 15 of which he has spent as a Pastor and he says he is still waiting to know what God meant that night. Tim might still be waiting but I can see the ways in which God has made Tim a healer, not the physical healer that Tim had thought he would be, but one who helps people on the road to spiritual healing, the one who guides hearts and minds to a full and complete healing through that death on the cross over 2000 years ago. It begs the question, am I seeing the whole picture? Can I see past the horizon? Is he working the impossible even now and I am missing it because it doesn't look the way I imagined it would?

When I look to the cross, what am I hoping to find there? Comfort?
Peace? Or like Kaleb said, should I just be see it and know. Know that He loves me, and he has rescued me. That part is done. It's finished. I am already loved, and I have already been rescued. I don't need to seek a deeper meaning, I am not going to ever fully understand his plan, and maybe I just need to be okay with that. Rest in the simple knowledge that he loves me.


March 20, 2015

what I didn't know I was missing...

Have you ever stopped and asked yourself 'what you need?' from a prayer perspective? I was asked to tell God what I need... but I have struggled with even knowing what I need. Then someone very close to me said 'you have stopped praying, everything you have asked for has come back with a 'no' from your perspective, so you simply stopped praying'. Interesting... because it's true and I hadn't realized it. How does one simply not realize that they have stopped praying?

The more I have researched Joshua's condition, both his stroke and his heart situations, the more I have come to grips with the fact that somethings can't be fixed. You can't fix the heart once it's as far gone as Josh's; you can patch it up (repeatedly) but will it ever be a properly working heart? No. It's a fact that I have sought to share with all my readers, CHD has no cure. Stroke damage, that can be fixed, but the more I read, the more I research, the more I find that all the symptoms from Josh's stroke are also very prevalent in CHD patients in general. New studies are being done that show the affects on the white matter that is being laid down during the time that the heart is also forming... and the 'side affects' are all very similar to what Joshua's experiencing, so can that be fixed? No. So, somewhere along the way, when all this information really began to sink in, I figured (subconsciously) why pray? Why ask God to heal him? It's not possible.

This same person who told me that I have stopped praying said ' we are talking about the God who threw stars into space'... (ie. he can cure a broken heart or injured brain).

I still remember when I was pregnant with Josh, I had no doubts that God would heal him. It was not a matter of if, but when. I waited; and I continued to wait until I just started slowly losing hope and slowly began to realize that the waiting was pointless and I needed to do this alone. It's been exhausting. I am so tired, tired of worrying, tired of looking at every thing as a possible sign of heart failure. Tired of waiting for the next shoe to drop. I am tired of not being able to help him, and it has left me in a spiritual and emotional desert. 

What do I need from God? I need my faith back, I need my hope back, I need my strength renewed, I need endurance and patience, wisdom and courage, I need his voice in my life, I need to look around and see his face. How did I not see what was happening to me sooner?

There is nothing lonelier than sitting in church, surrounded by people, singing worship songs about God the healer and thinking that he must not care about you, or your child because God the healer hasn't shown up, you don't know him that way. I have seen the comforter, I have seen the jealous, I have seen the Father, I have seen the protector, I have seen the patient, I have seen the loving, but the only 'healer' I have seen these last few years is the God who is the field Doctor, doing triage on my son but not truly healing him.

Ultimately, do I know that God 'CAN' heal? Yes, I have seen it in other peoples lives, I have seen it and it is beautiful and powerful and amazing. I have no doubt that he CAN. I just wonder sometimes why he won't.

A new journey will start for me today... I have no idea what will happen or where it will lead me. I am going to start to pray again. Not for anything specific, but just to get caught up with a friend/God I have been missing.

March 5, 2015

ECHO day

ECHO day... I have talked about it in the past; all the anxst that goes into that one day 2 times a year. The weeks of dreading it, the constant eye out for changes to report, the worry that the doctor will say something you didn't want to hear. Quite frankly it hasn't been very often that she has given us a good report. The way of heart defects is simple in it's diffiulties. Best case scenario is 'wait and see'... I used to hope for a report saying that he was okay now, now I pray for 6 months between visits. It's a shift in perspective. Living for the moment, enjoying the time we have today because who knows what tomorrow will bring; it's freeing in some ways and draining in others.

Yesterday the report was not so great, I think Josh has finally left our cardiologist stymied. No kidding... he is constantly doing things that aren't normal! I wish he would be less extraordinary for a little while.

On to the report; his pulmonary valve has seen very little change (a really really good thing!) However, his tricuspid valve which at the last ECHO was showing a sever leak has now gotten so bad that she said 'It can't get any worse' (basically the valve is there, but it is not functioning as a valve at all, so he might as well not have a valve). The right side of his heart has continued to grow and at this rate we run the risk of further complications which would be new problems for him. He is asymptomatic right now (another good thing) but the question remains, how long can his heart continue to grow at this rate? The other big question of course is why that valve is rejecting so quickly and so horribly. Once upon a time it was the pulmonary valve that rejected (repeatedly), but now the pulmonary is holding but the tricuspid is rejecting... it just makes no sense. (to anyone).

There are valves for the pulmonary that can be replaced in the catheterization lab, but there have not been many (that our doctor knows of) kids who have needed the Tvalve replaced like this so we don't know if it can be done without open heart. Our cardiologist has said she will speak with the cath. surgeon to find out how possible it might be... that is something you can pray for... if we have to do something I would prefer to keep his chest closed.

So for now, we wait... we wait for answers from the Cath surgeon, we wait to see the rate that his heart is growing and the trajectory that he is on. We wait for symptoms of heart failure... we wait; and the waiting sucks.

In other news, Josh's dental surgery is NOT neccesary. Not yet anyway, he will most likely need it when he's older but we can hold off for a while on that which is really great.

I also had Kaleb's allergy appointment today and we had some good news there too... we can introduce pecans, walnuts, brazil nuts and hazelnuts... (though I admit I am terrified to do). I did however buy myself some turtles loaded with pecans to treat myself after this week... I didn't share them with him, but I kissed him when I finished them, and I did it without fear. That's a good feeling.

It has been a tough few months, this week in particular was hard, but it has been such a comfort to hear from so many of you, your encouragements and offers of prayer mean so much. Thank you.



March 2, 2015

Identity shift



Have you ever thought you had your kids figured out? The youngest is like me, the oldest takes after his Dad... you know them best right? So obviously you of all people should know who they are, what they like, what their personalities are and what makes them tick...

Yeah... I thought I had it all sorted out. The Kaper... he takes after me in many ways and Josh tends to favour his Dad... except that I was wrong in many ways. Really wrong!

A few weeks ago Kaleb had to come home from church early due to asthma and allergies, Josh spent the afternoon with his cousin and Grandparents. Between his brother talking to him all morning, then all the kids in church and then an afternoon with his extroverted and talkative cousin he was totally done in. I put the boys to bed (they shared a room) and within minutes Josh was back downstairs announcing he just couldn't take it anymore.. 'Everyone talks! Too much talking! I need quiet! I need my own room!' It was comical really because he was so emphatic about it and as an extrovert I just don't get what the issue is. I would love to just be around people all day and all night. I talked him off the ledge and got him back into bed that night but on reflection I knew that he was right, it was time to sort out a space for him to call his own.

The next Kaleb was home from school because of his asthma so while he sat quietly in my office I went about clearing out space in there for Tim to move his office into mine and making Tim's office a bed room for Josh. It took all day but when Josh came home he had the surprise of his life; his very own room! He was beyond thrilled (he literally smiled for a week after!)

Over the following few days I looked into each of the boys rooms every day, and I began to see something of a trend emerging. I had always assumed that since Kaleb is more like me, and Josh like his Dad, that it would make sense that Kaleb would be the messy unorganized one and Josh the neat and sorted one. I was wrong. As the days passed I noticed that every morning Kaleb attempted to make his bed, he put his dirty clothes in the hamper and his toys were always put back into the box provided. Josh however, had clothes strewn from end of the room to the other, his toys deposited whereever he had last been playing with them. His bed was not made, not even once. Josh would come home from school and head to his room for some much needed quiet time after school and Kaleb often headed to the playroom downstairs.. the playroom had always been a mess, always! However, with Josh not down there I began to notice how neat Kaleb was keeping it. He would play with something and then when finished he would return it to it's rightful home. The more I noticed the more there seemed to be to notice. At school I watched as Kaleb neatly put his things away and became unsorted when the box for their lunch boxes wasn't in it's rightful place, when I joked about it with the teacher she said 'oh that's Kaleb, everything in it's place and keeping things tidy'. Even this teacher knew my child better than I did!

I had often forced Kaleb to clean the mess in the playroom believing it to be his mess, and there was always a battle about it. However, once I realized that it was actually usually Josh's mess down there I began to get Josh to clean his own mess up. Two things happened; Kaleb started to feel understood, and his attitude began to shift. The meltdowns have trickled off and since he now has his spaces sorted he is more at ease with himself and his environment. Josh, having been getting away with a lot all these years had actually been building an identity around being the 'good' kid, and as he was found out, exposed shall we say, he began to unravel at the seams. Kaleb also began to form a new identity, the one of the neat child and he took great joy in naming his brother as the messy one. As these two dynamics began to play out Tim and I began to talk to the boys about where they should build their identity... it has been such an exciting period of growth for all us.

Teaching the boys that they are not loved for how they behave, or the state in which they keep their room but rather for who they are to us. Our children, dearly loved for no other reason than they are our children. End of story. Nothing can separate that love from them, they are our sons and no matter what they do, say, think, become; they remain and will always remain, loved. As we watch them struggle within this shifting time in our family dynamics I have found myself considering where I have placed my identity. Have I put my worth in something tangible or have I placed my value, my identity in being a child of God, loved for being nothing more than His? As I said, it's been an interesting shift in our home, on all fronts we are all learning through the process.