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

'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.

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.

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.

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.

I need you, every hour I need you.

The silence has been killing me... every day I search for a little bit of time to sit and write, just a moment, maybe two... and every day I come up lacking. Then all of a sudden it's been a few weeks since my last post and there is so much to say that it becomes overwhelming to sit and put it all into words. I will however, try.

I once found myself on the top of a mountain in the Austrian alps with a bum knee. I was sitting there contemplating the hours it took me to reach the top and the agony that awaited me on the climb back down that mountain. I sat in contemplation for a long time, gathering strength, hoping for a relief from the pain that splintered through my knee in fits and bursts. When I finally gathered up all the courage I could muster I stood, and slowly, step by step, painful crunch by painful crunch I made my trek down.

They say that the climb is the hard part, you are tired, you are out of breath and your thighs burn the longer you climb; there is a reward waiting for you though and once at the top, viewing the valley below you it is easy to forget the exhaustion you felt only moments before. However, the decent... the decent can be wreak havoc on your already tired and sore body; the jolting down word steps, the impact on the legs, the post awesome view blues can be wearing on your body and soul. That day was like that for me, each step sent a jolt of pain through my knee that screamed and begged me to stop. I could very easily have just stayed put. It was summer after all, there was no risk of dying from exposure, and it was Austria... no bears or cougars or other scary animals lurking around waiting to make me their supper. I came upon a meadow at one point and sat in a field of wildflowers, the sun warming my back, the breeze cooling my sweaty brow. I sat there and knew that if not for the fact that people would worry about me I could very easily become one with that meadow. The urge to stay in that spot was strong, to this day when I think of that meadow I can feel the sunshine, smell the wild flowers and feel the cool breeze on my cheeks. I just need to close my eyes and I am back in that spot. For all the pain, the fear of moving forward, that place still brings me peace.

Sometimes I feel that I am in that decent again, fear, worry, pain... with each step of that decent I can feel it clawing its way up my throat and I long to stop and find a field of wild flowers to escape in. When I find such a place, where life stops and the peace sets in, it takes every ounce of courage I have remaining to get up and move further down that mountain.

A lot has happened this last few months, it seems that every aspect of our lives is in turmoil. Not one area of our lives has been left untouched by something or someone meant to cause anxiety and stress. We have discovered that Joshua needs eye surgery, nothing major by comparison to his life story, but a worry all the same, Kaleb has been suffering this month more than any other from asthma that won't ease; we have had stress thrown at us from every possible angle and I see no end in sight for the moment.

Then this morning we sang a song in church, and as I sat there singing 'I need you, oh I need you, every hour I need you, you are my one defence, my righteousness , oh Lord how I need you...' I found that meadow... for a moment I felt that peace that can only come when you give it all up and admit you can't do this alone. When the song ended, when I was forced to move I was afraid, I didn't want to make the step out of that peaceful place I had found myself... but life is fluid, we need to keep moving.




That day on the mountain, as I made my final downward steps before reaching flat land I remember thanking God for getting me there, for being the arm that I could lean on to ease the pain. Today, as I moved through the rest of my day I found myself saying the same prayer...

On Wednesday we face ECHO day... for those new to this blog that means that we go back to the cardiac clinic for more tests to show us the state of Joshua's heart. Every time I feel anxious, every time, no matter how many times we have done this in the past I fee the familiar clawing at my throat, I have the same nightmares, the same tremors run down my spine.


On Thursday we head to the doctor with Kaleb to investigate further Kalebs allergies and look at some options for therapy for him and again on Thursday Josh sees a dentist because as luck would have it, the kid has a third adult tooth up there and it needs to be surgically removed... it's actually laughable... if it wasn't so... well, sucky for lack of a better word.

Oh I need you, every hour I need you, my one defense... oh Lord how I need you.