I am FLOORED... Awed and left humbled.

Ever since Josh turned one years old we have been struggling through the process of stroke repair, (his stroke happened at 3 months of age) language development and endless hours of therapy... it's been a struggle, a discouraging endless struggle. I have seen countless doctors, therapists and spent hours on the phone getting assessments and support. We fought every step of the way, we had to learn patience, we had to accept help, we had to battle the discouragement...

Last October Josh was diagnosed with epilepsy (resulting from the stroke) and he was given medication to prevent the seizures...

This year is his final year at Bloorview and at the start of the transition process I asked if we could get another psych assessment done because the medical situation was different (i.e., the seizures were being kept under control and he was finally - for the most part sleeping most nights). I wanted to know if those things would change his overall outcome.

All along this process we have been told that Josh would always have a language impairment, that he would likely always have a learning disability, and that we would have supports in place for him as he needed them. In other words we were told 'to get used to it, this would be his life'.

Today I got a brief overview from the phycologist who did the new assessment on Josh.

She said that the results were so dramatically different (from his assessment last year - just one year) that she had to score it twice thinking she had made a mistake... TWICE! His cognitive abilities (verbal and visual) have gone from seriously impaired to AVERAGE for his age!!! Let me repeat... VERBAL SKILLS ARE AVERAGE!!!! This is HUGE!! HUGE! I can't stress this enough!! We have been told all along that he would have a learning disability his whole life... yet they now say that they can't classify him as an LD because it's just not 'bad enough' and they feel that he may well be in 'catch up' mode. They want to re-evaluate in grade 3 to be sure but feel that given his current rate of advancement it's entirely possible that with some help he can catch up without issues. That with all the school missed, with the seizures, and the other medical situations it could explain why he's behind and they feel that with added help he can catch up no problem.

I AM FREAKING OUT!!!! How awesome is God!?! This is such a HUGE answer to years of prayer... I don't even know how to articulate myself properly! When I think of all the little details that had to fall into place for all the different supports we have had... the help from the Bishops company to get him therapy, and the special pre-school, the acceptance to Bloorview, even the epilepsy diagnosis that seemed so disheartening at the time... How can I not sit and praise God for every thing that has gotten us to this point? How can I not feel humbled...

That's it... just had to write to tell you all (who have faithfully followed and prayed) how incredible God is, how amazing my son is, and how proud I am of him, and ... well... just to share this awesome answer to literally years of prayers!

not always a Hallmark card

Mothers day brings so many emotions to the table... it can be a joyous day but it can also be a day filled with bitter disappointment, hurt, searing pain and grief. Mothers day is not always the pretty Hallmark holiday that is plastered on every card or shown for weeks on Facebook videos.

I think of the mothers who lost their children, the mothers who miscarried, the mothers whose child died before they got a chance to take a first breath. I think of the sons and daughters who lost their mothers, who grieve what is now a memory. I think of the men and women whose mothers failed them and hurt them. I think of the women who want nothing more than to be mothers but struggle with infertility or haven't yet met someone to share that journey with. I think of all these things and while I celebrate my own mother and my own sons I ache for each of these as well.

This year, acknowledge the pain that often lies in the hearts of the women you greet today. See the struggle in their eyes, show compassion. Hug the women in your life who you know have loved and lost, who dreamed but didn't conceive, who hoped but didn't hold their child, who have known the pain that comes from a broken mother of her own. Hold them, acknowledge them, stand beside them and grieve with them.

Mothers day isn't all tulips and sunshine...

Decade 4

Tonight is the last night of my thirties...

The last decade has been absolutely amazing... I remember when I turned 30, I was living in Austria and I didn't know it then but my life was about to take a 180. It was a tumultuous turn, a hard turn, a scary turn, but when I look back on that turn now and see where that new road lead me I can say with total assurance that it was the best thing that ever happened to me. I returned home to Canada shortly within 6 months of my thirtieth birthday, not so much on a chariot of triumph either. It was a leap of faith for sure, but it felt like a let down at the same time. I had never intended to come back to Canada.

Funny how we plan one way and it turns out totally different. I have learned that nothing is set in stone and I am totally okay with that because I have also learned that my plans aren't nearly as great as the plans God has for me.

My thirties brought me Tim,  then the boys and together they were the greatest blessings I have had in life. These men have taught me so much about myself and God; they have taught me about faith, commitment, relationship, forgiveness, mercy, peace, joy and laughter. They have, together, made me a better person, and together they have shown me that the value of the cross lies in the death of our old selves and the birth of our new creation. It has been an exciting ten years.

Saying all that, one would think it would be hard to let go of my best years of life so far... but I have learned a few things that make this next step an even more exciting time. Turning 40 is an absolute joy. I am so excited about what lies ahead! Gone is the girl who didn't know who she was, the girl who was self conscious and cared too much about what others thought of her. In her place I have discovered a woman who knows who she is. Life hasn't turned out how I thought it would when I was in my twenties... but as it happens... that is a great thing! Age is not something to be ashamed of, age is wisdom, it's experience, it's self confidence and peace and beauty and joy and restoration and maturity. Age brings lines and greys and roundness... but all of that is just the outer shell of the person inside; the woman who looks in the mirror and sees in her mind the good times that brought the laughter that gave her the lines, the tears and stress and the tough lessons that brought those greys out of hiding, the roundness that came from enjoying meals with her family and date nights with her best friend and partner in life.  I look at my Mom and I see that all of this is truth. Beauty isn't what's outside, it's not what size you wear or cup size you are, it's not in the curliness or straightness of your hair, it's not the clothes you wear or the shape of the hips that you squeeze into those jeans... it's who you are. It's the compassion you show, the kindness you give, the wisdom you have shared, the peace you bring, it's the way you tackle life or the way you stand back up when you fall, it's the way you share and respect those around you and it's the way you love. As an aging woman I strive for those things, and if I get a bit round or grey ... I am okay with that. (Though I will probably buy some dye for a bit... Im still vain enough for that). :)

For the women I know who have gone before me, who are now sitting where I hope to one day be. Thank you for your wisdom. Thank you for being leaders in how we as women should view ourselves, thank you for the comfort and hope you have offered and for the beauty that shines through you.

For those younger... don't let it take 40 years to learn these lessons. Embrace it now. God made you exactly as you are, and you are beautiful. It's not new but I will say it again, beauty fades but character lasts. Put the added effort into your inner beauty that you put into your outer beauty and it will never fade.

a beautiful melody

We are on the flip side. That is a beautiful place to be. No more waiting, no more wondering, no more anxiety... just peaceful restoration. It has been a beautiful journey really, in an odd way. The love we as a family felt through out this process has been unprecedented. My email and texts notifications were continuous through out the entire process, reminding me of prayers being sent up from all over the world. Friends and strangers a like have gathered us up and held us before God and we have felt the arms of love and support surrounding us. We have witnessed the amazing capabilities of modern science, we can see first hand where research is taking us and it's surreal and awesome. We knew fear and anxiety before the this started, Josh expressed the fear of dying after his pre-op appointment and the response was an out pouring of red shirts, shoes, hats and ribbons at church on Sunday morning and flooding Facebook in the days leading up to the surgery. I can't tell you what that does to a person, to see an ocean of red before you, person after person walking past you to go to the communion rail, all red. Josh and I sat together and watched in awe, tears were streaming down my face as the power of that support sunk in. The smile on his face brought us both peace and gave him the strength and courage that he needed.

On Tuesday when we got to the hospital the surgeon explained that there was a very real possibility that the valve wouldn't fit inside the remaining valve (the melody valve sits inside the old valve) and that we may need to have a special company come in to custom make a valve for him but it would take a few weeks. I can't explain why (other than God whispering to me)... but I told the doctor 'this might seem crazy to you but we are so covered in prayer today that I want to try'. So he did. The first words out of the doctors mouth when he came back to us after the surgery were 'well, it looks like those prayers worked'. The old valve was much narrower than they had anticipated and the new melody valve fit beautifully with no leaks. There was a complication with a scratched vein that caused a dissection and the blood vessel and the vein fused together. We were told it could require another surgery and we were sent to have an MRA (similar to an MRI). In the end they feel that the vein isn't as bad as they had originally thought and it should heal itself (it will require follow up at some point soon).

The melody valve in place

The damaged vein

The awesome cath. surgeon

Josh was in great spirits, he had a few moments of panic (right before they put him to sleep - I was allowed to be there until he fell asleep - he fought the mask and said he wasn't ready yet but I prayed for him and sang him a song and he drifted off. He also panicked in the MRA machine but again he rebounded and showed off his brave to the doctors and there was no need for sedation.) When he came out of the MRA he was so proud of himself and phoned his Dad to tell him how brave he had been. It was pretty awesome to watch. At one point (the night of the surgery I think) he turned to me with a wicked little gleam in his eye and joked about having survived.

So, that is the breakdown of the last week. We were discharged at dinner time last night! He actually went to school today (with activity restrictions) because he decided there was more activities to do there and he was bored after being home for two weeks.

God has been, and is always good. We have been so humbled by your generosity and love through out this whole process and quite frankly there aren't enough words to say how deeply we appreciate your support.

Some pictures of our week:

Josh was thrilled with being able to 'moon' the entire hospital while he waited for the surgery to start

Kaper had a difficult time, worried about Josh, so he came daily for visits.

They played spaceship... until the bed broke :S

Josh's visual skills used to describe what happened to him

He even had a special visitor

At 6:00 on April 30th he was discharged!

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

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

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.

Redemption of the pain

A few weeks ago Tim gave a sermon at Little T and in it he said that in biblical times when they spoke of the heart they didn't just mean love, they meant that it was the core of who you are, it was the center of you and what makes you who you are. I look at Josh and I see that, I see that his heart has defined him, his strength, his interests, his dreams and sometimes his nightmares have all been shaped by his physical heart and the struggles he has faced as a result of it. What I also see, and what I think they meant more by the terminology of the day is his heart, the spiritual side of himself that feels joy, love, hope and compassion. A week or so ago we visited a sick friend in the hospital, Josh was with us because we had just come from an appointment at Sick Kids. He stood by our friends bed and looked at his 'ouchie' (he had just had surgery) and you could see in his eyes understanding. When we were leaving Tim asked our friend if we could pray for him and before Tim could begin Josh stood up beside our friend and clasped his hands together and prayed out loud for him. His empathy, his compassion, his heart, has been shaped by the pain and suffering that he has himself gone through. He understands what it is like to lie helpless and in pain post surgery, and he knows the comfort that comes when someone stands beside you and offers up a simple prayer.

I don't think I will ever understand suffering, not on this side of heaven at least, but sometimes, on rare moments like that I catch a glimpse of how God can use the suffering to spread love and compassion. Sometimes I see for myself what Josh's life can do for others and when I do there is nothing I can do but stand back at watch with wonder at how God can turn things around

When our journey of the heart began I asked God endlessly 'why'? I have sought answers, I have asked for the reason, I have searched for the purpose... I don't think I will ever know, we are broken, all of us, we all have fallen short, we all have suffering in our lives, we all have known, do know and will know pain. It is a given, it is the only guarantee in life (aside from death). Yet, sometimes He allows us to see the way that he can redeem that suffering, all that pain, and use it to help others.

7 years.

This morning when I woke up I could hear Josh talking to his brother, I wasn't coherent enough to really know what they conversation was about but they were chatting, not fighting; an important distinction these days.  As I lay there trying to get up the courage to get out of bed and face the day I couldn't help but be transported back 7 years. 7 Years ago today I went to the doctor for an ultrasound and we booked an induction date for three weeks from then. I remember being so scared, having a date made everything that much more real. Tim and I talked in the car ride home and I remember both of us saying we weren't sure we were ready yet.

Less than 24 hours after that appointment we were in the OR having an emergency C-section and meeting Josh for the first time. As they wheeled me into the OR Tim and I were praying that he'd make it, we didn't care about anything else, we just wanted him to live.

Just a few years later he was turning four and as I said goodnight to him on the eve of his birth my only prayer for him was that he would talk to me. I didn't care what he said, I just wanted him to speak.

Today is the eve of his 7th birthday and I look back and see all those answered prayers wrapped up in the gift of this amazing little boy, who lives life to the fullest, who laughs, who brings joy, whose love of humour brings joy to our home and laughter to our lives, who is braver & stronger than most of the people I know. He did live, and his words I love you each night are beautiful reminders to the faithfulness that God has shown us through out this journey. Just this week he stood beside his friends bedside after his friends surgery and he bowed his head, clasped his hands and prayed for him... then laughed at me because I almost cried... this is Josh. Fully in the moment and always seeing humour in life.

Watching Josh light up this morning because 'It's pyjama day'! Seeing his smile when he describes 'the perfect cake' (which I have to bake - scared) is a soothing balm. I have often heard people say 'I don't know how you do it?'... my reply it seems is this:

I wouldn't want to not do it, this child is who he is because of where he's been. I am who I am, because of where Josh has taken me. Our story is not a sad story, it's a story of overcoming, it's a story of joy and miracles, hope and love. There is no greater joy in my life than recognizing the gifts God has given me, and the top three are Tim, Josh and Kaper. I wouldn't choose another way, I wouldn't pick another kid, I am sitting front row to a thousand miracles!

Since I am fully aware of what tomorrow (his actual birthday) is going to look like, I decided to write his birthday post today, on the eve of.

Josh,

One day when you look back on your life I hope that you too will see the many ways that you have touched our lives, and the lives of those you love. My prayer as you grow is that we continue to see the miracles and healing comes your way. I pray that you continue to grow strong in your faith, that you attain each dream you set for yourself. Daddy and I believe in you and know that you have what it takes to do anything you want to do (even be a scientist who makes hamburgers walk). We are so proud of who you are, and all the things you can do. We love you,'all the way to space' ;)

Mummy xoxox

Hope

I have told you about this exciting new phase in my life, the stage in the game when I put my words into actions and begin to make some change. Before Christmas I announced the birth of Joshua's Hope, a charitable organization that will focus on the future of Cardiac Care, for kids and adults alike.

Money raised by Joshua's Hope will go directly to the Labatt Family Heart Center at Sick Kids in Toronto. There it will be used for the highest priority needs for the center, with a focus as I said on the future care of these kids.

On Monday our logo was finalized by Andrew Haughton, my amazingly talented brother in law. Tuesday and Wednesday I attempted my first ever go at a website... and now the fun begins!!

I am so thankful to all of you who have been such an amazing team of supporters as I have gathered information and experience through out this process, without you I wouldn't be here and I am fully aware of that. I deeply appreciate all of you. Thank you.

In a few days time we are celebrating Joshua's 7th birthday... that alone is a miracle. It seems fitting that all of this comes together in time for that big celebration. 7 years of joy and laughter, tears and heart ache, fear and worries, but above all those are love and hope. Hope. Nothing can happen, nothing can change without Hope.

click below to check out the new website!

Hope for their lifetimes starts today.  

Life does...

January is almost half over... I don't even know how that happened so quickly. On Sunday I realized that Josh's birth is literally around the corner! I remember when I was a kid and the years seemed to stretch out before me and days passed like eternity. Now I feel like I am in warp speed... Yesterday I was walking the dog passed a car (an empty car, on a seemingly empty street) when the car suddenly started by itself; I actually caught myself looking for David Hasselhoff! That was when it hit me... I am quickly getting older.( and if you know what I am referencing then you too are getting older my friends) This new year marks the end of my thirties, come May I will enter a whole new decade of life, a new phase, a new chapter and I do so with so much excitement! My twenties were not so much fun, but my thirties were the best years of my life and it makes me look forward with anticipation to my forties.

I have so much to be thankful for. Looking back I can how God used the pain of my life to shape me, to change me and to bring me into this new person who is so ready to get old and face new challenges. It gets busy, life does, and it has challenges, life does; but when I can see how the things I have learned along the way can bless others then I am once again just so grateful. To know that a purpose came from the pain brings peace, and sometimes that has to be enough.

I am late in wishing all my readers a Happy New Year, but I do, I wish you all the joy and peace that comes with life, I wish you hope, strength, endurance, growth and laughter, even tears that move you to healing.

May God go with you into 2015;
Laurie

Merry Christmas from the Haughton House!!

Best gift EVER... meet the newest Haughton... MAX!

A single light

It is Christmas eve. I love this particular holiday. This year we gifted the whole family with a new puppy named Max. He's a joy to have in the house but he is a puppy and he can be rambunctious; lots of walks are needed to keep him at a good level of sane while in the house. My shoes demand that he be too tired to chew on them! This morning I set off for a walk with him, the streets were fairly quiet, it was mild out and it was still dark. I passed several people on my walk and a funny thing began to happen. In an age when 'Merry Christmas' has been replaced by 'Happy Holidays' I was pleasantly surprised when a young man passed me and wished me a Merry Christmas, a few more steps and an older woman walking her dog also wished me a Merry Christmas, then it was the older homeless man on the corner near Queen, then the Muslim woman with her son, and the Muslim man walking his elderly parent into the grocery store. In fact, not once, did I hear Happy Holidays, and I was walking through a very Muslim area of town. Each person I passed (except for a few who seemed to be rushing to get somewhere) smiled at me as I passed and wished me a Merry Christmas. It was so great! Their smiles, their Christmas greetings gave me the spirit to move down the street offering the same smiles, the same greetings.

Tonight, we went to the service at the church where the children put on a very cute portrayal of the Christmas story, it was mayhem. Kids dressed as sheep, and several animals that I couldn't identify... even an elephant, angels, shepherds, scribes,  kings, and of course Mary and Joseph. In the madness something came home to me... this is exactly what Christmas must have been like back in the first century. Not the trees and gifts or things like wishing people the latest politically correct thing... but the madness, the mayhem. The busyness that saw a pregnant woman needing to give birth in a barn, the animals, the noise, the smells. At the end of the service Tim took the advent candle and he lit my candle, I in turn lit the boys candles and we turned and lit the candles of the boys behind us... the light spread from row to row until the entire church was lit; all from a single light.

I think of the beautiful light of the star that night, how the light of the world was born in that barn, and that single light has passed from person to person and lights the world. It may not always seem bright, in fact in recent days with the threat of terrorists and the fear of the politically correct it seems that it's darker than ever; but that light is still lit. It is alive in me, it's alive in many people I know and as we move into the new year my prayer for you is that you pass your light along, share it with the person sitting behind you so that we light the world.

Merry Christmas my friends. Thank you for sharing in this wonderful year with our family!

Joshua's Hope

For the last three years I have been feeling led to start a foundation to aid in the fight for better adult care of Congenital Heart Survivors; I say 'led' because I felt that God was asking me to do it... and my answer was always 'No, I can't'. I am not sure if you know what it involves (even I don't know the extent of it...) but it takes a lot of 'seed' money and lawyers and buerocracy that I know nothing about. It was/is overwhelming to me so I continued to shut the idea down. Money alone stops me, forget all that red tape stuff. So I have moved into the 'mother volunteer' role and it's been serving me well, serving the agencies well, and hopefully one day serving Josh well. However, this past year the answers have become increasingly clear. I want to do more than be a bystander to Joshua's future; I am simply not satisfied with waiting for others to get the job done. I want to be at ground zero, on the front line; I want to be a part of making it happen. I have learned a lot about the health care system, I have discovered the amazing things that are happening, and the awesome things that are about to happen. I am learning daily about the specialty of Congenital Heart Defects, and how incredibly hard they are to treat. I am also learning about all the problems, the setbacks, the stumbling blocks that face Josh and his peers in the years to come, if nothing gets accomplished now to change that for them.

My dream, shared by some key people is to have a Heart Institute within the walls of Sick Kids that treats all Congenital Heart Defect patients. Pre-natal, pediatrics, and adults alike. All patients, one model of care, one building. It would be a first, it would be a ground breaking project and it would forever change the face of medicine, particularly in this field.

The first steps are baby steps, reaching out to parents of CHD kids, sharing with them the key problems that face our kids, talking with our government officials, asking tough questions of the government and boards of the hospitals. It isn't going to happen over night, sadly it may not happen in my lifetime without a LOT of support from key people... people like you, people who have read about Josh's story and been touched by it.

A few weeks ago I once again entertained the idea of starting a foundation, with the key mandate being to aid in this endeavour. Once again the same issues arose... but then I had a thought, God inspired if you ask me. I could start up a third party organization under the umbrella of the Sick Kids foundation. The name even came to me on the spot... Joshua's Hope. I contacted my rep at Sick Kids and asked her about it and received a green light... and before you know it, here we are!

Joshua's Hope will raise awareness about the growing issues surrounding adult care for kids like Josh, and the money we raise will go directly to the highest priority needs of the Labatt Family Heart Center at Sick Kids Hospital, my aim is to help fund the little projects that will lead to the larger project of this Heart Institute. This is a huge undertaking, it will require skills that I didn't know I had but will have to come up with, it will require the help of some good volunteers, and yet, I know that it can happen.

I haven't put together all the little bits and bobs just yet, with Christmas on the horizon I have decided to wait until the new year to think about websites and things of that nature but I urge you to visit our donation page on the Sick Kids foundation website (Joshua's Hope). I also ask you to share this with your social media contacts so that we can start getting the word out. Your help in this is both greatly appreciated and SO necessary! I really can't do this without you.

Hope for their lifetime starts today,
L

How can you help?

Yesterday I posted about a project that I am going at full force in the coming years. The dream of a Heart Institute that melds pre-natal care, pediatric care and adult care under one roof, one care team, one model of care. As I mentioned, this is not a far-fetched dream, the window is open but it will only be open for a shot period of time. If ever there was a time to change the adult care system this is it. I asked each of you, my readers, to help me and I promised to share in the coming days how we need your help. Starting on a journey likes this takes a lot of noise, we need people to stand up and take notice. We need to make them see the problems that need addressing. You can start by sharing yesterday's post with all of your contacts on social media. This is a huge step towards change, social media these days can breathe life into a cause when enough people care to share. (Look at what happened with the Ice bucket challenge!).

Today I am going to ask you to think about doing more than reading about Congenital Heart defects. I am going to ask you to write to your local politicians, you MP your MPP, your city council rep. I am going to ask you to write to every contact you have, everyone with any kind of influence or power, anyone within the media you can think of who may be able to help by lending their voice to this issue. I am asking you to stand beside me and join voices with me. Contact me if you need to get an email address or need help composing the letter... or simply copy and paste the article from yesterdays' post. I am happy to help you.

We need media contacts to get a hold of this story, to share with the masses about Congenital Heart Defects, the gaps in the adult system, and the struggle that patients face.

To make this happen it will take patience, and time, and some powerful and influential people to start talking about it and making it a priority, but, and this is big... it will take you. Friends and family who know and love someone who suffers from a congenital heart defect. Your voice matters. For every child (for the most part) who is born with a CHD there are two parents, four grandparents, and countless friends and extended family; all those people are tax payers with a voice.

This is a large undertaking: I know that I am asking a lot. However, I also know that you all have shown me before (#redforjosh) comes to mind that when you want to, you can make a difference.

Thank you for all your support and action! Feel free to leave comments when you have taken actions to help this endeavour! ---- AND SHARE yesterday's post on your social media... share today's post. MAKE SOME NOISE!!! :)