missing you

I remember walking along the beach for hours with my Grandpa... we would catch tadpoles, watch the waves, make sand castles, dig to China, skip rocks, smash rocks together and break them to see what treasure lay inside them... the hot sand on our feet made me skip along until I reached the water and there I would hold his hand and we would splash our way to the store further up the beach. He would buy me a treat, often a popsicle, and then we would make our way back, sticky melting sugar water making a big mess; but we didn't care. We talked, though I can't remember what we talked about. Now that I have children of my own I can imagine that the conversation was about everything we saw along the way and I imagine I peppered him with questions about life. Those are some of my favourite memories of him. Those walks that for many reasons stand out in my memories as my special time with him. 

He was a quiet, stoic man. His life wasn't easy. Every ounce of love he had for me had to be masked, hidden, because unfortunately my Grandma wasn't an easy women. It took years for me to come to terms with that... maybe I am still working on that. Those walks, just he and I, there was no need to hide, no need to pretend. His calloused hand holding my much smaller child one is a tangible thing that I can feel as soon as I close my eyes. 

If you went to the cottage you would find Grandpa in the garage, building something usually. I would follow him around and he would let me. No matter what he was building he made space for me beside him and hand me some wood, nails and a hammer and together we would work. The smell of sawdust still takes me back to that workbench; his body close to mine. When the work was finished he would announce that it was time to go to the beach and we would run down to the beach and there, for hours, he would row our boat filled with friends, we would jump off and he would haul us in, just for us to jump off again. He never seemed to run out of time for us. He didn't say it often... but in his actions we knew we were loved. 

As I got older and the visits became harder I would get random cards in the mail from him, reminders that he loved me. Once when I was living in my first apartment on my own I got a St. Patricks day card in the mail. Who gets a card for St. Patricks day? It's one of the few I put into a special place, to pick up on days like today when I am missing him... 

It saddens me to say that it wasn't until 15 years ago; that I got a real chance to know my Grandpa. He moved in with my parents and for the last 15 years he's been a welcome and fun part of our family. He made several trips to Europe to visit me while I lived there. We went to Wales, visited Venice and explored Austria together. There are so many things about him that make me smile, so many things that I miss... it's been almost a month since he passed away; I think I am still trying to come to grips with that. 

He was, is, part of me. I see him in myself, I see him in my boys. I thank God for the time we had with him, particularly the gift of the last 15 years. I thank God that he is at peace now, and that one day I will get to hold his hand again. Until then, I will miss everything about him, everything.

Goodbye Grandpa,  I love you.

L

celebrating life

This week we celebrated the life of my Grandpa who at 97 surprised us all by quietly and quickly passing away last week. This is not the day to post about how I feel about that, In many ways I am still processing how I feel; that post is to come. However, this week is also a week that we celebrate the life of our youngest who turns 6 today.

As Kaleb grows and I discover the many facets of his blooming personality I can't help but wonder at the boy he is and the man he is becoming. He is so fiercely protective, he's sweet, generous, kind, and he's got eyes and charm that manage to get him anything he wants... the two are a dangerous combo for the ladies in his future.

He can be a character and recently he's learned that humour cheers people up... when he's seen me with tears in my eyes he's there with a quick smile and some silly antic to make the smile return to my face. He has begun a fairly regular habit of waking me in the morning by crawling in beside me in bed and just snuggling for a while. This year when he started school he quickly decided that it wouldn't be cool to be seen kissing his mama goodbye; so we began the fist pump tradition. I won't lie, it was a wake up call, realizing that it meant the end of the baby years for me. The next day I dropped Kaleb off at the door of his class, we did the fist pump, said goodbye, and I walked away... I was half way down the hall when Kaleb came running out of class and yelled 'Mama! Wait!'.. I turned around and saw him running to me, his arms outstretched. I gave him a hug and then he gave me a kiss. A brief moment, but a reminder that he's still little, he still needs me, and as much I had missed the goodbye hug and kiss... he'd missed it too. 

He is growing up on me, there's no escaping that, but as I get to know all the wonders of his personality I can't help but enjoy discovering the man he's becoming. There are so many things to love about this little guy, and so many times he's made me proud; he's a remarkable little man.

Happy Birthday Kaper... all of my love, forever...

Mama, xoxox

Labels

I have always been wary of a label for Josh... once upon a time there was a doctor who insisted that Josh was autistic because he couldn't speak. I fought back and got him assessed by another set of doctors who quickly shut down the autism diagnosis and said that his language was a stroke issue and it's been that way for many things in his life. I hate labels! However, one label that I have not been able to argue and that has stuck with him through out all the assessments, through school (to date), and which has become an increasing problem at home is just three letters. ADD (the acquired variety and without the hyper active component). I have known that this is an issue for some time now and I have learned that it happens in many kids with CHD, but last year it became a growing and more pressing concern. I sought help from a few doctors and finally on Monday it was decided to put him on medication to help him; and to give him his best shot at his new school. Since we now know that he doesn't have an LD and he isn't language impaired and that he is in fact in 'catch up' mode we agreed that we want him to have the best possible chance at learning that we can give him. He started on the mediation yesterday morning...

Today I went for a walk with him... and for the first time in his life (NO KIDDING)... we had a back and forth fully understanding and understandable conversation. We covered two topics on the entire outing and we talked. He asked questions, he waited for my reply, he considered my answers and he responded in kind. I am so full of hope and so fully aware of the blessing that this is. Label's it seems can sometimes be good things.

There is a down side... and this is something that will require patience and prayer... and prayer for patience...

Last night... Josh was still wide awake at almost 12am! This is a kid who typically goes to bed at 7pm  and often asks to go to bed. In fact three times this week he has asked to go to bed BEFORE his brother! Josh didn't start sleeping through the night until last November... almost a full 7 years of sleep deprivation... I am afraid that this new medicine is taking us back a step, and yet already I can see how much he needed/needs it. There is hope of course, hope that he will grow accustomed to this new medication, or that last night was a one off... if it's not I have a lot of sleepless nights ahead I suppose.

The end result of course is only that today (though I am totally worn out after sleeping (sort of) beside him for most of the night, I am more hopeful than ever about this man who has taught me so much. I find myself excited to see the changes and growth! :)

L

P.S. Coffee intake will go up... is that possible?

The Haughton Escape

This past week Tim and I were able to take the boys on a much needed holiday together. We drove south east to the Adirondack mountains and stayed at a small out of the way cabin on Star Lake. It was so quiet, so peaceful and though the city girl in me got itchy towards the end, now that we are back I can say that it was so restful and nice to get away.

On the first day of our adventure we hiked into the Ausible Chasm and took a river raft ride, and then with less than stellar wisdom we chose to climb Mt. Joe. Tim and I hadn't been planning this trip for long, and the only thing we read up on the Mountain was that it had a family friendly trail... my idea of family friendly is different. It was a proper mountain, the path which started in a nature hike sort of way quickly transitioned into a rock climbing, dirty adventure. We saw the red spotted newt, lots of various mushrooms and Tim spotted a snake, which when he went off trail a little to see ended up with him having a broken shoe. You see, in our enthusiasm to hike this family friendly trail we didn't stop to change shoes, Tim and I climbed this thing in our croc flip flops! Tim climbed the rest of the way in bare feet. As the mountain got steeper and the path gave way to a creek bed (full with water running through it) I soon gave in and carried my flip flops too. It was simply far less dangerous to do it without the slippy shoes. Kaleb loved the climb, Josh struggled but with some rests we managed to get all the way to the top. Of course, we all know that climbing down and can be just as dangerous (if not, more so). Josh doesn't like to watch where he is going and gave me a number of near heart attacks that caused me to hold his hand 90 percent of the way down. I joked that if we all reached the bottom without a broken bone then it would be a success. It was Tim who was out down fall... half way down Tim's foot slipped in the UNENDING mud and he broke a toe! Thankfully, he managed okay and we all made it safely (unless you consider Tim's toe) to the bottom where a lake sits waiting for you to jump in.

As we drove back that night with an exhausted Josh, we had to think about the fact that just a few short months ago this little man had a valve replaced. This kid did it, and though there was some complaining done by him and I on the way down it was more to laugh instead of cry. He was quick to tell me (numerous times) on the way down that he 'will not climb mountains when he's big' or 'he's not a mountain climber' and after each time we shared a giggle. The not so family friendly hike was while not 'fun' with all the anxious moments of waiting for one of them to fall off a cliff, was a moment to witness Josh accomplish something that I didn't think he would ever be able to do. I don't know if he understands how big a deal it is... and that just makes it that much better.

Kaleb discovered a love for fishing and spent time learning all about various animals... his big highlight came at the end of the trip, our last night to be exact when he was able to bring me home a huge 15 inch bass!

All in all, it was a really wonderful time away with my three favourite men... though I am glad to back in the land of bathtubs and laundry machines :D

Courage

Today I had the amazing opportunity to sit front row and watch Josh receive an award for courage at his school. I must admit I bawled... and so did a number of other parents. Josh jumped up when his name was called and ran to the front and stood proudly while the teacher talked about his courage in the face of adversity and how quickly he rebounds and gets back to school and back to getting his work done. What a beautiful moment! After receiving his award he scanned the crowd, found me and threw me a big thumbs up; which prompted many more tears! :) So proud of my guy today!

"It is my pleasure to give Joshua the courage award. Joshua is receiving this award because of all the perseverance he has shown us in completing his school work despite multiple surgeries he's undergone recently. Joshua has always been happy to return to school after each surgery and eager to learn and participate. He has always been willing to catch up on missed work and recently impressed us when he chose to spend recess time in the library to start and finish a project he'd missed because of the surgeries. He drew a beautiful map of his neighbourhood and without any help he made sure his map had a legend, colours, symbols and a compass rose! Good job Josh!"  His teacher.

Insanity is coming to an end...

It's been a long two weeks... I wrote last about Josh's amazing assessment and hours after that post we had a call saying that his eye surgery would be that week. On May 28th, just one month post op for his heart Josh went again into the OR to have his eyes corrected. Every time you send your child into the OR, be it for something serious like heart surgery or mundane like eye surgery, there is an anxiety that can't really be described. We have done this too many times, he has suffered too much. The amazing thing though, is how he copes, how he braves the challenges that are set before him. I have seen him literally laugh in the face of these challenges and I have seen him rise above. May 28th was also the day of his big school transition meeting, and a large BBQ for Tim's work. It was a nutter day... a fully insane day. Yet, as I lay down in bed that night I realized two things.

1) He now has the entire summer to not worry about surgeries or appointments (once we get through his last one tomorrow) For this summer... he can be a kid. That is a really really great thing! He so deserves that after this year!

2) While it was a lot in one day... we managed it. We had help (we couldn't have done it all without a lot of help) Tim made the school meeting and advocated for Josh, getting him placed in the exact program I had been hoping for in Kaleb's school! (Both boys in the same school FINALLY will take a large burden off me next year). The BBQ was a success and Josh... well, he was home and his own bed so I have nothing to complain about there either.

The first few days post-op were (in a word) brutal. The first hours of recovery they wouldn't let me in the room because he was 'having complications' ... as it turns out they are a day surgery post-op recovery so they don't often have heart kids in there. They were freaking out about his SAT levels and heart rate and blood pressure; and thought that he was having trouble. Finally I begged to be allowed in and once there, I saw that while he was not doing great, it was all down to the fact that he was anxious and in pain and scared because he couldn't see. (Who wouldn't have high BP or a fast heart rate in that situation?). I sat beside him and explained that he had a patch in his eyes and that he was in the recovery room. We talked about the patients in the beds beside him, the nurses and what they each looked like, and as we talked he settled. We gave him some powerful pain killers and he slept, deeply, his SAT levels dropped and alarms started going off, sending our nurse into a panic. (It was actually a little funny). I reached over and silenced the alarm, moved the O2 mask to his face and his levels normalized... at that point she bowed to my wisdom and calmed right now. Within 45 minutes of being allowed to see him he'd had 3 freezies and was in a wheel chair headed down for a blueberry muffin at Tim Hortons' (his new favourite treat). The wisdom here is the power of healing that can be found in a mothers love. (not trying to bolster myself here either, it's a statement of fact. Kids need their Moms).

The surgeon had warned me that 'recovery would be hell' and she was right. He was in so much pain, and Josh's eyes are his weak spot. When he's anxious, scared, tired, worried, sad... he rubs his eyes. It's always been that way and here, in the midst of great pain and anxiety and he couldn't rub. For two days he couldn't open his eyes they were so swollen and painful. However, on day three he woke up feeling so much better, by the fourth day he was back at school and came home almost euphoric. He is a different child these days. He's so much happier, and though he can't explain why, he says he can see better, and given the happy child running around our house these days I would say it was worth the pain of those few days.

I also had the chance to see what a beautiful man our Kaleb is turning out to be; he care and compassion for his brother through this process has been an honour to see. He guided him, fed him, retrieved things for him, described things to him when he couldn't see and one morning, when he could see that Josh was needing to hold the cloth over his eyes (the only thing that brought him comfort) and try to eat, he jumped up, grabbed the cloth and said 'Ill hold this for you Josh, that way you can eat and mama can drink her coffee'. He is a beautiful child, who is being shaped by this journey just as we all are. It's humbling and awesome to see.

It's been a long few weeks, sleep in this house is a luxury, Kaleb's asthma is bad again and both boys are alternating nights of nightmares that keep us up. BUT... and this is important... Summer is coming quickly. Just a few weeks left of school, a few last appointments for the boys (Kaleb for asthma related stuff and Josh for his ECHO and post-op). We have two graduations, Kaleb is graduating kindergarten and Josh is graduating out of Bloorview. Then... then it's all just fun and summer rest! I am counting the hours!!

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