What he teaches mee

I remember being pregnant with Kaleb, the feeling of him growing inside me and the immediate love that happened when I met him for the first time in the OR, when they held him close to me for the first time so that I could see him; so unlike Joshua's delivery and so beautifully normal. The very first thing he did was suck my nose and indicate that he was hungry. He was/is so beautiful; and though the drugs have made many of the memories blurry and vague that particular one stands out to me as clearly as if it happened yesterday. I had pre-eclampsia with Kaleb, and I was horribly sick in the hours post-op, I was also shaking uncontrollably, my blood pressure was crazy and I was itchy from the meds. Then they would hand Kaleb to me and I remember feeling peace, no more shaking, no more itchy, just a sweet balm of soothing calm that settled in like a fog. As soon as someone else wanted to hold him the shaking would start again, the vomiting would continue and the agonizing itching would start all over again. In the days and weeks that followed his birth his eyes would seek me out where ever I was, sometimes he would lie in the stroller as I walked down the street and he would just stare at me, for hours at a time he eyes would be on me. There was nothing more pure to me than the love we shared, we had bonded instantly, where with Josh we had had to work at it because I hadn't had the opportunity to hold him for weeks post birth. As he grew the bond only deepened and now at three it's been solidified and there is nowhere he would rather be than in my arms for a snuggle. If I have been out and I return I get a huge, long hug and kisses... always kisses. Hearing his little spontaneous 'I love you's' warm my heart and fill me with more joy than I can imagine.

He causes trouble, he has his moments where all I can think about is... is this how he's going to turn out? Will he always be like this? Then, in a flash he can be back to the sweet little boy who has learned that they way to his Mummy's heart is with a cheeky smile or cute little 'Mummy, I need a snuggle' and the world tilts back onto it's axis and all is well. He claimed my heart by sucking my nose, and it's his forever.

Kaleb is not often a focus in this blog, not because I don't love him, not because he's not one of the best little people I know, not because he isn't one of the many miracles in my life, it's simply because Joshua's health problems lead me to write more about Josh and all my doubts, fears and worries about him. When I see the two boys I see all our faults as parents but I also see all of our qualities, all the things that make us unique. Kaleb, he's more like me and that to me is both terrifying (for any readers who actually know me, or knew me 'when' then you know what I am talking about) and thrilling. I am often amazed by the reality that through love Tim and I created two such amazing little people who take so much after us. Josh, who is a little mini Tim is a delight to watch and learn from. I can almost visualize Tim as a little boy when I watch him and it only makes me love Tim more than I already do.

My boys aren't perfect, they have faults (most of them coming from my gene pool I'm afraid) but they are beautiful all the same.

I learn from Kaleb daily, I see him do something naughty or mean and I still love him and it reminds me how God sees me. How much more does he love me despite my naughtiness or meanness? I see Kaleb needing comfort and my greatest joy is to wrap him in my arms and comfort him and I see that God loves me the same way, when I need comfort I know through being a mother that God longs to wrap me in his strong arms just as I do for my boys. Last night, Kaleb had a nightmare, he was so scared he was shaking and it sparked an asthma attack, easing his fears came so naturally that I didn't even think about it. How much more does God yearn to ease my fears. This blog, entitled Through the Lens of Motherhood, is me learning through my boys what love looks like through the lens of parenthood, and how God views me through a lens much clearer, much more high def. I can't imagine loving anyone more than I love my kids and Tim and yet I know that God loves me and them even more. It's indescribable to me, unimaginable and yet somehow it's not only possible but it's done. I don't have to earn it, I just have to look up into his eyes to see it. Just as Kaleb used to stare at me for hours on end, or seek me out where ever he was, the bond was there from the beginning and will remain.

no questions are invalid

Someone asked me today 'do you have regrets?' this came from an email conversation with a woman I met online through the blog. Her question was asked in innocence and a genuine desire to seek knowledge from me about our choices as parents, or more specifically about Josh. It strikes me that I should have been annoyed by the question, and just a few short years ago I would have been. Instead I sat down and looked at our lives together as a family.

I see Josh, all smiles and love, hopeful eyes, and dreams of playing soccer (and though I was banking on hockey; I did once promise myself I wouldn't try to force my dreams of him playing for the Leafs )one day -when he isn't tired from running. He is laughter, pure joy, and he's warmth. Hearing I love you from him is a special gift, not because he doesn't love us, but because it's taken him so long to learn and understand language enough to say it with meaning. Do I have regrets? Not once.

Before Tim and I were married the plan was to wait a year before trying to have kids, but shortly after deciding on that we both felt God was very clearly changing our minds. We decided that we wouldn't try but that we wouldn't do anything to stop it from happening, and if God wanted us to have a child then we would count ourselves blessed. Time after time we were told to abort Joshua, and time and time again the verses in Joshua chapter one came to my mind, be strong and courageous and I will go with you wherever you go and then another from Mathew that read, with man this is impossible but with God all things are possible. Always I was reminded that a mustard seed could move a mountain with enough faith... so we believed. I built the nursery that people feared would be my undoing when we had to pack it up with no child to sleep in the crib. Instead, God brought Joshua into our lives and through his life I have been given a greater understanding of God, of suffering, of life, of love and joy and laughter.

Do I sometimes wish that this wasn't happening to us, that Josh was healthy, that he would talk with me like other kids talk with their parents? I would be lying if I said no, but deep in my heart I believe that all of this, all the pain, all the suffering, all the fear and worry are growing us stronger as a family. I have seen it healing us, yes, healing us. I have seen my prayers grow more mature, my faith becoming unshakable, my hope more secure in the cross and the victory he provided for us there. I regret some things, in my earlier life choices, in how I handled some situations when I couldn't get a handle on my emotions, but most things, the things that matter, I can say that even if I didn't think it was the right decision, it was a decision that has made me who I am today, stronger, more hopeful, wiser. How can I regret that?

Joshua's life itself, though only five years to date, has been a blessing to many. His struggles have brought communities together, made believers out of non believers and encouraged so many who were dealing with suffering. He clearly has a purpose, one predestined by God, and God is keeping watch over him, delivering him, holding him, shaping him and all that that does for me is convince me that we did the only thing we could do. Give him as good a life as we can for as long we can.

I understand the question, I am not annoyed by it now as I would have been then. Though I never entertained the thought of abortion for either child (we were advised to abort Kaleb too). My whole family is a gift, but when you first hear a doctor announce that the child in your womb is not 'whole' or 'broken' or 'very sick' and then a long list of dire circumstances are given on his/her outcome, I think it normal to seek answers to these questions. Until you have a child of your own you can't fully comprehend what life was like without them and you certainly have no idea how much you will love them, it's not something you can ever understand until it happens to you. Creating a child, sick or health, is a miracle, many are not able to have children and knowing this just ads to our knowledge that these children truly are miracles; our job is to love them and do what we can to help them, to raise them and hold their hands through all the scary things they will face as they grow up. It doesn't end at 18 or 21 or even 50. My own parents have been rocks through the many surgeries that Josh has undergone, they stood beside us, prayed with us, held our hands and came racing through winter blizzards to get to us when we needed them.

No one can guess what life has around the corner for us, we could be eating lunch in a mall and get shot, we could be running in a marathon and be blown up, we could be sitting in a classroom when a kid walks in and starts shooting randomly. Joshua's heart problems are no bigger, and no less than any of those things, they have just come to him at a very young age. I would willingly put my heart on that table if it would help. I would offer him my own heart if I could but sadly this is a journey he has to face, and all we can do is love him through out. We have to give him a life of fun and laughter that he can remember when the pain is too much.

I know that suffering is a huge topic, so many people are suffering in the world and by comparison to many my life is nothing to complain about. There are no answers, not even easy ones, on how best to cope with suffering and I don't seek to answer any here. Here you can only find compassion, hope, and hopefully you will travel this blog and see God's face, that you will see how he moves and breathes in our lives, in our joy and in our pain. Don't ever hesitate to ask questions... all are valid, all are welcome here. We travel this life together, and without community we are alone, and no man or woman should be alone (God said that, not me but I live by it).

6 years ago

6 years ago tonight I was preparing to marry the love of my life, my best friend and greatest blessing. There were no nerves, just a pure and boundless joy that can't be described. When I think back it seems like we have always been together, I can't fathom a life without him in it. He has made me smile, stretch as a person and grow into the woman I am today.

We have travelled a long and rock filled path together and yet instead of creating a chasm between us it has only brought us closer together. He held my hand 6 years ago and promised to love me, to cherish me and stand beside me until death do us part. It hasn't been easy, there have been some tough times but he's never wavered, he's been a rock when I was on shifting ground and he's done his best to shelter me from the winds that rock our world. If you read back to my new years posts over the years you will quickly see how his life has blessed mine, how his strength and wisdom has enabled me to be a better person. His integrity and loyalty have brought out the best in me as a wife, mother and woman. There has never been a single moment, not before our wedding or after that I didn't know that God has brought this amazing man into my life as a gift I should cherish, respect and love for the rest of my days.

6 years ago, not very long in the grand scheme of things, but full of a lifetime of love, laughter and even tears. As I think back to that day I am fully aware of how blessed we are to have each other, to love each other. As we stand and face the uncertainty of our futures, of the future of our children I know that we will have more tears, we will hurt, and we will fear, but I also have no doubts that there will be more laughter, more joy and more blessings.

I watch him father our children, guiding them, playing with them and enjoying the quiet moments of being in their company I know that there is no man who could better father these children, who can raise them the way that I would want them raised, no man who could fill our lives with the quality of love that he does.

Our lives, one life, joined together is the first miracle of our family. As the years unfold before us it gives me great hope that we have many more miracles to come.

Happy Anniversary Tim. You are my best friend, the love of my life and one of the best men I know. You are an incredible Dad, a gifted and devoted Pastor but more than any of that you are an awesome husband. My love for you has grown so much in the last 6 years, you have made me believe that God hears my prayers more fully than I ever dreamed, and through you I have learned of his great love for me. Thank you for loving me the way that you do, for dealing with all my faults and for your bounty of patience for me.

All my love, forever.
L

what a week...

In an attempt to escape and have a break from the waiting and stress that comes with waiting I pulled Joshua out of school on wednesday and Kaleb, Josh and I made the trek to the cottage for a couple of days off. The trip was rough, just as we were passing the Tim Hortons just off the 400 past Vaughn Kaleb started to have asthma trouble, and as I was pulling off the highway Josh started to vomit. I pulled over in what I thought was a clear area but it turns out that it was a truck pass through... needless to say I was standing in the rain with one kid covered in vomit, one kid struggling to breathe and trucks honking at me. My first thought was to turn around and go home but first I had to move the car, strip Josh and get Kaleb his meds. Once all that was complete I got Josh a bagel at Tim Hortons (hoping some food would settle the tummy). Once back in the car I decided that since I was almost half way there already I would continue the trip as planned. Before long both boys were asleep and the rest of the trip was fairly easy. More trouble began when Kaleb woke up once we got the cottage, his asthma was getting bad and no matter how many times I gave him the rescue meds he didn't seem to perk up at all. I finally popped him in the bath and he was so lethargic that after a few minutes he wanted to lie down (not helpful in a tub full of water). I got him out of the tub and he lay in my lap wrapped in a towel while my Mom and Dad got Josh sorted out. I finally figured out (yes it took me this long) that the rescue meds I brought for Kaleb were actually expired and not working. I called the pharmacy and got a prescription transferred to the local Shoppers. Once he started to get his meds (working ones) he began slowly to perk up again. It was a long night, and though not fully better yet he's doing much better.

Thursday brought with it the news that Joshua's next round of tests (a catheterization and cardiac MRI) will take place on the 22nd of May with his pre-op on the 21st.  So, three more weeks of waiting and then we should have enough information to decide how best to proceed.

As always I will keep you all posted as we learn more.

We are home now and Kaleb is recovering, though grumpy.

What a week!

Not about me

On Friday Josh had an OT (Occupational Therapy) appointment. While I was there I ran into our Physio therapist and chatted with him briefly to let him know that Josh's surgery was going to happen this summer and if he wanted us to do the casting it would have to be right away. Today he phoned me, it turns out he's been thinking about Josh all weekend and wanted to talk a little more about it. In order for the casting to work properly (training his muscles and hopefully helping him to walk on his flat feet rather than his tip toes, Josh will need to be active and have extensive therapy post casting which he won't be able to do if he's laid up in the hospital recovering from heart bypass. He feels that if we do the casting now, in light of what may come this summer, that there is a chance it won't work the way we are hoping. So, he's allowing us to wait until September, at which point he will be in Bloorview school and be able to get started immediately with the intensive therapy through the school. He said 'It actually works out much better' and I smiled. Of course it does...

So, the good news for this week is that casting Joshua's two legs this month is now off the table and spring is not going to be ruined for him! I have to admit that I find relief in that, it's not that the casting will be painful but it's certainly not going to be 'comfortable' for him nor will it be easy for us. To have that pushed back gives the procrastinator in me a sigh of relief.

The Bible tells me that God works all things together for good, for those who love him. I see that daily these days. When we first heard about the surgery we were coming off the back of hearing about this development with his legs and I couldn't help but worry about the timing, I pictured Josh in casts and having to go through all that he's about to face and I started to wonder if maybe we should put off the casting until September. I thought out all the pros and cons, do we let him them put him in casts before surgery or do we put him through even more post surgery? How do you know what is best? I have to be honest and say that I didn't pray about it, I just wondered it and discussed it with Tim. Somehow I find it pretty awesome that even through I didn't specifically pray about it, God still knew it was a concern and answered my question for me. It made me think back to all the times I have worried about something or thought out something but not prayed and yet still got an answer, and that led me to thinking about prayer, what is it? What does it look like? It would seem I am always coming back to that question in this blog... The reality that I am starting to see is that when in relationship with an omnipotent God, he knows what is on my heart even without me saying it out loud to him in formal prayer. Not that praying isn't important, I am not suggesting that. I am however saying that Prayer, relationship, is a knowing. God knows me, he knows my heart, he knows Josh and he knows Joshua's heart, and in that knowing, he seeks to ease our fears and help us answer the tougher questions that we don't have the words or forethought to pray.

Then I started thinking about all the times I haven't known what to pray for, all the times I have sat staring at Josh or Kaleb and wanting to pray for them (not just their health issues but just for them, as they grow and learn, who they will become, who they will meet and develop relationships with... all the little things that as parents we want to pray for them) I often want to pray but feel overwhelmed with the amount of things there are to pray about and I find that I have no words at all. What do you say, how do you say it? What if I ask the wrong thing?

Today it dawned on me... it's not the words that matter. I can say nothing to God and he will still do what is best for my boys and Tim, it's more about the actual act of taking time to talk with him. To build relationship with him. What kind of marriage would we have if Tim and I never spoke to each other? I don't need to tell Tim when I am worried, he often knows before I say a word, but I still tell him and in the telling I find that I have someone to share the burden with. I can sit in silence with God, not knowing what to say to him, not knowing how to share my deepest fears with him but he already knows, and when I do find the words I find that I am not alone, He's right there with me and listening.

Whatever happens, prayer or no prayer, it isn't going to change how God answers, how he provides, how he moves and works. My prayers don't change Gods mind, they simply open the lines of communication and build a relationship with Him. This has been such a relief to me and I can't believe I didn't learn this before. All this time I have been thinking I have to pray harder, I have to be more faithful, I have to do more... or worse, I am praying wrong, I am not saying the right words, I don't have enough faith... crazy isn't... it's not about me?! :)

Induction day

Yesterday was a big day for my husband Tim. He was inducted as the Rector of Little Trinity (Trinity East). I have to admit, I am not an Anglican by birth so I had no idea of the importance of such an event. I got a dress on and attempted to get the boys as clean as possible (promptly ruined when I allowed them to play at the park before the service), I packed snacks for them and both had 'entertainment bags' to keep them occupied through the service. I dosed up on caffeine before hand and was 'ready' and at the church early. What greeted me was a surprise and an overwhelming appreciation of the wider church community. As I sat outside the church letting the boys play at the park and blow off steam before asking them to sit for a couple of hours of church I watched as face after face of old and new friends came pouring our of their cars and walked into Little T. I was so surprised by the amount of people who came. I had figured on a few friends, family and of course the clergy that were supposed to come but I wasn't expecting a full house. The service started with some of the most amazing worship I have had the pleasure of being involved in. There was the formal stuff (handing over of keys and such) prayers and then Tim was introduced as the new Rector. As Tims wife I was asked by the Bishop to join Tim at the front for this introduction and I am so glad I didn't balk at the opportunity. I have never been so proud of Tim as I was in that moment, when a standing room only Little T all started with first applause and then quickly replaced by a standing ovation. I struggled not to get weepy as all these people stood and filled the room with their applause and appreciation of Tim as their new Rector. What an honour for Tim!

Changing churches in the face of this new development in our family has been hard, knowing that he faces challenges at work and now at home I have struggled to support him and I have to be honest, I have missed the people who have walked us through these types of hard times before. The people who were there with us when Joshua was born, who prayed us through every single obstacle that we have faced with Josh from diagnosis to subsequent surgeries. Yesterday, as we stood at the front of that church I looked out and I saw all those faces, and the faces of all the new family that will uphold us as we face the future together. It's a busy time for us, not only as a family but also as a church under new leadership but yesterday there was no doubt that we are exactly where God wants us, and that God was there celebrating with us as a larger church family. To say it was awesome is an understatement!

Thank you to all who attended and made the day so special for Tim, and by association me. We are again reminded of the tremendous blessings that fill our lives on a daily basis. It's a new day at Little T and I am so excited to see the plans that God has in store for this amazing church!

beautiful lessons

I have spent a lot of time thinking about the social issues that Josh will face as he gets older, sending him to school was huge for me because I always worried that his language impairment would cause him to have problems making friends. When he first started school it took him a while to make friends, and every day he would cry and ask me not to send him back. That was September and October of this past year. I remember one night in particular when he was saying his bedtime prayers he expressed to God that he didn't like school because 'I can't talk'. It made me cry, agonize and worry about him. As someone who never had a problem making friends, and after watching Kaleb take after me in the area it was something new for me to worry about with Josh. What happened if kids made fun of him? What would his self image be like if this problem wasn't fixed in MY timeline? I can't tell you the nights I spent lying in bed hoping and praying that Josh would make a friend at school... and I can't tell you how many play dates I arranged to make it happen.

It's April now, and Josh has been happily attending school for most of the year now, he loves it, he's learning and growing in leaps and bounds. He has friends and is much better at telling me about his day.

The teacher told me that recently a boy moved here from Bulgaria, he speaks no english and he has joined Joshua's class. Then she said, that she noticed Joshua playing with him and went over to listen to what was being said... as it turns out Joshua has been playing with him and helping him learn simple phrases, things like 'Hi, my name is... ". 

Here I was so worried about only Josh that I didn't stop to think about what a blessing he might turn out to be with all this empathy and compassion. Seeing a little boy who knows less English that he does must have been such a wonderful chance for him to show kindness, and to gain confidence and to understand that he's not alone. I don't know that I have ever been prouder of my little boy before. I want my kids to be the kind of people who meet troubles and face tough circumstances with a brave face and a fighting spirit, I want them to be the kind of people who look up at the stars rather than the mud they may be stuck in. I have always wanted that, and yet I realized today that I haven't been giving either of them enough credit. They already are those kids. Josh could stare in the face of his impairment and allow it to define him, or he can use it to show empathy and compassion to other kids like him or worse off. To know that he chose the latter fills my heart with so much love and pride.

Kaleb who is always bugging his brother, throwing things, punching, wrestling him to the ground... just yesterday told a boy off who happened to bump into Josh on the slide... he said 'Hey! (VERY LOUDLY) Don't hurt my brother!'!

I think... sometimes... that I am the sole person who is going to teach my kids about becoming men... I think sometimes that I am solely responsible for who they are going to become. The last few days I am being taught that I am merely here to guide, and that to believe otherwise is putting me at risk of creating idols out them.

Beautiful lessons that I am happy to learn.

Next step

There is so much to say, so much to worry about and yet also so much to be thankful for in the next post.

Let's start with the phone call I finally recieved last night during dinner... Our Cardiologist called after the meeting with Surgeons and explained a LOT... so bear with me.

The doctors feel that something is needed, we have a few options as I mentioned last week. The first option is a Tricuspid replacement (a valve they have tried twice now to fix without success). The second option is called a shunt (half of a fontan procedure) where they take the vein supplying de-oxygenated blood straight from the neck, bypassing the right side of the heart and dropping it right to his lungs using gravity. The third option is to do both while they have his chest open and heart already on bypass.

The shunt procedure is something that can not be undone, it irrevocably changes the make up of his heart and should it not work we are looking at heart transplant. Our Cardiologist said 'given Josh's history of being on the side of rare this is something we need to think about before doing'. I have to admit that it gives me much pause as well. Always before his surgeries have moved to place of 'fixing' his heart, and being 'fixable' should something go wrong (case in point was the pulmonary valve that Josh rejected the first time around). The thought of coming to place of needing to be put on a transplant list makes me feel ill on many levels.

So, the doctors (one of whom was his last - and best) surgeon have decided that they want a more comprehensive look at this heart. He will be sedated and they will send a catheter through the groin and into his heart to run some tests to get the exact measurements and pressures of his heart, then they will get an image using the Cardiac MRI. This should all take place within a month. Once they have the images they will meet again to finalize a plan for going forward.

On Thursday morning when I woke up I had such a feeling of despair, I was terrified and sick and worried and every other possibly emotion that one feels in a situation like this. Before I left to pick Josh up from school I prayed that God would somehow let me know what the right choice is, and that he would confirm for us that this is absolutely necessary before we again place him on a table. When I got home there was a letter offering us the placement at Bloorview, this sounds morbid... but it gave me a hope for the future. My deepest fear is that we will lose him, knowing that God has a plan for Josh that goes beyond this next surgery gives me infinite hope for Joshua's immediate future. Then yesterday on the way home from school a boy ran past Josh and I, and Josh stopped to watch. Pointing at the boy Josh said 'Mummy, that boys is so fast' to which I agreed and started to move again but I looked at Josh's face and he looked up me with the saddest look on his face. He said 'I can't run fast' to which I asked him why, again, his face filled with sadness he looked at the boy running away in the distance and said 'Im too tired'. My heart ached but there was a part of me that heard this and knew that it was again God saying 'this is not in vein, he needs this, and that is something I really needed to hear going into these decisions.

Last night Cardiac Kids gave us tickets to see the Leafs play the Devils. As it turns out we were in the players box and our host was David Clarkson of the NJ Devils. His mother sat talking with us for a large part of the second period and after the game she invited us to come down to the ice to meet her son. While we waited a man who works at the ACC came over with one of the sticks from the game and gave it to Josh, then we got to meet David who signed Josh's stick and chatted with him for a bit.

This past week has literally been a roller coaster of high highs (Bloorview) and low lows. Last night as I lay in bed I was thinking over all that has happened in less than one week and I have to say, I am so in awe of God's incredible timing, his healing peace and his ever comforting arms.

I think, since most of you who read this have also promised to pray for Josh, that this would be a good time to let you know exactly what we are praying for.

1) I really DIS LIKE the idea of a shunt... I am personally praying that it isn't needed
2) Peace, for all of us as we face this next round of tests and meetings
3) Wisdom for the doctors who are making these crutial decisions regarding Josh's heart
4) the catheter procedure is what caused Joshua's first stroke... please, pray against this during his next one.
5) We will need help with the emotional aspects of this for Josh, please pray that we find the right words to explain it and that God gives him the peace he's given us.
6) while I am going for broke in my requests... maybe we could also ask God to heal him... just generally heal this little man and allow him a full, long and very happy life?

My inbox has been full all week and for that I am so thankful, I feel so blessed by the amounts of people who love our family and who are praying so faithfully for us. Please know, even if I can respond to all of you right away, I have been blessed by you and feel your prayers daily as we move forward. Thank you for your support!

Blessed

I have been attending church since I was born, yet it hasn't been until I have been older that I have really understood and benefitted from the joys of a Christian community. I have found that no matter where you go, you never leave behind your community. This past weekend has been a wonderful reminder of how incredible a gift it is to be in relationship with other Christians, old and new friends alike have been contacting us and praying for us and I stand in awe because I have felt those prayers; like a warm blanket on a cold rainy day they have wrapped me up and buffered out the cold.

God has blessed us with a weekend full of many distractions to keep our minds busy and away from the nagging gut wrenching decisions that tomorrow brings. Peace has enveloped us as a family and as we walk through the next few hours into tomorrow I find that I am stronger than I thought I was and that to me is a precious relief.

I don't know what the surgeons will decide tomorrow, they have a few options and obviously my prayer is that they decide to hold off, that they choose to not go with any surgery... at the beginning of this latest episode I allowed myself to believe that it was in the surgeons hands but I was wrong. It's in God's hands and I have been reminded this past week that God's timing is the best timing and maybe, just maybe, it's time I just stop worrying and put aside the fear and allow God's perfect timing, His perfect will to be enough. He knows my deepest desires and he's heard my heart felt prayers and if this is how he is going to choose to answer then I have to trust Him. Hard as that may be... how can I go into his room each night and pray for Josh's healing, and then be frustrated when he gives us an answer just because I don't like the way he chooses to answer?

As I read through the responses to the Blog this week I am amazed and wonderfully filled with peace and hope because I know that there are thousands of people in the world praying for my son. He is one blessed little boy, and I am one blessed Mum!

L

Heaven Hugs

I love God's timing on things. As you can imagine it's been a hard week for us and it's not promising to get any easier any time soon. This morning was rough, fears and doubts are plaguing me and I have been at a loss for words. However, today after picking Josh up from school I came home to find that the mail had come. I opened the mailbox and found a large envelope from Bloorview school. Now, for those who are new to this blog I will quickly update...

Due to Joshua's stroke Joshua has many therapy needs but his biggest deficit is his language. He suffers from both receptive and expressive language impairment. Finding therapy for Joshua has been a long and very stressful road. We have tried everything we can think of to get him the help he needs. It wasn't until earlier this year that we finally found a therapist who was able to help him and I promise you she isn't coming cheap. Thanks to the Bishop's company we have been able to access her services but we won't be able to keep it up for very long. During the struggle to find help we were told about Bloorview school, (a school based at the Holland Bloorview rehab hospital). Getting in was a very long shot... so long that I didn't really expect anything. I almost didn't even bother with the interview process because it just seemed like one more fruitless appointment. However, I went to the interview, fell in love with the program that they offer and left feeling even worse because I had no real hope for Josh getting accepted but in my heart I knew that if ever there was a school that would help Joshua this was it.

Today, when I opened the mail I read that Joshua has been ACCEPTED to their program! A two year program (to be reviewed after a year) focused on mainly his language but also offering him his physio therapy as well as his Occupational therapy. All of this at the same time being a Senior Kindergarten and possibly grade one school program.

I have been waiting months for this... to find out the day after hearing he needs more surgery feels like a little hug from God. A little way for him to remind me once again that Josh is in his hands and to cheer me up.

I know that so many of you (hundreds of readers now) are praying for Joshua and will continue to pray him through this next surgery and time of suffering. I wanted to share the good news with you so that you too can rejoice in this with me.

This is yet another reminder that we can only hang onto today... because we just don't know what tomorrow holds.

Quick Update

I have had a lot of emails today asking how things went... I want to say thank you to everyone who prayed. When I got home I went through past blog posts for days like today trying to find words... but there aren't any really.

I won't go into too much detail until I know more on Monday or Tuesday but I can say this...

Joshua is more than likely looking at another surgery in the next month or two. We have a few options... none of them are good ones.

On Monday our Dr will take Joshua's case to her team and they will finalize decisions, at which point Tim and I know more and I can better update you. As you can imagine this is terrifying and sickening. I am sorry to those of you who wrote and got no response. I will do my best to answer questions on Monday or Tuesday.

Thank you for your prayers.

Please pray

As you have heard the last few days Josh has been struggling, the main issue of course is that he's tired but there are symptoms that are worrying us. The last month has been particularly difficult for him and though I have tried to put the worry aside it finally came to a head on the weekend and I contacted our Cardiologist. She booked us in as soon as possible for an ECHO and a ECG and a clinic visit. So. Tomorrow for good or for ill we head back to Sick Kids for more tests. I write this to you because I am asking for prayer. I don't know what they will do or say tomorrow that will help but I do know that Josh is having a really hard time lately and watching him struggle has been tough. Please, pray for Josh if you think of him tomorrow... and pray for the doctor for wisdom... and then pray for Mum... I don't know what I need but God does.

ECHO - 10am
Clinic - 1PM

Thank you!
L

in the silence

Time and time again I find myself in a place of questioning the wisdom of God, like I have some sort of knowledge that tops his or something!? I can't tell you why I do it, or if it's just that I am suffering from the human condition. What I can tell you is that God quickly turns me about face and reminds me that I am actually fallible, that while I may 'think' I know what I see, I can't see beyond the limits of my humanness.

Beyond me there is a world full of suffering, a world full of despair, a world full of pain and beyond me, God is working to heal those wounds, to bring some good out of the suffering, to pour out his love, like a balm to soothe the hurts. While I can't see what he is doing, I am once again reminded that he is in fact 'doing' something. Wasn't it Socrates that spoke about us being but a grain of sand? (I could be wrong... I have Bill and Ted's Excellent adventure running through my head right now). It doesn't matter if I am right about Socrates or not, the reality is that today while sitting in a pew at church, letting the music wash over me I was reminded that I am a grain of sand on a beach that stretches the imagination. I can't ask the why, without first understanding this simple truth. God has a plan. That is all the trust I need to have right now, there is no such thing as 'too little faith'. Believing just a little is believing enough for the moment. Lynn, (our associate Pastor) spoke about God being someone that we see the back of, (she quoted a Jesuit priest that I don't know so I can't pass along the actual quote, but it doesn't matter... it's the point that matters). We may not encounter God in the moments, but if we look back in our lives we can see him walking in our lives, working, healing, moving... that is what I need to cling to this week because if ever there is a lesson that Joshua has taught me through out his life it's that if I look back I can see God as surly as he if he was standing before me. Every little thing that has happened along the road has been touched by the hand of God. I can see it clearly when looking back so I need to trust it as I move forward. I don't have the answer to why we suffer, I can't tell you why God allows suffering except to say that in the garden, humans made a choice of death over life, and with death comes pain and suffering. With Easter came the reminder that God is victorious over death, and from that I choose to believe that God is using our suffering to bring victory to us, and to those who are close to us. His work isn't about me, Joshua's Mum... it's about His Kingdom. Learning this is not fun, it's not even an answer that satisfies me on many levels. It comforts me to a degree yes; but I would be lying if I said it was enough. What I really want is for God to come over for a cup of coffee and tell me that Josh will be fine, that he will achieve all his therapy goals, that he will one day speak to me clearly, that he will run without falling, that he will love with a full and unbroken heart. That's what I really want and to say otherwise is lying to myself and you.(something I have tried hard not to do in this blog).

The point of the post? I haven't got a clue. :) I guess I am learning again that each day can either be a step forward or a step back but no matter what direction we are going God is making those steps with us. He isn't a goal to be reached but rather he's a friend to cling to. What I don't know; he does. What answers I don't have; he has. That for the moment just has to be enough.

So at night, when I go in and place my hand on Joshua's head and beg for his healing... God is standing on the other side of Joshua's bed with his hand over mine. Even if the answer is wait. Even if the answer is no. Yesterday in my post I said I was being met by silence and today I was reminded that silences are needed when someone is listening. 

How long?

The latest news in the never ending saga of Joshua's therapies is that Josh, who walks on his tip toes and has a lot of balance issues is having trouble with his legs. They are too tight in the ankles and because he's always on his toes it's causing a lot of trouble for him with his walking and running. The combination of toe walking and balance problems cause him to trip a lot, and if the ankle muscles don't become more flexible we are looking at a painful surgery that results in a long recovery. Yesterday we met again with our Physio therapist who is going to put him in casts for three weeks (he wants to do it before the end of the month). Two casts, for up to three weeks. It's more of an annoyance than anything painful for him but he's struggling this week. He's angry, sad, fed up and ready to call it quits on all therapy. To be honest... I don't blame the kid. I feel the same way after his appointments. I thank God I didn't know all the endless problems that result from a stroke back when he first had it. This week has been difficult, he cried all the way to his language therapy and no matter what I said, it didn't help. He wanted to go home. He was tired. I finally got into the back seat and sat beside him and told him about his stroke. I am not sure I have ever really explained that to him. I told him about what happened, and I told him what it means for him as he grows and develops. I explained that it makes things like talking harder for him, that it makes one side of his body weaker than the other, and then I did my best to explain that all the doctors, all the therapists want to help him to recover from the stroke. I don't know how much he took in and actually understood (another down side of his language impairment) but he was listening. Then when the sobs eased a little bit I asked if he would go in if I asked her to shorten his session, and that finally got him out of the car. Yesterday, he cried all the way to PT, quiet, heart breaking sobs from the back seat. Whispered little 'too many doctors'... it's enough to break the heart of the toughest person and I am not not a tough person. Our saving grace yesterday was that PT includes running, jumping, and a therapist that rewards him with little games of basketball. All that to say, it's been a really hard week. It's been a long winter. Spring will bring three weeks of casting for Josh, little mobility and then when it's all said and done it means special orthotics for the summer and then come September, it means three months of physio therapy. I can't help but ask God why? When will it end? Psalm 40 rings through my mind as I ask him How long?? How many times will I go into his room long after he's fallen asleep and touch his head and beg God to heal him only to be met with silence. What does all this tiredness mean for his heart? The lethargic Josh is returning and I ache because though it could be nothing... it could also be EVERYTHING.

Reminder for myself

What do you give up to be a parent? That's been running about in my mind a lot this week. I would gladly give it all up for them, but it doesn't mean that there aren't things to give up. It doesn't mean that sacrifices haven't been made. Sometimes it's hard to not look at what has been given up, and other times it's more like seeing what isn't, and realizing that you wouldn't have it any other way.

I never expected to be a CHD advocate, I never anticipated weekly, bi-weekly appointments, numerous doctors and endless rounds of therapies, medication schedules etc. I had big dreams and big plans. Do I sometimes wish that I was working as a full time photographer? Yes. I won't lie to you. There are days when I lay down at night and I am so exhausted by the endless stress of all the doctors and therapists and phone calls to advocate for the kids that all I can think about it how lovely it would be to only have to worry about a photo shoot. How therapeutic it would be to just edit photos today... self pity? No, I think it's just normal. It's normal to sometimes look at the neighbours yard and wish you could get your grass as green as theirs.

Those moments don't last though, I am the only person in the whole world who knows absolutely everything there is to know about Joshua's therapy schedules, what happens in those therapies, what the next step is, and what progress is being made. I am the one who gets sit in those sessions and see the smile of pride on his face when he achieves something new, or to see the surprise on the therapist face when he uses a word we had no idea he knew. I am the only who gets to hold their hands when they are at the doctor and they are scared, I am the one who gets the post-doctor snuggles. When they go to bed at night, safe and snug in their beds I can close my eyes and know that there is NO WHERE else I would rather be, there is no photo shoot that will ever give me the satisfaction of a job well done that a smile or hug from one of these two boys can give me, no other job that would ever compare to the one I have. I didn't choose to have kids with medical issues, but I chose to have kids and sometimes being a parent means rolling with the punches. Sometimes it means giving up what you thought you wanted for something that you couldn't live without.

So, for the moments when I am weak, the times I am just tired from the endlessness of therapy... I write this post to remind myself,  that this is where I am meant to be, this is what I am being called to do at the moment. Fighting for CHD awareness, working with therapists, writing, raising my kids and yes, when all that is said and done... working shoots and being blessed enough work at something I can find passion in, something that soothes my weary soul.