Photographs by Laurie @ Horizons Photography

September 30, 2011

5 years old

When I started blogging in 2006 (it was under a different name at the time) I had no idea where it would lead, no clear thoughts on what to write or who to write to, or if there was even anyone out there who was at all interested in what I had to say. Since then I have been amazed by the amounts of people who write, telling me their story, wanting to share with me some of the hopes and dreams they have, the struggles they have endured, and some have simply laughed at my silliness. Blogging has become for me a way of reaching out, talking to people out in the world that I don't even know, and it's become a way for them to talk to me. I love it, I love that people write and respond verbally to my writing, I love to hear about their lives and the places they live. I have heard from people who live in the deepest poverty in third world countries, people who live in opulence in the US or Europe or here in Canada, and everything in between. All have the same thing in common, they care and they want to be heard. Each has a story to tell.

I still have no real 'goal' or 'plan' for this Blog, I enjoy it for what it is, a way to express how I feel, a way to be heard, a way to share the things I have learned in life and to hear how you have learned through your experiences. I have been asked about writing a book, and I won't say I haven't considered it, when at such time the story is finished, but until then I Blog. Out of sheer joy, sheer love of the art form. I write to you these 'letters' and I await your 'letters' in return because then we know that we have been heard.

When asked why I don't take my Blog more public than just word of mouth, why I don't try to get followers I am left with no doubt in my mind that if this Blog should grow it will, and has, but I want that to be a natural effect of the Blog itself, not because I was selling it. This Blog is personal, it's a story about my love and faith, my hopes and dreams, my prayers and my deepest fears and it's a story about my struggle to discover who I am in the craziness of this world. If people are meant to read it they will find it, of that I am sure. If it grows then I know that it's because God is using it, and there is no better payment in the world than that, and I would be lying if I said that I don't hope that it does grow for that reason alone.

So, you ask, why are you writing this particular post? I guess I am trying to say two things...

1) This is not a Blog that is written to 'become' someone, I Blog because I love to do it, not to make money at it. (You can look up my photography website for that - nudge nudge, wink wink.)

2) I want you to know that I love to hear from you, your stories, your laughter and your tears. I will never get tired of the emails you share with me. Please, send more!


Thanks for listening to me all these years, for reading and enjoying what I write, and thank you for allowing me to enjoy your writings! My hope and prayer is that we continue to share with each other for many more years to come.

September 29, 2011

How do you help?

A friend of mine is sitting at her desk right now, worried about another friend thousands of miles away who is pregnant (weeks away from due date) and about to watch her husband undergo open heart surgery, a risky one with some dire statistics. This friend (J) is praying, hoping and encouraging her friend and wishing she could do something to help.

It raised again for me the question of suffering, and role of the friends and family in the midst of suffering. Most people hear stories of suffering and in some way they are touched by it, they feel something and especially when the person suffering is someone close to you there is almost always a desire to reach out, to help. Those offerings are a wonderful part of being loved.

The question that I have though, the one that I have pondered a lot over the past few years is what do we do to help that will actually be a help? What do you say? What is appropriate? Just the other day I had friends for coffee and we talked about this very issue. We talked about how the church offers courses for those who are suffering, support groups for people who are grieving, ending marriages, facing addiction, struggling with an illness, but to the families and friends of those same people there is no handbook on how to effectively help.

I can't tell you the countless things that Tim and I have heard, things that were meant wholeheartedly to be comforting, reassuring and hopeful that actually left us feeling guilt, or somehow that Josh's illness was our fault, our lack of faith, or some sin from our past coming back to haunt us. These things, said in love, were unhelpful and even spiritually harmful at times.

So, what do you? What do you say?

I remember meeting a woman in the CCU, her son was given days to live, he was 13 and fighting cancer. She was a Sheik, and up until the last days she was entirely alone in the waiting room, with no visitors or companions other than her scriptures. When the time became short we began to see a stream of people coming, they came in shifts, two or three at a time, never staying for long, and they just sat with her. They didn't fill the silence, they didn't offer pat answers, they didn't tell her to have more faith, they just sat with her in silence and allowed her to grieve. She directed her grieving, if she wanted to talk she would break the silence, she decided what was talked about. If she wanted to read, she read and they sat beside her, when she cried they held her, when she wanted to be alone they left. It was a very powerful testimony, a very powerful thing to witness. (*side note - the boy lived and - last I heard - doing well)

No one person grieves the same way, this is the struggle, and no one ever knows what is best, but from someone who has been there I can say that the best thing to do is ask 'what do you need from me, and then give it to them.' If they say 'I want you to go, don't be offended, if they ask you to be quiet, sit quietly, if they ask you to talk about banalities, talk about how the Leafs are sure to win the cup this year, just love them. That I think is what I would want to say to someone who is watching a loved one suffer. Love them, not the way you would want to be loved but the way they need to be loved.

I started this off by talking about my friend J, I would ask that you finish this off with a prayer for her friends, and for her and her husband as they struggle to help from a distance.

September 28, 2011

Crazy

Have you ever had one of those days that you go to bed and think, 'today was crazy, I am such an idiot?'. I had one yesterday, it seemed that my head was just not in the game yesterday at all. I got lost on the way to Josh's school, both times I went! I put the milk in the cupboard, burned apple crisp, left the keys in the front door, found a spot on my arm that I was sure looked like skin cancer, spent my afternoon looking up skin cancer and made a doctor's appointment to have it looked at, turned left onto a one way street going the other direction (in front of a cop, who thankfully smiled at me and shook his finger), came home, showed Tim my 'skin cancer' only to remember that I had burned my arm when taking the burned apple crisp out of the oven, hence the sudden appearance of a discolored 'mole', then I got so busy talking with Tim and his Mom on skype that I didn't notice Josh taking a sharpie to my couch, himself and then his brother. When bedtime finally came, I went to the washroom, happy to be facing the end of the insanity; I picked up my tooth brush and squirted soft soap on it rather than toothpaste, and then the door bell rang, it turns out that I had also left the interior light on in the car... at that point I went to bed and promised myself I wouldn't get up until morning!

September 27, 2011

Stand back and see!



What a powerful song, I have shared this before (to listen you need only scroll down to past posts) but what amazed me about this song explanation was one particular line when he was speaking about the verse in Mathew that talks about having the faith of a mustard seek can move a mountain... I have always clung to that verse. All the emails that leave my gmail account end with a line 'I am walking on a path of mustard seeds', this came at a difficult time in life when all I had to hold onto was that mustard seed, and everyday I had to walk that path, keep believing, keep having faith that God would move mountains.

What I liked in this explanation of the song, was  'this isn't so much about your faith, as it is about God's power'! How true is that?! How many times have we been told 'you just have to have faith and it will all work out', putting the onus on us to be better, to have more faith, to believe more, and if for some reason the situation we are in doesn't resolve itself, or turns out in a way other than we had hoped, we are left feeling guilt, like we should have had more faith, should have done more. When the reality is, we are being given the chance to see God's awesome power, to stand back and see what He can do! Through Grace, not acts, through love, not deeds.

What a burden to have had lifted...

September 25, 2011

Enjoying His company

Again and again I come back to the concept of prayer, there are so many aspects to prayer that leave me with more questions and I find that the more I contemplate it the more I need to learn. I have learned much in the past few years without doubt but truthfully it's been a journey of about 8 years now, one would think that would be enough time to really sort out what prayer is, why we pray, how we pray, the point in praying. However, here I sit, years later and I still have questions.

I find that my prayer life started out like a baby starts, with total dependence and absolute simplicity. Just as a child grows and learns I have found my prayers doing the same thing, but as a child learns they also have expectations placed on them and I guess I feel that now. I feel a burden to know God better, to hear his voice clearer or be able to discern his will faster than I did. Yet I can't, and I don't, and half the time I find that I am still stumbling around in the dark looking for the doors and windows or at the very least a little light.

So, then it comes back to the question of who am I praying to? Why?

We heard a sermon today about prayer, we were reminded that Abba means Daddy, and given the image of a child who is close to his Father, how do they talk? How do they communicate with each other?

The thought struck me that neither of my kids talk yet, or at least enough to really communicate with their Dad, and yet there is no doubt that they have an open and honest and beautiful relationship. Josh, when separated from his Dad for even a short time will run to him with a huge smile on his face and open arms when they are reunited. Kaleb, when Daddy has left the room will look for him, seeking him out, asking 'Daddy go?' until he finds him and then, as with Josh, when he spots him he will throw his arms out for a hug.

Their relationship with their Dad is both selfish and totally selfless, they are totally dependent and yet totally free to be themselves. They seek him for comfort, for strength, for answers, for courage, for affection, for play, and for guidance. He loves them without conditions, it doesn't matter what mess they make, toys they break, what hurts they cause. He loves them regardless and he won't stop loving them.

With no full sentences, no deep thoughts, they are able to still have and maintain a deep, loving and fulfilling relationship with each other. Is this the hope that my Abba, my Daddy, has for our relationship? Is he wanting me to seek him out when I feel like he's left the room? Is he hoping that when I see his face I will run to him with my arms wide open? Is he watching me, loving me regardless of my mistakes, with a smile of pride on his face? Are his arms longing to hold me, the way Tim longs to snuggle with the boys? The times that I just don't have words to pray, are those the times when he is willing to just snuggle up and cuddle me until I am comforted? In the times when life is a little less complicated, full of laughter and dreams and hope, is he longing to join in, to celebrate with me, to play with me the way only a Father can play with his child?

The point of Tim's relationship with the boys is simple... to love, to mature in relationship, to enjoy each others company and teach and guide. They achieve that goal by simply loving each others company, and at the end of the day is that not what prayer is? Enjoying the company of the one who loves you without conditions? Do I need to complicate something as simple as that?

September 20, 2011

Holding On

Today I dressed Josh in his new clothes, styled his hair just right, packed his backpack with everything he may need for JK, and then we made the trek to school for the first time. Thankfully we had someone willing to watch Kaleb while we were out so I was able to stay close for his first day, great news is that he didn't need me. In fact, trying to distract him from school long enough to get a kiss goodbye was tough. I stood at the door watching him settle in to his seat, a big smile on his face and a part of me wanted to grab him back, hold on a little longer. He's grown up so fast it's hard to believe.

Tomorrow we will make the trek again only this time we will take Kaleb with us and I will have a baby to hold as I leave. What I wonder, will it be like when Kaleb goes to school? What will I do with myself? I suppose other mothers do it regularly and I should 'man up' as my husband likes to say, but there are days when I wish they would stay young forever.

I was a touch sad as I wandered around downtown waiting to go back and pick him up, feeling a little at odds with having so much time to myself. It was a surreal feeling. Then I went back to the school to pick him up and when he saw me his little face lit up and he raced into my arms, and I remembered, he's still young, he's still my little guy and no matter how big he gets, he will always always be my baby, and for the moment I need to enjoy him as he is. Tough to remember sometimes, when I am wanting to hold on so tight but in the end a total necessary reminder because at the end of the day I don't want to miss a thing because I was so busy worrying about them growing up on me.

September 19, 2011

Happily Ever After?

I was talking with a friend at church yesterday about kids and their wonderful belief in happily ever afters...

She and her daughter are participating in a Mother & Daughter book club (awesome idea by the way) and they just finished a book with a not so happy ending, but rather a real ending. Her daughter told her that she prefers happy endings and the question quickly rose, do we protect them from reality for as long as we can? I have thought about it all night and into today...

I can't promise my kids a happily ever after, even if both were perfectly healthy normal children, we live in a broken world where anything could happen. Tim or I could be in an accident, one of them could get seriously hurt, the hurts and bruises of the world can and will impact them as they grow up. I can't shield them from that, nor can I promise a happy ending, however, I can prepare them for the reality that sometimes strikes with a vengeance. I can teach them how to grow strong in adversity rather than crumble under it's weight, how to hang on to hope rather than give in to despair, reach out in prayer rather than turn away in anger, use their gifts and love to help others who need it rather than selfishly hoard it for themselves. I can teach them about the one who saves, the one who promises that while this world can't offer peace, He can, and one day he will offer them the ultimate happily ever after.

I have seen the products of brokenness where there is no hope, I have seen the devastation of 'reality' and the end result of searching for that allusive 'happily ever after', and my hope and prayer is that as parents we get to see both our boys end up with the dream, the happy ever after ending that any parent would dream of for their kids but can I do all that while still making sure that they are ready for life when it hits them smack in the head?

If nothing else motherhood has taught me that life is full of ups and downs, hills and valley's and sometimes it seems dark and hopeless, and sometimes the sun shines so brightly that it's hard to look up. I have learned that to cope, it takes strength that doesn't come from myself, that if I want to make it through this valley I have to keep my eyes looking forward, I have learned that to put all my hope in a happily ever after of the fairy tales is to miss the 'happy' in the now. I hope that as a Mom I can teach them to live in the moment and enjoy the 'Happy's' as they happen, live in hope during the tough times, and always always look up with a smile to find the strength of their Father and Maker.

September 15, 2011

Baby Ent

Today was a special day in the life of Josh (or more to the point his Mummy). Today we went shopping for his first day of school outfit. This is a moment I had thought about and wondered about when we found out we were pregnant with him, I imagined taking him for a haircut, buying a new outfit and backpack. All the fun things from back to school that I remember from being a little girl.

We got into the car and headed to the OshKosh and Carters outlet and the Gap outlet where we found a sweet little outfit that he will wear on Tuesday afternoon for his first day of JK.

It was in the OskKosh outlet that the reason for my post happened. Josh was being so quiet and good, following behind me from rack to rack while I looked at the shirts and went back and forth between jeans and pants. He kept his hands behind his back and I assumed it was just the stance he was taking, he looked relaxed and happy and not at like he was in pain or anything I should worry about, so I didn't. I took his good and quiet mood for what it was and I wandered around the shop without incident.

I finally picked out a vest for him (nothing in there was really what I had in mind for his first school outfit). I proceeded to the cash and put the vest on the counter, Josh was close beside me. I put my purse on the cash desk and began the search for my debit card, which it seemed was missing, so then the hunt for the visa was on. The cashier gave the total and I looked up at her, something was amiss. I asked her why it seemed more than it should, the vest being only $19 and with no tax on kids clothes I shouldn't have to pay almost $30! She said, 'well, with the vest and elephant that's the total.' I looked down at the counter, and sure enough there was a little Elephant sitting there. I looked at Josh who stood looking up at me with a big smile on his face. I looked at the door, where a large stack of stuffed animals were on sale and I realized that he must have picked it up when we walked in, then walked all around the store holding the thing behind his back, and then when he got to the cash desk, while I was distracted, he quietly put it up so that cashier could ring it up for him. He looked so pleased with himself, his big smile beaming he said 'Ent' as if that explained it all. (Ent. being Elephant). I had seconds to decide, put the 'Ent' back and risk a tantrum of mammoth proportions or give in and say 'just this time because it's a special day for you and Mummy, but you can't do this again'. In the end you can imagine my choice, I mean who can resist a sweet little boy's smile; and let's be honest, he could very well have chosen to walk out of the store with it!? At least he knew that he needed to pay for it right?!

So, now he has a Mummy 'Ent' and a baby 'Ent' and he's happily snuggling both as I write. All in all, it was one of those things that I will remember until I am old, every time I see that little stuffed 'Ent' I will remember the monkey and his cheeky grin.

September 14, 2011

they don't miss a step...

A week ago today I was trudging off to see Kaleb's doctor regarding his illness that landed him in the hospital. The boys were 'well behaved' for part of the morning but shortly after praising them for getting along so well and being so good I found them hiding in the back yard with a box of stolen cookies. It was their last morning together for a while so what could I do? I let them think they got away with it, and tried not to giggle at the cookie crumbs on their faces when they came inside.

Yesterday Josh was left alone for only minutes and he had taken a marker to my couch, several actually, it looked more like a younger Picasso than a younger 'Josh'. Too bad it wasn't on canvas?

Last night Kaleb learned to get out of his pea pod bed, crawled out and came into the living room with big smiles for his Gramma, twice.

At 4:15 AM Josh woke up screaming for Mummy, (in the past the only thing to wake him was either nightmares or pain) I went racing in and asked him what was wrong and a quiet little voice in the darkness said 'pizza'?. I have to admit I stumbled a little, not sure I was hearing this, needing to pinch myself to be sure this was no silly dream; sadly it was real, I was woken at a crazy time to be asked for pizza!? He wouldn't go back to bed after that, I gave him something to eat, gave him his pain meds, but still no sleep. Finally we brought him to bed with us. We were just starting to drift off to sleep when again a small voice in the darkness says 'rocket ship'? (the Wii game his Daddy bought him last night).

Ultimately we did all manage to get a little more sleep, but when I woke up this morning and thought back to what I was feeling last week at having Kaleb say goodbye for an undetermined amount of time, facing Josh's surgery, all the sadness, fear and worry, well I had to close my eyes and smile. These little boys haven't lost a step, they get knocked down but they don't miss a step and all along the way they are determined to cause some mischief.  I love it, I love them. Though a little rest would be great it's nothing that coffee can't fix!

September 13, 2011

Right or Gift?

Back when I was first pregnant with Josh we went to stay with friends in Waterloo for the night. That night, I had a terrible nightmare, one that has quite literally haunted me through out this last three and half years. I was deep in the basements of a hospital, the sub levels if you will, and there was no one there, the halls were dark and empty. I was having an ultra sound and I could see the baby in real colour, like the little guy was on TV and not in a black and white 2D US. He looked up at me, his big eyes sad and scared, his face horrific with a skull like appearance, blood dripping from his mouth, the same mount that was calling 'Mummy help me'. I woke up then, and didn't sleep again. That nightmare, looking back, was my first glimpse of trouble for the little child inside of me, the one that we have all come to know and love so much as Joshua. That was the day I began to pray for my baby, and I have not ceased, though at times I seem to not have the words to pray for him, nor the emotional stamina.

The other night in the hospital, when Josh was so angry with me, screaming in his bed for me to go away I sat on my bed begging God to help us, begging him to give Josh rest, to allow me rest. In that prayer, or in the immediate moment after the prayer I had an epiphany. Three moments in the past two weeks I have had moments where I have been lying in bed, crying, begging God to help us. Once, was when Josh was screaming in his bed, his little heart clearly failing, his body tired but his mind wanting to get up and play. I prayed that morning for Josh to know peace, and instead he became louder, more upset, more tears, more screams. The second time was while I was in the hospital with Kaleb, the nurse woke him every hour and we were both beside ourselves we were so tired. I cried out to God that night, for rest for us both, for peace, for help but the nurse got worse, Kaleb's cries louder and my rest never came. Then the night with Josh, just two nights ago. My cries have gone without answers, and out of nowhere an anger bubbled up in me, so strong that it clutched me. I yelled at God (in my mind so as not to disturb Josh any more than he already was.) Tears and anger and guilt, because for the entirety of Joshua's life I have been afraid to tell God that I am angry and confused by him, that I don't understand him, because what if Josh suffers my anger, what if God punishes me by using Josh? (Yeah - crazy I know) That night however I asked him why? Why he didn't seem to listen to my prayers? Why did he ignore my cries? Why did it seem that whatever I asked for he gave us the opposite?

Now in light of all the answered prayers you are probably wondering why I am such an ungrateful cow?! I would too... however, I was rationalizing it this way. He was listening to your prayers, he was answering you, it was just me that he was ignoring. (No, this is not entirely rational, nor theologically correct as Tim would say). It was how I felt though, but that night, as I lay there talking for the first time in a long time honestly with God, something changed in me. Our nurse came in, hearing Joshua's cries, and found me upset, she asked if I would like a little break, said she would sit with him for a little while and I could take a walk. I didn't wait to let her change her mind, I grabbed a sweater and headed out into the night for some air. I walked around the building praying and asking God to help me understand. When I came back to the room about 10 minutes later Josh was fast asleep. I sat on the bed and sighed with relief.

The epiphany I had, was that I was expecting God to do what I want, when I want it. When we found out about Josh's heart defect my prayers were 'fix it'. He didn't do it immediately and I felt betrayed. When we had Josh and he was weeks in the CCCU and I was begging for help, it always seemed that whatever I prayed for the opposite would happen. Always though, in time, I have seen my prayers answered, not in the ways that I would expect or want even at the time but they are answered. Josh is here, alive, that means that prayers have been answered; but what about the little things? What about the little prayers for help in the immediate moment. The baby who won't stop crying, the screams of an angry little boy, the mother who knows that she needs a few hours sleep to deal with the day to come? Do those prayers seem insignificant to a God who deals with countries at war, child abuse, victims of tragedies, children abandoned by their parents, a parent who has lost a child? Do I have a right to these prayers? This is where I realized that I don't have any right to them, but by grace, mercy and love he asks me to come to him and share them with him. He asks me to lay my burdens at his feet and leave them there, not just show and tell, but leave them like a gift at the alter. He will take care of them, he will honour all of them and the relationship that allows me to bring them there.

Maybe I needed some of those unanswered little prayers in order for me to have an honest discussion with God, so that when he answered my little prayer that night I would see that he really does care, maybe He is God and maybe I am merely me, and instead of being frustrated and angry about 'unanswered prayers' I should just say thank you for the answers I have, and trust that he really does care, that they are all heard and that he will answer them in his timing. It's not easy to trust in a God I can't see, it's not easy to lay it all down for him to see, it's not easy to feel like my cries go unheard, but I know now that it's a gift that I can come to him at all. It's not a right, it's a mercy, a blessing, a gift that he wants to hear from me at all.

September 12, 2011

The journey home again

The emotional roller coaster of the last few days has been intense but with relief I am finally able to Blog and let you know that we are home. Josh went in on Thursday for his surgery, it took 6 hours. The managed to fix the T-valve by adding some human tissue, and they once again replaced the Pulmonary valve which it turns out had started to reject and was shriveling. When I asked the doctor why this happened and if it would happen again he simply shrugged, it seems that it's so rare that they have no real data on it. We could have anywhere from 6 months to 7 years before another open heart surgery is needed, and we should know within the next few months if he will need the open chest shunt surgery. It wasn't the best news, nor was it the worst that we have ever faced. However, seeing Josh was fantastic. The night of the surgery was hard, he woke a few times, crying with no sound, calling Mummy but with no voice, and silent tears dripping down his cheeks. They took out his breathing tube and he went to sleep, and remained that way for the night. Day two we were moved quickly from CCCU (Cardiac Critical Care Unit) to Step down (leaving a one to one care ration and going to a two to one care ratio). Once in step down the recovery process began and it's not been very fun but it's been better than any other surgery before it. He was sick to his stomach for the first day and kept on some very strong pain killers which helped but day two he was moved to slightly less medication and made to move around to help his lungs clear out any fluid. This caused a great amount of pain and for the last few days he has been angry, tired (he slept a total of 12 hours in two days) and the sleep he did get was restless, with moans and grunts and crying. Last night was possibly the worst as his anger and frustration was taken out on me and his eyes held betrayal when he looked at me. Nothing I did could comfort him and he kept telling me to go away. Josh and I have always been very close, it was difficult for me to not have a way to help him. Hearing your child tell you to go away when he needs you most is so incredibly painful. The nurse finally came at midnight and found me crying in my room, Josh screaming at me, she offered to sit with him while I went for a walk and I was only too happy to leave. Josh much have been happy for me to go too because by the time I came back just ten minutes later he was asleep. The night after that was filled with a lot of moans, a lot of grunts, and a number of wakeful spells. Nothing I could do would help him.

He had an ECHO this morning and so far the leak in the T valve seems much better and the pulmonary is holding well. We are again at a place where we need to wait and see, not just to know if he will reject the pulmonary valve but also to know if he will need the shunt. This you can pray for as we just don't want to have another surgery! His lungs have fluid on them so we will need another chest Xray on Monday a long with another ECHO.

The good news, and there is good news, is that we are home! We are home and already Josh seems happier. He is sleeping as I write this, and he wanted to play with me today so I am guessing he is on his way to forgiving me. I was lying down on the couch, eyes closed, desperately trying to rest (I had much less sleep than he did), and he climbed up on my shoulder, lay down beside me and started using his doctor kit to take my vitals. Payback I am sure for the countless times he was woken for just this reason.  He is a warrior, a hero, a miracle and no matter how angry he is with me I thank God that we live in a place where this was possible, where we could have this needed surgery without needing to raise the funds and stress the money. I am thankful that we had such an incredible surgeon who was able to fix the T-valve rather than replace it, and I am thankful for all the thousands of prayers that went up on behalf of Josh and our family, for the friends who went above and beyond to make this as painless as possible.

It was time to say good night, we have a road to travel and I am weary.

September 7, 2011

Last day pre-op

I said goodbye to my youngest, who cried when I shut the door of his Gramma's car, then Josh repeated all day 'brother crying' and at one point thought he saw Gramma's car and got really excited saying 'Gramma, Brother' and I had to reiterate that his brother was going away for a little while. ARGH! SUCKS!

However, we then got our hair cut, went to Chapters to play with Thomas, then to the ROM to look at Dinosaurs. He's been so good, so giggly all day that I have to wonder if he thinks if he's good enough this won't happen? Someone told me once that kids often think that they have been bad, and that is why they need to go to the hospital. I told him he's good, that nothing he did made this happen, that he is a good boy... but again, with no feedback it's hard to know what is going on his little mind.

We got pizza, had his pre-op bath with special soap which tickled him and made him laugh and we went to bed with prayers, hugs and kisses. Not a terrible day at all, but understandably hard given the cloud threatening our horizon.

I don't have many words tonight, I just wanted to update you all on his last day pre-op, he's being very strong and brave. Thank you all for your comments and emails of love and support and offers of prayer.

September 6, 2011

He knows

The first thing Tim and I did this morning was sit down on Joshua's bed and fill him in on what would happen today, we did our best to assure him that we loved him, that this was all going to make him feel better in the end and that he would hear some scary things today but that at the end of the day we would bring him home with us. He seemed okay, though it's hard to know what the little man is thinking when he can't talk to share his feelings or worries. Tim drove us to the hospital and dropped us off, then he went home with Kaleb and waited for the babysitter before coming back to join us. During this time Josh was booked for a few tests. The first was a blood test, and as soon as they took his blood he began to cry, not so much in pain but in knowledge. He closed his eyes as tight as he could and sobbed, he continued to sob all the way to the chest X-ray area where he put his head in my lap, holding tight to my hand and his monkey. They called us in for the X-ray and he sat where he was supposed to sit, did everything he was supposed to do without being asked and as we left he once again began to sob. It wasn't until we got to the clinic and found some toys that I managed to distract him long enough to stop the sad crying.

We were taken to a room where the nurse came in and asked all the requisite questions, and then the resident surgeon came in to explain the surgery. He began to try everything he could think of to distract me from what the doctor was saying, until finally Daddy arrived and I was able to play with Josh while Daddy listened to the doctor. The resident was the same one who sat in on his last surgery in December, and he was able to go over in detail every aspect of his previous surgery, and then explain the new surgery, the risks and the fears as well as the hopes. As it turns out, no one, not even the best surgeon in the world can figure out why his pulmonary valve is no longer functioning, they all just said they are very surprised and hope it doesn't happen again. He then explained that there may be a need for a shunt from the brain to the lungs, again something they don't want to do but may need to do. All the information, all the statistics are laid out before you and then they hand you a pen and ask you to sign on the dotted line.

Did you know that the death statistics are 1/20? (I won't bore you with details on how I feel about that little number, I am sure you can guess). We signed, what else are we supposed to do?

He had a duplex scan and watched Dora, then back upstairs for a chat with Dr. Van Arsdell who again went over the statistics with us and shared his ideas on either repair, complex surgery or a full replacement. His thoughts on this are that we will likely need the replacement but that he will do everything he can do prevent that from happening. A complex surgery is not as likely since his heart sack is where they would need to take the tissue from and since this is third surgery there is not likely going to be any 'good' tissue to use. (A complex surgery means that they in essence create a valve from his own heart tissues). It all sounds terrifying. Through out all the tests, talks and explanations Josh held my hand tightly, but his tears at least had stopped.

We took the train home and Josh sat beside me with his head resting on my shoulder, his big eyes sad, his beautiful smile gone. Before bed I asked him if he wanted to talk about today he didn't respond so I explained that in order to make him feel better they needed to do an operation, that it would hurt and it would scary but that Mummy and Daddy but more importantly God would be with him the entire time and we would take very good care of him and that when it was over we would bring him home with us, he listened but his eyes were closed. Then I asked if he wanted to talk anymore or if Mummy should stop and he simply said 'stop'. We watched an episode of George to cheer him and then I tucked him into bed, said our prayers and had good night kisses.

My mothers heart is breaking tonight. This just sucks on so many levels. (Not an overly eloquent way of putting it but I can't think of another way to tell you how I feel.)

September 5, 2011

Will it be enough?

Today was my final day of ignoring the week ahead, we allowed ourselves today to forget and just enjoy time as a family. We headed to the Airshow and the CNE and ended up at the roller coaster at Ontario Place. The kids were exhausted by the time we got home but still had enough energy to head out to the back yard for a game of 'fly' with Daddy. Watching Josh fly through the air, all smiles, brought lumps to both Tim and I because we know that in just a few days we won't be able to toss him around the way he loves. By the time the game was finished Josh was so tired that he became lethargic, he wouldn't eat, and finally wanted his bed at 6:00.

Now the house is quiet and Tim and I are left with the knowing. Tomorrow morning I will head out the door with Josh and make the short trek to Sick Kids hospital for our pre-op appointment. He will have blood tests, chest X-rays, a duplex scan and then we will sit and talk with the surgeon, have teaching on what to expect (think we can skip that part) and then we will make the trip home, with a little boy who knows what is coming. We have managed to keep it from him up until now, wanting to protect him from the fear and worry that he struggles with and has no words to express. There will be no more hiding tomorrow, he will hear the surgeon, he will hear us, he will know what these tests mean and he will do his best to distract us, trying to get our attention off of the words that the surgeon says. He will bring toys to us, he will act silly to make us smile, he might even close his eyes and pretend he isn't there. Nothing he does will stop what is about to happen, nothing I do will be able to put a halt to the pain about to come. We will once again sign consent for them to stop Joshua's heart and cut into his tiny.

As I sit here writing this I feel peace, as I see him showing more and more signs of heart failure I know that we are doing the very best that we can do for him. If it were possible, if I were allowed, if it would help, I would happily give my blood, have my chest x-rayed, have a duplex scan done on me and come Thursday I would allow them to stop my heart, cut me open, if it would save his life I would gladly offer mine. The problem is that only he can do this, and somehow we need to find the words to explain this to him.

I have been telling him over and over again that God can hear him, without him needing words, God would know what he needed, he would comfort him if he is scared, he would help him and Josh wouldn't need to have words, he would only need to trust his friend. My hope and prayer is that he understands what I am telling him, I so badly hope that he understands enough to know peace and comfort from the knowledge that his friend and maker is with him no matter what. I hope it will be enough because I can't think of anything else to offer him.

September 4, 2011

St. Pauls Bloor Street

This morning's service was one I won't soon forget, it was like God was in the room with us as a community, holding us together, binding us and building up a group of people that love each other so much. It was an emotional service, with a final prayer at the end for Joshua and Kaleb and our family as well as any other members of our community who are suffering. It was so beautiful, and in so many ways to freeing to not need to tell everyone who asks about Josh all that is going on, but to simply have it spelled out by Barry (The Rector of St. Paul's). Usually I leave the service and there is a barrage of questions about how Josh is doing, which is wonderful because you know that people care, but this week my emotional strength was depleted and when the service ended with prayer for our family I left to not questions but simply words of love, concern and prayers. It was exactly what I needed today, and allowed me to not be comforter but simply be comforted. What a blessing. It was also so wonderful to see a community so touched and bonded together.

The worship particularly spoke to me and I have compiled a number of the lines from the music we sang during the service. The songs, 'Lord, Reign in me', 'Hosanna', 'We fall down', 'I give you my heart', 'God of justice' and finally a powerful rendition of 'Crown him with many crowns'.

Over all the earth, you reign on high
Every mountain stream, every sunset sky
But my one request, Lord my only aim
Is that you'd reign in my again.
Lord reign in me, reign in your power
over all my dreams,  my darkest hour
Over every thought, over every word
may my life reflect, the beauty of the Lord
Cause you mean more to me, than any earthy thing,
so won't you reign in my again
Praise is rising
eyes are turning to you
we turn to you
Hope is stirring
We long for you
When we see you we find strength to face the day
in your presence all our fears are washed away
In your Kingdom broken lives are made new
You make all things new
We fall down, we lay our crowns at the feet of Jesus,
The greatness of mercy and love, at the feet of Jesus
and we cry holy, holy holy
and we cry holy, holy, holy
and we cry holy, holy, holy is the lamb.
Lord I give you my heart, I give you my soul
I live for you alone
Every breath I take, Every moment I'm awake,
Lord have your way in me
God of Justice, Saviour to all
Came to rescue the weak and the poor
Jesus you have called us,
Freely we received
Now freely we will give
Stepping forward, keep us from just singing
Move us into action
We must go
Crown him the Lord of life, who triumphed o'er the grave
and rose victorious in the strife
for those he came to save
His glories now we sing, who died and rose on high,
who died, eternal life to bring
and lives that death may die.
All hail Redeemer hail, for thou hast died for me,
thy praise and glory shall not fail
throughout eternity!

My heart is full and my blessings impossible to count, thank you to my wonderful St. Paul's community for circling around us then, now and always. We are truly blessed to be a part of such a strong and wonderful group of people. Your love has seen us through and will continue to see us through, and your prayers offer us hope. Every week we have the entrance prayer "Lord Jesus Christ, Son of the living God, have mercy on me' and every week I see each and everyone of you being used by God to show mercy to each other and us. There is blessings untold in that large church we call St. Paul's and a family that is growing stronger by the day, it is beautiful to see. 


Three men

I just knew that upon Josh's return there would be laughs and smiles and I was not let down. The brothers were, and are happy to be reunited! Josh's face lit up with joy when he saw Kaleb (Kaleb had just woken  up from nap so he was less 'visual' in his happiness). The first thing Josh did was to give Kaleb his train. The argued a bit, fought when it got close to bedtime, but they woke up enjoying each others company and Kaleb has even used his name a couple of times now. Life in our house for the next two days is normal and instead of looking ahead to the coming week I am going to enjoy these precious moments with them together. These two little boys who have so much fun just being boys and having a brother. I have said so many times how blessed I am to know these little men, but sometimes that knowledge overwhelms a mothers heart with thankfulness and it can't help but over flow. Never have I known that I could love like this, I had no idea it was really possible to love that much. My mother talked of it, but I didn't get it until I met my boys. How I went so long without Tim and the boys boggles my mind. No matter what this week looks like, no matter what the next year or five years look like. I have the love of these three amazing men who share a home with me, it doesn't get any better than that!

September 3, 2011

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a morning ramble...

There are so many things running through my head right now, practical issues like babysitting, school, packing, figuring out food for the hospital, so many stupid things that I am sure in the end will work out. I worry about Kaleb, he's going to Grandma and Grandpa's so he'll have a good time, but will he miss me? Will he miss Josh? What if his breathing causes issues? How do I handle to sick kids in two cities in two hospitals? That is when my chest tightens and my heart races a little. It's a what if, I never used to worry about those, but suddenly I am plunged into a world of worry and guilt (that's what child bearing does to you you know). I think about Josh, all the images from his last surgery flashing through my mind and my stomach turns. How are we here again? I said to Tim last night 'I don't know if I can ever trust a positive prognosis again' and I meant it. I can hope in it, but I have found that I can not trust in it.

I find myself trying to remember everything from the last surgery so that I can plan for it, prepare as quickly as possible for the insanity we are about to walk into. I do not believe in a God of Chaos, I am once again trying to assure myself that God has a to bring this Chaos into order but I can't help but ask when? I feel like Dorothy caught in the tornado, stuck on Oz and fighting the wicked witch of the west just trying to get home.

I wrote the other day on Twitter that in a world gone mad I need only look at my boys smiling and playing and giggling for it to be right again. Chaos made ordered by two young boys. I imagine God smiling when he sees moments like those, and I know he cries when the boys suffer. This was not what we were created for, it must break his heart.

Josh is at Grandmas and Gran-dad's, while Kaleb was in hospital they took him for a couple of days so that we could concentrate on Kaleb, and I miss him. I see the dog standing outside waiting to come in and I know that if Josh was here he would jump up from whatever he was doing and go open the door for Charlie. I see Kaleb wandering aroud looking for his brother, his best friend, and I know that if Josh was here they would be fighting and stealing each other toys, I see Josh's empty bed and I know that if he were here he would be loading all his toys onto it so that when bed time came he would have things to do. I miss him so much, and I can't wait for his smile to once again light up the room this afternoon. He is well loved, well prayed for, and I have to remember these things when the guilt and fear and worry begin to unfold in my heart. In all the chaos it's best to look straight ahead and up and hope that the noise around fades to the background.

My prayer as we enter this week is that we find we have tunnel vision, that the chaos can't intrude, that we are so centered on our maker and his love for our son that we know only peace. With every surgery comes new insight, and we know from the last surgery that Josh has an allergy to morphine and we are hoping that this knowledge will aid in his recovery. He also has bandage allergies and this too can be helped with the knowledge. My prayer for Josh is that they fix that stupid valve, that as much as I don't like that vavle that he will be allowed to keep it and not need it replaced and that when they replace the Pulmonary valve it will be with no leaks, and that his heart will finally shrink in size and become what it is supposed to be. My prayer is that the entry is quick and easy and causes to no bleeds. My hope and my prayer more than anything is that he knows peace, that when he wakes up they have no need to restrain him, that he will not try to fight the tubes and wires and masks, but rather that he will feel peace and want only rest. I didn't pray for those things before and I learned that every step of this process needs to be brought before God.

A woman wrote just yesterday that a 'mother's heart is tender' and she is right, it's fragile and tender and so easily bruised. I ache for my kids, and I worry about them constantly and my prayer is that one day we will all know peace from the insanity, that Josh can finally begin school, a talking and happy and healthy little boy and that Kaleb will run around giggling and able to handle a cold or allergies without issue. Of course, I imagine even if that were true we would have stitches and broken bones to deal with. When they tell you motherhood is a forever commitment they don't tell you what that commitment will really look like or feel like. I wouldn't change a minute of it, not one second of it if it meant that I wouldn't know these two little boys, but man the worry is new to me, and the guilt? WOW!




September 2, 2011

The Paradox

We have all heard the saying that when it rains it pours, and for a while now it's been raining. For the last two weeks every single member of our family has had a hospital visit, though our kids are certainly the ones to take the brunt of the suffering. The storm picked up speed on Wednesday when Kaleb was rushed to the ER limp and struggling with his breathing. He was vomiting and listless and thankfully I had a friend there with me to watch Josh while they worked to get Kaleb breathing well again. We were admitted to hospital and spent the night trying to find the right balance of Ventolin and Oxygen, thankfully his vomiting stopped once we got his breathing under control and he began to take more fluids and was able to keep them down. We were released on Thursday with puffers and instructions for follow up and what to do 'next time'.

Today, with Josh away and Kaleb not feeling great we decided to take it easy. We had to do some grocery shopping but other than that we were enjoying a quiet day with our youngest. Then I got a phone call from the secretary of the Head of Cardiovascular surgery at Sick Kids. They want him to come on Tuesday for pre-op and Thursday for the surgery, in fact they wanted him to come on Wednesday but Kaleb has a follow up on Wednesday that is really important so I had to change it.

The blessing in this is that there will be no terrible waiting, no wondering when, but as I said to Tim... It's so fast. My heart needs time, my brain needs time to mentally prepare. My body is exhausted both emotionally and physically from the week we have had, I want to scream and swear and hit something. I also want to throw my hands up and Thank God because this is obviously the best or it wouldn't be his plan. It's a paradox and I am too tired to wonder over it.

This is not a post to whine to you about the woes of this past few weeks, although I have started down that path I realize. Instead it is to let you know, to update you so to speak. Kaleb needs prayer as we struggle to figure out what is wrong with him and how to cope with his new medical issues. Josh needs prayer as we try to prepare him for what he is about to under go, and as he faces so many unknowns and finally Tim and I need your prayers as we struggle with fatigue on so many levels.