Always Hope

Yesterday was filled with anxiety and frustration, and left me exhausted by the end of the day. I got a call in the early afternoon to say that the Head of Cardiology was out of the country and that they would not be having the meeting to discuss Josh's appointment until June 13th. I felt like I had been punched in the gut, an odd reaction maybe since I was okay with denial on this one, but at the same time I needed answers. I tried to tell myself that God was in this, he was delaying for a reason, maybe just maybe he had a plan. Telling myself something and really believing it are often very different though and I felt let down, and as I mentioned, totally exhausted. I tried to believe that hope was there, that hope was what we were clinging to but the reality of the words she said to me were really nothing more than 'wait' and I am not a very great 'waiter'. Patience is not and never has been something I excel in.

Tim decided to write to the doctor directly and ask her what she thinks the timing will be so that we can have a sort of plan, a sort of answer. That we have something to pray for, something to hope in or at the very least something to prepare ourselves and Josh for.

The answer that we got back was this:

"n re-reviewing the last two echo cardiograms there has been an increase in tricuspid regurgitation but the right ventricle has not increased in size as I previously thought (although the size is also not decreasing on the trajectory I had hoped for after surgery).  I think valve replacement is probably inevitable but the group may not feel it is necessary yet and I think we have at least months if not years of time to monitor things rather than needing to move more quickly.  I suspect a reasonable amount of our decision making will be based on how Joshua is doing clinically as well as the changes in echo measurement over time.
So overall I don’t think the current delay will be clinically detrimental although it is frustrating.  I did feel it was essential to have my most experienced colleagues present to have a meaningful discussion about things.
I hope this makes sense but let me know if you have more questions otherwise I will be calling on June 13th."



 My heart this morning is in a new place, a new hope has been offered and once again I see God's hand moving and working. Yes, we could still be facing surgery in months rather than years BUT, and this is a big BUT... prayers from around the world are going up on my son's behalf and it seems that God is listening, we have HOPE! Prayer works, keep talking to God on Josh's behalf and we may yet see more miracles in the life of our son!

My prayer this morning is one of thanksgiving for the hope we have been given, for the wonders of how a re-look at his test results can change his outcome. Thank you God and thank you for all of you who continue to hold Joshua up before God. Never in my life have I seen so many people band together in prayer for anyone the way I have seen it done on behalf of Joshua and I am awed and moved and so infinitely thankful. My mothers heart cannot thank you enough!

At a loss for words
not knowing where to turn
feeling the burden of the silence
the burn of the words
angry with the outcome
fearing the anger inside
wanting to hang on tight
not having strength in my grip.
Wanting more than what I have
afraid of what I might get
wanting rest from the night
fearing the light of day.

L

How long? As long long as it takes...

Denial, I have been accused of this so many times I can no longer count the Doctors and the people I know who have said I am cursed with this disease and up to now I have fought it and tried to prove that reality is something I have accepted, if that reality is something I can see. For example - the autism spectrum diagnosis they tried to label Josh with, or the death warrant they gave him at birth. It wasn't denial it was just that I knew what God was saying to me, that God was the God of the impossible, and that he had a plan for Josh. This past three weeks though have been very different, I have embraced and danced with denial like it was my first love. How else can you cope with the weeks of waiting for a meeting about your son that you have no control over? So, instead I have spent the three weeks doing as many fun things with my kids as possible. We went to Niagara and enjoyed loads of fun, we played with water on the hot days in the back yard, and Tim and I took time to enjoy our friendship by shooting each other and our friends in paintball. All the while forgetting for the moment that today was coming, the day that the Sick Kids cardiology meeting would happen, the day that they would sit around a table with Josh's file before them and plan the next step in an attempt to fix Joshua's heart.

I have heard people say 'he'll be fine' and I simply nod, knowing that while he will not be fine I am not yet ready to consider the alternative. There is bliss to ignorance, there is peace to pretending, to imagining that everything really is fine. I hear people tell me that I need to 'trust God' and I smile at them but inside I am thinking 'I do, but it won't stop what is about to go down', I hear people say 'but he looks so good' and I glance away and think 'did you see him yesterday when he was so tired he didn't know what to do with himself?'.

Denial is a state of mind that doesn't really mean you are ignoring the problem, but just pretending for a moment that it's not really true. Pretending, dreaming that you are in a different reality. My friends' Mom died this week, she was too young and so loved, there is no room for Denial in my friends world right now so what do you say to her? Nothing, that is what I have learned... There is absolutely nothing you can say to someone that will actually help. You can't say 'she'll be fine' or just have more faith. The finality of her situation is real. So too is our situation with Josh. His heart is broken, the valve now causing problems is literally UN-fixable and there isn't a thing we can do about it. I sit here and think about how many times the surgeon told me in the pre-op for his last surgery that he 'DIDN'T want to replace the tricuspid' valve', that surgery was too risky, that there were too many complications and because of his size and previous scar tissue that it was dangerous. I hear these words in my head as sure as I hear the kids ask for milk or cookies. I can't deny what they have said, I can't pretend that it's not real or that somehow this nightmare is simply that, a nightmare that I am having trouble waking from.

Today, as we sit and wait for a phone call from his doctor I am being forced to face those realities, I am being forced to look the truth in the eye and it's left me feeling sick to the stomach, my head pounding and a little like I am caught up in those tubes of terror that I once wrote about at Mc Donald's. There is no longer room for denials, there is no more pretending, there is no more imagining a different reality. This is our life, this is our son, and regardless of the outcome we must face it with clear minds, open eyes and strong hearts. As I sit here, knowing that even now they have Josh's file sitting on the board table in front of them I pray that they will find some other way, that they will find some creative way to fix this problem. That they will be filled with divine inspiration somehow. This is not denial but hope, it's hope against hope that we have more miracles left for us, that Josh has more time to prove what kind of man this is making him into.

This is all really just a prayer, an open ended Psalm where I am crying out to God and begging him for something else, begging him for the impossible yet again, begging him for mercy, begging him for answers. How long, I asked that once not too long ago, how long must we sing this song? The answer it turns out, is as long as it needs to be playing we need to be singing. There is no understanding pain sometimes, not comprehending suffering, no explaining away truths that hurt. We are a broken people, and no one is without their own cross to bear. I just pray that we aren't crushed under the weight of it.

Tug-of-War

Great Grandpa and Josh playing cars together

Time is so short isn't it? You look back at the yesterdays and they feel like it was minutes, not years but then it also feels like you may never reach tomorrow... Time is such a funny thing and by funny I don't mean 'ha ha' I mean... well, strange.

For example, I feel like I met Tim last week in so many ways but I look at everything we have gone through together and I feel like it has been 10 years, Josh is three and a half and yet I feel like he was just born, he's still a baby is he not? Kaleb, with every new development I think, he can't do that yet can he? He's not old enough to know that, figure that out? Then I realize that yes, he's 18 months... time is both friend and enemy. It heals and it wounds all at the same time.

As I sit here waiting for next Monday and the meeting of minds at Sick Kids I feel this particularly... I am glad for the reprieve that we have been given, I have been embracing denial until that meeting and I thank God for the time and chance to do that. However, the waiting is really killing me at the same time.

When we are kids, we long for adulthood, as adults we long for the days when we were free to stay out until the street lights were on, playing games with friends and not worrying at all about anything. Never satisfied, always in this tug of war with time.

People we love become ill, they grow old and show signs of their age and we fight against time to keep them as they were, wanting to stunt their growth, wanting selfishly to keep them from moving beyond where we are ready to let them go. I say this of both older people but also our children. Do we not all want in some way to keep them in a certain stage? Kaleb is my snugly child and he loves to run to my legs and offer random hugs, or he will crawl into my lap for no other reason than a snuggle. If I could I would keep him this age forever, and yet it would stunt him, prevent him from being the man he could be. Once again I am in a war with Time.

People die, they age and they die. Today Tim will bury his Grandmother, his Mom is saying goodbye to the woman who gave her life. Is it unfair? Yes. It sucks. Death sucks no matter how old the person is, it's never fair, it's not supposed to be, we were meant to live life eternally. It's sad, it's unfair and yet at the very same time, Grandma is gone to rest with God forever, she is healthy and peaceful and finally home. I never did like the game tug of war.

Why am I writing you ask? I haven't got a clue... I am just finding my coffee deprived brain is sifting through the inner battles this morning. Good and Bad, Right and Wrong, Soon and Not soon enough, Fair and Unfair and it all brings me to Time and how we just don't have enough, and yet we have too much.

We have enough time to work for success but if you look back, have you had enough time with those you have lost? You have enough time to lament illness, but have you had enough to hold a friend or child who is ill? We have enough time to complain about a person we love, but have we had enough time to tell them how much they are loved? We have the time to wait for growth but all we can think to do is rush it, in our impatience we are missing out on the gifts that Time brings to us.

Tell that loved one today that you love them, snuggle the child who is young enough to want it, hold the person you love who is ill, let them know the comfort you can offer. Spend time with the friends and loved ones you have neglected due to gaining status at work... we don't have as much time as you think for things that matter most.

If you can't beat 'em....

 

The other day I yelled out to the boys for what seemed like the thousandth time to stop playing in the dirt... it seemed like a never ending battle and I began to dread letting them go outside because I knew it would mean, more laundry, dirty floors and a total strip down at the door and march to the bathroom for a shower...

Then it dawned on me... I used to LOVE playing in the mud and making mud pies, mud castles and any other thing of mud that I could. The act of touching dirt, of getting muddy and wet... it's a childhood right of passage. So, no more yelling out the door... now I just suck it up and strip 'em down and shower them off. 

The funny thing... we are all happier as a result.

The gift of love

The language of love is a tricky thing, we all have different ways of expressing our love to people, and we all have ways of seeing love from someone else. There are books that talk about it, tests you can take that tell you what your 'love language' is and what the 'love language' of those you love.

Tim's parents and and brother and sister in-law and Tim and I did these tests when Josh was a baby. My language was both gifts and quality time, Tim is service and touch. I can look back at times when my Dad would buy me a gift and say... 'it's a because I love you gift', or times when my Mom would clean my room and leave a little note on my pillow that read 'I love you' for me to find when I got home from school. You can guess what their love language is.

As I look at my children I can pick out already what their love languages are, and I have to curb my desire to buy 'I love you gifts' for them or we would be broke. Josh, he is a quality time kind of guy. He thrives under our attention and strives for our time, and he enjoys showing me he loves me by wanting my time. Kaleb, he is my little hugger, my physical touch kid. He gives hugs and kisses for no reason at all, and his favorite thing to do in the world is to cuddle up in my lap and eat up all the love I have to give him. Just the other day, when he sensed that Tim and I were feeling down he gave us abundant hugs just to let us know he loved us.

Today, after church I was feeling down, and I had a deep desire to show my kids that I love them. Kaleb was napping, Tim was watching golf. So I caved to my desire and I packed up Josh in the car and we headed out to Toys R Us so that I could lavish them with love.

Now, if you know my kids you know that the best thing in the world right now is the Cars movie and Mater's Tales. Josh has a McQueen and Mack that he loving puts to sleep each night, that he drives around all day and refuses to allow Kaleb to touch. Kaleb hates this of course and yet he knows that these are Josh's special toys so he tries his best to leave them alone. So, today, we went to the 'cars' section of the Toys R Us and we found the two remaining 'shake and Go' cars. 'Red' and 'Sarge' were the two cars they had left (it seems they are popular). Josh's face lit up when he saw them, his eyes growing huge and his smile beaming from ear to ear when I handed the two cars to him and explained that he could pick one for himself and one for Kaleb. He sat there for a while, playing with each, studying them and finally decided on Sarge for himself, leaving Red for Kaleb. We payed the cashier and got back in the car to run a few errands.

Our first stop I undid the car seat and explained that Sarge would have to stay in the car and a minor freak out happened. Then, when finished at that location we headed back to the car where he beamed again at the site of his beloved Sarge. The second stop he seemed to understand that Sarge would remain in the car, but the entire time we were in the shop his little voice went on about Mack, Sarge, Red, McQueen and cars, and when again we approached the car his little smile broke out and he happily got back in the car and said hi to Sarge as if they were long lost friends. When we got home he carried the box carrying his new possession into the house and ran up to his Daddy saying 'look'! He then went about introducing Mack and McQueen to Sarge.

Then Kaleb was given Red, and the smile on his little face was beautiful. He clung to that truck like he would never let it go. (Probably realizing he finally had his own toy that Josh wouldn't be able to play with). At dinner, we all sat at the table eating and having races across the table with the different cars to many squeals of delight.

Loving my children is a joy, and something I do regardless of what they do, but showing them that love in a way that fulfills my love language is a joy unto itself. I delight in delighting them and today I got to delight them.

Support me in the Walmart Walk For Miracles

Support me in the Walmart Walk For Miracles

We have a team (Team Joshua) who is going to be walking 5K on June 12th to raise money for Sick Kids foundation. As Josh heads into his third surgery I am forced to think how fantastic this hospital has been to us, and walking for miracles is something I want to do in order to give back. I believe in miracles as you all know, Josh is a living miracle, one that I can see everyday, and there are hundreds of other little miracles in need of help as well. So, please if you can, sponsor or even join Team Joshua and help him and kids like him to have a bright future!

distractions

Sometimes all that life needs is just a little distraction for new perspective. I had a photo shoot yesterday that is been planned since the late winter, and I did not want to go. In fact I daresay I dreaded it. It's like this insanity that we are living with at the moment has captured my gumption and left me empty and afraid. I am using all my strength and energy to keep it together for Josh and Kaleb and the rest is used in trying hard to find hope and trust in God. That leaves nothing left for me, and certainly not a lot left for a photo shoot where I need my whole head to be there.

I drove to the shoot, praying along the way that it would go well, that my head would get in the game.

What I found when I got there was that God knew exactly what I needed on Friday, the best way to distract me. A photo shoot. Having  a camera in my hand, seeing the world through a different lens allows me to open my mind to different perspectives, different filters, and new hope, new life creeps into the place that before this seemed to be impossibly dead. Allowing my mind to stop thinking about the future for that two hours gave me time to instead enjoy the moment for a short while, and I found myself totally focused on those two kids rather than what Josh is about to face. It was a relief, a brief reprieve in a world gone chaotic.

It left to me think, about life, about God and about how he knows me so much better than I know myself. It left me to wonder how much he must love me, how much he must care, that he gave me the chance to forget for a while, in a way that only I could. How well does he know me, how much does he care, that he thinks of my needs months before I know I will need them? What is he preparing now, for the months ahead, to offer comfort, peace, hope, and forgetfulness?

When did I forget?

Something happened through the night, I woke at 4:30 and was unable to get back to sleep. I lay there for a long time (or it felt that way anyway) thinking about Josh, Kaleb and Tim and the amazing blessings that I have in them. That they love me is such a blessing, that I have been trusted with their care is beyond my comprehension. I finally gave up on sleep around 5 and came down to make a big pot of coffee and in my inbox was an email from a friend reminding me that miracles happen. That is when it happened...

How could I have so easily forgotten all those lessons learned in December? How could I forget the moment when Josh sat on Santa's knee at the Delta? Am I so fickle in my faith, in my passion that I forget the miracles when trouble strikes? I sat here and I read back through my Blog, I looked back on the painful memories, and I saw the stars in the night.

When Josh sat on Santa's knee that day, sick, broken, weak and slightly afraid, he also had the glow of childish wonder, of awe on the lap on which he sat, the eyes in which he stared into. Are we not all children? Am I not a child? Sitting on the lap of my God, broken, weak, sick and afraid? When did I get to old to remember the wonder? The awe? How could I have forgotten?

The coffee pot beeped it's completion and I got up to pour myself a cup and sitting beside the pot was Tim's Bible and in it I read this... Therefore, do not be anxious for tomorrow for tomorrow will be anxious for itself, Sufficient for the day is it's own trouble.'  Last night I was feeling bleak, hopeless and scared. I am still afraid but I have been comforted, I have felt the loving arms of my maker around me and I am on my knees in both surrender and awe.

the final daily photo

It's May 12th, the daily photo is officially over. I hope you enjoyed my attempt at blogging through images rather than words. 

How long?

I am sitting here trying to get a grip on things... trying to find some measure of comfort in the small things in life, or at the very least trying to muster some courage, some strength but for the moment I feel empty, numb and afraid.

Today we had an unexpected ECHO appointment for Josh, after noticing some things that are signs of heart failure we thought it best to have the doctor know what was going on, she asked us to come in right away. Today we found out that he will most likely need that leaky tricuspid replaced. In fact, we are facing open heart within the next few months. Is this real? Or, am I still sleeping and this is a nightmare? When is enough enough?

Psalm 40 asks the question 'How long must I sing this song'? and as I sat in the doctors office today I found myself asking the same question. How long? How long does Josh need to suffer? How long until this nightmare ends? How long until we can rest? How long until we can watch Josh without that silent fear that lurks in the background? How long before we can watch him sleep without questioning heart failure? How long must this go on? What is the purpose? Why? Why Josh? Why any child?

I am wanting to buy a few plane tickets, for four, and fly away, to hide. To take Josh somewhere safe, to a place where he can know only joy, only laughter, and not know another moment of pain, where he can feel full of life, not tired. My fear is that when we get there, his heart will follow, his pain will continue, our fears will catch up to us.

I am not ready, I am just not ready...

my baby is growing up...

Kaleb grows up

Background

Too often I want to be centre stage, or better yet in the directors chair of my life. I want the say, I want control, I want to be the person who says who, when, how and I want the 'why's' answered. So, to be reminded once and a while that the background is where I will grow, the place I will learn, the place that will ultimately lead to love, blessing and hope is refreshing. Directing, starring, it's exhausting, especially when you haven't got the talent to be there to begin with. I am not normally a 'rap' listener... in fact... I NEVER listen to it.. but this song captured me with it's lyrics. I hope you enjoy it.

water of life

Josh was a real helper today, he watered himself, his brother and even managed to get some on the new plants!

Mothers Day Magnolia!

My whole adult life I have wanted a Magnolia Tree in my yard... this Mothers Day I finally planted it!

40 years strong

40 years ago my parents married each other, and now here they are after the tough years, the happy years, the good times and the sad times. They have taught me about love, about laughter, about staying loyal and growing together, commitment and love. They have shared their lives with me and loved me regardless of the tough times I have put them through. On Saturday we celebrated that love, and as I watched them enjoying the party and each other I realized that they are the reason I am who I am today. They are the reason that I have learned how to commit my life to Tim, they are why I have become the strong woman that I am, the mother I am, the friend that I am and the wife that hope to one day become. Happy Anniversary Mom and Dad, may you share many many more years filled with love and laughter!

Loving the free drink today!

My birthday Starbucks... can you believe I chose ice tea over a latte??

Daily Photo - May 5th!

Spending my birthday afternoon sitting in the sun watching trucks and buses go by with Joshers... loved it!

Another year come and another one to come!

So it has come time for me to celebrate yet another birthday... most women hate this day, they hide from age as if it is out to get them, make them ugly and steal what is rightfully theirs...

I have a different perspective... I AM SO HAPPY TO BE OLDER! I love my life, I feel strong and confident as a woman in a way that I never felt when I was younger. I feel beautiful despite what society says or thinks. I am not thin, I have some wrinkles yes, but I am a mother of two wonderful boys and my body carried them. How is that ugly? I have a husband who sees the beauty in me, who nourishes the inner beauty that he sees and relishes in the outer beauty. Do I have wrinkles, yes I do and they came from years of trials and tears but also of laughter and wisdom.

Beauty is not mine by right but by blessing, and let me assure you that we all possess it even if we don't believe it. It may be your eyes, the way they sparkle, your smile or your dimple or the way your kindness warms the room when you walk through the door. Beauty, true beauty is not what is found in the magazines, that as a photographer I can tell you is hopelessly fake. Beauty is something you gain with wisdom, insight, teaching, struggles, compassion, selflessness, sacrifice, love, hope, life.

The passage of time that I mark tomorrow with a celebration is an achievement, one that took pain and suffering and joy to reach so I will celebrate with abandon and live life to it's fullest,wrinkles, weight and one day age spots and grey hair.  whatever may come; I am alive and I am blessed and happy. Thank you GOD!

Thank you for listening. :)

Happy Birthday to me!

caught up and not wanting to get behind again...

These are some YUMMY crackers!!

... and I am finally up to date!!

The damage done to my parents place after the wind storm

Playing with the Photo booth on the new Mac

My friends help me celebrate my upcoming birthday!

Our weekend away - Sunday and Monday to follow

Shae Theatre in Buffalo

Enjoying our time together

Niagara Falls - Our final night