Humbled...

Wednesday I wrote and told you about the frustration of Joshua's latest speech assessment, I told you how sad it made me and how I felt utterly helpless to help my son. Thursday I wrote and told you that his positive attitude was quickly making me change my own negative one.

Today, Friday, I realized something that I had to share.

As I have mentioned in another post about this subject, the Diocese of Toronto, specifically the Archbishop Colin Johnson, gave us some money from the Bishops discretionary fund to help us get Josh the much needed therapy he needs. Due to all the illness that this house has seen in the past month and a half since we recieved that money I haven't had time to track down a good therapist and with Christmas coming I had planned to wait until January to find that person.

After hearing from the speech pathologist on Wednesday that Josh needs a language therapist (not a speech therapist) I was given a name of a woman who has agreed to take Josh in for assessment and work with him, she's a private therapist so the money we received from the Bishop will be needed to access this help. Today, as I was going about my day it dawned on me that had I not had that frustrating and sad encounter with the Bloorview pathologist on Wednesday I would have spent all that money on a speech therapist and not a language therapist (there really is a difference), and Josh would not be getting the help he actually needs. As I contemplated this I was humbled, my doubts and fears were saying to God 'I don't trust you'. What I realized today, what humbled me, is that we needed that frustrating assessment to get a little closer to getting Josh the help he needs. The illness that set me back for the last month and a half, the fatigue that has made me put off finding Josh a good therapist, all of it was a small part of a bigger picture. Had I not been so ill, had we not had that assessment, we would be spending hours of time and hundreds of dollars on therapy Josh doesn't need and that won't help him. Instead, though it took some suffering, fear, hurt, anxiety, frustration and even some anger, Josh is now going to be getting the best possible care that we can afford. God indeed has a plan, even when we can't see the forest for the trees, he's got the path all mapped out for us and is taking us by the hand, through the thorns to meadow.

As I watched him tonight playing with Kaper I realized that if God loves him so much, to care that he gets the right therapy, going to great lengths to ensure that it happens, then his plan is a good one for Joshua.

Be strong and courageous indeed. He is a God who does the impossible and as I watch him answer my prayers in unexpected, sometimes painful ways I am given a deep and all encompassing peace and hope. I have said this before, and I say it again because once again I am humbled "God has this". We are not alone, despite how it may feel, no matter what comes, even if the journey becomes painful and difficult. "HE has this! HE has Josh in the palm of his hand, and he's loving him and building a strong man out of him!"

Thank you, for your prayers and encouraging emails and responses. Thank you to the Archbishop and all those who so generously give to the Bishops discretionary fund. Our family, Joshua, will be forever grateful that God has used to you to bless us in this profound way. My heart is at rest tonight. My son will get the help he needs and even as I have tears of joy and relief pouring down my face I have a smile and peace that comes from God alone.

I can't

What is amazing to me is this: Despite the set backs, despite the frustration, the tears, the anger, the doubts, the fear, the wretched feeling of hopelessness, despite all of that I can sit down with Josh and play a game with him and have him encourage me to do better, have him tell me 'you can do it Mummy, try again' and when I crash the car or lose the game he can flip to an easier race and say this one is 'easy' and then when he wants me to crash against the car in the race with me (to eliminate my fellow contender) and I say I can't he says 'you can Mummy, you good at crashing'. His sense of humour is fully in tact, he's funny and he's a tease, he's smart and caring and one of the best and most encouraging kids I know. If you say 'I can't' he pipes up with 'you can'.

Last night, in the depths of my frustration it dawned on me... I am saying "I can't" and Josh is saying "I can". Isn't that more important than anything science says about him? If he believes he CAN then maybe, just maybe he WILL.

I have been saying "I can't" and God is saying "I can"... so for all the 'deficits that they say Josh has, he's the one teaching me the power of will, the power of words, the power of God and the reality that with hard work, maybe hope isn't all lost yet. If Josh 'can' and if God 'can' then who am I to say 'I can't'?

Matthew 19:26

I have loved in this life more fully than I thought possible, I have two awesome parents, an amazing husband and two great kids, not to mention the blessings of a sister, friends and pretty great in-laws... what right do I have to more? Should I keep pressing God for more and more when he's already blessed me with so much? What right do I have to cry out and beg for more? The problem is that in my heart I have to believe that Josh should get a break sometime... he's just a kid you know? Why should he have to suffer so much, why does everything have to come at such a struggle for him? Why is everything for him more work, more pain, more suffering just to do what other kids do naturally? It's not that I am angry, nor do I feel he got ripped off in anyway, it's just that as his Mum I wanted more for him, I want to help him, I want others to see the beautiful child that I see and I want them to see the amazing brain that lies inside that cute little head... No, I am not angry, just very sad today.

Josh and I went for the much anticipated speech assessment today(this following a bad physio appointment last week) and though I won't get into the science and politics of it all I will say that there is not a lot of hope for him. They can't help him, she doubts anyone really can. This, from a specialists mouth breaks my heart. Yes, he may improve but there will always be a problem with his language, he will always struggle with saying and understanding things. In all probability it will always be a learning disability for him and affect his schooling, he may well always struggle to understand things or be able to articulate his thoughts... blah blah blah. You get the idea.

This, she said, is the long term results of the stroke, and when I asked if it would heal she said simply 'No'.  We still have one or two hopes left as far as help and I will be following up with them this week, one  of course will be to find a language therapist who specializes in brain injuries, my hope and prayer is that we are lead to the right one and that we can get some more answers. The second, the one that could really do wonders for Josh is a school that is actually in Bloorview Rehab hospital. There he would receive all the various therapies he needs (PT, OT, and it has a whole communications section). This is what you can pray for, that we get into that school regardless of how hard they say it is to get him in. Pray that God kicks the doors open for him.

Life isn't supposed to be easy, I know that. I have seen it in the lives of every single person that I know. Life is hard, it's painful and unfair and for all the good times there are an equal (sometimes more) amount of painful times. I know we have miracles heaped on miracles for Josh and the fact that he is here at all is something I should just say 'thank you' to God for, but the reality is I can't seem to stop myself for asking for more. Am I an ungrateful wretch? I feel it.

The bigger question lies in this... what if this lady is right, what if he is the way he is and is never healed? What if this is Josh's life? What if God doesn't heal him? Will I still be able to lift my hands at the end and praise God. I hope so, I believe so, but I would be lying to you if I didn't say that this is coming at a cost, and the fact that my son is paying only makes it harder to stomach. Will I love Josh less? No... I will likely just love him all that much more. Is he still my hero? Yes, the strongest one I know. Will I ever stop praying and hoping for healing... I am afraid the answer is no. I just can't settle with that and maybe that makes me an ungrateful, greedy soul... I just don't know.

What I do know... without doubt is that when Josh was still in my womb God spoke these words to me...


"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go" Joshua 1:9

and this

^"Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Matthew 19:26

Aslan

The past week Tim and I and the boys have been watching the Narnia series as a family, at first I was afraid that the boys would be scared, but quickly I learned that they are much braver than I would have been as a child, than I am even now sometimes. Kaleb in particular is in love with Aslan, and was particularly astute when Aslan sacrificed himself for the sins of Edmond. Quickly Aslan has become the hero, the one that Kaleb waits for, the one that he knows will come and save them and get them safely home. Today during quiet time we watched the Voyage of the Dawn Treader and at the end when Aslan comes to save the day and the evil is defeated He yelled out "YEAH" and clapped his hands, clearly excited to see Aslan again didn't fail them. At the end, when they are standing on the edge of Aslan's land Lucy asks him if she will see him again and he says that yes, and that she was brought to Narnia to learn about him, so that in her own world where he has a different name she will learn to know him. I was struck by that, I was touched by the way that our kids too will one day learn about God through the stories of their new hero Aslan. Kaleb has a toy lion, and he has been carrying that Lion around all week claiming him to be Aslan. Is it too young to introduce C.S. Lewis and the Chronicles of Narnia to two little boys? There are certainly scary bits but for these boys at least the scary bits were met with cuddles and assurances that Aslan would in the end reign victorious. Then, when indeed he did defeat whatever evil faced Narnia at the time the boys were thrilled. I still can't tell you if it's too young to share these stories with the boys but I will tell you this, and I have thought this through. The stories we tell our kids about God, the story of Noah and the arc, the story of Jesus and his courageous sacrifice on the cross, were stories of horrible suffering, scary truths and always victorious endings. Is it too young to introduce these two young ones to the truth of God's love? That love couldn't be real without the pain and the suffering that happened on the cross, just as Aslans' love couldn't be real with his sacrifice for Edmond, the blood of the traitor on that rock. His victory secured in the life that was breathed back into him. We ourselves live in Narnia, fighting battles and waiting for Aslan to come and rescue us. Is this the perfect time to start with the truth of that sacrifice, the truth of the love and the certain victory that we have secured if only we seek Him and wait for Him? I think so. Like Lucy, I await Aslan and continue to seek him and long to see him.

WOW

This past week, with a few days still remaining, our family has enjoyed holiday time. Time that for many reasons has been much needed and though I am still battling bronchitis it's been restful. We went to Great Wolf Lodge, and Niagara Falls, the Royal Winter fair and we have made tons of time for 'family' time between the boys school schedules. I have had alone time (wow?!) and Tim has managed to get in a movie, a golf game and tonight he's off to see the Bills play. Josh, who is (as I write, getting his MRI done) is once again my main reason for writing this post.

The last you heard from me the doctors were putting him on some new meds that they were hoping would buy us more time before the next surgery. She said that we would notice a change within ten days and that if we didn't notice a change that we should stop the meds. I have been watching him (as you can imagine) intensely. Ten days past and still I watched, unable to trust myself or my eyes.

Josh is a different child these days. He's happier (if that's possible?), he's full of beans, he's chattier, he's able to walk to and from school, he wants to play, he fights going to bed, he is almost at par with Kaleb's energy levels. It has been a beautiful, fun, exciting thing to see this change emerge in Josh.

Our Cardiologist gave us enough meds to see us through the two weeks, and after a few days I went to the pharmacist and said that I thought it might work and asked him how long I had to wait before ordering more. He told me to come in a few days before we ran out to be sure because they had to special order it, so when we were getting close I went back to the pharmacy and asked him to order more but just smiled and said 'I was hopeful it would work so I already ordered you more' and he poured it out for me. He smiled and said that he hoped it would buy time and though I didn't say it, my heart was screaming 'it will!!'

That realization, the knowledge that this medicine may actually forstall the next surgery is a warm balm to my soul. The more I read about the advances in heart medicine the more excited I get about Josh's future and the more time we can get means the better the chances he has. Did you know that they have already grown a heart from human tissue, put it into a rat and the rat survived?! Next steps are clinical trials and then maybe one day in Joshua's lifetime they can really cure this thing!! How exciting is that?! A cure for CHD?? Amazing! God is awesome!

just a thought

Sometimes all it takes is a moment to realize how incredible our lives are, what gifts they are, and how special it is that we are here at all. There are things in this world that are ugly, there is needless suffering like this latest tragic super storm that has left devastation in her wake. There is pain, there is sickness and there is death and war and violent crime. However, once and a while if you stop and look there is also a really beauty. Sometimes beauty is hiding in the ashes, sometimes it's hanging by a limb, leaves that are dying for the season. Sometimes, it's those moments of beauty are what remind me that God isn't just a big guy out there in the distance, he's daily giving us little gifts, treats for the eyes, smiles from Him.

Have you ever thought about the seasons? Spring with it's crocus's poking their purple pedals through the snow, the tulips in every colour of the rainbow, the soft smell of a spring shower, the summer warmth that heats the bones, the beaches, with soft sand and cool shorelines, the autumn that eases the heat with it's cool chill, that brightens every tree with reds, yellows and oranges that shine so bright in the early morning sun. Then of course there is the winter, the snow that falls softly, landing on the fir trees and show a stark contrast between the dark green and pure white. No painter, no matter how good can recreate the reality of the seasons.  Just as he created each leaf unique and beautiful, each snow flake with it's own stunning design, each sunset a different array of colour and designs so too he created us, and how much more time and effort went into us?

I had a lot of time to think the other day, wandering around High Park in Toronto while scouting shooting locations and with every step, every new treat for my eyes I was reminded how much He loves me, how special He thinks I am, and How beautiful He thinks I am.

Just some random thoughts I wanted to share.

L