I am FLOORED... Awed and left humbled.

Ever since Josh turned one years old we have been struggling through the process of stroke repair, (his stroke happened at 3 months of age) language development and endless hours of therapy... it's been a struggle, a discouraging endless struggle. I have seen countless doctors, therapists and spent hours on the phone getting assessments and support. We fought every step of the way, we had to learn patience, we had to accept help, we had to battle the discouragement...

Last October Josh was diagnosed with epilepsy (resulting from the stroke) and he was given medication to prevent the seizures...

This year is his final year at Bloorview and at the start of the transition process I asked if we could get another psych assessment done because the medical situation was different (i.e., the seizures were being kept under control and he was finally - for the most part sleeping most nights). I wanted to know if those things would change his overall outcome.

All along this process we have been told that Josh would always have a language impairment, that he would likely always have a learning disability, and that we would have supports in place for him as he needed them. In other words we were told 'to get used to it, this would be his life'.

Today I got a brief overview from the phycologist who did the new assessment on Josh.

She said that the results were so dramatically different (from his assessment last year - just one year) that she had to score it twice thinking she had made a mistake... TWICE! His cognitive abilities (verbal and visual) have gone from seriously impaired to AVERAGE for his age!!! Let me repeat... VERBAL SKILLS ARE AVERAGE!!!! This is HUGE!! HUGE! I can't stress this enough!! We have been told all along that he would have a learning disability his whole life... yet they now say that they can't classify him as an LD because it's just not 'bad enough' and they feel that he may well be in 'catch up' mode. They want to re-evaluate in grade 3 to be sure but feel that given his current rate of advancement it's entirely possible that with some help he can catch up without issues. That with all the school missed, with the seizures, and the other medical situations it could explain why he's behind and they feel that with added help he can catch up no problem.

I AM FREAKING OUT!!!! How awesome is God!?! This is such a HUGE answer to years of prayer... I don't even know how to articulate myself properly! When I think of all the little details that had to fall into place for all the different supports we have had... the help from the Bishops company to get him therapy, and the special pre-school, the acceptance to Bloorview, even the epilepsy diagnosis that seemed so disheartening at the time... How can I not sit and praise God for every thing that has gotten us to this point? How can I not feel humbled...

That's it... just had to write to tell you all (who have faithfully followed and prayed) how incredible God is, how amazing my son is, and how proud I am of him, and ... well... just to share this awesome answer to literally years of prayers!

not always a Hallmark card

Mothers day brings so many emotions to the table... it can be a joyous day but it can also be a day filled with bitter disappointment, hurt, searing pain and grief. Mothers day is not always the pretty Hallmark holiday that is plastered on every card or shown for weeks on Facebook videos.

I think of the mothers who lost their children, the mothers who miscarried, the mothers whose child died before they got a chance to take a first breath. I think of the sons and daughters who lost their mothers, who grieve what is now a memory. I think of the men and women whose mothers failed them and hurt them. I think of the women who want nothing more than to be mothers but struggle with infertility or haven't yet met someone to share that journey with. I think of all these things and while I celebrate my own mother and my own sons I ache for each of these as well.

This year, acknowledge the pain that often lies in the hearts of the women you greet today. See the struggle in their eyes, show compassion. Hug the women in your life who you know have loved and lost, who dreamed but didn't conceive, who hoped but didn't hold their child, who have known the pain that comes from a broken mother of her own. Hold them, acknowledge them, stand beside them and grieve with them.

Mothers day isn't all tulips and sunshine...

Decade 4

Tonight is the last night of my thirties...

The last decade has been absolutely amazing... I remember when I turned 30, I was living in Austria and I didn't know it then but my life was about to take a 180. It was a tumultuous turn, a hard turn, a scary turn, but when I look back on that turn now and see where that new road lead me I can say with total assurance that it was the best thing that ever happened to me. I returned home to Canada shortly within 6 months of my thirtieth birthday, not so much on a chariot of triumph either. It was a leap of faith for sure, but it felt like a let down at the same time. I had never intended to come back to Canada.

Funny how we plan one way and it turns out totally different. I have learned that nothing is set in stone and I am totally okay with that because I have also learned that my plans aren't nearly as great as the plans God has for me.

My thirties brought me Tim,  then the boys and together they were the greatest blessings I have had in life. These men have taught me so much about myself and God; they have taught me about faith, commitment, relationship, forgiveness, mercy, peace, joy and laughter. They have, together, made me a better person, and together they have shown me that the value of the cross lies in the death of our old selves and the birth of our new creation. It has been an exciting ten years.

Saying all that, one would think it would be hard to let go of my best years of life so far... but I have learned a few things that make this next step an even more exciting time. Turning 40 is an absolute joy. I am so excited about what lies ahead! Gone is the girl who didn't know who she was, the girl who was self conscious and cared too much about what others thought of her. In her place I have discovered a woman who knows who she is. Life hasn't turned out how I thought it would when I was in my twenties... but as it happens... that is a great thing! Age is not something to be ashamed of, age is wisdom, it's experience, it's self confidence and peace and beauty and joy and restoration and maturity. Age brings lines and greys and roundness... but all of that is just the outer shell of the person inside; the woman who looks in the mirror and sees in her mind the good times that brought the laughter that gave her the lines, the tears and stress and the tough lessons that brought those greys out of hiding, the roundness that came from enjoying meals with her family and date nights with her best friend and partner in life.  I look at my Mom and I see that all of this is truth. Beauty isn't what's outside, it's not what size you wear or cup size you are, it's not in the curliness or straightness of your hair, it's not the clothes you wear or the shape of the hips that you squeeze into those jeans... it's who you are. It's the compassion you show, the kindness you give, the wisdom you have shared, the peace you bring, it's the way you tackle life or the way you stand back up when you fall, it's the way you share and respect those around you and it's the way you love. As an aging woman I strive for those things, and if I get a bit round or grey ... I am okay with that. (Though I will probably buy some dye for a bit... Im still vain enough for that). :)

For the women I know who have gone before me, who are now sitting where I hope to one day be. Thank you for your wisdom. Thank you for being leaders in how we as women should view ourselves, thank you for the comfort and hope you have offered and for the beauty that shines through you.

For those younger... don't let it take 40 years to learn these lessons. Embrace it now. God made you exactly as you are, and you are beautiful. It's not new but I will say it again, beauty fades but character lasts. Put the added effort into your inner beauty that you put into your outer beauty and it will never fade.

a beautiful melody

We are on the flip side. That is a beautiful place to be. No more waiting, no more wondering, no more anxiety... just peaceful restoration. It has been a beautiful journey really, in an odd way. The love we as a family felt through out this process has been unprecedented. My email and texts notifications were continuous through out the entire process, reminding me of prayers being sent up from all over the world. Friends and strangers a like have gathered us up and held us before God and we have felt the arms of love and support surrounding us. We have witnessed the amazing capabilities of modern science, we can see first hand where research is taking us and it's surreal and awesome. We knew fear and anxiety before the this started, Josh expressed the fear of dying after his pre-op appointment and the response was an out pouring of red shirts, shoes, hats and ribbons at church on Sunday morning and flooding Facebook in the days leading up to the surgery. I can't tell you what that does to a person, to see an ocean of red before you, person after person walking past you to go to the communion rail, all red. Josh and I sat together and watched in awe, tears were streaming down my face as the power of that support sunk in. The smile on his face brought us both peace and gave him the strength and courage that he needed.

On Tuesday when we got to the hospital the surgeon explained that there was a very real possibility that the valve wouldn't fit inside the remaining valve (the melody valve sits inside the old valve) and that we may need to have a special company come in to custom make a valve for him but it would take a few weeks. I can't explain why (other than God whispering to me)... but I told the doctor 'this might seem crazy to you but we are so covered in prayer today that I want to try'. So he did. The first words out of the doctors mouth when he came back to us after the surgery were 'well, it looks like those prayers worked'. The old valve was much narrower than they had anticipated and the new melody valve fit beautifully with no leaks. There was a complication with a scratched vein that caused a dissection and the blood vessel and the vein fused together. We were told it could require another surgery and we were sent to have an MRA (similar to an MRI). In the end they feel that the vein isn't as bad as they had originally thought and it should heal itself (it will require follow up at some point soon).

The melody valve in place

The damaged vein

The awesome cath. surgeon

Josh was in great spirits, he had a few moments of panic (right before they put him to sleep - I was allowed to be there until he fell asleep - he fought the mask and said he wasn't ready yet but I prayed for him and sang him a song and he drifted off. He also panicked in the MRA machine but again he rebounded and showed off his brave to the doctors and there was no need for sedation.) When he came out of the MRA he was so proud of himself and phoned his Dad to tell him how brave he had been. It was pretty awesome to watch. At one point (the night of the surgery I think) he turned to me with a wicked little gleam in his eye and joked about having survived.

So, that is the breakdown of the last week. We were discharged at dinner time last night! He actually went to school today (with activity restrictions) because he decided there was more activities to do there and he was bored after being home for two weeks.

God has been, and is always good. We have been so humbled by your generosity and love through out this whole process and quite frankly there aren't enough words to say how deeply we appreciate your support.

Some pictures of our week:

Josh was thrilled with being able to 'moon' the entire hospital while he waited for the surgery to start

Kaper had a difficult time, worried about Josh, so he came daily for visits.

They played spaceship... until the bed broke :S

Josh's visual skills used to describe what happened to him

He even had a special visitor

At 6:00 on April 30th he was discharged!