Heavenly Seven

Seven is such a lovely number.

Seven years of sharing organs for these two.

Seven years of side-hugs where a kidney brushes up to within 5cm of the spot that used to be its home. It’s not all bad for that kidney either. It gets to do things like cartwheel, somersault, skateboard, pogo stick, backflip and unicycle again. It used to do those things, in its younger years. In its other body. That bod doesn’t tend to move in those circles anymore, so if I had to guess, I’d say Tim’s old kidney is as happy with its new lease of life in Jesse’s body as Jesse is with it.

As I was pondering this Kidneyversary, I pulled out the drawing the transplant surgeon did of Tim’s old kidney recycled in Jesse in his “operation notes”. It’s a beautiful drawing. I have these grand plans to make a piece of art out of it but so far it sits in the filing cabinet undisturbed. I noticed for the first time Dr Lorenzo had added his cell number to the drawing. So sitting there, full of gratitude, I spontaneously texted him.

“This day 7 years ago your fine hands were used to grant us a miracle. Our family is remembering you today with gratitude. … So often you don’t get to see what happens. What you do matters. How you do it matters. And the kindness you showed as you explained complex things to fragile, fearful parents remains as an example still. Thank you.”

A second later, he responded.

“It’s words of encouragement like yours that keep us going through difficult times. Thank you. Can’t tell you how timely and inspiring your message has been.”

I don’t share it to puff myself up. I share it because we all have this power. To encourage with a timely word of affirmation. I’m not great at saying thank you. It’s a failing. It gets pushed to the bottom of the “to-do” list because somehow, wrongly, I see it as a “bonus”.  I am so happy I pushed ‘send’ on Saturday. When I received his response, chastened, I pushed a few more “sends”.

His German Nephrologist responded almost immediately too. “Wow, what a kind and generous note. Congratulations. I feel humbled and blessed. Thank you so much. I hope that one day we can celebrate Jesse’s success together.”

There’s a lot – a LOT – of people who have loved and prayed us through in ways that matter more than medicine. When I hear how you pray for Jesse, love us, egg us on, it so moves me. Thank you to all of you. Thank you for calling, popping in, sending notes, sharing his needs at your church, praying in your closet, thank you for loving us. It’s a tricky thing to make yourself and your needs known …. when I can be so dark and messy and my family’s needs, in relation to many throughout the world, minimal.

You have been so gracious with my tangled webs. So kind to Jesse. On this seventh anniversary, just so grateful to you all.

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A Divine Hemming

They say there are no aethiests in foxholes. And if you are Kim Parker, there is no non-writing in crisis. It helps me process. If I can make sense of it for you, I have found a way for me to think about it also. This means I can start talking to myself.

I could sit you down and make a case for talking to yourself, if you’d let me.

It has been a revelation learning the Bible says, contrary to Disney, we should NOT listen to our hearts. In all honesty, if I listened to my heart, I would have both abandoned my husband and my children long ago. I also would have pursued a career as a professional dancer and moved to Morocco. (There are very few big-boned dancers, and I’m guessing if there are, the epicentre for them is not Morocco.) It’s all the same level of crazy.

In contrast, the Bible says to not listen to your heart. It says to guard it. It says (and I know the truth of this in me), the heart is deceitful above all things.

So we are not meant to listen to ourselves. We are meant to talk to ourselves.

In fact, the language the New Testament writers use  is kind of violent. Paul says “I strike a blow to my body and make it my slave.” (1 Corinthians 9:27). He says he takes “every thought captive to make it obedient to Christ.” (2 Corinthians 10:5)

Those verses used to bother me enormously. With a little bit of real estate behind me, I know exactly what he’s talking about. Oh, do I! It’s nothing to do with putting intelligent reasoning aside. It’s about not being ruled by my emotions.

So this is why I write, so I know how to talk to myself, and not be ruled by emotion now:

Jesse has a 50 degree or more curvature of the spine. I’ll post a photo of it later, because I honestly don’t want to have to look at it while I’m pecking this out.

I had a hard time today looking at the x-rays. With the kidney and the diabetes, there has always been something I could do. A little pill added here. A shot of insulin there. Diet. Water. Exercise. Not with this. I’m helpless.

The truth I speak to myself now is, I AM helpless. And I actually always have been. My life is a vapour. I no more control over when I’m born or when I die than I do over the weather. Neither do I control our son’s life or health.

My Heavenly Father does.

The thing so moving to me is that he spoke to me about all of this before we even had our appointment at the scoliosis clinic.

This morning, curled up in my secret place with a blanket, a coffee, and Him, for whatever reason (the same reason it rains), I read Psalm 139. It’s the classic “new baby”, pro-life Psalm. You send this Psalm to women soon to give birth and people needing encouragement. The key point is there’s no place God can’t find you and keep you.

I kept coming back to verse 5. “You hem me in, behind and before, and you lay your hand upon me.”

I read it a few times. Read it in different versions. Looked up referencing verses, tried to find the kernel in it that was intriguing me.

I associate the “laying on of hands” with praying for someone; with showing someone by my touch that I see them and hear their heart. Putting my hand on someone is both an act of faith and an act of compassion. For me.

I texted the verse to a friend thinking it would encourage her. Thinking the Lord gave it to me for her. There were no dots connecting for me.

However, as we drove away from the hospital, having heard about surgery and spine-straightening steel rods and new technology that would allow them to lengthen the rods electronically, bit by bit from outside, I remembered the verse. Remembered the hemming in.

Prayerfully, Tim and I have said no to a brace. The cost-benefit ratio was too high. Jesse could have a back brace 24/7 for the next 6 years and still have a 70% chance of needing surgery anyway. He is blind in one eye, has an insulin pump, and daily, does his blood sugars 4 times; takes a growth hormone by needle and throws back some 12-14 pills. We feel he has enough “different” to deal with.

A “brace” is something that holds parts together or in place; it is to fix firmly; make steady; secure. To “hem in” is to enclose or confine; to surround in a restrictive manner.

The connection made me gasp. And this, this, friends, is what I will speak to myself whenever I am tempted to fear what is frightening: God will hem Jesse in, behind and before; He will be his brace, holding him steady, confined, safe. And He will lay HIS hand upon Jesse in both compassion and for healing.

He is able. He knit Jesse together in my womb. All the days ordained for Jesse were written in his book before one of them came to be.

Call me whatever you want. Naive, foolish, ignorant. I find in myself none of these things. I will pray for our son every single day. And I will speak these words as I pray. And I will glorify this beautiful, kind, thoughtful God when He answers.

Starting with right now. He is awesome. And my peace is great.

So, I should add, is Jesse’s. I told him this verse as we drove home and said “We will pray. God can lay his hand on you and heal your back Jesse.” And he said “Well, I’d sure like that better than the other option.”

Then he laughed.

 

 

 

 

 

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Thankful for broken-made-whole

We are home! We have 7 medals, and 65 bags of laundry, a broken washing machine, and all of it is good.

Our kids are tired and bickering and recovering, and honestly, that’s OK. They survived so well (for cats). They had 2 weeks of late nights, one at Joy Camp, one at the Transplant Games, and 2 weeks of wonder-filled days. We got home at 2.30am on Saturday night, but of course (or is that “curse”?), the two smallest were still up at 7.30 racing for the iPad the next morning.

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Either way, we made it to church on Sunday for the first time in a few weeks and it was so great.  I mean, from the first song, I was in the throne-room. There’s a guy who has a simple view on life and lives to love others, and he’s my yardstick for the spiritual temperature in the building. When he’s fist-pumping in sheer joy – and always, always, he’s moved at the right moments – I know I’m not the only one who senses God’s presence. Honestly, I figure if the God who made the Universe is present, you should know it. Right?

One of the songs was called “For all You’ve Done” – “Though I’m broken I’m made whole, You are my Saviour. For all You’ve done and yet to do, I worship You. For every step, You brought me through, I worship You …

This Sunday was the very first Sunday Jesse had graduated out of Sunday school and into youth group, and was sitting next to me during the service. All my prayers and thanksgiving for him were in that song: there was this very real sense that though he was broken, God will make him whole in the only way that really counts. A whole and healed heart.

We saw a lot of broken bodies this last week. There was a lot of broken-made-whole in the physical sense. I loved seeing that. I got a picture of Jesse and his lovely friend Felix with two Mexicans who came up for the games. They all had matching scars.

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The day of the swimming competition was almost my favourite. All those battle scars. Each one etched in pain, but no one was covering up.

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They were all so beautiful to me. The jagged cuts down the heart-chests. The liver-lines directly across the top of the tummy. The neck-vein needle remains. The crescent-moon kidney cuts. Each one a hallelujah for a donor and a country with free health care.

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However, I was wishing so badly they could also be the twice-gifted. Gifted once with a donated organ that saves their life, gifted a second time with all sins and hurts forgiven through Jesus who saves for eternal life. It’s not a flippant wish. Do you know how freeing it is to live forgiven, forgiving, without any missing pieces in your heart? Without any nagging sense of something lacking?

For all God has done, and is yet to do – I worship. It’s all good. I’m sorry for none of it.

I don’t believe Jesse will be either.

 


Herding Cats without mascara

I think they should have warnings for women here: “Do not wear mascara” 
That makes two days running I’ve cried it all off. Yesterday we went to a family picnic at the Toronto Island and they had a ceremony to thank the siblings of transplanted kids. Some were so moving. Older kids telling their younger brothers and sisters they know their numerous hospital visits can make life boring sometimes, but that their company has meant everything. Others, like a guy I know, spoke a mere 10 words. I’m sure our girls will remember it forever: “sisters, I love you, but you’re pains in the butt.”


I can only imagine how you are wiping your own mascara off right now too. 


Today Jesse went in a 1km running race. His two sisters wanted to run alongside him. 


If I left it there it would be a lovely picture. But what really happened next was that Molly ditched Jesse because she saw other kids were passing them. Molly likes to be in front. In fact in Molly’s ideal world, Molly would be both blowing the whistle to start the race AND out in front running in it. 


I cried laughing then. A few moments later I cried goosebumps meeting extended family of parents, aunts, uncles and cousins who came all the way from Ottawa to watch their 21 year old son’s heart race 5km – six months ago it found a new home in a 42 year old man. 


There’s another family who, on the anniversary of their son’s transplant, spend the day going around their town telling their story and encouraging others to register for organ donation. So far, they have collected 1,300 registrations. 

I love it. It’s not like they are asking people for money. They are simply saying – go green. When you die, recycle yourself. 

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We met another family of believers with five kids. Two of the kids have needed transplants – kidney and liver – for completely separate reasons. And the father donated to both. He told me having given part of himself to keep his children alive, he feels deeply the love of the Father who donated his son to save HIS life. 

So I wear my mascara, knowing I’m going to waste it, but with worthy tears. 

I cheer my kids with all my heart but let’s be honest, mothering is not all pretty. Especially without backup. Tim is home working to pay for all this while we are busy making medals. I find I’m crying with pride one minute then fuming with exasperation the next. There’s an animal that eats its young. I was feeling a connection as we spent an hour looking for Molly who rode away from us on Toronto Island because she “knew where to go”; then another hour looking for Jesse’s bike helmet because he forgot where he put it; and by the time we realized he’d also forgotten his shirt, I was ready to sacrifice it. 

It’s the first time in a long time I’ve felt outnumbered. They are going on almost three weeks with too-little sleep from camping, trailer-ing and games-ing. It means I’m herding cats right now and some moments I’m not sure I’ll get them all back to the homestead in one piece. 

Grace is my mantra – I’ve received so much. Like the Dad who donated his organs and felt weight of the gift of God, I feel the weight and the freedom of my accepted grace. Some days it just takes more coffee and deep breathing than others to live it out. 

(A little catnip might not go astray either.)

Canadian Summer Transplant Games

You’re envious, right?

That’s what we’re going for.

Chosen by God to be one of the few who get to participate in some intense sporting competition – with team uniforms, opening ceremonies, medals and everything – that’s a privilege. There’s no disaster or tragedy here.

This, these Transplant Games, they are a blessing. That Jesse gets to take part, an honour. 

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That’s the kind of realization we’re hoping to seed with a hundred conversations and a thousand wonderful moments. Together, they will build a young man’s confidence in himself and the journey God has him on. It’s not everyone’s journey but that’s OK. Everyone has different fabulouness and difficulties. Everyone. This life? It’s yours. And look how wonderful it is!

It certainly helps the argument when you have a day like today.

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Jesse was up for the 5 km bike race first thing. I was a bit wobbly when we pulled out his mountain bike – seaweed still stuck to all the spokes from when he rode it into the lake at Rondeau two weeks ago. All this professional equipment and outfits and there we are in our second-hand shorts and a bike that’s never had so much as an oil change.

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But Jesse? Grinned like a Cheshire Cat as we counted him down (it was a timed race and they let them go one a minute), then a little swagger and he was gone.

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Then back. Really happy….. So for fun, while he was waiting, he did the course another three times. Lucky the Tim Parker Kidney is totally up for  such foolishness.

An hour later we learned he was second in his age group. Which – you know, in Olympic parlance, means a silver medal!

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And after watching the Olympics in the hotel lounge each night, Jesse knew exactly what you do when you get a silver medal around your neck: you bite it. Obviously.

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To celebrate, he and the Mollster did some burn outs in the Nathan Phillips Square fountains afterwards.

Who wouldn’t?

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Amd then because he has birthday money burning a hole in his pocket, he folded the $10 bill up really small figuring the vending machine would work out it was $9 more than the $1 coins usually deposited there. Strangely, the machine was stumped by the maths.

A great day. Some heaven-headed new friends. Our God is so good. I’ve got eyes to see and it just staggers me. We’re slowly but deliberately building a picture and some memories so one day soonish, Jesse sees it too.

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Six Years!

Just when I think there’s a used-by-date for remembering old wars, along comes a invitation to a celebration.

How could we not have a kidney cake and get Tim’s body and Jesse’s kidney in a photo together? Six years! So long ago! Maybe past celebration? But such a short time ago!

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No one likes their scars – though we marvel as we encourage to Jesse run and play in the sun without a t-shirt,  the 15cm scar up the side of his belly shining like a medal. I have to wonder though, if old soldiers are secretly glad of their special membership in the gruesome club that allows them the occasional front-row honours.

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It’s our prideful nature, probably. Or maybe it’s just mine: I would never, EVER go back by choice. But when I see the light hit the dark spot in just a certain way, it dances with a beauty that has me so thankful I have it in my life. And that’s weird.

It’s weird I like the depth it gave me. It’s weird I like the hope I still have from it. Its weird it weathered our marriage in a shared and secret way I appreciate. Most of all, I love how Jesus was in it all. How he still is in it all.

A slow miracle is still a miracle. The other weird thing is that having seen a slow miracle, I know what to look for. I see Sacred Hands all over the place.

Jesse has just finished his first year in the Arrowsmith School Program at the St Thomas Community Christian School. That was a Sacred Hand too. The Arrowsmith School was started by a woman who developed exercises to heal her own substantial learning disabilities over 30 years ago, and last year, for random – or sacred – reasons, the local Christian School decided to open the program in their halls. (Don’t tell anyone at the school, but I honestly think the Lord brought it to this little two-bit town for Jesse.)

When we read Barbara Arrowsmith Young’s book at Book Club, and Jesse’s Arrowsmith teacher demonstrated a few of the exercises and showed the expected results, the girls called it “black magic”. I prefer to call it Answered Prayer.

Cognitive processing speed for Jesse had been so stymied. We knew the wheels were turning, but the process for getting it out on paper, especially, was agonizingly long. Even by the end of grade 4, he pressed so hard on the pencil. The letters were always so large and inconsistently shaped, and would run off the end of the page. A daily journal entry for him, at age 9, would consist of one basic, barely-there sentence, after more than 20 minutes effort. It was painful to watch him do it. Like the angst of listening to an intelligent person stutter.

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What is instantaneous for me, is a 5-step ordeal for him. First he has to think of the words he wants to say. Then he has to keep those rolling around his tongue and remember them while he next actively reminds himself how to spell the first word and then move from there to telling his hand how you write the first letter of that first word … by which time he has forgotten what word he wanted to write to begin with. It hurt his heart as much as it hurt his school marks.

He could verbally tell you almost everything the teacher had said, and hit most main points in everything he read, but getting it out ….. pulling teeth. Unfortunately, teachers can’t mark and schools can’t grade unless you can get it out. And if what you manage to get out is sub-standard, well, you can guess the marks. And the discouragement that came with every single one.

We are not parents who need A’s or 70’s or a gold star. What we need is for our child to learn. To delight in learning and along the way, have some wins. What happened, instead, was compensations: the goal posts were moved lower and lower until even the 10 year old knew they were barely off the ground and he had to be stupid to not be able to kick over them.

What Arrowsmith believes is that “compensations” never healed any damaged muscle. Especially not the brain. You don’t do a billion sit-ups hoping it will help your damaged biceps. You do bicep curls with progressively heavier weights. That’s what Arrowsmith does for the brain. Through days-long individual testing, it zeroes in on the specific areas of the brain that are weak in students like Jesse, then gives them specifically designed, progressively complicated exercises to either strengthen the damaged or blocked neural pathway or helps develop new pathways around the blockage.

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So that’s the theory. And for all our research, it sounded solid. So after much heartache, we jumped from the public school system. It has been one of the best decisions we have made. Though not for immediately obvious reasons. What we have seen in Jesse this year was not a gradual progression from D’s to B’s. Instead, what we saw: a new argumentativeness.

We saw witticisms develop that had our eyes widen. We saw a boy start to verbalize his opinions, and sometimes, God forbid, those opinions were not the same as mine. We saw this guy present himself who could tell a joke, pounce on someone else’s dumb move with an easy banter, and find the words to present his own reasoning. In the process, we learned the boy we always thought was so accepting and compliant was really only compliant and accepting because he couldn’t process his thoughts quick enough to verbalize his opposition.

When he argues now, and I call Tim, flummoxed and only just annoyed, Tim laughs and reminds me “Kim, we prayed so long for this! That’s awesome!”

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He’s still his lovely kind self – I received a few treasured emails from his new Principal telling me occasions when Jesse demonstrated a thoughtfulness that betrayed a generous heart beneath. But he’s himself. Unhindered and uncensored by an uncooperative brain. And happier to go to school than he has been in a long, long time. Luckily the unique twist he has on the world remains: last week he asked “Mum, is bacon a fruit?”

My heart aches for all the kids out there in the public school system who will grow up thinking they are stupid. When they are not. We may have more future cancer-fighting scientists than we ever thought possible in our midst. I’d hate to miss even one of them because of a shallow view of their potential. Wouldn’t you? With all my heart I believe these cutting-edge brain-strengthening exercises will eventually be in every school system. As they should be. In the meantime, we will champion it with everyone we meet.

Next month, Jess competes in his first Canadian Summer Transplant Games in Toronto. He’s not sure if he’ll do the 1km swim, but he’s keen on the 1km and 5 km bike race, and the family soccer game on Toronto Island sounds fairly attractive also.

He’s a pretty determined guy, with his own lovely view of the world. Thanks to his Dad, his school and the Sacred Hands of his loving God, he may be a cancer-fighting scientist one day. Or not. What we are most thankful for – he has a pretty good shot of being whatever he sets his mind to.

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My Post Secret

Getting my hair cut this week I picked up a book. (So perhaps I am finally of age to be honest about this: there was very little cutting going on. I was getting my grey hair coloured so it matches the age of my heart. Yes. Around 25.) The book was called Post Secret. It’s a horrifying, heart-breaking, beautiful, disturbing series of pictures of post cards that people have anonymously mailed in – with their secrets on one side.

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It was one of the most addictive things I have ever picked up. The hearts of others, right there, bleeding on every page. I wanted to take every one of those hearts home and fix them up with a warm bed, some fresh cake, big hugs and a lot of understanding tears. Not necessarily in that order. I wanted to keep going until I found one that lived happily ever after. Or an Alumni who tells their story ended well.

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Later, as my friend the Grey-Disguiser and I spoke of lost lives, I could finally get out what the book had unsettled in me: I have a secret too.

It’s not dark and hurting. And the reason it made me cry to confess it is that so many people go their entire lives without ever finding it. And I’ve got it, but I keep it secret.

It’s this:

I have discovered the key to internal peace, complete fulfillment, and deep joy.

I’ve tested it and proven it to myself for over 20 years now.

But I’m scared you’ll think I’m arrogant.

So I don’t share it much.

(His name is Jesus)