Finishing strong

Today is the last day of summer. Tomorrow my "baby" starts full-day school. We have played hard this summer and although I know I'll appreciate the structure school gives us, I admit I grieved just a little on my run yesterday when I noticed how many leaves were crunching beneath my shoes.

We just got home from a wonderful five days in Black Butte, Oregon. It was just what our little family needed after having daddy away so much at camp this summer. You know how elite athletes do "two-a-day" workouts? Well, we were elite at hitting the pool twice a day. We swam and swam and swam some more. Throw in some bike-riding and in-town eating and we called it one good vacation.

Our house on the ranch is about a 10 minute bike ride to the pool, almost all downhill. So you can imagine how much fun the kids had riding in the trailer. "Pedal faster, Mom!" But their ticket was only one way. No kids allowed in the trailer on the way home ... those uphills are killer!

Leaving the house Thursday morning to head home, the kids called out all the way down the driveway, "Goodbye Black Butte! We love you! See you next year!"

I grew up going to Black Butte every summer and my heart smiles knowing my kids are beginning to fall in love with this place as I did so many years ago.

So. We are home now, our Teenage Mutant Ninja Turtles backpacks are bought and filled and we head tonight to Luke's open house at his new school. He is going to be going to Dad's school, the school where Rog has taught for 23 years. We absolutely love Shaw Road, our home school, but it simply comes down to the fact that there is no doubt Luke is going to be well taken care of at Dad's school. We adore his teacher, and she has taught almost as long at this school. She and Roger went to college together and she is a dear friend to us. I get that flip in my stomach thinking of Luke having such a wonderful teacher this year. She will be a fantastic help to us as we transition to this world of full-day school.

"Uncle Al" is Roger's teaching partner (also teaching at Woodland for 20+ years). Luke and Daddy will ride to school each morning and hang out for a little while in Rog and Allan's classroom. Pretty darn special.

This boy is ready. He has matured so much in the past six months, trying new things he never would have last summer and really gaining confidence in new situations. When he didn't bat an eye when I dropped him off at VBS in July, I knew we had turned a corner. I'm not naive to think we may never have his separation anxiety crop up again, but the improvement we've seen lately is encouraging to this mama's heart.

Academically and socially, I have no doubts he is ready for first grade. This is a kid who is reading chapter books and can rally the neighborhood kids in a matter of minutes.

Where I've been asking God for peace, however, is for the physical and emotional areas. I am nervous about how he will handle school from 8:25 to 2:45. That is a long day for any first grader, much less a first grader missing a ventricle. I am prepared for some major meltdowns the first few weeks. I just pray that God strengthens him and gives me wisdom and patience! Yes, it's perfectly fine with me if you would pray too :)

Here we go!

THE Talk

For as much as we've wrestled with the wheres, the hows, and whens to tell Luke about his heart defect, God made it very clear this past week it was time for the conversation to happen.

We have had such a good summer so far. A really good summer. Lots of swimming at the lake, playing with neighborhood friends, hanging out at daddy's camp, roasting marshmallows, VBS, and not a whole lot of cooking. If I were to give this summer a theme, I would have to call it the Summer of Swim. This is the first year Luke has shown motivation to learn to swim and be like some of his friends — life-jacket-less. And he is getting close! It's really clicking for him this summer and I love that he is loving the water.

All that to say, my friend Erica and I headed out to a local wading pool last week with our four plus two older boys (10 and 7) she was babysitting that day. This pool is only 1.5' deep but big enough the older kids could still play without getting bored.

One of the games the four boys came up with was a race game. Luke was hanging in there for a while, but I could tell he was getting frustrated that he could never win the race from one end of the pool to the other. My mama's heart was breaking but I also didn't want to jump in right away and "fix" the situation. My amazing, sensitive friend also noticed the dynamic and suggested the boys play "Marco Polo" instead, which they happily did.

As we were packing up later that afternoon, I asked Erica what she would do if she were in my shoes. For some reason, seeing Luke frustrated on this day was bothering me. Yes, I could tell him those boys were older and had been swimming longer, etc... but today that didn't feel like enough. I didn't want Luke confused as to why he could never win a race. I didn't want him to lose the desire to try. But was I really ready to sit him down and explain that he is different?

I left it alone that night, but God made it very clear the next day that it was time. Erica's son, Marcus, has had a wiggly tooth for a few weeks and on Thursday it finally fell out. She had sent me a picture and I showed it to Luke. "Do you notice anything different about your buddy?" I asked him. Luke has lots of friends who have lost teeth, and desperately wants to lose a tooth, but I was not prepared for his response. He burst into tears, sobbing that he was never going to lose a tooth and he was just a different boy and it was all because of his scar.

WHA?!

I pulled him into my arms and told him that what I had to tell him was very important and I needed him to hear me.

I don't remember word for word what I said, but I was praying so much that God would use my words to sink deep into Luke's heart. That he would hear TRUTH that Thursday afternoon.

I told him God made everyone unique. That no two people are the same.

Some people are short. Some are tall. Some have birth marks and some have scars.

I asked him if he thought God loved Marcus more because he lost his tooth first? He giggled.

I asked him what God cares about. Is it teeth, scars or the heart? He knew the answer.

I told him I understood what it feels like to want to fit in. Everybody wants to fit in and be like their friends, but what we have to remember is that God cares only about what's inside.

And then I told him that his heart is different than most of his friends'. It pumps differently, I told him, but that had nothing to do with who he was as a friend, a son, a student, or a big brother.

I'm not sure how much he'll take away from our conversation, but it did seem to me that a weight was lifted off his shoulders. He had obviously been thinking more about this than I realized and I'm so glad he was honest with me.

Later that night, Rog tucked Luke in and continued the conversation with the fact that God made Luke's heart so unique, out of a million people, his was the only heart like it. And that sure, he might not be able to swim as far or run as fast as other kids, but the fact that he was swimming and running at all was a true miracle. "Really, Dad? No one else has a heart like mine?" Dads are so good at making kids feel like superheroes.

I often feel so inadequate parenting a special child like Luke; maybe as a parent in general. All I can do is pray God takes my words and my intentions and shapes them to shape Luke's heart. I want him to feel like a superhero ... not because of how fast he is, but because he has Jesus in his heart.

And now we're off to swimming lessons. Because perseverance is so much more important than winning.

"I happy now"

In the past few months, we have had to start implementing some discipline techniques for our sweet daughter. Our sweet daughter who is finding her voice and using it to say "No!" at inopportune times ... like when I want her to say "Yes."

Fortunately — (for her and us) — putting her in time-out and sitting her on the step are working (for now).

We talk a lot in our family about happy hearts, the joy of the Lord, and shining brightly for Jesus. Both our children's names are derivatives of "light".

Luke = Bringer of truth and light
Laney = Bright light

I pray so often that our family would "shine among them like stars in the sky" (Philippians 2:15).  Not so that we would be elevated, or seen as the "perfect family", but so that God would be glorified through His work in us.

All that said, when we send Laney to the step, we tell her she can come off when she has a happy heart and is ready to obey. So she goes and after hardly any time at all, she jumps up, comes running, yelling, "I happy now!" And 95% of the time, she is ready to do what I've asked her to do. (Why is getting dressed such a downer for two year olds?! And I won't even start on getting in the car seat.)

Wow. If only the rest of us could change our attitudes so quickly. If only we were as quick to transition from frustration into joy. Another reason God tells us to be like the little children, right?

My segue is going to be clunky but it's happening anyway. I'm moving from Laney's happy heart to Luke's.

For the past month, the word "SURPRISE" has been on our fridge calendar, in bold letters on the June 25 square. Luke's guesses ranged from new temporary tattoos to a moped. He wasn't even close.

On late Tuesday afternoon, we snuck our bags in the back of the Odyssey, buckled him in and drove down to our neighborhood mailbox, where his "clue" was taped to the back.

He may have gotten a little excited when he figured it out ...

The envelope his "clue" came in said, "To Luke: For your outstanding work in kindergarten."

The next 45 minutes were hilarious and a memory Rog and I will treasure forever. Our boy is a gabber, but this was a whole new level. He couldn't stop talking or bouncing.

We checked in and spent very little time exploring ... it was Luke's agenda and his agenda was to hit the waterpark. To be honest, I was surprised with how brave my cautious boy was. The yellow slide (below) he rode first is pretty big ... one where you have to lie on your back and cross your arms and legs. He didn't even hesitate! He got to the bottom and raced back to do it again (and again).

Luke rode every slide except the Howling Tornado. 4" too short for that one. It was a blast. He loved it so much, especially the one where all three of us could go on together. We debated about bringing Laney, but I think it was the right choice to leave her to adventure with Nonna. She would have enjoyed the waterpark, but it was so special having one-on-one time with Luke.

It was getting close to 6pm, and we knew we had to get food in him, even though Luke wanted to stay in the waterpark longer. The grouchies hit as we were waiting for our food, but a little glow-in-the-dark putt-putt golf perked him right up.

After another waterpark session in the morning, it was time to head home and get our sweet girl and give her the pink wolf Luke "bought" for her.

In case you were worried about poor Laney missing out on our big Great Wolf Lodge adventure, rest assured:

Happy was her heart, too.

Sat check

I woke up really early on Wednesday. Early even for me, an earlybird. I tried to go back to sleep but after several futile minutes, decided to just start my run earlier than I planned. I went fast and hard and with each footfall, peace was shouldering out the high levels of anxiety I had woken with.

Luke's cardiology appointments always do this to me. How can a single machine that clips on a finger cause a person so much turmoil? Wednesday's appointment was a simple sat check, but of course that machine produces a number and that number can determine how Luke's heart is handling his "unique" circulation.

At the end of my run I texted a response to my friend who had asked how I was feeling, "This is what I know this morning: I trust God." I knew that whatever that number showed a couple hours later, I would need to hold tightly to that peace I felt post-run.

Luke's sats were 82-83% in the office Wednesday morning. I won't lie, I was hoping for a little higher, but I also have two days of perspective under my belt, so can see that the difference between an 83% and an 85% is very small in the scheme of things. It doesn't change the course of action, which continues to be the "watch and wait" approach.

Two days later, I also feel a little ashamed of myself. I have a SIX AND A HALF YEAR OLD who just soared through kindergarten and I was choosing to focus on a number I didn't like. I have a miracle boy who other doctors are watching because he is so much older than the typical single ventricle child to have yet had the Fontan. His left ventricle is super strong. He reads voraciously. He wrestles with his sister. And GOD KNOWS BETTER THAN ME when it's time for the Fontan.

We will check back in with Dr. Kim in September, for a full work-up, and most likely schedule a catheterization for the spring, to get an even closer look at this heart God created.

Thank you to those who follow our story, who pray for us and love our boy. He is one fantastic kid.

Hula-dancing graduate

Luke is only a kindergartner for 7 more days. As of June 18, he will officially be a first-grader, going to school full day.

If only he weren't such a sad kindergartener...

Don't get me wrong, he has had his share of tears this year, and his share of worries, especially at morning drop off. Watching him today, I cried my own tears. Tears of pride and gratitude at how far he's come ... not just this school year, but in his six short years. From a tiny baby who's heart could not sustain life to this vibrant, flourishing, graduating six-year-old.

My husband came to the graduation program this morning and texted me this afterward:

"I really love you! Sometimes the emotions are so huge I just can't breathe. What a miracle we have!"

Perfectly said. And exactly what I was feeling as I watched him hula and sing and be goofy with his friends.

Your faithfulness, O Lord, overwhelms me today. You have carried Luke thus far, loving him even more than we do, and we trust that You will carry him today on.

You wear your name well, Luke. You are a bringer of light into our lives.

 

You will rock first grade.

We love you.