Wednesday, December 11, 2013

Another biggie conversation

Thursdays are the craziest day of the week for our family. At the same time Luke and Roger are heading off to school, I take Laney down to her sitter's house so I can go into the World Vision office for the day. After school, my friend Erica picks up Luke and he hangs out with his buddy Marcus until the hubby picks him up around 4:45. At the same time, I'm picking up Laney and then finally we all converge at home for the night. Phew.

As soon as Laney and I walked in the door a few Thursdays ago, Rog told me Luke got a pass to spend his second recess in dad's classroom. The story unfolded that Luke told the recess duty that he just couldn't keep up with his friends today while they were all playing football. Mr. Chris, the duty, asked him if he wanted to go hang out with his dad for the remainder of the recess.

It was time for another sit-down conversation with Luke about his miracle heart.

The conversation went a little like this:

Luke: "I don't understand why I can't run as fast as my friends when we play football."

Dad: "Do you remember when we talked about how God made your heart? And how it's different than a lot of other kids' hearts?"

Mom: "Do you remember what a heart looks like? How it has four different sections that have different jobs?"

Luke, blowing us away: "Yeah. I know that I have this one (pointing to top right) and this one (pointing to top left) but I think I'm missing this one down here."

Mom: "Exactly. Those sections are called chambers. Most people have four chambers in their heart but you only have three. You are missing your right bottom chamber."

Luke: "But why does that make me not run as fast?"

We explained a little about oxygen levels, how your muscles need a lot of oxygen to move, and how his one ventricle has to work harder to pump because it's doing two jobs instead of one.

Dad: "Do you realize, Luke, that the fact that you are playing football at all at recess is a big deal? Your heart is superman strong for only having three chambers. Do you feel like you aren't keeping up during other times, like playing with your friends at home, or P.E.?"

This is where you can relax knowing his confidence is intact ...

Luke: "Oh, I totally keep up in P.E."

We explained that playing football at recess is harder because the field is so big and that you have to run a lot farther when you play outside. We told him he could find a different activity at recess, but he didn't love that idea since "all his friends play football". So we told him he'll just have to figure out a way he can play even if he's feeling like he's not running as fast or far. Or if he's not getting the ball. But ultimately, he's going to have to decide. As much as we'd like to, as much as we'd do anything we could to, we can't fix this problem for him and we definitely can't make it go away.

He asked, "Is it okay that I told the duty?"

Dad: "Yep. Mr. Chris already knows about your heart. All the adults at your school know about you."

"All of them? Does Miss Culver know? Mrs. Brumbaugh? Mrs. Miller?"

Dad: "Yep, they all know because when you were born and had your surgeries, Daddy had to take a lot of time off and so they knew about your heart. A lot of them even prayed for you."

Luke: "Do my friends know?"

Mom: "Not unless you tell them. That's going to be up to you."

Mom: "Do you know what jealousy means, Luke?"

Luke: "Yeah, like when you are sad because your friend has something and you want it too."

Mom: "There might be times when you feel a little jealous of your friends because they can run faster, but your job is to remember that God gave each of us different gifts. Not everyone can read as well as you, so maybe they feel a little jealous about that."

Dad: "I have three boys in my class, that just today, they struggled with an art project. Now they can catch a football really well, but art is really hard for them. You might feel bummed from time to time that your heart is different, but faith is trusting that God gave you this heart because he's got a big plan for you. You have to remember how many people have been blessed by your life already. And you're six!"

Luke: "Did Miss Culver come to the hospital to visit me? Mom, can I have more pizza?"

And that was pretty much the extent of the conversation. It was really good. I thank the Lord that He gave Luke a confident spirit so that he can see how many gifts he has been given. I pray that stays with him. I also pray so hard that he would never get to a point where discouragement causes him to stop trying.

Since then, we haven't heard any more rumblings about being discouraged at recess, and just yesterday, he came home filthy because he was playing football. So we keep pressing on, conversing with him as he leads.

Part of the above conversation also included talk about how karate might be a really good sport for Luke since it's not as much running as football. Luke has been begging to take karate for months, and this Tuesday was his first class:


I think he got a kick out of it.

So sorry :)

I hope this ends up being a good fit for him. He's a little bummed he's not playing basketball this year like he has the last two years. Maybe after the his next surgery we can revisit basketball, I don't know. For now, he's excited about karate so we'll see where that takes us. And we'll wait to see the unfolding of God's plan for our sweet boy.

Monday, September 30, 2013

Decisions, decisions

Clearly it's not Sophie's choice ... but every time I leave Luke's most recent cardiology appointment, I feel myself shouldering more of a burden for the decision of when to do the Fontan, his next open-heart surgery. It's a decision that has no perfect answer. When you are talking about putting your child through major, major surgery, it would be really, really nice for someone to tell you, "Here you go. Here is the perfect plan for an optimal outcome."

But that's not where we are. And I'm pretty sure that's by God's design. Because if you are given the full picture, why would you need Him? I am overwhelmed by this verse today:

"Now if any of you lacks wisdom, he should ask God, who gives to everyone generously without a rebuke, and it will be given to him." —James 1:5

If it read, "Now if any of you lacks wisdom, raise your hand", you would see me flailing my arm high in the air. We see so little of the picture and yet we want so much for Luke to be his healthiest. That is why I am overwhelmed with gratitude that God promises He will give us wisdom when we ask. I read and ask questions and make myself crazy trying to decide (in myself) when the time is right for Luke to have the Fontan. There are so many variables. Here is just a snapshot of the list that swirls through my head at times:

Pros:
  • Likely improved exercise tolerance
  • More normal oxygen saturations
  • Possible growth spurt
Cons:
  • It's open heart surgery, including time on bypass.
  • Open heart surgery can mean a long hospital recovery
  • Lots of kids experience emotional trauma and behavioral regressions that last for weeks/months post-surgery
  • Research is pointing to long-term linkage between the Fontan circulation and liver damage.
  • The Fontan could fail and need to be taken down.
  • One of Luke's diaphragms is plicated (surgically stitched down) because it was paralyzed during his first surgery. There is some data that shows Fontan hemodynamics are not optimal with a plicated diaphragm.

So, what do you do? Part of me thinks, if the Fontan can give Luke any benefit, isn't it worth it? But then another part of me thinks, Luke is doing well; he is thriving in school, and we aren't seeing any negative impact to 85% oxygen saturations... Do you fix something that's not broken?

I told another heart mom the other day that one of my biggest fears is that we move forward with the Fontan, see a big difference in Luke, then wish we would have done it sooner. She told me in a gentle, loving way that that was crazy talk. We can only make the best decision with the information we are given.

We walked out of our cardiology appointment Wednesday with no more clarity as to when Luke will have the Fontan. Of course, our prominent emotion was gratitude. His echo showed fantastic heart function and squeeze and no narrowing in the aorta, where Dr. Stefanelli ballooned it three years ago. Many kids after an angioplasty need another before they are old enough for a stent. Thankfully, Luke's aorta has stayed wide open. Also, his sats were back up from June to 85% ... and with a stuffy nose to boot! He had grown an inch and gained a pound and a half since six months prior, which is good growth for him. Overall, everything looked good. Really good.

Dr. Kim wants us to come back in four months for a sat check and then six months for another full work-up. There was not even discussion about an upcoming surgery date. It was a "keep on keepin' on" conversation.

I don't have the answers. Dr. Kim doesn't have all the answers. What we have is a boy who is doing exceptionally well with the unique heart he was given and a God whose promise I will cling to:

He knows the future and He will give us direction as we need it.

That will have to be enough. We will keep on keepin' on, eating donuts and playing Wii boxing like our lives depended on it.


video

Friday, September 20, 2013

"I really scared"

Well.

There He goes again, taking my worries and my "what-ifs" and throwing them out the window. How many times on this blog alone have I gone through the process of worry, pray, worry, wait, let go, take it back, worry some more, watch God do His thing, apologize for my lack of faith, and finally, thank God He is in control and not me.

I think this is why God tells his people to "Write these commandments that I’ve given you today on your hearts. Get them inside of you and then get them inside your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning to when you fall into bed at night. Tie them on your hands and foreheads as a reminder; inscribe them on the doorposts of your homes and on your city gates."

We have to know his words and promises to shorten the time between worry and trust. I'm not sure I'll ever be one to say, "Oh, I don't struggle with worry. Not even a little." But I do believe the more I recall God's faithfulness, the easier it will be to hurdle my anxiety and rest in His goodness.

In His goodness, He gently reminds me: 

"Do you not trust how much I love this child?"


My biggest worry heading into first grade was how Luke would transition to full-day school. I could never have imagined a transition so smooth. He has blown my socks off, even wanting to wait for the neighborhood bus to play with his friends as soon as we get home.

There have been no morning tears, no afternoon meltdowns (on Luke or his mama's part).

I have to interject on myself — I wrote that above sentence about one day too early. We had a major meltdown Wednesday after school. It was a doozy, but it was over quickly and he was ready to go again.

This is Luke's teacher, Ms. Culver. She exudes joy and love and is one of the most thoughtful people I know. She and my husband have taught together for over 20 years and my heart fills with joy when I think about Luke in her care each school day.


Here is Luke with Daddy, Ms. Culver and "Uncle Alan". Alan and Roger have team-taught for 23 years, with a retractable wall between them, open a majority of the time. Every year, these three super-teachers have taken a first day of school picture, and Luke got to join in this year.

How lucky is he?!


Lately, my little miss has been scared of her shadow, along with just about everything else. Any noise made she thinks is a monster and she needs two lamps on in her room to sleep. "I really, really scared, Mama."

You know what I tell her? It's exactly what God tells ME when I'm really, really scared: "I am with your always. I am bigger than your fears."

I so desire Laney to know deep in her heart that God's love casts out fear; that she can rest in His arms because He is faithful.

Even at two, we develop these fears that want to distract and distance us from God. If Satan can get us to focus on what we're afraid of, then we can't possibly focus on God. What an example Mary has been to me this week, especially as we gear up for Luke's cardiology appointment next Wednesday.

An angel comes to her (crazy in itself!) and tells her that she has been chosen to carry God's own son.

"But how?" she asks. Many of us wouldn't have even stuck around to ask this very logical question. But she asks and receives an answer from the angel that would terrify me:

"The Holy Spirit will come upon you,
    the power of the Highest hover over you;
Therefore, the child you bring to birth
    will be called Holy, Son of God."

What would this mean for Mary? Her and Joseph's reputation would be ruined. An unwed pregnant woman in those days could be stoned for her indiscretion. She would lose friends, family and eventually, her son.

Here is where her example blows my socks off. Without hesitation, she says yes. For her, the joy of obedience far outweighed the negative ripples that would come. The distance between her question of "how?" and her obedience was short. Mine is not that short, but I'm working on it and practicing trust this week as we near Luke's appointment.

I could dance around and around with all the possible outcomes of this appointment and still, where would that leave me? With aching feet and no more control than I started out with. God is so good to use my daughter's fear right now to speak to my heart. At (almost!) 35, I am having to learn the same lesson as her. And He is so gracious to be patient with me.

Tuesday, September 3, 2013

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!

Wednesday, August 7, 2013

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.

Tuesday, July 9, 2013

"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.




Friday, June 21, 2013

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.


Friday, June 7, 2013

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.

Sunday, May 19, 2013

What's in a Name, Part III*

My blog-world turned real-life friend, Angie, is down from Alaska right now at Seattle Children's hospital. Her five-year-old daughter, Natalie just had her Fontan Thursday morning. The girl is doing the really, really hard work of recovery and praise God, already moving to the floor later today.

Having gone through two open-heart surgeries with our son, I have an idea of what Angie and her family is going through right now. More of an idea than a lot of people.

But I can't know know.

It wasn't until after Luke's two surgeries in his first year that I entered bloggy land and started meeting moms and dads around the country who could relate to the emotions and fears I felt. Then I joined Mended Little Hearts and met even more moms and dads who got it. We connected on that "I get it" level. They knew what it was like to battle to get your kid to gain ounces. To be in the hospital day after day and just want to steal your baby out of there. We smiled at each other when we pulled out the Purell bottle at the same time.

Yes, they could relate. But even they couldn't know know.

I struggled with this for a long time. Feeling alone because no one "got it". Feeling resentful that even if I shared until I was blue in the face, my friends couldn't fully understand. I wanted them to and even, for a while, pulled back from friendships because they just couldn't. And I have wonderful friends. Friends who called and texted and brought meals and prayed and visited.

It took me coming up from air after Luke's intense first year and a half for God to get through to me with this most valuable, precious lesson. One that I cling to when those feelings of frustration bubble up:

"I have not missed one moment." 

When the thoughts roll in, "She has no idea", "He can't even imagine", God whispers, "I know."

There's actually a name for God in the Bible that portrays this aspect of His character. We often hear the term "omniscient" used to characterize God, which is true and good, but that word can make God seem far away, watching over everything and everyone from a distance.

That's why I've fallen in love with the name used by Hagar, in the midst of her despair as she runs away from Abraham and Sarah in Genesis 16:13. El Roi, the God who sees me.

Connecting with other heart families has been a tremendous gift in my life. The conversations are rich and encouraging. But if I am dependent on people to meet the need to be seen and know, I am going to be sorely disappointed. I can encourage Angie today as she sits with her daughter in the hospital. I can pray for her and Natalie and someday, I am going to be in her place, with Luke in the CICU. But I can't know every thought and emotion she's feeling or see every tear that falls.

What I pray most for her and me and all my heart family friends is that in those dark times of anguish, that we would fall into the truth that God is right there, never slumbering or looking away. How that's possible I have no idea, but I trust it. And I need it. We all have a God-given need to be known. God wouldn't give us that desire if He couldn't fill it.

Luke's neighbor friend asked me the other day why Luke sometimes wanted a piggy-back up our huge neighborhood hill. Luke is so typical in so many ways, he hadn't even remembered about Luke's heart defect. In traditional fashion, my first emotion was sadness that Luke is different and that even my neighbors have no clue as to the severity of his defect and history.

This blog post had been spinning around my brain for a while now, and God used it to bring me back to what's true. His knowing is enough.


*There actually is a Part I and II :)

Tuesday, May 14, 2013

23 months, 4 weeks

My email pinged with a notification from BabyCenter.com. It was the last newsletter of my baby's "babyhood". I have told Laney multiple times over the past weeks that she is, under no uncertain terms, not allowed to turn two.

She is being one disobedient little girl.

Because Friday is coming very fast. The girl can make me laugh, she can captivate me; she can jump and talk and run; she can make me crazy and she can bring overwhelming joy, but she can't stop time any more than I can.


So, with or without my approval, this girl is turning two on Friday.

She has brought our family such healing these past two years. She may never know the gift she is to our home, but I will spend her life trying to help her understand her worth.

In celebration of her, we put on a "Purple Party" for her Friday night (or, "Poo-poo party" in her words. I can't tell you how many times Luke would ask Laney to say that, then roll in laughter).

(I didn't laugh at all. I would never encourage potty humor.)




My sister, her husband, and their sweet little Pritchett flew up for the weekend, so Luke and Laney got some cousin time.



Poor guy.

And poor guys. The tiaras had to be worn:


Laney-bug, I can't believe you're two. Do you know how prayed for you were? And are? God handmade you to be the perfect completion of our family. You bring smiles to all three of us every single day.

When you say, "Ahhh, doggone it", we smile.

When you sing with abandon into your microphone, we smile.

When you ask me where Bubby is, even just a few minutes after we've dropped him off at school, I smile.


You are such a blend of shy and outgoing; complacent and feisty. I love that you don't let your Bubby walk all over you. Because he can be a boss! You have no trouble telling him no, or stop, or don't.

You are my little chatterbox, hardly stopping to take a breath most days. You love to know where everyone is, and what everyone is doing. "What are you doing, Daddy?" Your curiosity will serve you well!


You are my little morning buddy, running errands with me, getting Starbucks together, going to the gym or for a run. Next year, when Luke is in full-day school, we will have most of the day together. And just think, almost a full day of playing with your toys how you want to! I am so thankful for my work schedule that allows me to spend all that time with you. I know your school years will come quickly.

You are my flexible child. You transition well, and even though you would prefer to stay with mom or dad, you go with other caregivers really well. Maybe one or two tears at the beginning, but then you adjust quickly. You go willingly into the church and gym nurseries, and you absolutely love your two half days a week at Nonna's house. She has so much for you to do down there: Worm hunting, tea parties, gardening, painting, trampoline-jumping, and lots and lots of jewelry.


Every other Wednesday, you spend the morning with your friend Leighton, who is just 5 weeks younger than you. For the most part, you girls play great together and with her dark hair and your blond, you two are the cutest pair on the block.


I love that you love your sleep. You sleep 11-12 hours each night, taking a 1.5-2 hour nap each afternoon. Usually, you wake up singing, although lately, you are calling out, "Momma! I have to go pee-pee!" Yes, you are out of diapers. This was unplanned and completely shocking to me, but after you asked to go to the toilet a couple of times, I figured I better run with it. There are even a lot of mornings that your pull-up is dry from overnight.

In tops and bottoms, you wear a size 2T and I am guessing you weigh about 27 or 28 pounds. You still carry your baby fat and I am nowhere near ready for that to go away. I could eat you up my sweet daughter.

We couldn't love you more, Laney. Your heart is beautiful and I pray every day it would grow to love Jesus as your best friend. I think back to when I was pregnant with you. Whatever I pictured you to be was not even close to who you are.

Happy Birthday, Laney-bug.



Saturday, April 6, 2013

All for naught

Luke's 2nd trimester report card came home with him last week. It is broken down into multiple areas of assessment, and each area is rated from 1-4. The report card concludes with the teacher's comments.
"Luke is doing a great job in kindergarten. He can identify 18 of the 18 upper and lowercase letters and letter sounds that we have learned so far. He can segment and blend words and read high frequency words. Luke is on unit 20 of the kindergarten Read Well curriculum. The goal is for students to be on unit 20 by the end of the year. Since Luke has almost met that goal, he will begin working on the first grade reading curriculum after he passes unit 20.* He is making great progress!

His math skills are just as strong as his reading skills. He can count up to 20 objects with 1:1 correspondence, identify numbers to 20, count to at least 50, count backwards from 10, and order numbers from 1-10. He can also compare 2 sets of numbers by telling which number is more or less and he can solve addition and subtraction problems with manipulatives.

Luke writes his first name with a capital letter at the beginning and with lowercase letters for the rest of his name. He can draw a picture and write a sentence based on a prompt.** The students were given a spelling test in which they were asked to look at a picture and write the word that goes with the picture (for example, write the word "cat" under the picture of a cat). Luke spelled 6 of the 9 words correctly. On the 3 words his did not spell completely correct, he was able to write most of the correct letters in the word (for example, "tigr" for "tiger").

Luke is very aware of classroom rules and works very hard to follow the rules and directions. It can be upsetting to him when other students are not following the rules. Luke is often one of the first students to follow through with teacher directions.*** He will often encourage other students to follow the rules and directions as well. Luke is kind and friendly to all students in his class. He takes his time and does his best work. He typically does a wonderful job of working quietly and independently. I really enjoy having Luke in my class."
Shamelessly, this is completely a brag post, but it's our reality that data shows kids with congenital heart disease can more often struggle in school and have a higher rate of learning disabilities. Since Luke hit school age, each cardio appointment includes questions around his learning and any concerns we may have.
"As a group, children with CHD have a higher likelihood of academic, behavioral and coordination problems compared to children without CHD. This does not mean that all children with CHD have these difficulties, but the number of children is much higher than that seen in the general population. These problems seem to be more prevalent in children with complex CHD: CHD severe enough to require surgery in the first few months of life ..." (The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects, The Children's Hospital Of Philadelphia Cardiac Center)
So I'm allowing myself to brag today.

*Since the report card was printed, Luke passed his last kindergarten test and gets to start first grade reading curriculum!


**The prompt was, "If you could have any pet, what pet would you want?" Luke's sentence? "I want a bird." Not happening, buddy.

***I wish he was as quick to follow instructions at home as he appears to be at school!

This report card is such a message to me about preemptive worrying. We (speaking for myself) spend so much time worrying about that which may or may not take place. The question of "What if ..." is a thief. Pure and simple. Did you know the old English word for worry actually derives from the word "choke"?

This message, fittingly, is one I need to be reminded of since I've been catching myself doing a lot of preemptive worrying after Luke's last cardio appointment.

"What if his sats don't bump back up?"
"What if he needs the Fontan this summer?"
"What if Seattle hasn't found a new surgeon?"
"What if we're doing the wrong thing by waiting?"
"What if surgery kills Luke's spirit? What if it changes him?"
"What if his Fontan fails?"

And to be as honest as I can be:

"What if he doesn't survive?"

I have had moments in the last weeks where I'm literally breathless trying to figure out how to go back to the hospital. I broke down with a friend recently and all I could say was, "I can't do it. I can't do it." Thank the Lord for my friend, who talked me down from my cliff of panic, helping me remember what I know but what in that moment had been stolen from me:
“Fear not, for I have redeemed you;  I have called you by name, you are mine. When you pass through the waters, I will be with you;  and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.For I am the LORD your God, the Holy One of Israel, your Savior." Isaiah 43:1-3
As I read this, it hit me afresh: God is promising His presence and strength as you are passing through the waters; when you walk through fire. Not before. My friend reminded me that of course it feels like I can't do it right this minute because I'm not in "it" right this minute.

How difficult it is to find peace in the line between thinking about what is to come and worrying about it. The Bible doesn't ever say not to be thoughtful or mindful about the future. It's not sin to research my son's heart defect. It's not wrong to ask questions or think through possible scenarios. My husband and I had a conversation just last week about the timing of Luke's next surgery and whether having it this summer may benefit him because we know his first grade teacher so well.

If we are honest with ourselves, though, we know when we have crossed from thoughtfulness to worry. And for me, that's when I have to pray. It is easy for me to go too far the other way, stuffing any thought or emotion that bubbles up to the surface. Which again, is why prayer is so key. I have to intentionally give God what I am "choking" on, resettling in my mind Who is in control.

They can be as brief as, "Lord, take this worry from me." Or as simple as, "Lord, You know."

What a discipline this is! Sometimes as soon as I give it over, I take it back from Him. I think that is why God wants us to know His Word so well, to have it written on our hearts. So we can replace the chokehold of worry with the truth of His love and care for us.

"There you saw how the Lord your God carried you, as a father carries his son, all the way you walked until you reached this place." —Deuteronomy 1:31

Amen.

Thursday, March 14, 2013

Cardiology 4-1-1

Overall, I would give our appointment yesterday an A-.

In school, I didn't like A minuses and I don't really like them today. But I am choosing to focus on the good!

The good news is that Luke's echo looked beautiful as usual, great function and no narrowing where the angioplasty was done in the aortic arch. His blood pressures on arm and leg were perfect and his EKG was normal.


The minus was his sats. Normally, he runs in the mid-80's, 84-86% but yesterday he was holding steady at 80-82%. We've been prepared that eventually Luke's oxygen saturations will trend down, but you also are never ready for that. This very well could be from the hit Luke's lungs took from his nasty chest cold a few weeks ago. Or it could be that he's growing and his heart is having a harder time perfusing oxygen to his fingertips. We do notice it takes a little longer for his fingers to pink back up after he's been exercising or out in the cold. Maybe he was cold yesterday? Maybe it was the machine? A lot of factors can contribute to a person's sat level, and thankfully Dr. Kim did not jump at the chance to see cause for concern. Especially after the echo.

He does want us to come back in a couple of months, though, to recheck his sats. If they are low 80's, or back up to mid-80's, we will just keep plugging along. If this truly is a trend downward, and his sat's are high 70's, then it will be time to schedule a catheterization and possibly starting talking Fontan. Blegh.

I have to remind myself constantly, though, that this decision to move forward with the Fontan is not about me. It's about giving Luke the best chance possible to live the fullest life possible. If it's time to help him out by taking more workload off his heart, then I want that for him. And we will get through open-heart surgery and a hospital stay with the strength of our faith and the support of our "team".

It feels good to have a specific plan in place. I also appreciate Dr. Kim's level-headedness about Luke's care. He didn't rush or push or jump. His approach is just to watch and let Luke let us know if this is a concern or not.

Luke had put on a couple of pounds since his last appointment (he hit 40! yay!) and grown an inch since September. For that reason, we can go up to 2.5 ml's on his Enalapril, which allows us to switch to pill form and thus fatten our wallets :) We'll see how pill-swallowing goes. Should be interesting.

We talked a bit about Luke's left diaphragm plication and how that may impact the Fontan and also about the new Fontan "Y" graft that is showing some good outcomes.

Luke did a stellar job and had his new I-Spy books to look at to help keep him occupied. I just love this boy so much. And apparently, even when he sasses me or stomps away in anger, he loves us too:

I found this on the back of one of his school worksheets.

Tuesday, March 12, 2013

Cardiology tomorrow

Luke's sitting next to me on our home computer, playing on disneyjunior.com. A friend from school just left a few minutes ago. As "normal" as this moment is, tomorrow morning he is missing school for a not-so-normal appointment.

It's that time again ... for all you faithful pray-ers to say another prayer and think another good thought for our boy's heart. Tomorrow will be our second appointment with Dr. Kim and we are anxious (trying hard to not to be too much so) to hear his thoughts on Luke's heart function.

Because Luke's cardiologist has taken the approach of putting off his Fontan until Luke's body lets us know it's time to schedule the surgery, each appointment feels like a huge one. Will we have "the talk"? As sad as we've been to lose our cardiologist, I am also seeing the positive of having another really smart man look at my son's heart. Two heads being better and all ...

My gut is that he won't push for surgery this summer, but the weight of that possibility is heavy. Luke has grown several inches this year, and I can tell his fingers don't pink up as quick as they used to. I'm hopeful his sats are still mid-80's and there is no talk of surgery, but only God knows.

Please pray for Luke and Dr. Kim. That as a team, we will make the best decision for Luke. If I had my way, I would keep him as far away from Children's as possible, forever and ever. But if Luke's body needs this surgery and it helps him feel even a little better, then I know that's what we need to do.

As Luke plays computer, his heart is worry-free about tomorrow. He has checked and double-checked with me that the appointment tomorrow involves no needles, so he is cool. I love that. It's kind of like that with God: As we, Luke's parents, bear the burden of his appointment tomorrow, God, our Father, longs to bear our burden for us, if we'll only let Him.

Thank you for your prayers!


Friday, March 8, 2013

Self-unaware

In my last blog, I posted this picture of Luke, taken while we were in the ER a couple weeks ago:


This is not the norm. Luke talks very little about his "superman scar" and shows it off even less. He likes to wear his swim shirt and unless his buddies initiate shirtless play (boys, right?), he likes his shirt on.

At the basketball end-of-season ice cream celebration, Coach David spotlighted each of the eight players. David is a very close friend of ours and has been a part of Luke's story from day one. When Luke made his first basket this season, you would be hard-pressed to find anyone in that gym more proud.


I asked David to send me the gist of his spotlight of Luke and I wanted to share. Partly because Luke's reaction was so surprising to us and partly because I want to record the kind of people we have encircling us.

"When I think about Big Luke the word that comes to mind is HEART. It wasn't hard to notice that whenever Luke took the court he always played the game and ESPECIALLY defense with a lot of heart! But for those you who don't know, Luke has a special heart. Luke was born with a heart that didn't quite work like most hearts. That heart needed a little help from doctors to make it nice and strong.  Luke has had two surgeries done on his heart just after he was born. I was there at the hospital when Luke had tubes hooked up to his body for weeks and was fighting to stay strong.  I remember praying for him a lot and he was super brave.  Luke's heart is a big reason why I decided to coach this team the last couple of years. When Luke exercises, his heart has to work much harder than most kids.  When he breathes, in order to get oxygen it would be like you or me sucking air in through a narrow straw while breathing hard.  So to see him running around on the court trying his hardest with that big smile was awesome! I'll never forget during our last two games of the year Luke made his first shots of the season! One in each game!  Those shots were money and it was incredible!  I wanted to make sure to get a chance to coach this incredible kid not knowing how long he'll be able to play. And he didn't just play.....he played AWESOME! So Luke....I want to congratulate you on fighting hard every time you played (he goes into some Kung Fu Panda moves because I said "fighting"), and being such a superstar and having heart for your team!!  I love you buddy!"
During the part about the surgeries, Luke pulls the collar of his shirt down to show off his scar.


Now, I know six year olds are not the most emotionally mature and maybe he reacted a little out of embarrassment at being spotlighted, but he had never initiated attention to his scar or heart defect before this week.

I've met a lot of heart kids — in person and in blogland — and I would place Luke on the far end of the spectrum of heart defect self-awareness. Or maybe I should say self-unawareness. Some heart kids talk freely and proudly of their heart, their scars and their surgeries. They have oxygen, or g-tubes, making their differences more noticeable at a glance.

Luke? Not so much. When asked a while ago by a playmate, "What is that on your chest?" He responded with, "Oh, just a scratch." Another answer he's given is, "That's just where my heart was fixed." It's very simple to him. He knows he has had heart surgeries as a baby. He knows he sees a heart doctor. He knows he takes medicine to keep his heart strong. But until recently, the dots have not connected to make him aware that his experience is radically different from most other kids.

In the bath the other night, Luke asked me if Laney had a "superman scar". I said no. Then he asked if I had one or if Dad had one. I said no, just him. "God made your heart unique and special." He was truly saddened by this. "I don't like that I'm the only one in the family with a superman scar." It was so interesting to me that he was just putting this all together! I guess Rog and I have done a better job than we even intended to make sure Luke never felt anything other than normal.

Because it was intentional on our part, to let him come to his own conclusions about his special heart. We haven't kept it a secret from him, but he in no way knows that his heart defect is serious and complicated and has long-term ripple effects. We took to heart Dr. Stefanelli's assertion that Luke will self-regulate in these early years. Sometimes it took everything in me (and I wasn't always successful) to let him go and not stop his activity. We have held the belief that until Luke needs to know, we don't want him to know he's different.

He may not have been the quickest on the court, but he had as much fun as anyone out there.

It feels like a big line to cross for us. We have never wanted Luke to use his heart defect as a manipulation tool. But we also don't want him feeling discouraged that he isn't as fast or strong as some of his friends. And of course, as the Fontan nears, we know we will need to navigate those conversations as well.

This decision of when and how much to talk about your child's condition is of course individual to each family and I by no means feel like we have all the answers. What I do know for sure is that I love Luke with my whole heart and want him to be all the stronger for what he's been through. I want his character strengthened and his heart to trust Jesus when he faces adversity and comes up against limits. I want him to know he was knit together by God, for a purpose, for such a time as this.

Lord, may it be so. And give us the wisdom and discernment we so desperately need.

Wednesday, February 20, 2013

Not just one week of the year

I guess it is fitting that we celebrated Congenital Heart Defect Awareness Week (made official by Washington State Governor Jay Inslee!) with a drop-in to cardiology, two trips to urgent care and a long afternoon in the ER. After six solid days of coughing, three missed school days and nights of restless sleep, it was time to take him to the doctor. We had battled this cough over Christmas, and I had stopped by our cardiology office to have them listen to his lungs, so we were pretty sure this was something we could handle at home. Luke just coughs when he gets an upper respiratory virus. And coughs, and coughs. But Wednesday, I could just tell he was feeling even worse than he had. He had those sick eyes we moms all know too well.

Lots of movies and shows last week!

With his sats hovering around 72-75% at the peds office Wednesday afternoon, the doc ordered a chest x-ray just to make sure she wasn't missing something. Thankfully, the chest x-ray was clear, so we headed home (with a heart child, you live with the reality that anytime your child is sick, it is a very real possibility you could be admitted to the hospital) with a prescription for Prednisone in hand.

After two days on the steroid and no improvement in the cough, we were discouraged, but still not overly concerned. Until Friday, when Luke woke up crying out in pain in the middle of the night, sobbing because his ear hurt so much. We knew we had to go back to urgent care Saturday morning to get an antibiotic for his ear infection.

Waiting at urgent care for the results of his RSV test.

Well.

It wasn't quite that simple, which is so often the case with a heart child. The doc we saw (a good reminder to always see your child's pediatrician if at all possible!) didn't like Luke's elevated white blood cell count and fever cycle. Along with the duration of his cough, he felt very strongly we needed to go to our local ER. My gut was telling me he was overreacting, but at that point, when a doctor is strongly urging you in that direction, what do you do? You go!

Several hours and another chest x-ray later, we were sent home with ear drops and a prescription for Amoxicillin. I'm guessing a $1,500 bottle of Amoxicillin.


As frustrating as the day was, both Roger and I agreed we'd rather doctors err on the side of caution when it comes to our child. We'd rather spend an unnecessary afternoon in the ER than have something go terribly wrong at home.

Luke earned his Command Ship Chima lego after his hospital visit.

It's just been one of those weeks where the reality of Luke's heart condition has knocked me down a bit. My Facebook feed is full of CHD Awareness buttons, pictures of beautiful heart babies, and pleas for more funding for this invisible disease. I'm so glad there are so many passionate moms and dads out there working wholeheartedly to raise awareness of this terrible disease. The #1 most common birth defect.

How could congenital heart defects be the most common birth defect? In my experience, most people I tell are shocked by this statistic. I know heart defects were the farthest thing from my mind early in my pregnancy with Luke. I worried about cleft palate and Down Syndrome, but not a heart defect. August 19, 2006 set my husband and I on a path we never expected. A whole world was soon to open up to us; a world of feeding tubes, oxygen saturations, weight gain struggles, cardiac ICU's, echocardiograms, heart failure, medications and EKG's.

I remember meeting with Luke's heart surgeon before he was born at Seattle Children's Hospital. I don't remember everything we discussed but I vividly remember being stunned that my child may actually be blue. I was that unaware of what a heart defect could mean. I can't imagine what Dr. Cohen thought when I repeated, "You mean he might look blue?"

The reason so many people are in the dark about the prevalence of heart defects is that, often, blue-tinged fingertips and toes are the only clue something is wrong with the child. Even though 50% of children born with a heart defect will require an invasive heart surgery at some point in their life, their "zipper" is most often hidden beneath their clothes. A little child's head made bald by cancer is horrifying. A little child's chest sawed open is as horrifying. But CHD research is severely underfunded and talked about even less.
"In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD." —1in100.org
 Any chance I get I share Luke's story in the hopes that awareness brings innovation in the heartland.

I hold so much hope for these heart kiddo's. For goodness sakes, they are — right now — able to create beating heart tissue from your skin cells! But just this week, three heart babies I know of passed away. I think about how far we have to go to find an actual and true cure for congenital heart defects.

I have been asked countless times if Luke's heart will be "fixed" or "good to go" after his next surgery. It will hopefully and prayerfully be stronger, but it won't be cured. His heart will never be a "normal" heart.

As we keep the momentum going from all the awareness raised during Congenital Heart Defect Awareness Week, I wanted to add my list of ways you can help make sure kids like Luke get to live life to the fullest:

1) Donate blood: The American Red Cross website allows you to search by zip code for a blood drive near you.

2) Donate to a reputable CHD organization: All three of the below organizations specifically raise money and awareness for Congenital Heart Defects.
3) Visit Build-a-Bear in the month of February: Build A Bear has created an opportunity for all of their guests to make a contribution to the Congenital Heart Foundation when they complete their purchase during the month of February. This is the fourth year of the partnership, and over $600,000 has been raised to support CHF.

4) Ask about your unborn baby's heart at your 20-week ultrasound: "The only thing worse than having a child with a heart defect is having a child with an undetected heart defect." We are so fortunate our sonographer didn't let us leave our appointment that day (even without being 100% sure something was wrong) without setting up an appointment for us with a pediatric cardiologist. Use this PDF to know what to ask your doctor.

Phew. That was a long update. I have had so many blog posts brewing. Hopefully this one will spark the writing muscle!