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!