Monday, March 29, 2010

Easy to please

We have had a couple of spring-teaser days these past several weeks and Saturday was one of those. Luke and I were outside soaking up the Vitamin D. He has a workbench in the garage where he keeps his tools and he had pulled out a wrench to "trim the trees like Daddy". He spent quite a bit of time "trimming" our hedge bushes while I read and then cut my toenails (I know, our weekends would make you jealous). While he was trimming and I was clipping, he looked over to me and said, "I love hanging out with you, Mom." Oh my word, son, I love hanging out with you, too. And our wallets thank you for being so easy to please.

Another cute story I wanted to get down was from last week. The Federal Way Aquatic Center has a family pool that has serious bragging rights over our local Y's toddler pool. When we went a few weeks ago for the first time, Luke had a really hard time when it was time to get out. Thankfully, his meltdowns never turn into full-blown kicking and screaming tantrums, but his frustration was, to say the least, obvious.

So even before we got into the pool last Thursday, I had begun to warn him that there would be consequences if he fussed getting out today. I asked him what he thought should happen if he fussed and he came up with losing the privilege of going to Chipotle for lunch. I gave him the 5, 2, and 1 minute warnings, reminding him of what was at stake.

I pulled him out and walked him toward our towels. He was tense and I could tell how hard he was working to control his frustration. I kept telling him he was doing a great job even though he was sad to get out. I stood him on the bench and was wrapping him in his towel when he said very seriously, "Mama, this is hard."

I knew exactly what he meant. It IS hard to control selfish feelings. I have a hard time with it and I'm 31! I think that's why I was so proud of him for being able to communicate that without losing his cool.

The blessings of self-control are many, and now I can think of one more: Chipotle!

Saturday, March 20, 2010

Go Dawgs!

Sweet Sixteen, here we come!
Does anyone else love March Madness like I do?

Go Dawgs!

Friday, March 19, 2010

Out of the mouths of moms

I wonder if three years ago I would have believed the things that would come out of my mouth as I endeavor to parent a preschooler.

"No Luke, we don't put bees in our mouth. Why? Because bees aren't good for your tummy."

"The puppy is just licking you because he wants to play. He licks you because he likes you."

"Jeans or pants, buddy. You can't go to Target naked."

"Yes, but only put the honey on the yogurt and carrots, not the macaroni and cheese."

The best part about this stage of parenting is that it seems to be a daily part. I can't believe I have a son who asks so many questions and is so curious about the world around him. I love it, but I do have to step back now and then and just shake my head at what just came out of my mouth. Shake my head and check to clock to see when hubby's coming home to share my wise words with him.

Wednesday, March 17, 2010

Survey says ...

There is a CHD survey initiated by California Heart Connection circulating around cyberspace, asking parents of children born with congenital heart defects to answer questions regarding their experience with their child's diagnosis. The hope and goal of this survey is to provide valuable insight to physicians who are charged with handing this diagnosis to parents who most likely know little, if anything, about CHD's.

One of our fabulous nurses at Luke's cardiology office just returned from a pediatric cardiology conference put on by CHOP and she shared this encouragement from her attendance: Doctors ARE wanting this information. They ARE thinking about how to relate to parents during the incredibly stressful time of diagnosis, about what information is too much or too little, and they DO care about minimizing parental stress.

If you haven't already, you can take the survey through this link (it takes about 20 minutes to complete).

As I typed and clicked my way through the survey, I was surprised at the flood of recall (mostly positive) of how we received the news of Mr. Luke's extra-ordinary little ticker.

I thought about our ultrasound technician, who was brave enough to go with her gut and send us to a specialist, even though what she was seeing admittedly could have been chalked up to Luke's activity and position.

I thought about Micki, our first fetal ultrasound technician, who was gentle, optimistic and made us comfortable (even laugh!) during an agonizing 45-minute echo.

I thought about how Dr. Stefanelli didn't overwhelm us with statistics, surgical procedures, diagrams, or medical jargon. I believe he sensed we were overwhelmed enough.

I thought about the child-life specialist at Children's Hospital, who sensed my inability to emotionally handle the full ICU tour before Luke was born, and gently led us back out.

I thought about Dr. Stefanelli calling us at home on Christmas Eve, simply to let us know he was back in town and if we had any last-minute questions as Luke's due date was quickly approaching.

I thought about how well Dr. Lee (my OB/GYN) and Dr. Stefanelli communicated as we formulated a birth plan. I appreciated deeply how well they both listened to me and to each other.

I appreciated Dr. Stefanelli giving us his pager number, knowing full well we would use it — even on weekends and evenings.

I thought about how Dr. Cohen portrayed such confidence in his abilities as a surgeon, yet maintained that until he could actually see Luke's heart in the O.R., he wasn't going to give us definitives. His willingness to change direction in the O.R. and make game-day decisions sky-rocketed his trustworthiness in our minds.

That is a lot of positive experiences in learning about Luke's heart defect. There is very little I would change. But I couldn't forget our experience with our perinatologist.

We scheduled a high-level ultrasound with this maternal-fetal specialist after Luke's original diagnosis of AVSD (atrio-ventricular septal defect). With this diagnosis came a 40-50% chance of Luke also having Down Syndrome. During the span of the 60 minute ultrasound, this doc made three verbal mistakes. Verbal mistake #1: Don't tell the parents of an unborn child with medical issues how many marriages you've seen dissolve in situations like this. Verbal mistake #2: Don't yell out into the hallway for another doc to come take a peek at the monitor because the picture is so interesting to you. Verbal mistake #3: Do not, under any circumstances, call the unborn child with a unique heart an "odd duck".

Obviously, this doctor didn't have the greatest bedside manner. Some doctors, no matter how good they are at what they do, don't and I would guess most aren't taught in medical school the intricacies of dealing with a difficult diagnosis. I took the survey because I believe that doctors have good intentions and good hearts and with this feedback from parents, they can only be better equipped to say what needs to be said and leave out what doesn't.

Sunday, March 14, 2010

By definition

It's been a couple weeks since the Olympics ended but I bet Shaun White is still wearing his gold medal wherever he goes. Many of us marveled at, cheered for, and celebrated with Shaun White as he represented America in Vancouver. Not an avid follower of half-pipe snowboarding, I have to admit I had never heard of Shaun White before the 2010 Olympics. Then I heard about this red-head who was a front-runner to win gold for America, a snowboarding phenom. THEN I heard about this phenom's heart defect. It wasn't headline news. In fact, Shaun's heart defect wasn't even mentioned in a lengthy USA Today article until about three-quarters in and was given only two brief sentences.

During interviews, mention is sometimes made of  his congenital heart defect (Tetralogy of Fallot), but it seems to be a mere mention, a way to highlight his athletic perseverence, not the focus. I had to dig a bit to even find his diagnosis.

Shaun White is not defined by his heart defect.*

As so many uncertainties about Luke's future swirl through my head, it's hard to imagine a day where Luke's heart is just a piece (big or small I can't say yet) of who he is. All this Shaun White coverage has got me thinking about my prayer for Luke's life, what I pray and hope defines him.

Which is what?

I pray Luke is defined by his obedience to God, even when it doesn't make sense to others.

I pray Luke is defined by how well he seeks to serve others, not by how many people serve him.

I pray Luke is defined by how closely he walks with God, not by how closely he can fit in with everyone else.

I pray Luke is defined by the high degree he loves God, not by what is written on his college degree.

Tall orders? Impossible expectations? Without God, absolutely.

A study was done once where a sociologist trekked along with several mountain climbers on their expedition to reach new heights. He quickly discovered a connection between cloud cover and contentment. "When there was no cloud cover and the peak was in view. the climbers were energetic and cooperative. When the gray clouds eclipsed the view of the mountaintop, though, the climbers were sullen and selfish. ...

"The same thing happens to us. As long as our eyes are on his majesty there is a bounce in our step. But let our eyes focus on the dirt beneath us and we will grumble about every rock and crevice we have to cross. For this reason Paul urged, “Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to the things going on around Christ — that's where the action is. See things from his perspective” (Col 3:1–2 MSG)." —From In the Eye of the Storm, by Max Lucado.

By definition, Luke, you are God's adored child and whatever you do, whatever mountains God asks you to climb, be defined by that and that alone.

*In writing this post, I kept thinking about the trailblazers like Funky Heart who have come before many of our heart kiddos. I wanted to make sure it was clear that just because adults with congenital heart defects choose to focus their efforts on bringing awareness to this disease does not mean I think they are defined by their heart. Okay, I feel better.