Friday, May 22, 2009


The other day as I was rubbing lotion on my scrubbed-clean little boy, I noticed a scar I hadn't realized was still there. It's a small dot on the inside of his wrist, a reminder of one of his IV's, or possibly a remnant from an arterial line. It made me look for others that aren't as obvious as his sternal and thoracotomy incisions. He has three dots on his neck, which is where they placed an arterial line after both surgeries. He has another two on his ankle where IV's were placed, two on the top of his hand, and between his chest tube scars he has little confetti-type marks which I have never been able to figure out.

Pardon the farmer's tan!

As I massaged the lotion into my baby's sweet skin, I had a moment of intense emotion, beginning with grief that he's had to endure pain; moving to pride in his resilience; sadness that more scars will mark his body; finally gratitude that medical science has allowed my son to live fully.

Over the next couple of days, when I thought about those scars, I was surprised to find I was thankful for them.

God told Moses (if you haven't already guessed from recent posts, I'll admit I'm a proud member of the Moses fan club—what a guy!) that when the Israelites entered the Promised Land, they were to write God's Law on large, plaster-covered stones. God knew it about the Israelites, and He knows it about us — WE FORGET! It seems impossible that the Israelites could forget walking through a parted sea, or watching water pour out of a dry desert rock.

But like the Israelites, I too am forgetful, which leads me back to why I'm thankful for Luke's scars. I'm thankful that there are visual reminders of God's work. I'm thankful that these scars never let me forget that God promises to cause "all things to work together for good to those who love Him."

My hope for Luke is that he wears these scars proudly. My hope is that when he looks at his scars, he remembers that God has created him with a unique purpose. My hope is that his "superman scars" open doors for him to share his story, to bring awareness to this disease, and to bring glory to God.

Saturday, May 16, 2009

Warm nights and funny phrases

Today was BEAUTIFUL in western Washington. One of those days where everyone's steps are just a little lighter. After a trail race this morning on beautiful (not to mention steep!) Cougar Mountain and a celebration for my Grandma's birthday, Roger, Luke and I stayed outside until Luke's bath-time. Here are a few pictures of our evening outside:

You can see remnants of Grandma Jeri's cake on Luke's shirt. He was mid-sentence of my favorite sentence: "I yuv you."

Luke can finally steer his motorized school bus! This is ideal to me having to turn the bus around every time he crashed!

Happy boy.

I absolutely love watching Luke's language skills evolve. I love getting a glimpse into how his little brain is making sense of the world around him. He is beginning to initiate sentences more rather than repeat what he hears others say. Like a conversation — so cool!

My favorite is when I hear him (or overhear him) using phrases that are typically used by adults:
  • "Hmmm ... Let's see now."
  • "Maybe in a little while" or "just a little bit longer"
  • "I cannot believe it!" (although I may have to attribute that one to Little Einsteins, not his parents)
  • When playing with a telephone, "Hi! How ya doing? I'm good. Okay, bye!"
  • "We could do that. That be so fun!"

Wednesday, May 13, 2009

Thank you Adam Smith!

Aside from having a spectacular last name, there is another reason I support Representative Adam Smith: He supports H.R. 1570, the Congenital Heart Futures Act! I received this email, in part, last week:

"Currently, H.R. 1570 is under review in the House Committee on Energy and Commerce. Please be assured that should this legislation come to the House floor for a vote, I will keep your strong support in mind.

With a better understanding of the causes, we can better improve the treatment options for congenital heart disease. ...Please know that as the budget and appropriations process moves forward, I will continue to work to ensure both the NIH and CDC have adequate funding to conduct congenital heart disease research."

If you have not already, please contact your Senators and Congressmen about this crucial legislation. You can find the instructions by clicking here.

If you are interested in seeing the status of this bill, you can go to this web site.

Sunday, May 10, 2009

A Mother's Heart

Luke's second diagnosis at 24 weeks in utero was described to us as, "Rare. As in so rare that when you tell another cardiologist about it, they would look at you funny and say, 'Huh? What did you say?'" So rare that out of 400 diagrams, Dr. S. didn't have one to match Luke's heart.

From a medical standpoint, Luke's heart is 1 in 10,000,000. A heart to be analyzed, studied, documented.

From a mother's standpoint, Luke's heart is my heart. A heart to be protected, cherished, nurtured.

I'm so glad the job is mine:


What makes Luke's heart so rare is two-fold: One, he is a true single ventricle, with not even a hypoplastic right ventricle. And two, most double inlet left ventricle hearts also have a transposition of the great arteries. Luke's arteries are normally related.

Just in case you were wondering!


Thank you to my hubby who gave me the entire day to myself. After a yummy breakfast in Tacoma with my mom, stepdad and brother, the rest of my day consisted of a good book, a good run, Starbucks, a nap, and Italian food — all my faves! Thank you, honey!

Tuesday, May 5, 2009

Now THAT was a good nap

You know you've had a good nap when you wake up with hair like this. (Every angle for your viewing pleasure.)