Wednesday, February 25, 2009

Destination: Puyallup

Our home was this year's location for the Smith Family Christmas/Birthday/Reunion celebration (I know, that's a lot of celebrating in one weekend!). Roger's parents, older brother and three girls drove over from Spokane, Washington and his younger brother, wife and three boys flew in from Ohio.

Much coloring ...

Reminiscing ...

Laughing ...

K'necting ...

and honoring was had.

But wait, you say, what was Luke doing during all this wonderful family time? Three things, mainly:

Whining, clinging and being plain ol' miserable. My niece Samantha (who took all the above gorgeous pictures) surprisingly captured a snapshot when Luke was not attached to my hip (just my feet).

Luke started throwing up the night before everyone was scheduled to arrive and pretty much felt crummy the entire weekend. Not one to want to miss the festivities, he would muster the energy to try and play with his cousins, but would quickly melt and cry to go back to "Mama's bed, watch Wall-E."

Despite Luke being Mr. Sicky Pants, the weekend was wonderful. Rog and I felt so blessed to be able to host our family and have everyone under one roof. On Saturday night, even more family came over to celebrate Roger's dad's 80th birthday. 22 people came to honor Russ and his impact in all of our lives.

I am blessed to have such wonderful in-laws. Thank you for loving the Lord and loving us!

Monday, February 23, 2009

Ducky Bread

Quick Lukey story:

Before bed the other night, we were sitting in his rocking chair listening to his playlist (such a child of the millenium!) and the song "Hallowed" came on. This is a beautiful version of the Lord's Prayer by Jennifer Knapp and goes, "Give us this our daily bread/Hallowed....Hallowed." All of sudden after this line, Luke sits straight up and says, "Feed duckies bread!" Oh, sweet boy, how much do I love you!

Wednesday, February 11, 2009

What I do know

Another heart mom posed the question on her blog, "Do other heart moms worry the way I do?" and though I can't speak for all heart moms, I know I shouted a resounding "Yes!" at my computer screen. There are days when I let fear and uncertainty hold on tighter than necessary. There are days when everything Luke does or doesn't do is analyzed with my CHD glasses on. And there are days when thoughts about his next surgery steal my joy of today.

Seattle Children's Hospital has a congenital heart defect support group, Heart-to-Heart, that meets once a month at the hospital. February's meeting was unique in that Chief of Pediatric Cardiology, Dr. Lewin and Chief of Cardiothoracic Surgery (otherwise known in our circle as the man who has seen and fixed Luke's heart), Dr. Cohen attended the group. The goal was for the docs to get a glimpse of what goes on in one of these meetings and for the families to ask questions and hear what these men are thinking about as they practice their discipline.

Yes, surgical options for children with congenital heart defects have come a long way in the 30 years of it's availability. But 30 years is a blink of an eye. The bottom line is that even top-rated cardiologists at top-rated cardiac centers just don't know what the future holds for these kids. Will all single ventricle kids need a transplant eventually? We don't know. Are kids who have undergone heart bypass operations at higher risk for neurological issues? We don't know. Will Luke be able to keep up with his classmates at recess? We don't know.

I try and imagine Dr. Cohen, who has spent probably 30 years of his life dedicated to studying, learning, practicing and researching congenital heart defects, and how difficult it must be for him to say those words: "I don't know". This field is just too young and there just hasn't been enough data collected.

My choice today is easy. Do I let this uncertainty distract me from what joy is right in front of me? Luke talking, running, kissing, whining, playing? Or do I grab hold of this promise found in Isaiah chapter 40:

"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom."

Today, I am focusing on what do I know. I know that God nevers grows tired or weary of placing encouragement in our laps when we most need it. Just today, in the middle of one of those weeks that has felt wearisome, I run across this story from U.S. News & World Report. If you can't read the entire story, here's a small excerpt:

"Makenna Franks turns 5 this month. She'll probably start dance class soon. She noshes on Fritos twists, chases after her older brother and her boy cousins, and tries to climb trees the way they can in her suburban Houston neighborhood. Just a regular kid. But less than a year ago, she was on the operating table at Texas Children's Hospital for the third open-heart surgery of her four-year life...

...The replumbed heart is working well, says Grenier. She pronounces her patient "just amazing—she knows she has a zipper on her chest, but she won't let it slow her down."

A recent study in the journal Circulation suggests that Makenna has a good shot at a smooth road. Researchers tracked every Children's Hospital Boston patient born prior to 1985 who had Makenna's type of surgery. Most, even those who had the procedure many years ago, were alive 20 and 25 years later.

"If Makenna came to me as a teenager and asked if she could run a marathon," says Grenier, "I would tell her she probably could—if she'd been doing as remarkably well as she has so far."

I also know this: The friends I have met through this CHD journey are priceless. Two weekends ago, I got to meet up for dinner with three other "heart mamas", Katie (Maddie's mom), Mimi (Mia's mom), and Susie (Teagan's mom). What a joy to sit with three other women who know exactly how precious hand sanitizer is!

I know that there are people out there who are passionate about finding more and better options for these amazing kids, and I am committed to praying for them! It is coming up on National Congenital Heart Defect Awareness Week, and I am committing to pray every day for surgeons, doctors, researchers, nurses, cardiac centers, and activists. I know that prayer is powerful and effective not only to change others, but to change me.

Finally, I know that Roger and I have the sweetest, smartest, best boy in the whole world. The proof is in the pudding: