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:


  1. Very good post!! Their future is unknown, life is fragile.. we just have to put our faith in God!

    Even if Owen gets a heart... the average lifespan is only 7-10years.. then we do it over again. There is no guarantee.


  2. We all worry about the uncertainties of tomorrow with our heart kiddos, but our kids make today worth living! Praying that tomorrow brings just as much health and happiness for Luke and his family.

  3. I loved this post! Dito to all you said...I worry just to worry sometimes! Crazy, I know! I was a bit disappointed in what the docs said about a "future transplant". I guess I've been focusing so much on these 3 surgeries that thinking ahead to that scares me. Trust in God is all I can do and let Him do the planning. He's never let me down to this day!!! It was so fun seeing you again, wished we could have visited more :) Take care!
    Love & friendship,

  4. What a great post! Just what I needed to read tonight...I too am learning to put Teagan's future in god's hands and let the worry go! So fun to see you guys and visit for a bit- I'm sure we girlies could have talked all night! Luke is such a handsome little man, those eyes are adorable! Teagan and I can't wait to meet him next time we get together!