Wednesday, August 19, 2009

What's in a name? Part II

August has never been a particularly momentous month for me. Back-to-school shopping was about the highlight.

And then a boy asked me to marry him and we said our "I do's" on August 11, 2001. Then Augusts were about celebrating anniversaries and how God was growing and stretching our marriage.

This past week marked three years since we found out about Luke's heart defect and two years since Luke's Glenn and DKS. It is likely Luke's Fontan will be next August.

You could say August is a bit more momentous for me now.

The day we found out about Luke's heart is still so vivid to me. The joyful anticipation we felt as we drove to our OB's office; the prayers we prayed for the health of this baby; the moment we heard, "I think you need to see a specialist"; the three hours we had to pass before we saw the specialist; the hope we felt that maybe, just maybe, it was the baby's positioning that caused the ultrasound tech to worry about his heart; the overwhelming blanket of disbelief and confusion thrown upon us as we heard the words "congenital heart defect" from Dr. Stefanelli.

In between our ultrasound and the appointment with Dr. Stefanelli, Roger and I drove to the waterfront to walk, pray, call our friends and family and force ourselves to eat something. We found ourselves sitting at this old wooden table, analyzing the words we heard at our appointment. The only conclusion we could come to is that we knew nothing about heart defects and we had very little information. Were we dealing with a wiggly boy who wouldn't position himself so all of his chambers were visible? Or were we dealing with an issue that would cause incompatibility with life? We had no idea.

In our deepest despair, in our darkest moment of fear, God was there, already preparing to make sweet what was bitter. That is what the name Jehovah-Rapha literally means: "The Lord Who makes bitter things sweet" (Exodus 15:26).

This picture is a little dated (Luke was just walking), but it perfectly symbolizes to me the name Jehovah-Rapha:

The table where Rog and I sat the day of our first ultrasound. How sweet the view is now from this table.

On that Friday afternoon, we didn't physically see Him, nor did we audibly hear Him, but my faith requires me to trust that He was there. This news didn't surprise Him or catch Him off-guard and He knew it would be difficult for us to bear, bitter news. But He allowed it because He can see further and clearer than we can. He sees the victory in the end.

In a way, it's like Luke's upcoming Fontan surgery. Luke doesn't know it's coming, but his parents do. We know the pain involved and we will feel it right alongside with him. But if we saved him from that pain, what good would that do? That pain will save his life.

In all honesty, my human self would love to have been spared from the pain of hearing that our baby's heart was imperfect, but in faith, I believe that God allowed this imperfection to transform our family.

Part of that transformation process has been being able to glimpse sweetness from that bitter day. Our eyes have been opened in a new way to the Goodness of God — through people we have met, stories of faith we have heard, the prayers we have prayed and seen answered, and remarkably, even through the tears we have shed.

From now on, August or not, God will continue to make good on His promise to heal those bitter things in our family's life. It is up to me to look for, and then keep my eyes on, the sweet.


  1. Jesse,
    You write so beautifully and thoughtfully about all aspects of this journey. I love to read the insights you've gained, to hear the joy in your words and the steadiness of your faith. I admire your strength, your grace and your ability to see the sweet.

  2. Jesse,
    Thank you for sharing. I want to share your post with a friend from church and ask you to pray for her and her husband - Brian and Tina - who just this week went through this same hardship of finding out that their baby girl has HRHS. Please lift them up as they are processing all of the information and trying to get Medicaid (their insurance does not cover labor and delivery).
    Pam Owens

  3. You have me crying, Jesse! Gulp.

    Oh man, we experienced these same things and I remember them being just as confusing and painful. What a hard time that was, but like you said, I knew God was with us! Now, looking back, every day since that horrible day of finding out our baby had CHD has been sweeter than I could have ever imagined. It's amazing, isn't it?

    Happy AUGUST to you guys! It is most definitely your family's special month. xo

  4. Awesome post Jesse! You are so talented. Very neat picture of Luke walking by that bench which symbolizes so much for you and Roger. I haven't been back to the "spot" Bryan and I sat, we too were so afraid, confused and in total shock of what we learned of Maddie's diagnosis. That day is so vivid to me too. I think it's those vivid memories that are the most life-changing for us. Thanks for sharing this :)

  5. You have a beautiful way with words and God has given you much insight into the lessons He's trying to teach you. It's so refeshing to see a teachable heart. Maybe you could write a devotional book for CHD parents someday.

  6. hi!
    thank you so much for introducing yourself to me - and for your prayers.
    i love the opening of your is so true, and it really encouraged me!
    your son is absolutely presh ;-)
    will continue to check in on him now!

  7. Thanks for the comment you left on my blog last week. I loved reading this post and I am so glad that you have learned to find the sweet in the bitter. It's so hard and a daily struggle. Luke is precious.
    Faith M.