Thursday, February 27, 2014

I'm Finally Ready to Talk About My Son's Disease

Aiden and I were leaving his check-up appointment this week.  We walked out of the hospital and turned down the sidewalk.  We looked up and saw a white man barreling towards us.  His hand clenched a phone to his ear, his eyes wide and frantic.  I’m quite sure he never saw us as he sprinted, full-on sprinted, towards the doors of the hospital.

We kept walking and suddenly I’m weeping. 

Because now I know.

Now I know what it feels like to have something very, very wrong with someone you love more than life itself.  You can imagine what it would feel like, but not until you’re trembling with the reality can you ever really know.

I wept because seeing that man’s wild eyes took me back to four weeks ago.

I’m sitting in a hospital waiting room in Northern Thailand.  My three-year-old boy is slouched and half-sleeping in my arms.  His fever has been raging for eight days now.  His body is splotched with rash, his tongue fuzzy and bumpy, his lips cracked and dry.  We’re waiting to see the fourth doctor of the week.*   

The room swarms with parents and sick children.  Nurses scurry to and fro.  Every bed in the hospital is full. 

I’ve waited long enough.  I’m done with these trips back and forth to the hospital, these medications tried and failed.  My boy is not better, only getting worse.  Mama bear takes over.  I march up to the counter, heaving him on my hip. 

“I need to go to the emergency room,” I tell all the white-capped nurses. 

This sends them scampering, searching for his chart.  I do not move. 

Soon I’m being escorted to see a doctor.   

Moments later, she’s telling me, “I think he may have Kawasaki disease.”

Kawa-what??”  The word “disease” exploding in my brain.

I don’t understand anything she’s saying.  I hear the words “serious,” “urgent” and “involves the heart.”

I choke against the fear rising in my throat.  I try to ask her questions.  She’s says I can look it up.  I ask her again, she says we’re doing blood work.  Talk to the specialist after the blood work.

Rapid texting to my husband: “Kawasaki disease– look it up.”

I’m back in the waiting room.  And there in that frozen moment, tears gushing down my face, I’m feeling all the pain of all the mothers all across the world with dying children in their arms.  I’ve imagined this feeling, every mother does.  But now I know.

Aiden raises his head up off my chest and looks at my wet face.  I pull him back to me and kiss him in his hair.  I whisper what I’ve been telling him for 8 long days now, “Mama’s going to take care of you.  You’re going to be ok.”

What if I can’t?  What if he won’t?

What if I can’t?  What if he won’t?

There are blurred and vivid memories from that day of eternity. 

We’re pinning him down, the IV going in.  He’s screaming, “Help me!”  He’s ferociously mad at the nurses.

We’re waiting for a room to open up.  I’m curled up on an examining table with him.  He’s quiet for a while.  Then he’s trying to rip his IV out.

Side affect of Kawasaki?  Extreme irritability. Yes, extreme irritability in a three-year-old.  I’ll spare you the details and let you imagine. 

Throughout the day we crash course ourselves in Kawasaki.  No one knows the cause of this rare disease.

Turns out my mama heart could have been spared with the words, “Treatable” and “With treatment, a very good chance of full recovery and no long term complications.”  My gut is still in knots, but slowly I begin to breathe.

By evening we’re pumping intravenous immunoglobulin from over a thousand people’s blood into my son.  There’s constant monitoring and medications, and finally, five days later, he is released from the hospital. 

This week was his follow-up heart-scan and blood work, and it showed that he is blessedly back to normal. 

Thank you, thank you Jesus.

And thank you to everyone who loved and prayed us through this time.  We will be ever, ever grateful for how you held us up.

My boy’s heart is back to normal.  I think my heart, however, is still recovering.  The fear I felt has made a mark, left a scar.  It has me weeping for people running wild-eyed into hospitals.  And it has me lingering in extra long snuggles with my babies, sneaking an extra peck on their cheeks, sighing content at the sound of their giggles.  Scars bear their own beauty, I think.  They link us tenderly to the pain of others, and they form a forever reminder to embrace each day as a gift.

Do you have a scar that's done this for you?

*Kawasaki disease is a very difficult disease to diagnose because symptoms show up in a gradual progression.  Once we got the diagnosis, we received excellent care, and we were grateful to be in very capable hands.    



  1. Praise the Lord! Beautiful post Danielle and so happy he is doing better! Terri Ruddell

  2. Crying. Thank you for finding the courage to share this story. I will savor my children in that mixture of rapture and pain today.

  3. Danielle, thank you for sharing this. My heart aches and rejoices at the same time. I see my own boys there in your Aiden's face. I feel the knot in my stomach even as I know the joyful conclusion. You expressed all the emotion so beautifully. I'm so thankful you had good medical care in Thailand. Amy S