Heart Day’s Eve

On January 16, 2012, in Commentary, Julia's Journey, Life, Personal, by Chris

I rocked my little girl to sleep tonight.

I know that’s not such a news flash. In fact, it’s pretty routine around our house. Even though all the experts say you shouldn’t let your baby fall asleep in your arms, but lay them down while they’re still awake so they can self soothe and all of that, I indulged myself a little bit, just for tonight.

I also cried like a little girl when I read Julia one of her bedtime stories tonight.

Okay, that’s a little less routine. Jocelyn was out at her book study and Julia and I had a great night playing stack up cups and tossing her rattles around and knocking down blocks and doing our silly little dances together. Then she gave me that “I’ve had enough” look and we settled into a few books before I took her upstairs. And I have to admit that something caught in my throat when I read those words to her:

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.*

*Taken from a great children’s book called On the Night You Were Born by Nancy Tillman. Find out more here.

I have read those lines I don’t know how many times before, but tonight I couldn’t even get through the second stanza before I sat there, thunderstruck and weeping at the realization of what a gift this little girl was in my life. As I tried to compose myself and read through the blur of tears, Julia looked up at me with her wide, innocent eyes, knowing that this was not the usual program.

Okay, I’ll let you in on the mystery behind all the waterworks. Today marks the eve of a very important anniversary in the life of the Cook family and Julia especially. It was a year ago tomorrow that we handed her over to the Cardiovascular Team at Children’s Hospital for an eight hour procedure that made her life a year later even possible.

And it all seems so long ago now…

I took some time this weekend to look back at some of my posts from those seemingly endless days just to jog my memory of what we were facing. The pictures from the surgery day still make me gasp.

But the interesting thing is that we really don’t think about the scary stuff any more. The only reminders we really have is the fading scar on Julia’s chest and a very infrequent consult with her cardiologist.

A year ago, we were gutting it up for eight hours of surgery. Nowadays, we are gutting it up for the war of wills when nap time comes around.

A year ago, we were dosing out four different medicines at several specific times each day. Now we’re doing high fives if we can get a sometimes picky eater to down all of her peas.

It all feels so… normal.

Yes, there’s the morning ritual of her thyroid medicine and the regular (and frequent) adjustment of expectations that come with the territory when you have a kid with Down Syndrome.

But with God’s grace, the prayers of so many and the hand of a skillful surgeon who had the humility to know where his skill came from, our baby’s heart is just fine.

Thanks for celebrating January 17th – Julia’s Heart Day – with us!

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3 Responses to Heart Day’s Eve

  1. Karen says:

    Thank you for this encouragement. I trust and pray that in a year all our current hospital stay and string of surgeries will be over, although now that seems a lifetime away. Reminders like this one encourage us to hang in there. Thanks.

    (From Karen, Grace’s sister, mom to Abigail, a precious girl born with long-gap esophageal atresia, a TEF, an AV Canal & PDA defect, and trisomy 21. Hospital stay 4 1/2 months & counting)

  2. Heath says:

    Great post, and Happy Heart Day to you all!

  3. Jennifer says:

    Thanks for the reflection… so glad all our prayers were answered that day! She is such a sweet miracle! Happy Heart Day Julia! XOXO

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