“The trick is to enjoy life…

I hate today. I’m so glad I never have to relive it. And I’m so glad I got it.

Never again do I want to fearfully confess to Matt that our baby resembles the picture of a near-death baby I saw on Instagram last summer.

Never again do I want to go to the pediatrician for the third consecutive day because Annie cannot keep anything down or in.

Never again do I want my sweet friend, fellow HLHS mom pediatrician to look me in the eye and urge, “Go, now. Don’t stop by home for clothes. Don’t stop on the side of the road for bad weather. Go to the ER now! If you can’t make it on your own, call an ambulance.”

Never again do I want to hand my baby back over for the night to an ICU room that is so intensive a parent is not allowed a place to sleep.

But I’m so glad I got today.

I’m so glad that today, I’m the momma Annie squirmed to reach from underneath the echo probe.

I’m so glad that today, Annie livened up enough to repeatedly bat her nurse’s back in protest to the every-2-hour blood draw.

I’m so glad that today, three medical personnel who cared for Annie referred to her as “their Annie.” I’m so glad that today Audrey had people who stepped in and loved her well.

I’m so glad that today Annie got a little better.

I’m so glad that today God provided enough mercies for today. I’m so glad that today ends with hope that He will again tomorrow too.

22 22 The steadfast love of theLord never ceases; his mercies never come to an end; they are new every morning;
    great is your faithfulness. -Lamentations 3:22-23

…don’t waste away your days waiting for better ones ahead.”

No Real Christian Believes That

God does everything on purpose. But don’t you wonder sometimes if He really meant to do all the awful things He does?

Like let your dad get cancer. Like let your son die at 11 years young. Like forget to form half of your baby’s heart.

I do.

I’m weary. I’m exhausted. I live with constant, nagging, pestering worry over when Annie’s heart will finally fail. If it will finally fail. If it will ever “declare itself” once and for all, as her cardiologist says.

I find comfort, though, in knowing that all the awful details are known by the One who can actually do something about them. I don’t know if He will choose to. But that’s up to Him.

I know that whatever He does or doesn’t choose to do is informed with love and compassion for those of us wondering what in the world He could be doing in the midst of all this pain.

Sometimes it’s excruciatingly painful to enjoy that belly laugh today that I know could be gone tomorrow. But all the time it’d be more painful not to. Sometimes it’s excruciatingly painful to imagine that God really does everything on purpose. But all the time it’d be more painful not to.

“No real Christian believes that”…but I do.

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Who am I?

Are you someone you don’t want to be? Me too.

After 24 hours of Annie huffing and puffing out of breath, even though the only finish line she crossed was a nighttime feed, we decided to text her cardiologist.  He was concerned because her oxygen saturations were dangerously low, her heart rate was dangerously high, and her back burned every hand that touched it. He suggested a trip to the pediatrician whose findings would likely lead to the cardiology clinic at children’s hospital.

I dropped Audrey at school, like any other Tuesday. Annie fell asleep in her car seat on the way home, like any other Tuesday. I got a coffee at Chick-fil-A, like any other Tuesday. Then I prepped the house for never coming back, like every other Tuesday…wait no! I quick spread the beds, filled the floor baskets with the scattered toys, and set all the library books out in one obvious stack. I moved tonight’s thawing dinner meat from the countertop back into the freezer drawer. I shoved a portable toothbrush, a phone charger, a tower of diapers, and several bags of breast milk into the diaper bag.

In the middle of toting the trash bags down the stairs, I realized the robotic actions that had taken over. I was in heart mom survival mode: Stay calm, prepare all you can, ask questions, don’t panic until you have to.

And I realized that I have memorized the task list titled “You Might Never Come Home Again.” I shuddered. It’s been 7 months since we’ve been in a hospital with Annie, but I still know what to do. I’m so very different now than that first frantic, frazzled time I scanned each room with a blank stare wondering what to cram into a small overnight bag that turned into an overmonth suitcase.

We spent 3 hours in the pediatrician’s office this morning. She was afraid to let us go home. I personally was afraid to stay after I had to bargain with the nurses to give my purple-faced screamer a break from nose suctions that were clearly sending her into a “modeled cyanosis.” Um yes, she cannot both breathe and scream when we just noted that she can barely breathe while simply sitting. Tears dripped down my cheeks, and I had to look away from the victim I pinned down out of love and in hope for health.

That straight jacket swaddle was preceded by a clear cylinder prison that locked Annie’s arms in place high over her head and snapped securely shut around her rib cage: chest x-rays were easier in Philly! And the straight jacket swaddle was followed by me wrestling her flat and still again to receive an antibiotic shot to hopefully jumpstart some healing.

But we got to come home. Our cardiologist agreed with our pediatrician that there was nothing more to do, except watch Annie closely, call if ANYTHING changes, and go back for a checkup tomorrow morning. When maybe she’ll wake up without eyes snotted shut and breathing at a normal rate. We will see.

I don’t want to be the person who slips into mindless survival mode. I don’t want to be the person who knows about sats and heart rate and respiratory rate and cap refill.  I don’t want to be the mom holding my child down for both of our dear lives. But I am.

And so I’m choosing to find joy in each day. Like when Annie feverishly gulped her bottle this morning then let out a loud belch and repeated with exact intonation. “I burped!” then her snotty eyes cracked into a smile. Like how Annie pressed into me tightly and sang herself to sleep while we waited for the Tylenol to kick in and the shot to work and the doctors to talk. Like how while I worried about Annie’s coming appointment SEVEN friends offered dinner and company and prayers.

I’m learning there are countless small joys in every moment. Even small joys are to be rejoiced in.