It’s Always Enough

I have to write this now while I believe it.  Because when it comes time to live it tomorrow morning at 5:45,  I’ll need to already have it etched in my soul.

When it comes time to board the plane waiting for us in the still dark night, I need to believe that I’ve had enough sleep.

When it comes time to hug my 5-year-old goodbye for who knows how long, I’ll need to know she’ll be loved enough while I’m gone.

When it comes time to kiss my husband farewell to live separate lives fighting for our daughter’s life, I’ll need to be reassured that we’re both doing enough to care for our family.

When it comes time to check into Annie’s CHOP hospital room tomorrow afternoon that is currently reserved for us, I’ll need to convince both of us that we’re brave enough to live there again.

When it comes time to listen to the doctors about Annie’s care, I need to know that they’re smart enough and caring enough to partner with me in advocating for her life.

It’s no secret that I regularly ask God for something else. For extra. For another. For more.

-More time as a family of 4 together.

-Better health for Annie.

-Extra joy so that she doesn’t know what’s happening to her failing body.

-Another chance to love her well and enjoy her for a too-short moment

-Even just one more day that she wakes up healthy enough, and I wake up brave enough, to do it all over again.

What I’ve been reminded of lately is that even though I want so much more than what I’m right now getting, what God gives is always enough.

He’s giving us enough courage to do what He’s calling us to do.  He’s giving us enough clarity to know which route to take. He’s giving us enough financial provision to travel across the country for Annie’s care. He’s giving us more days, more doctors, more possible solutions for more time with Annie.

Annie is sick. So sick that I don’t want tomorrow to ever come. I’m afraid of what the doctors will say when we check into the 6th floor. I’m afraid of the truth about what’s wrecking Annie’s body. I’m afraid of what feels like too few options we might have left.

IMG_3336

I want to stay here in the hallway eavesdropping on Audrey reading. I want to stay here in the hallway watching Annie sleep. But as cozy as it feels, it’s not safe here for Annie anymore. IMG_3334

So Annie’s button down pjs are zipped up tight, ready to be secured over IV lines tomorrow. My travel shampoo bottles are filled, ready to be perched on hospital bathtub edges. Our fuzzy slippers are squished down in, ready for snuggling and healing in the eerie safety of a Philadelphia hospital room.  IMG_3335

And in 12 short hours, tomorrow will surely come. But I can be certain that even though I feel so not ready, that what God gives will be enough.

Advertisements

When You Feel Like Wasting It

In November, I tricked myself into believing that we just might actually be a normal family now.  After 4 exhausting years since Annie’s pregnancy and broken heart diagnosis, we had finally let our guard down.  It really didn’t take a lot of convincing. I had all the tangible evidence I needed.

Annie’s 3 surgeries were behind us. At her November checkup, her heart was functioning normally, a welcome shock to everyone. She was enjoying friends (and her favorite teacher!) IMG_1553and centers and lunches and naps at preschool two days a week. She was twirling and giggling and spinning and smiling in dance class every Monday afternoon.

IMG_5485

Collectively we began dreaming about our normal family’s future, voiced and hoped loudly by Audrey, “When I’m 17, Annie will be 15! And when I’m 83, Annie will be 81! And next year when I’m 6, Annie will be 4. See, you just take off 2 from my age and that’ll be Annie’s age for the rest of our lives! Right, Annie?”

How do you break it to yourself and your dreaming daughters that we were all wrong?

The first clue came when each morning Annie’s face didn’t look normal anymore. It was puffy and swollen just enough to make us wonder. That same week, Matt and I noted how Annie was outgrowing her shirts…but not really her pants. Maybe she snuck some holiday helpings we hadn’t noticed? We knew that was too wishful of a reason that her tummy tightened and rounded. To confirm our findings, I had her step on the scale. Five pounds might be fair for me during the month of November, but for an active 3-year-old, the weight gain proved my suspicions.

Something was going wrong in Annie’s body. Her local cardiologist agreed and asked to see her in clinic the next day. IMG_3115

Annie endured the usual tests: echocardiogram, EKG,  blood pressure, pulse ox. But we added an assessment that always tells the truth for Annie’s complex body: “a poke.” As expected, the results of Annie’s blood test told us the truth that we never wanted to hear.

Annie’s body is presenting with PLE symptoms, a rare but serious complication that can come as an effect of her Fontan physiology. The craziest part is that her once-failing heart is happier than ever. But now some other parts of her body are not responding well to the new way her body works since her August surgery.

The worst news of a PLE diagnosis is that it’s incurable. The best news of a PLE diagnosis is that her doctors in Philadelphia would like to do a little more investigating to see what might’ve set these symptoms off in Annie’s body. The symptoms came fast (1.5 weeks). The symptoms seem so soon after a successful surgery. But all of Annie’s care team agrees: the symptoms are very real and very concerning.

We are currently waiting to hear from the scheduling center at CHOP to confirm a date when they will perform a cardiac cath on Annie. The cath will allow her doctors to investigate and trouble shoot these symptoms. The investigation will help them decide if she actually needs an official PLE diagnosis or if there’s some type of fix for the sudden onset of her new symptoms.

Right now, we have a happy girl who’s smiling through the beginnings of regular days mixed with fact finding here in Little Rock. She’s proudly showing how to breeze through 24 hours of a holter monitor that assessed her heart rhythm. Right now, she doesn’t feel bad. She has no idea that anything off is happening inside of her. She’s resilient, brave Annie going to school, playing with friends, fighting with her sister.IMG_3135

But right now, as Annie’s mom, I know there are a lot of unknowns. A lot of what ifs. A lot of serious, scary maybes. Even some heartbreaking probablys. And I know that our normal family plans and expectancy were a lie I let myself believe.

Annie’s CHOP doctor assured me that we are in fact quite the better-than-normal family: staying together, loving each other, relentlessly advocating for the life of our child, believing when there’s not a lot left to believe in, passing on a faith that works to the next generation. While I certainly believe him, I think I feel tired of being known in all the hard ways. I’m ready for our family to be normal in some small, unnoticed ways.

We’d appreciate your prayers that we can keep believing that God’s plan for our family is the best plan for our family and that He’ll give us courage to live out what He’s called us to.