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Thank you, Thank you, Thank you, Amen.

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splashvilleLately Annie has taken to saying, “Thank you, thank you, thank you, aaaaahhhhhhMEN” before meals. It’s her abridged version of the blessing my  parents offer when  we sit down to eat together. Somehow Annie, in her almost-two-year-old wisdom, was able to distill the prayer down  to its most important element, the radical and simple “thank you,” and she now says this prayer faithfully before every meal, peeking at us to make sure our eyes are closed. It’s hilarious and perfect, a new practice for us, and one that I hope sticks.

On Monday, I rejoin the working world after two years at home with Annie. They’ve been the sweetest two years of my life. They’ve also been the most challenging, humbling and rewarding. And sleepless. There have been days, especially during the winter, when I thought I would never make it out of this with my nerves intact. But there have been far more days when I look at her and know that I’ve landed the best job in the world. I never expected to be a stay-at-home mom, but between Annie’s medical needs and a rough job market it kind of just happened, and it’s been the best surprise gift I’ve ever received. We’ve had quite a time, us two.

A couple weeks ago we traveled to the hospital where Annie was born, where she had both surgeries, where she’ll have more, and where the doctors know not only her face but also her aorta, her single hardworking ventricle, the crazy route her veins take on their way back to her heart. She went in for a routine checkup, which happens every six months. I always get jittery before these appointments, wondering if she’s okay, or if things are terribly wrong and I’ve just been oblivious. The morning of her appointment I woke up at 4 am, unable to go back to sleep, staring at the ceiling of our friend’s guest room and wondering if that checkup would be the one where the other shoe would drop, where they’d tell us she needs to be admitted, that something isn’t right. But Annie was fine. She was more than fine. She sat still through her entire echocardiogram, eating cheddar bunnies and pointing at the Mickey Mouse cartoons that the nurse had the good sense to put on.  For more than three hours, the only tears she shed were when we pulled the EEG stickers off her belly, and then it was only for a minute. I was so proud. And then she slept the entire four hours home while I ate the rest of her cheddar bunnies and all the nervousness slowly dissipated. It will probably be back in six months, or maybe sooner, like when she gets sick, but for now we are back to our happy routine. Well, until tomorrow, when I have to step out of my elastic-waistband pants and fill out a W2.

It’s been two years since I had a steady, permanent job. And I’m glad to have one now. I’m  looking forward to using my brain in a new way, using my degree,earning a paycheck. And, it’s a new job, with all the swirly new-job feelings that come along for the ride. It’s going to be a huge transition for all of us, and it sort of kills me that Annie is going to be spending her days with someone who is Not Me. I would be lying if I said that my heart isn’t going to hurt on Monday morning, that it won’t crack in two, with half of it staying at home with that sweet kid of mine. I’m going to grieve, oh yes, I will. Because it’s been a magical two years, in all the hard and raw and real ways, and now everything is changing.Yesterday I got a massage, a Mother’s Day gift from my brother, who is one of the kindest people I know. As soon as the massage therapist dug her fingers into the knots in my back, I began to cry. Like, really cry, with my face smushed into that little donut pillow and tears dripping onto the floor. I had to ask her for a tissue and prayed that I wouldn’t get snot all over her nice table. The feelings pouring out of those knots were so real and big, and I had to drink a lot of water when it was over.

wateringIt’s way too easy to get stuck in a loop of loss, of mourning what I’m leaving as I drive off into the new-job sunset. These transitions, dammit, they’re so hard. And they haven’t stopped roaring at us, much faster than I’d prefer, and I guess it’s like that for all of us. But then some measure of grace taps me on the shoulder and reminds me of what a gift all of this is. That I’ve had these two years, when I only anticipated twelve weeks. That Annie is well enough to be left with another caregiver, one that doesn’t have to be a nurse. That I got a job and we may be able to breathe a little bit easier soon. That the universe is unfolding in ways that are so deep right now that I can’t help but feel a little lighter, a little better.

So I will grieve, and my heart with ache, and there will probably be days when I complain heartily to anyone who will listen. And I’ll come home each day to a bubbly tornado of a toddler who is going to love me anyway, who will yell, “Hey MAMA!” from the front porch, with whom morning snuggles will be a little shorter and a whole lot sweeter. Thank you, thank you, thank you, aaaaaaaahhhhhMEN.

Independence.

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2014-07-27 13.42.02Annie’s first birthday was a few weeks ago. We had the sweetest day. We rented a house at the beach with the grandparents and showed her the ocean for the first time. She loved it. She ate cake and ran at the waves and laughed when they knocked her down. We relaxed and the world felt a little more spacious. It was needed, and wonderful.

Nine days later we quietly marked the one-year anniversary of her first open heart surgery. I took her to the park and we played on the swings. I hugged her and held her a little more than usual, remembering the day a year ago when she was so enveloped in tubes and wires that I could barely find a patch of skin to touch, much less hold. I cried, way more than I thought I would, and told myself that it was okay to be kind of a wreck. I imagine that five, ten years from now I’ll probably still cry when I think about her tiny body and my mama’s heart and what they both went through that day.

I also gave blood that afternoon. I did it because someone somewhere will need it, and because I wanted to honor Annie’s fight, and because it felt right. Annie needed transfusions during both surgeries, and donated blood was critical. In the midst of all the incredible emotional support we received, those bags of B-positive that mingled with her bloodstream were tangible, visible evidence of a total stranger’s thoughtfulness (side note: I love that my daughter’s blood type is B positive).

Others’ thoughtfulness- and needing it- has been on my mind a lot since her 12-month checkup when the nurse asked me to describe Annie’s personality. “Clingy?” she asked, typing notes in her computer and reciting a list on the screen. “Happy? Independent? Fussy?” I paused for a second, then answered, “Independent. Happy, and really, really energetic.” And I thought, all afternoon and for days afterward, about having an independent child. This child who needed other people’s very blood to live, whose heart has been cradled in the hands of surgeons, who received nourishment through a feeding tube and oxygen through a ventilator. And how curious it is that “independent” was the first trait that came to mind. I mean, it’s true. A few days ago she wanted to leave me at the playground and go home with a sweet older couple whose dog she hit it off with. She glanced back and waddled away faster when she saw that I was coming over to pick her up. I love it, in so many ways, and I firmly believe her wide streak of self-determination is a big part of what got her through two major open heart surgeries and what will get her through the next one. But how much independence do I want to nurture? Yes, I want her to learn how to do things – many things- on her own, in her own time. I want her to feel the freedom to waddle away at the park, to discover and create and be on her own, directed by her own inquisitive little spirit and without a hovercraft of a mom fluttering overhead. And yet I also want her to know that it’s okay to need others. That needing help is human, and asking for it opens doors and hearts in the most beautiful ways. I want her to feel at ease with leaning on another for support, with knowing that she doesn’t have to do it all herself. I want inTERdependence to hold its own with independence, and for the two to complement each other in her life, in our lives. Unfortunately, I can be kind of awful at all of this.  I want to teach this all-important concept to my kid, but it has eluded me so many times. This happens a lot. Nothing has made me realize my deficits – and wonder how I can teach something I haven’t fully grasped- more than parenting.

I have a box that contains all the cards we received when we first found out about Annie’s heart well over a year ago. I’ve held on to stones and candles and symbolic gifts that people have given us- reminders that we’re being cared for and prayed for and thought of. Notes written to Annie before she was born. A prayer bundle and an owl feather and a strand of beads. All of them sit close to my heart and remind me how dependent on so many we have been. I think the first step I’ll take in teaching interdependence to Annie is to show her these things, early and often, one at a time, imparting the importance of each one on her little heart.  I’ll tell her that she was a total warrior during her surgeries but that she had hard days too, days when she needed extra support and extra meds and the doctors had extra concerns, and that none of this makes her any less of an amazing person. And maybe each year when her surgery anniversary rolls around I’ll give blood and as she gets older I’ll explain to her that someone somewhere will need it, just like we all need someone sometimes, and that this connection is what keeps us truly alive.

 

 

New.

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2014-04-27 10.15.02Maybe I’ll always be a new mom. Kind of an intimidating thought. We’re closing in on Annie’s first year, and I’m still feeling…well, new at this. Not the newborn new – we’ve settled in to a familiarity with one another that has helped to demystify the cries and ease the panic of not knowing what she needs. But yesterday she took seven – SEVEN- steps all by herself and my jaw dropped and the brand-spankin’- newness of it about knocked me over. Every day is something she didn’t do or see the day before. I jump to move things out of her reach every three minutes and wonder how to keep her safe while nurturing this limitless curiosity. How do you do that when your child is fascinated with the toilet bowl, peering and reaching into it every chance she gets? I’m often a step behind her, half a  step ahead if I’m lucky.

And yet the rushing-around-because-uh-oh-what-did-she-just-eat takes a back seat to the wonder wrapped around everything Annie experiences. Her first dip in a pool, chilly and vast. The sound of birds chirping. Dogs. Light switches. We could spend half an afternoon turning her bedroom light on and off. She studies things with such attention and focus, and all of a sudden I’m seeing flowers, shoes, and whisks through the eyes of someone who’s never seen them before.

This blog thing is also new, an attempt to soften and shed a few hardened layers. For the past year and a half I’ve chronicled our journey with our baby’s heart defect and open heart surgeries on CaringBridge,  a site that helps families keep others in the loop during medical events. In large part, this last year was a medical event. And our lives will continue to play host to more medical events that I ever imagined. But I’m ready to trade cardiac updates for something outside that framework, to lose the shell that grew over me in that hospital room, to look at the world with the joy of a child who hears just how loud a kitchen pot can clang for the first time.

Before having a baby I wondered if I was a little too crusty for the whole thing. I wasn’t really a “baby person” and still can’t fully claim that title. But my experience of motherhood, despite Annie’s achingly difficult first few months, has been one that keeps me on my toes too much to allow cynicism to take too deep a root. I mean, I have a front row seat to a child’s discovery of the world every day. So as I nurture her curious little spirit, I might as well tend to my own inquisitive side while I’m at it.

I hope I’m always new at this.