A portrait of sleep in my family every week in 2018

Sometimes I watch her sleep, because she’s my last baby and I want to remember exactly how wonderful sleeping babies are when they actually sleep.

A portrait of sleep in my family every week in 2018

Her eyes kept fluttering closed while she laid on the couch, but the six year old nap resistor won, and she stayed awake.

A portrait of sleep in my family every week in 2018

I didn’t manage to get a photo of anyone actually sleeping this week, so the closest thing was this big kid pretending to be a baby in her sisters Moses basket turned doll bed.

A portrait of sleep in my family every week in 2018

Big beds have a way of making toddlers look like tiny babies.

A portrait of sleep in my family every week in 2018

She’s managed to fall asleep in random places around the house lately, usually while nursing or after she’s carried in from the car.

A portrait of sleep in my family every week in 2018

Their bed sharing is pretty darn sweet sometimes.

My littlest isn’t so little anymore, because today she turned two. I wonder when I’ll manage to make the switch from calling her “the baby”. She’s still my baby, but also so very clearly not a baby. She’s so verbal, and brave and smart. She got a little piggy dress and a pig themed party to celebrate, complete with pork as the main course (oops).

Today was her fifth Heart Walk. I didn’t raise money this year. I didn’t post about it on social media. I didn’t send out emails. It felt too uncertain somehow. Like posting about the Heart Walk, without sharing what was happening in our own lives was dishonest. So I stayed silent.

Life has come at us fast recently. There were wonderful and amazing parts. Like taking the kids on their first vacation to the magic of my childhood. But there were hard parts too. Going to the Mayo Clinic again. Having so much fun there, making it a vacation too, until suddenly it wasn’t fun anymore, and it wasn’t a vacation.

Then it rained. And it rained a lot. And our backyard was a lake, which was kind of cool. The house was ok, so it was sort of fun.

But then my office flooded. And then it closed. Indefinitely. And it’s silly, because it wasn’t MY office. It’s a building owned by a big company, and I was one of hundreds displaced. We found other places to work. But it hit me hard. Because everything I had there was lost. My camera equipment for work. Everything at my desk.

My kids art.

Her art. The gift she gave me for Mother’s Day hung on the wall. And it’s gone. Just like that. And maybe it was a delayed reaction or just everything piling up, but it killed me. And I had to pretend that it didn’t, when she reminded me that I had taken it to work to hang at my desk. I had to try not to start crying.

I have to do that a lot right now. Try not to cry. Everything just feels bigger. And harder.

We came home from Minnesota and moved the guest bed into our room. We have two king sized beds pushed together in our room now. Because I HAVE to have her near me. Because sleeping in the next room over felt too far away.

She’s six now. She started kindergarten. And I’ve had to tell people I’ve just met that my child will be having open heart surgery during her kindergarten year, because she wears it like a Medal of Honor and wants everyone to know.

My child will be having open heart surgery.

It’s hard to say. It gets stuck in my throat.

We’ve known this since the day she was born. But that doesn’t make it any easier. It’s almost worse. Because she’s a person now. She’s a human being with feelings, and dreams, and fears and expectations.

And she’s scared. She sat in a room and listened to a surgeon she barely knows talk about her heart and surgery and outcomes and she got scared. She’s no longer too little to understand.

My child will be having open heart surgery.

I feel like I have to say it to myself. There’s a part of me, a HUGE part of me, that’s still looking for a way out. Technically it’s preventative surgery. We’re not doing this because of some urgent need. We’re doing it now, instead of waiting for her heart to fail. Because it will fail. Someday. No matter how much I try to convince myself it won’t. There’s no getting around her anatomy.

My head started swimming in that appointment. I literally felt as though I might pass out. As we walked down that long hall to the next appointment, I couldn’t even look at my husband. I knew if I did I would loose it. She was beaten. She didn’t know what exactly was happening, but she knew she was scared.

Outside a storm was rolling in. We were high up, in a waiting room full of glass windows. Rather than handing her an iPad to try and get her to tune it all out, I took her hand and walked her to the windows. We watched the clouds and the storm as it grew closer. And somehow it felt like the sky knew me, and it felt what I was feeling, and it saw her fear and gave it a name. And we both grew calmer watching that storm. It gave us the breath that we needed before heading in to her next appointment.

We won’t be doing surgery tomorrow, or next week, or even next month. But it will come, and sooner than I hoped. But anytime would be sooner than I hoped.

I hesitate sometimes when sharing this. I feel like I need to wait until it’s over. I don’t share hospitalizations until discharge. Because I don’t want to hear “I’m sorry” or “God only gives us what we can handle”. Fuck that. But I’m supposed to be an advocate for CHD. Or at least I see myself that way. Help to educate people. So I’m going to share our journey. What I can. When I can. And this is a step on that journey.

A portrait of sleep in my family every week in 2018

It’s often hard to keep clothing on this child, so naps and bedtime are often missing at least one article of clothing. Which subsequently makes me adjust the temperature in our house based off of what she’s wearing (or not wearing) in order to keep her sleeping.

My big kid turned six this week. I don’t even know how that happened. She’s in kindergarten. She’s practically a grown up. Or at least I tell her that almost daily. We threw her a pony party, and she had just exactly as much fun as I hoped she would. There were friends, and activities, and her favorite chocolate cake with blackberries. This sweet girl, she’s turning into the most amazing person. I can’t wait to watch her keep growing.