She turned five today.  FIVE.  Five years ago we met her for the very first time.  Five years ago right now was one of the worst moments of my life.  Five years ago right now was the first time I heard the words Ebstein’s anomaly.  It seems like such a distant memory now.  Part of me used to mourn in a way on her birthday, PTSD is a real bitch that way.  But now it just feels magical.  And triumphant.  She’s FIVE.

This feels like a bigger birthday for some reason.  Like it’s the complete end of toddlerhood and the beginning of real childhood.  She’s so fiercely independent.  She’s sassy as can be sometimes.  She’s moody as a teenager and she’s sweet and kind like no one I’ve ever met before.  She has a capacity for love like no one else I’ve ever met.  She’s my first born, the girl who made me a mama as I tell her.  I miss her sometimes, even though I spend every day with her.  She loves to draw and write and gets better at both every day.  She’s so wildly imaginative and creative some days, she lives in her stories all day long.  I love the way her breath smells.  She still has sweet smelling breath like a baby.  She cares and worries about other people so deeply it seems far too much for someone her age.  She “reads” to her baby sister and needs playtime with her every morning before she starts her day and every night before bed.  She calls her sister her best friend.  She makes up songs for her that are so sweet and touching.  She has dance parties that are amazing, but gets nervous when too many people watch.  She’s every thing I hoped and nothing I expected in a child.  She makes life better.  



A portrait of my daughters every week in 2017

We lucked out and got a late summer/early fall heat wave so I decided the kids needed one last beach day.  It was such a good decision.  I’ve never seen the water so clear at our beach, and they both loved it. 

Big: has found loads of confidence at the beach lately, which makes me immensely happy considering how unsure of herself she is in other scenarios.  

Little: loved raking her hands through the sand over and over again.  It was even relatively easy to keep her from eating every single handful she picked up.  Although I am fairly certain a few tiny pebbles made their way down. 


A portrait of my daughters every week in 2017

This week was a week of firsts for us.   

We sent our big kid off to public school this week, a change I was not excited for.  I so dearly love our little Waldorf school, with it’s safe, comforting staff, it’s warm, welcoming smells and those lovely pots of soup for lunch.  The gentle, child led days have my heart.  The change to public school, to loud colors everywhere, to rules and “centers” was jarring.  It’s a vast difference from the rhythms based in nature, the extended hours outdoors, and the freedom given to learn and explore without direction.  

There is so much chaos in our world, so much in our daily lives, and unfortunately, so much in our home day to day.  Our Waldorf school felt like a break.  Like a little sanctuary.  It was a place where she grew into the independent little lady that she is, and I desperately wish we could keep her there.  But alas, the price tag of private school just isn’t in our long term budget.  It’s something that leaves me with a lot of guilt.  Should I be going back to work full time?  Should I be sacrificing more so she can stay there?  But then if I worked full time, am I depriving her sister of the same slower childhood that working part time allows?  

My biggest child, her life, it’s going to be different than other kids.  So very different.  There are so many things that make her different.  Her heart.  Other health issues.  Things that eventually will make life more challenging for her.  Things that some asshole kid is going to make fun of her for some day.  But the environment cultivated at Waldorf, is so very different.  It would allow her differences, to be celebrated, to be protected.   It feels like the safe space that she deserves and I feel so angry with myself for not providing that for her.  I feel angry at a world where that kind of educational experience isn’t widely available.   

I went through the school calendar tonight putting all of the dates into my phone.  As I typed, the phone tried to be smarter than me, predicting what I was going to enter.  Only it started entering the events from last year, events from Waldorf, like the Halloween Walk or the Winter Spiral.  Events filled with magic and wonder that will no longer be part of her school experience.  I entered those dates and I felt a huge loss of the ideal experience That I can’t provide for my child. 

She’s adjusting well.  Tonight she drew pictures for me of all of the things she did at school today.  

 The baby didn’t have as much excitement this past week.  She got to try her first French fry (loved it) and she caught the worst cold she’s had to date.  She also figured out how to hurl herself head first over the side of the bathtub.  She may be small but she’s certainly a very resilient little baby.

This weeks photos, a tryptch of sorts.  The baby loving the screen door, and her sister imitating. 


A portrait of my daughters every week in 2017

Big: managed to catch a nasty little cold somewhere, and give it to both her sister and I.  I haven’t been so sleep deprived since the baby was a newborn. 

Little: climbs me (and everything else) like a mountain.  I wouldn’t doubt it if we find her on the kitchen table one of these days.  


A portrait of my daughters every week in 2017

This weeks photos are a little different. We spent the last few days at the Mayo Clinic, in Rochester MN. I’ve known for a while that at some point, we would ask for a second opinion from their team. This spring I decided that some point, was now. After her annual appointment, and subsequent holter study, some thing’s changed and medications were added and everything just felt very uncertain for us.  

The thing is, Ebstein’s anomaly is so incredibly rare that even some of the best cardiologists don’t have the experience to truly deal with it. It’s complicated and each and every case is different. I’ve read all of the studies and papers. I’ve downloaded videos and presentations. I’ve viewed webinars and talked to as many parents and people living with Ebstein’s as I can. I know what the evidence suggests. The surgery our home team was recommending isn’t the right course for this condition. I mean I get it, in a way it makes sense. If her low oxygen saturation is the obvious issue, you close the ASD (atrial septal defect) and boom, no more low sats. But here’s the thing. Ebstein’s is vastly more complex than just low oxygen saturations. When she turns blue, she’s actually using that hole in her heart. It’s serving a purpose. You close that hole and yes, you fix the cyanosis, likely exercise tolerance increases, but all of that pressure and strain remains, because the heart is still greatly malformed. And that pressure and strain increases over time without that hole to relieve some of that stress. So I made the call. It took some time to get our records there, and then it took a while to hear back. When we finally did they requested we travel there, for diagnostics, testing and consults.  

This week came and the appointments were finally here. We went up the day before and settled in to the hotel. Our girl was ecstatic to swim in the hotel pool, and knowing she wouldn’t be able to the next day due to a holter monitor being placed, we had to give her as much time as possible. We packed a lot into that first day in order to make sure she (and we) had some fun. The next morning we were up early and headed down to the main campus to start our day.  

Mayo is huge. Obviously. I knew that. I didn’t quite realize how massive until we parked on the 10th floor of the parking garage and were still staring up at one of the main buildings. Our first appointment was on the 16th floor. Walking in that first morning, I felt completely overwhelmed. By the size, the people, the space. As our day progressed and I got comfortable navigating, I started feeling something else. Humbled. Greatly and incredibly humbled. Everyone who is in those buildings, those patients, they’re all there because they have serious health issues. Thousands of them. The number of hotels and restaurants might lead you to believe you’re in a tourist town, but you’re not. They’re all there for that hospital. For those clinics. Rochester has a population around 114,000 people. Mayo employees approximately 34,000 of them. That’s 30% of the city’s population. 

It was an immense feeling, when it swept over me, especially when we saw other kids. Kids who were obviously “sicker” than my daughter. We got through our appointments relatively unscathed, which is saying a lot considering we had a 4 year old who needed blood work and an X-ray which she was terrified of, and a two hour long echocardiogram. We also had the 11 month old with, whose nickname is wild baby. Honestly the kids faired far better than my husband and I. I was pretty proud of how well they did.  

The next day was all consults, the last of which would be a surgical consult where we would get some definitive answers on when. When would she need surgery? What type? Waiting for the surgeon was stressful in itself. We were taken to a surgical waiting room, where families awaited news on their loved ones. The room was small and crowded. And we arrived with a stroller, a 4 year old and a really loud and tired baby. Luckily I got the baby to sleep relatively quickly, but then we just kept waiting. Two hours passed. When we finally had our consult, in the smallest prep room I’ve ever been in, the baby was awake again and the 4 year old was pretty over it all. But we managed to keep them entertained (iPad for for the 4 year old, wallet for the baby) and got through the consult. His recommendation was that she would need the surgery, and not the easier procedure recommended by our home team, in the next few years. He suggested she could potentially be part of a program using her own stem cells in the process.  

Overall the visit went much better than I anticipated, but the baby shrieked much more than I hoped (apparently eating in a restaurant now equals screaming time to her). We found some lovely restaurants, thanks to the recommendations from friends, found “the best toy store in the world”, according to the 4 year old and actually managed to get in some quality family time, something we rarely get with our opposite schedules. I’m sort of enamored with the whole medical system up there, it seems to work so flawlessly, and the knowledge and expertise is simply unmatched. Working in health care myself, I tend to be hypercritical anytime we visit a provider or hospital. In a really strange way, I’m almost looking forward to our next trip. 


A portrait of my daughters every week in 2017

Big: is finally showing interest in actually swimming rather than just playing in the water.  Unfortunately for her, she gets cold and purple incredibly quickly due to her wonky heart. 

Little: she really enjoys spending time at the beach and although she still tries to eat sand by the handful, it’s less than before.  


In case you’re not already following along on Instagram, head over there this week.  I’m giving away a surprise pack from Why and Whale, and it’s so fun.  You tell them a little about your kiddo and boom, a package shows up with high quality items curated just for you.  Head over to Instagram to enter!


A portrait of my daughters every week in 2017

Big: I told her we would start paying her an allowance due to how much she helps with her little sister.  Seriously this girl is so responsible sometimes it’s scary. 

Little: is officially pulling up and starting to cruise all over on furniture.  She even climbed half of our basement stairs today. 


A portrait of my daughters every week in 2017

This week I knew when I pushed the shutter which photos I would end up using. I love that feeling, when I’m making an image and I know it’s going to turn out exactly as I’m envisioning it.  It’s much more instantaneous than it once was, so it’s a little less thrilling, however I still wait to process my images until the day I post leaving a little bit of uncertainty.  Which is part of what I’ve always loved about picking up a camera. 

Big: had the most horrendous run in with a beetle today that I’ve ever seen.  I literally think she’s scared for life.  This is how phobias develop.  

Little: hasn’t had a proper nap in days.  We’ve been too busy and it’s definitely taking its toll.  I’m hoping that getting her back into a routine results in a happier girl. 


A portrait of my daughters every week in 2017

I worked a lot this last week, didn’t see these girls much and picked up my camera even less.  

Big: Said today that I yell at her too much.  <insert broken heart emoji here>

Little: Had her first splash pad experience today.  Was a little unsure at first but ended up loving it once her sister was running back and forth.