I read an article about New Yorkers who escaped the city during the height of the pandemic. The article was from the perspective of someone who stayed. And the article was all about resent.

This pandemic has created powerful feelings of resentment for some of us. For me. Feelings that for me, started as seeds, shortly after she was born. Seeds that sprouted and grew with each comment suggesting I was overreacting regarding the rules we laid out about illness. Rules that were dictated to us by doctors. Those seeds grew and grew larger, when people continued to hold fast to those beliefs, saying we could never shield her from illness. Seeds that blossomed when it was suggested we should just keep her home if we were so concerned about her getting sick. Seeds that turned into a forest, when twice during the spring of 2018 she got so sick that her oxygen saturations dropped in the 60’s, and she ended up hospitalized for a virus. Seeds that took over like an invasive species, when she had surgery and it became clear I had to pull her from school early in order to avoid her getting sick, as people I knew, people I considered friends, knowingly sent their feverish children to her classroom.

And this was all before anyone even whispered the words pandemic and Coronavirus.

That resentment hasn’t dissipated.  And it’s growing again.  I keep hearing in my head over and over, “everyone cares about the high-risk folks, until suddenly they don’t”.  Until it’s no longer convenient.  When most of the country was forced into their homes, watching their televisions, they loved the doctors and nurses doing the work.  They spoke of protecting those who were high risk.  But now? 

Those people are forgotten.  It’s all opening schools and businesses.  It’s socializing and vacations.  It’s shelving and hiding the high risk, and gasps and irritation when they don’t comprehend why you’re still living this way.  

It’s not as though I want things shut down forever.  I understand there are ways to do things safely.  But when my concerns, my decisions on how to keep my child safe are questioned, it’s incredibly difficult not to feel resentment.  When I know there are people who think I am overreacting and brush it off as being crazy.  How dare anyone try to dictate how I keep my child alive, when it’s been such a huge part of parenting her for her entire life.  How dare anyone who hasn’t had to sign a consent listing death as a possible outcome have any sort of opinion.  How dare you even think those thoughts when you haven’t watched someone perform CPR on your child.  If you’ve never sat bedside praying for your child to live, you just can’t understand.  Period.

And yes, I know that much of this thought process for me is trauma driven.  It’s a trauma response.  I live far too much of my life in fight or flight mode.  But I’m also a very logical, fact driven person.  And when I know I’m using trauma thinking, that’s when I look at the evidence to make sure I’m not just using my fear to drive my decisions.  Evidence like she IS high risk.  Her heart is wonky.  She still has arrhythmias, and left ventricular dysfunction just to name a few.  Evidence like the JAMA study which looked at cardiac MRI’s for people recovered from COVID, that showed 78% of them had abnormalities of the heart and myocardial inflammation, even in mild cases.  That 60% of those studied had elevated levels of Troponin, which indicates heart damage.  Anecdotally, I know parents send their children to school sick all the time.  I was in my daughter’s classroom every week throughout her entire public-school career.  There were sick kids every day.  I can’t imagine a pandemic is going to change that, no matter how much we think it should.

One year ago was the last day she was in school.  I remember telling her teacher the kids wouldn’t be coming back.  I knew what was coming, and I knew things were shutting down.  My children have been home for a year.  And they’ve missed so much.  But so many people have lost so much this year.  And we’re all still here. 

So here I am. Resentful. And I know I’m not alone. But it feels that way. As much as I try to shove it down, to look at it from their perspective, to be a better person, I just can’t. I’m still here. We’re still here. Making decisions based on evidence, guidance, and gut instinct. It’s how I’ve parented her since she was born. How she’s stayed alive. How I found the best surgeon in the country to care for her heart. I don’t question my decisions. I’ve learned from the nurses in my life how to find the data. I’ve learned from other heart moms that most of the time, I’m the person in the room who knows the most about my child’s heart. I’ve learned from parenting a child with a heart defect to trust myself, and to advocate for my child like no one else will.

So here I am, feeling full of resent. And as much as I wish I didn’t feel it, it’s also ok. We live in a country where we don’t prioritize taking care of one another. Where capitalism trump’s humanitarianism. I’m ok with resenting that sentiment and wanting something better. Because I would choose these children every day, and in the end, that’s all that matters.

Once upon a time there were two little girls. These little girls were born into a world that was destined to change. And change it did.

Along came a virus, and everyone went inside of their homes. And the protectors all did their best to make sure everyone stayed safe. And the people loved those who were working so very hard to keep them safe.

Days became weeks, and weeks became months, and the people grew restless. Eventually, some of the people fought to return to normal, even though it would mean the death of others.

And so some of the people went back to their lives. Some said it was never real. But the girls stayed home, and they stayed safe. Because it was real, and it kept growing. People kept getting sick. People kept dying.

And with the virus grew another plague. A plague fueled by hatred. And it grew just as fast and furious as the virus.

Until one day, when they announced the King was sick. And the people thought maybe, just maybe things would change. Maybe people would take it seriously now. But the King sat on his mighty throne and said everything was fine. And some of the people listened to him.

But the girls still stayed home. They grew older. They missed their old lives, but they found peace and happiness in their new ones too.

The virus continued to spread. People kept getting sick. And they kept dying.

One of the girls has already fought for her life, many times. Her parents vowed that she would never have to do it again, if there was anything they could do to stop it.

But the girls were safe. Safe in their castle, safe in their tower. Safe, where the outside world couldn’t reach them. While the virus raged on outside, there they would stay until one day when they hoped world would finally be safe enough for them to leave again.

My sweet, sassy baby is now three. Which I suppose means I should stop referring to her as a baby, but I know I won’t. She says I should keep calling her a baby, except when she’s a grown up.

She is so very full of life, and fire and magic. She’s brave and fearless and shy all at the same time. She told me that her favorite part about today was going to sleep, which is ironic since she’s refusing to go to bed tonight.

I love this child, more than I ever imagined I was capable of, and I’m so glad I get to call her mine.

Today she is seven. We’re big on birthdays in this family, but after this year, this birthday feels even more important.

I love watching her grow. I sat her in my lap tonight and told her that when she was a baby, I wanted her to stay little forever, but that every year she’s proved that as she grows, she’s even better than the last. Spending time with her is genuinely wonderful, and so rewarding. Watching her grow into a kind, curious, creative person is such a gift.

I love being her mom, and I can’t wait to see who she becomes in her seventh year on this planet.

I’ve been thinking a lot about nurses this week. It is nurses week after all. I’ve had a lot of reasons to be grateful to nurses. There was the time when I was pregnant and my husband spent four days hospitalized for an unexplained neurological episode, and then there was the nurse who handed me a breast pump before I even knew what was happening after my baby was whisked off to the NICU, and the PICU nurses who knew how to comfort the baby I couldn’t hold better than I could.

I work with nurses. Almost every one of my coworkers is a nurse. But the past two weeks renewed my deep respect and love for the women and men that make up the profession.

The first nurse we saw after surgery made waiting for the surgeon to tell us how things went with our child’s heart surgery seem normal. Later she advocated for my child, who clearly needed more sedation, and ran out to get a doctor demanding propofol when she kept waking up while still intubated. Our second nurse, watched our girl intently while we got some much needed rest. The third nurse we met, helped us plan to get her extubated, let us know how difficult it would be during the time which she was awake, but still on the ventilator. She helped when she vomited, got her up for the first time, carefully combed out and braided her hair after two days of sweat and tangles. She made plans for keeping her pain and nausea at bay. She helped her use the bathroom. Her hands, and four other pairs of nurses hands, helped her walk for the very first time. Her nurses talked with me, they recognized my anxiety, explained to me what I needed to know when I asked question after question. They asked about my girls, they told me about their kids. They made it feel more normal. Her next nurse brought us her beads of courage. Talked to me about what would happen at discharge, about incision care. Her nurses taught me how to pick her up without hurting her. They taught me how to clean her wounds. They showed me when she was no longer a high priority patient and I could do most of her care myself. They rallied when other patients in the ICU were crashing and desperately needed more help. They helped her feel less afraid and let her know it was ok to cry and scream as they removed lines and chest tubes. They called her Wonder Woman and Spitfire and Super Girl. They cheered for her daily.

Her nurses literally kept her alive. Just like when she was a baby. Yes there were doctors, and those doctors have so much knowledge, but the nurses, they are the ones monitoring, the ones recognizing when there’s a problem and making a decision based on that information.

I wish I could do something for those nurses, to let them know how much they do. To show them how appreciated they are. That what they do matters, every day, so very much. That their actions, are equally as important as the surgery itself, in saving her life.

So happy nurses week, to those nurses, and all nurses who go above and beyond just to care for those who need help the most. You are amazing.

I realized I never updated with her progress in this space. She was discharged six days post op, after which we spent another four days in Rochester. She slowly returned to herself, and now that we’re back home she almost seems like she’s back to 100%. There’s still bruising, and incisions to care for, there’s fitful sleep and pain in the morning. But there’s also her humor and smile, her desire to see her friends and those she loves most, and a deep need to be completely healed. I’m so amazed by her strength and feel so very lucky that she’s ours every day.

Dear sweet supporters of my girl,

I’ve had a lot of questions about what kind of surgery our girl actually had, or what her diagnosis is, so I thought I would share. You can see some of my previous posts about her heart here, here, and here.

The procedure she actually had was a complete repair of Ebstein’s anomaly, by modified Cone technique with total valve repair, right reduction atrialplasty and subtotal closure of her atrial septal defect. In plain language that means they created a valve she didn’t have before using her own tissue, partially closed the hole in her heart and surgically reduced the size of her heart. You can see the size difference in her X-ray images pretty clearly.

Her echo’s look completely different now too. This doesn’t mean her heart is fixed, her heart will never be “normal”. And she might require further surgeries. Right now she has a lot of healing left to do, her right ventricle is performing relatively poorly, as it’s never really had to function before. It will likely take a few months to heal and remottle before we really see the full impact her surgery has had.

Here’s some info on the Cone Procedure from Mayo Clinic:

• This video shows a quick animated overview.
• This one is a video of an actual cone surgery, so skip it if you’re squeamish.
• PBS aired a documentary last fall about the Mayo Clinic that was pretty cool. If you can find it on some day, definitely watch it. There’s a section about a young woman with Ebstein’s anomaly as well, and scenes from the operating room with our surgeon.

I’ve posted most of my updates on Instagram, but in case you’ve missed it, she’s doing really well. She’s making tons of progress everyday, and likely graduating to the step down unit tomorrow.

We report bright and early tomorrow morning for surgery. I plan to post most of my updates on Instagram, because it’s easiest. You can follow along at https://www.instagram.com/roseandthewildfox/. Please keep her in thoughts tomorrow, send love and light, prayers, pixie dust and any other form of well wishes.

This girl took the first big step in her heart journey today. She had a cardiac catheterization, which involved an electrophysiology study. In non technical terms, that means they used tubes and wires to check out the electrical pathways and conduction in her heart.

She did amazing. She was so much calmer than I expected before the procedure. We gave her a new sketch book and markers and she got lost in her own world of art.

She threw them a little curve ball during the procedure, it turns out she has one more little anomaly, that being that she doesn’t have venous access to her heart through her legs. Which basically means the veins from her groin that they usually use, don’t actually travel all the way to her heart in the way they’d expect. So they had to go in through her neck to do the procedure. The plan was to track down any accessory pathways, and get rid of them, but she didn’t end up having any so in a way we got lucky.

She’s home now. Resting, albeit somewhat uncomfortably. Slowly getting back to herself. She’s supposed to be back to normal by the weekend. She gets to come off one of her medications now too.

She was so brave, and did so well. I could not be more proud of her. It gave us a small glimpse of what to expect when she has her big surgery next month. It’s an experience I’m dreading, but plan to embrace and face with as much courage as she showed today.

I can do hard things. Because she has to do hard things. That mantra will be running through my head for the foreseeable future.

We can do hard things.

This space has felt mislabeled to me for quite some time now.  It’s pretty clear I don’t post recipes here any longer.  So it felt like time for a change.  I know when it comes time for surgery that there will likely be many people who want updates along the way, and getting texts or messages or emails asking for them sounds like a lot.  So I think this space will be where I provide those updates.  And it felt right to change the name ahead of that timing.  So here it is, Rose and the Wild Fox.  A space with loads of possibilities and new directions.