Things To Write Down in this Historic Moment

Recently on the Ten Things to tell you podcast there was an episode entitled ten things to write down in this historic moment. I've been sitting with the questions for a little bit. I won't write them all here, but there were a few that seems like great memory and history keeping.

What do you remember about March 2020?

The overall feeling that I remember from March is absolute disbelief. The reality that was hitting the country seemed completely impossible. I was just getting over being sick for a month. I barely had a voice, I'd just returned back to work the second week in March and then the world crumbled. I remember things changing by the minute, things closing and being cancelled every hour, until there was nothing left open. Things you could never imagine being cancelled in March, like professional sporting events and school, now seem almost unbelievable that they ever happened in the first place. I can't imagine them ever happening again. The mind switch has been quick, it's been painful, and it's been nonstop for the past eight months. 

The biggest different between March and now is I remember feeling hope in March. I remember thinking it would last a couple weeks, maybe at most a couple months, then things would be under control and life would return to "normal." I foolishly rested my hopes on the nations leaders to get us through this national crisis. That is what has always happened previously in the two hundred and forty four years of this country. There has always been tragedy and despair, horrible acts of terrorism, great wars, and in all these previous times the nation turned to it's leaders to help them through it. The leaders gathered the greatest minds in the world, not always people who agreed politically, but the greatest minds and found the best, safest way forward to rescue the nation, to win the war, to find the terrorist and bring them to justice, and on an on and on. I remember the unity we had as a country after 911, no matter your political party. That unity and a sense of any form leadership was what ended up being missing from this great, possibly greatest, tragedy in American history. 

There was a brief month or two of national unity as we all sheltered in place, but it quickly disappeared as it became clear no help was coming and we were in this for the long hall. No one was gathering the greatest minds to work day and night to find a solution. There were no great summits or tasks forces being formed with the countries leading physicians and scientist. We weren't welcoming foreign aid or support. As the "leaders" did nothing hundreds of thousands of Americans died and all sense of hope, or an end to this nightmare began to vanish before our eyes. March felt hopeful. I don't feel that way anymore.

How did COVID change your year?

Books will be written on this very subject for decades to come. The short answer is every single activity, emotion, thought, and moment of the past nine months was changed by COVID. The way we do every last thing has been changed. The sheer amount of brain space it takes to filter every decision you're making through the lens of "is this safe, is this activity something that is worth potentially dying for, is this the responsible choice" is the most exhausting thing I've ever been through. It is never ending and it is made much more difficult when you feel that the majority of society isn't using this filter at all. 

We've gone nowhere and done nothing for a solid year, yet have never spent so much time together. We haven't seen Zach's family since last Christmas and we're unsure when we'll be able to see them again. We don't go to stores anymore, our groceries show up at our doorstep now.  We rarely went out to eat before, but I can count on one hand the times we've been this year. We missed birthdays and celebrations of all kinds. The holidays feel dangerous as you think about people gathering in large groups. This use to be something that was coined the reason for the season, but now it feels scary.  

My kids are almost halfway through the school year and it feels like they've only been to the building a handful of times. They have missed field trips, parties, assemblies, choir, and every other fun thing that usually goes along with school. There are no hugs from their teachers and friends when they are there. Everyone's little faces covered with mask and staying away from each other. They don't ride the bus or play with friends and as of last week they will be doing virtual school for the rest of this semester at least. No one can come to our house, there are no sleepovers, or birthday parties to attend. We haven't been to church since the beginning of March and it feels like one of those things that I'm not sure will ever feel safe doing again. The list of how life as we knew it has been changed goes on and on. 

What do your days look like nine months later?

Until nine months ago I put exactly zero thought in a "routine" for our days. We just went to where we needed to go, work, school, sports, ect, then came home, ate dinner, did the dishes, showers/baths, read books, watched tv, then went to bed. Rinse repeat with different activities everyday. The routine of our life had always involved, for the most part, things happening outside of our house. If we wanted to have a family activity or day of fun, it involved leaving our house and going somewhere else, whether that was to a family member's house, to see friends, to the zoo, or a museum, but somewhere else. There was just schedules to keep, doctor's appointments to go to, field trips, parent teacher conferences, games, parties, and on and on. Looking back on it I cannot believe there were days where I as home with no children. So many things that were completely ordinary last year are unbelievable now. 

Fast forward nine months I am constantly thinking about and tweaking our daily schedule to try to find things that help make the days go smoother. For a long time we did exercise time first thing in the morning, then we drifted away from that as the morning got colder and moved exercise time to mid afternoon so we could still do it outside. Now that the kids are fully virtual and we are back to being fully locked down, not seeing family or friends at all, we are home everyday. We start school between eight and nine. I have resisted the urge to make designated times for certain subjects, which is how I would want to have our days scheduled, and instead have tried to give the boys some choices about when to do what during their day. They take frequent breaks, to play with Thatcher, go outside, play piano, or do something that isn't school. Lunch is early, between eleven and twelve, then when Thatcher takes a nap the big boys tackle their harder subjects since I can give them undivided attention. 

My goal is to have school done by two or three, including the extra things that have been added over the past month or two for each child. We've added spelling words for both and extra reading comprehension for Rowan, along with reading time, all things that months later we still argue about everyday. We've changed our school to do lists to things they can do unsupervised and things that they have to have me sit with them to do. As new material has been introduced the more I have needed to try to actually help teach them the material, with mixed results. Everything needs to be looked at before they turn in it so I can see if they are understanding what is being taught. I am not confident they are learning anything, but that is where we are right now. 

The evenings and weekends are just a continual struggle to find new ways to have fun, at our house. We've never been more creative about things to do at home. Don't get me wrong we watch a lot of movies, especially with it getting dark earlier and with it being colder, but we've also come up with all sorts of fun things to do that we would have never thought of if we weren't forced to be home. Nine months later we don't have grand themes for our activities like we did in the first months of this, but sometimes we still come up with new fun ideas like table top game tournaments with the air hockey and foosball tables that we've gotten over the past few months. 

Our days are long and usually emotionally draining. My children have faced disappointment after disappointment. They have lost so much, not the least of which is social interaction with other children. They miss their friends. They  miss having neighborhood kids over to play. I hate all of that for them. Some days their losses are harder to handle. Some days my losses are harder to handle. There are still, nine months later, a lot of tears shed over what we've been through and how far we still have to go. The days at home, are exhausting even though we are technically doing nothing.

The other big difference from the beginning of this is that I no longer can be cancelled. The new policy of the hospital system as a whole is that no nurses are to be cancelled, every staff available is to be utilized, somehow, whether at children's or the adult tower. This has come with huge anxiety for me as I literally have no idea what I will be doing at work from one day to the next. I've spent a lot of time n the NICU, which is great. I get to do my actual job as a nurse. Then there are days that I am a sitter, or work at the door to the hospital checking people's temperatures, and I have been sent to the adult tower to help the nurses there. I can't take patients there so I am just doing all the disgusting things they don't have time for. I have thought about changing jobs, I have thought about working less, I have cried my eyes out trying to figure out what the best decision is. So our days  nine months later I would say are harder than at the beginning when at least I was able to be safe at home. 

What toll has 2020 taken?

I am not sure we will truly know the the toll this year has taken until we're fully on the other side of it. I know it's taken a toll on relationship, both because of forced distance, but also from the differing in opinions about what is and isn't safe. The true colors of people really shine through in a crisis. What are people willing to sacrifice for your safety or for the safety of those less fortunate than them?  What minor inconveniences will someone withstand and which one's will they throw a huge fit about even when these small things could save lives. People's reactions to these things have been extremely telling and in some cases disheartening. It's been eye opening to see what people were willing, or not willing, to do to help their fellow man. There are a lot of friendships/acquaintances that I feel completely different about now than I did this time last year based on how they have responded, or refused to respond, to this pandemic.

There is also the toll that living in a constant state of fear/stress/anxiety takes on a person's body. Me personally that generally translates into weight gain, which it definitely did this year. That's disappointing and frustrating, but I have given myself a lot of grace on that front. The long term effects on that stress level for everyone, my children included, we probably won't fully understand for awhile. 

I shutter to think of the toll on my children. There are the obvious things like, they probably haven't learned everything they were supposed to learn in school these past nine moths. Then there are the deeper things. How does growing up during a pandemic, when every single thing becomes scary, affect a child? How does having parents who are at their maximum stress capacity affect a child? How does facing the reality of everyone's mortality at such as young age change their thinking about the world? My hope and prayer is that it teaching them perspective, resilience, and a deep gratitude for all they once took for granted, but I do worry about 

What beauty has been revealed?

So much beauty has been revealed this year amongst the fire. My children have formed a hopefully unbreakable bond between each other. Their love runs deep, even though they annoy each other and take out their frustrations and emotions on one another. Over the past few months they have become accustom to doing nothing and finding their own joy. This has resulted in finding the beauty in the simplest things. The best example of this was our weekend at the cabin, in the middle of winter, with no activities planned, no outings, no plans for any entertainment besides board games, books, and movies. We had the best weekend doing absolutely nothing. As parents we were alright with them watching TV for long portions of the day and we balanced it out with games around a table and short adventures outside. We sat by a fire, we wondered in the woods, we did nothing, and everyone had a blast. This is a miracle that would literally never happened in years prior. I loved every minute of it. There are a lot of examples like this, finding joy in the smallest things is the most beautiful things that has been revealed to me this year.

What have you learned?

I have learned, again and again and again, that I can do so many hard things I could've never imagined and the same can be said for my children. At this point I could tell my children anything and they would be like, "okay mom we'll deal with it." They have taken it all in stride. I've learned the importance of communicating honestly with everyone in our family. Family meetings have been a game changer this year, as a way to reset, and get everyone on the same page. I have learned that I need time alone, stillness, and preferably nature to remain sane. I need quiet to find my center again and turns out I had to search and fight for that in my house this year. I've learned I have a decent fear of dying and leaving my children here to grow up without me. I've learned a lot about completely my stress cycle and helping my children complete theirs so we don't all live at a constant state of horrible stress that always ends badly. I've learned that a lot of the things I thought we couldn't live without doing we really could easily live without doing.  Our priorities as a family have become crystal clear this year. I've learned over and over that I wouldn't want to do any of this with anyone other than Zach. All sorts of wonderful lessons have popped up this year that would not been made so clear if we weren't in this crazy time.

What do you care about the most right now?

Currently my top priority is keeping myself and my family healthy. As the numbers spiked here I doubled down on not wanting to be the person who exposes someone I love this takes on a new found urgency and importance to me right now. I work at a hospital and know that that is probably the highest risk activity that any of us is doing. I do not want that on my head. We have not come this far, gotten this close to a vaccine, to then let our guard down and I unknowingly expose everyone to this virus. We've been through so much, we've survived it, don't let all that be for nothing. I desperately miss people, family, and friends, but I can miss them for awhile if that means it keeps them here awhile longer. I know people think I'm being overly dramatic, but literally hundreds of thousands of people are heading into the holidays with empty chairs at their tables. People who had plans for holidays aren't here anymore. But by the grace of God and our diligence to do the right, safe thing, goes me and my family.

Halloween 2020

Halloween remains Zane's favorite day of the year. So imagine how stressed out Zane was about Halloween this year. A solid month ago Zane started asking what our plans were for Halloween. There came a point at the beginning of October where I finally had to say, "you cannot ask me about Halloween again until October 26th. I have no idea what our plan its or what we're going to do, or what is safe. So for now I don't know is the actual answer." Months into this pandemic and my children still feel like I'm lying to them when I say I don't know about something. I am not lying that's the truth. I generally do not know what is going to happen or what we are going to do until it is time to do it.

Meanwhile we worked on COVID safe costumes for everyone. Here is where we landed. Zane was a blow up dinosaur, thanks to a friend who let us borrow their costume from last year. 

Thatcher really wanted to be a super hero, but I convinced him to be Buzz Lightyear. I bought him a new costume and we already had the helmet with the full face shield from his birthday which seemed safer than any super hero costumes I could find.

T was super excited about Halloween this year, but ended up not being a huge fan of trick or treating. He went for a little bit and then was ready to come home. 

Rowan found this random Minecraft costume at Target and claimed he desperately that's what he desperately wanted to be. I think it is a Zombie Dinosaur. I don't really care at all what it is, I enjoyed the plastic, full face shield aspect.

I initially didn't think I was going to dress up this year. Then I found a Where's Waldo shirt at target, that would go perfectly with my yearly red tutu, thus our Where's Waldo themed couples costume was born. Zach is Wizard white beard, complete with his gnome looking hat that we created ourselves. Love it!

I loved creating a little tablescape to put our candy on. Our little table was set up with five different species of skeletons. The Man with the Yellow Hat and Curious George costume made another appearance this year, all be it a bit dark, it was really cute. The skeleton candy bowl did end up scaring some little ones, but for the most part it was a huge hit.

Prior to trick or treating we had to have spooky dinner. This year I finally gave in and bought the skull mini cake mold pan. I've looked at it for years but never could pull the trigger. I did this year and it did not disappoint. Her are all the ways we used it over the past few weeks.

Pumpkin bread with spooky, supposed to be red really turned out pink, frosting.

Skull meat loafs were probably the grossest looking version, which we had on Halloween. Skulls covered in ketchup/blood were pretty creepy.

The most delicious version were definitely the pizza stuffed skulls. Which we made twice!

Then it was time to head out for a short little trick or treat outing. This year I got a ton of pumpkins early in October for very cheap. My children were motivated to get them all carved before Halloween and they did. They looked great. It is so lovely to have children old enough to be able to carve pumpkins without having to assist them. 

Our final decision about trick or treating was that Zane could trick or treat with his best friend, Annabel. She showed up with her siblings and some friends which kind of stressed me out, but we were able to keep our distance for the short time we trick or treated. This clown costume randomly showed up at their house when they ordered dog food so she just leaned into it. Absolutely hysterical. These two are such good friends and it has been extremely hard for them to not be able to hang out and do all the things they want to do together. Glad they were able to trick or treat, at least for a little while, together.

Everyone in the neighborhood had very creative ways to hand out candy. This was as ghost that was hooked up to a pulley system that brought candy out in a little bowl for the kids. There were tables where candy was all laid out. There were people outside in their driveway with fire pits and TVs. It felt more like a big community event than other Halloweens since everyone was in their driveways verses inside, but also safely distanced from each other. 

Rowan and Thatcher came back pretty early. Rowan's little anxious self didn't handle being around people very well. He was scared there were too many people to stay safe. So Rowan and Thatcher came back and helped keep our candy bowl full. I feel like we went through a lot more candy this year than previous years, partly due to the fact that the front half of the neighborhood was still out of power from the big ice storm that we had earlier in the week. Happy to help, but we were out of candy pretty early.

There was a full moon on Halloween night. That won't happen again for another seventy seven years. This was our attempt at getting a picture with the Halloween full moon.

Buzzlight year fully sugared up on candy.

Yes, our Christmas pajamas arrived on Halloween. I am quickly getting in the Christmas spirit this year. Here is T and I cuddling in his new cozy jammies while we waited for Zane to return.

It's been a weird year and everything always feel crazy and different. Halloween was different. I hate that trick or treating felt somewhat dangerous. I hate that we were questioning whether or not we made the right/safe decision letting Zane go with his friend. The kids missed being able to ring the doorbell and actually say trick or treat and thank you. There were a lot of houses with no one outside, just treats left on tables. Mainly I am tired of always being on edge, always thinking about how close we are to other people, or if we have our masks on, and on, and on, and on. After months of this it is exhausting and sad. 

We Won!

Here we are, finally, on the other side. After four years of waking up with a sense of dread, peaking at twitter to see what type of disaster our country was in now, as a nation we've had a huge weight lifted off our collective shoulders. There is a sense that we could maybe allow ourselves to hope that things, all of the things, might somehow be better. I saw on twitter someone say it feels like when you're little and you're driving in the middle of a stormy night. It's dark, it's raining, there's thunder, everything seems scary, but you feel safe because you know there is an adult driving. I feel like now there is an adult back in the driver's seat.

Last week felt like it lasted a forever. It felt like a roller coaster of stress, ticking up to the top, reaching maximum stress level, on election night. Then we just set at that level of stress for three days, slowly ticking down as votes began to roll in and things started to look up. As the hours and days passed it began to be clear that democracy was going to work and the systems in our country were going to hold. With each new batch of votes recorded, each new projection that came in, I could feel my shoulders drop just a bit as the tension from the past four years began to gave way little by little. 

I spent Tuesday, Wednesday, and Friday pacing around my house unable to concentrate on anything, forgetting what I was supposed to be doing, unable to read a book, or focus on a TV show,  just waiting for good news. My children asked continually if we knew anything. What states could they color in on there map? When would we know who won? We were all on edge, stressed, and scared. I barely understood what was happening and they hadn't a clue what was going on. I had no patience and they had no attention span. The situation in our house was tense and trying for days. Friday morning Zane was a ball of emotion and he just couldn't unpack why. Everything made him mad, everything made him cry, and he couldn't understand it. At lunch time we stopped all our failed attempts at schooling, went and got pizza, and ate it at the park. This break was a brief reset but the whole afternoon was a struggle as we all dealt with our third day of election stress.

You know it's a strange year/election when you have to hang your electoral college map on the fridge for days as you wait for FIVE different states to be called. Zane at one point colored Pennsylvania blue and I quickly got the white out so as not to jinx us. We had prematurely colored Arizona blue Wednesday morning after the AP had called it for Biden, but that one was close for days as well. 

So for three days it felt like we were being held captive, but we weren't captive we just had to be patient while the votes were counted. For days poll workers, dressed in face shields and masks, opened hundreds of thousands of envelopes, patiently and methodically, sitting safely six feet apart, while crowds of on lookers were yelling outside their buildings. All this while camera crews from around the world gathered and the President of the United States complained about how they were doing their job. 

They persisted, at their own pace, making sure every vote was counted, everyone's voice was heard. 

Mail in ballots are usually quickly mentioned as an after thought on election night, but this year, when democracy hung in the balance, they were all that mattered. In the middle of a horrific pandemic, when the president was yelling about how you shouldn't use mail in ballots, American's mailed them in in droves. They found drop boxes, they drove them to election boards, and then they checked and double checked that they had been received. Even as the postal service, the freaking postal service, was being sabotaged by the executive branch people bought stamps by the hundred to support them and did everything they could to make sure their vote was delivered safely so that it could be counted.

The race has now been called, but these amazing patriots across the country continue to count. More people voted in this election than any other election in the two hundred and forty four year history of this great country. We knew what was at stake, and when it mattered most we showed up. Joe Biden will go down in history as the president to receive the most popular votes ever. Of course he was ahead in the popular vote by four or five million while a nation waited anxiously to see who would be declared the winner. That in itself is absolutely absurd. 

The news of his win being official broke yesterday while I was at work. People who knew I was working texted me. The first person I got a text from was a coworker of mine who I hadn't been particularly good friend with prior to finding out that we both were secretly democrats. Since then we've been each others support person while craziness was being spewed at the nurses station. I worked with her on Thursday when we decided we probably needed a secret handshake for if the news was announced then. Her text was followed by celebratory gifs from friend whose husband and children are Black. I had spoken to her the day after the election, her disbelief and grief, seeing that so many people where still fully behind Trump's raciest ideas, brought me to my knees. I cannot imagine this type of crushing pain. 

I spent the rest of Saturday scrolling social media when I had a free minute and briefly catching clips of the news in the break room. Everything felt hopeful. To quote Hamilton, tens of thousands of people flood the streets. There were screams and church bells ringing." There were videos from New York out people's windows where you could hear cheers of joy and horns honking. The streets around the white house quickly filled with people celebrating this victory. The striking thing about these celebrating crowds was they looked like what America looks like. Black, brown, Asian, Hispanic, Native American, gay, straight, young, old, and everything in between. As opposed to the Trump rallies which have become so familiar over the past four years, full of only white people. It's such a stark difference between an open, accepting, loving, joyful, diverse crowd and a crowd full of white people filled with hate and fear. 

I got done with work slightly early and raced home to get there in time for Kamala Harris and Jo Biden's speeches. The boys were at mom's house cleaning up branches so I was home by myself. I got there just in time to see Kamala take the stage in her fierce white pant suit, breaking directly through that glass ceiling, making room for so many to follow her. Her speech was so powerful. I watched it absolute awe, knowing I was bearing witness to a huge moment in history. Thinking about all the little kids who get to grow up thinking this is normal. This is obviously something that a woman can do because a woman has done it. Breaking down one more door. It feel so long over due and at the same time it feels like there is so much farther to go. 

Then Joe came jogging out, trying I'm sure to help people look past the fact that he will be the oldest president to ever take the oath come January 20th 2021. I cried all the way through Biden's speech as well, feeling hopeful for the first time in a long time. It was so refreshing to hear a well spoken president again. One that talked about inclusion, healing, and compromise.Setting forth actual policies and reassuring us that he will listen to science. A speech that had no insults or slurs, no hate or vitriol, he quoted scripture and On Eagles Wings, as a shout out to all the Catholics in the crowd I'm sure. It felt like a new chapter was beginning and I hope and pray that the nation can begin to heal, literally and figuratively soon. It was a historic night, so long in the making, but there is so much work still to do. For now we rest, but soon we fight on.

Tales of a TET Baby: Ten Years Later

Ten years ago the thought of ten years in the future seemed unfathomable. There was so much unknown and we were in such a place of deep grief and anxiety. Ten years later, here we are in a state of such grief, all be it different, and such anxiety. Ten years in the future seems unfathomable. There is just so much unknown. Maybe that is how life always is, maybe ten years in the future is never something you can imagine, but I know for sure ten years ago, as we handed our sweet baby boy off to strangers who were going to go stop his heart, it felt like it would take a miracle to get us ten years down our journey.

Many miracles have brought us to the ten year post op milestone. Our journey over the past ten years looked a lot different than what we had imagined. We had imagined that at ten we would still be a few years away from Zane's second heart surgery. As it is we are a few years out from his second heart surgery. I don't think anything could have prepared us for Zane's personality. Zane came out of surgery, having faced death head on, and hit the ground running. He has never had an ounce of fear since. His diagnosis has never been a hindrance. Zane has always known his story and proudly will tell it to any and everyone.

This past year our pediatrician passed away unexpectedly which lead to getting a new pediatrician who didn't know any of Zane's medical history. At his ten year old well visit the doctor asked Zane if he could tell him his medical history, as a way of reinforcing the importance of being your own advocate as you get older and go to live on your own. Without missing a beat Zane raddled off the whole thing. "I was born with Tetralogy of Fallot. I had my first surgery at four months old, in St. Louis. I got sick and started getting really tired during the second half of first grade. I've had an MRI before I got sick and one when I was getting really tired. I had my second heart surgery to replace my valve in 2018 right before I turned eight at the hospital where my mom works." That's the story, that's the whole thing.

Probably what I am proudest of, ten years later, is the sense of pride that we have fostered in Zane surrounding his diagnosis. Over the past few years he has taken that pride one step further in actively trying to help other children who are also living with congenital heart defects. He became the face that went with the Kid's Heart Challenge at school, to the point that random kids at baseball games stop him and ask him if he's the kid who has had heart surgery from Prairie Vale. Putting a face to what the kids were trying to raise money for was important to him and the year he and I shared his story was the year that Prairie Vale raised the most money for the American Heart Association. Telling his story and my story as a parent isn't always fun. It's not something I really like reliving, but we know it's important for people to have a face to put on the diagnosis. 

This year Zane is in a new school building with teachers who don't know his medical history which has led to some funny conversations. For instance at the end of his first parent teacher conference his teacher said, "Zane mentioned he has had two heart surgeries and I notice that he always his playing really hard at recess, is he okay? Should I be worried about him playing to hard or over exerting himself?" No, he's fine. He has no restrictions and his heart is working as well as it ever has worked. He continues to celebrate his first heart birthday at school since he's a summer birthday and this is a tradition I'm so glad we started. It gives him a chance to share his story while keeping it a positive, fun event. 

Zane's yearly cardiologist appointment happened to fall during the week of his heart birthday this year. When we were talking about going Zane said, "this is my tenth cardiology appointment." Zach and I both broke out laughing. No son this is probably your pushing thirty cardiologist appointments at this point kiddo. The whole time we were at the hospital I kept remembering those early appointments, Zach and I both bringing our tiny baby in to help hold him and sooth him during his EKG and Echos. Then there was the eternal wait for the physician to come tell us the results, knowing that with each visit his condition was worsening. Then there were the blissful years after surgery when we just assumed everything was fine and it was just going to be a day of fun for Zane and I, right until it wasn't and the world came crashing down again. 

This year Zane seemed so much older to me. He had a goal to finish the sixth Harry Potter before Halloween so he could get the new Diary of a Wimpy Kid book, so he read feverishly the whole time we were waiting for various things. He's never one to read in waiting rooms, but this year he did. It was calm and well spoken when he talked to the physicians and the medical students. No longer nervously running around the exam room. He even voiced his concerned about his friends talking about not wearing their masks in public outside of school. He just seemed older and I was acutely aware that there would be a day where he would face these cardiology appointments by himself. There is a good chance he will have to have another surgery before he leaves home, but the physicians again said there is a chance that by the time he needs to have his valve replaced again that it could potentially be done in cath lab. We held out hope for that last time, so I am not holding my breath, but the potential is there. 

Oh the mask pictures. I hate them. How is this not getting better. It's so devistating.

Zane was learning about different types of waves in science last week so he was excited to learn that an echo is using high frequency sound waves and his EKG was measuring electrical waves from him heart. Science in action!

Ten years into this journey I know that the years where I will being taking him to these appointments are officially on the downhill slide. I feel confident that he will be a great advocate for himself. This is a solid part of his story, one that he is continually aware of, but doesn't let run his life. He asked me a few months ago when his yearly appointment was, and had I scheduled it yet. This is something he will be able to manage, but ten years later I still hate that it was the card that he was dealt.I wish that elections and supreme court appointments wouldn't effect my life so personally. I wish I didn't have worry about whether my child with a pre-existing condition will be guaranteed the right to health care. I wish he wouldn't have to explain his scars to people for the rest of his life. I wish he could say he was tired without me being overcome with panic. These are things I have shed buckets of tears about over the past decade. I wish I had the tears I have cried back.  I'd change it in an instant if I could, but remain grateful for how this journey has changed me, and him, for the better

Election Day 2020

 I feel like years from now my children and grandchildren might ask me about this day. What were you doing? How were you feeling? What was that time like? So in an interest of memory keeping I'm documenting this day. 

Let me start by going back to election day 2016. It was all but guaranteed that we would be celebrating the election of the first woman president in American history that night. I was emotional, but in an excited way. I voted in the morning and was teary eyed at the history that was about to be made. I was excited to watch the election results roll in and couldn't wait to hear Hillary's speech she was to deliver in a building with a literal glass ceiling, after she had broken through the metaphorical on by being elected. As the evening wore on it became pretty clear that there was no way she could win. At that point I remember walking into our bathroom, sliding down the wall by the toilet, bursting into tears, and bawling until I was physically ill. I spent the night going between vomiting and hysterical crying as I mourned what this meant for the future of our nation. The future of women, the future of democracy, and most importantly the future of my son's human right to medical insurance. It was the first time I realized that elections can negatively impact my family personally. The fact that I was thirty three and that was the first time I'd felt that tells a lot about my privilege. I called into work the next day and continued to cry. 

Four years later and I have to say, lying on that bathroom floor, terrified, I could have never envisioned just how bad things would get. I held out hope that he would surround himself with smart people and he'd just be a figure head. Sure I wouldn't agree with any of the policies he backed and there was a good chance the ACA would end up before the supreme court, but I did have a sliver of hope amongst those tears. Well, turns out it was much much worse. Worse than anything I could have imagined. We now find ourselves in the middle of a global pandemic and we're leading the world in deaths, due to the absolute lack of leadership on the federal government. I could go on and on about the atrocities of the past four years, but I'll suffice it to say it definitely feels like the future of democracy is on the ballot today. It feels like we could be on the brink of another civil war or really God knows what. But today is the day. After four years of protests, marches, and cheers of vote them out. It is time to see what our nation is made of. It's time to see if we are the people we like to think we are or if when our true colors are shown we're not actually those people at all.

I sent my absentee ballot in weeks ago and I checked to make sure it was received, something that I never wouldn't done before. I would have gone to the poles where there would have been a very short line. I would've gotten my sticker, taken the I voted sticker selfie, posted it to all social media, and felt great about doing my part. To be clear I am a democrat in Oklahoma so my vote doesn't matter too much, but I'd do it anyway. This year I sent in my ballot after stressfully reading all the instructions on how to use the four different envelopes it came with. Then I checked and rechecked that it had been received. This means that I spent election day at home doing nothing besides trying to not have a nervous breakdown. 

Yesterday around two o'clock I hit a wall. I don't even remember what pushed me over the edge, but I burst into tears and could not stop crying. What is at stake at this election is so huge. I think it was the stories of people waiting in line for hours upon hours, while people were yelling at them, actively engaging in voter intimidation which is against the law, while the people in the highest office in the land are putting up a cement barricade around the White House, that pushed me over the edge. The stories of people voting on their deathbed, were they would never have been if they had a government that had taken this pandemic seriously. I think it was the stories of people in their hundreds, who were born before women had the right to vote, who waited in line to vote, knowing this would be their last presidential election to vote it. But mainly it was the knowledge that the republicans have already stacked the supreme court. The issue that affects my family the most closely, the right for people with pre-existing conditions to be guaranteed healthcare, will come before the supreme court before any new judges can be placed. The damage has been done no matter the outcome of this election. It brought me to my knees and I could not pull up.

This morning I woke up at five o'clock in the morning and knew there was no way I would be able to fall back sleep. I watched a mindless TV show on Netflix while I waited for Zane to get up for school at six. I started my day with this prayer from Kate Bowler, one of the author's I follow that is a constant stream of hope for me. 

It was dress like your personal hero day for Red Ribbon week at Zane's school. He decided to dress as a frontline worker/heart surgeon. He wore my scrubs, so I maintain he dressed as me. 

It was dress like a book character day at Rowan's school. He wanted to wear his baseball uniform so he found this random Babe Ruth book to go with it.

Before we went to drop off Rowan I got my cinnamon roll dough mixed up and rising. I don't know why I decided to make cinnamon rolls today. I knew it was something that would take a lot of time. I knew that the smell of homemade bread felt like home. I thought that I would want to stress eat. Turns out I am too stressed to eat at all which as legit never happened.

My goal for today was distraction. Just all the distractions to keep my mind off everything else. T and I went on a run/scooter ride. Exercising to complete my stress cycle is a must everyday now even when I want to curl in the corner and cry. Next up a fire on the patio while we did another part of Thatcher's dinosaur Kiwi Kit. Have I mentioned that Thatcher has saved my life over and over and over this year. His innocence, his love,  his joy, his face, just his entire being continually saves my life. 

Here is Thatcher in his dino outfit he made.

Next up, before T went to sleep, it was time to roll out and make our cinnamon rolls. He was actually very helpful with every step. We were both covered in flower, sugar, and butter by the time we were done. Thatcher was so proud of himself.

I ended up with I think six pans of cinnamon rolls with no one to eat them. I gave two pans to Abbey, along with some chex mix I made yesterday. Abbey has been tirelessly volunteering with hotlines for days now. I am so proud of her and wish I had that strength and optimism. 

When Thatcher went to sleep I had plans of cleaning furiously, putting my anxiety to use. Turns out that I just laid on the couch paralysed in fear. I watched mindless television for two hours until Abbey showed up to get her cinnamon rolls and have her wound care consult for her burns. I dressed her burn and it was good having some human contact with someone I loved. When she left I realized I hadn't eaten anything, except some cinnamon roll dough, since eight o'clock. I usually eat at least every three hours. I am not a person who EVER forgets to eat. I am a stress eater. So if I'm so stressed I am not eating it's gotten really bad. Cue me bursting into full body sobs again. That's the theme of the day really.

This afternoon I listened to a podcast on first ladies while I waited to pick up Rowan. My brain is too crazy to read, which is what I usually do in the carline, but this podcaste was fascinating and honestly was a lovely brain break for me. Something positive, something patriotic, possibly the highlight of this day.

We had taco Tuesday this evening which included a family meeting at dinner time. We went over what to expect from election night. We made this list of things to expect and rules for the evening going forward. I knew that I wanted my kids to be a part of it at some level. I knew that it was an experience that they need to have. I knew they had been learning about it at school and we had read a book about the presidential election at home. I also knew that there was a good chance I could not stand to watch it. Here was our list of bullet points for the evening.

I wanted them to understand that sixty million people voted by mail in ballot this year so they cannot declare a winner this evening. I also needed to continually tell myself that. I wanted to make sure everyone knew that we were all obviously rooting for the same person so there was no need for angry comments about anyone. Which goes to point number three that we don't need to be loud and scream. Number four turned out to be the most important. 

After making this list we had a conversation about why we were voting for Biden. There was a momen where I had to explain to my ten year old son, who has had two open heart surgeries in his young life, that his ability to be guaranteed health insurance as an adult was greatly at stake in this election. The look in his eyes as he tried to process that will haunt me forever. We talk about how we were voting for kindness, for equality for all people, for our black friends, our immigrant friends, and for people who love different people than we do. We are voting for kindness for people who are less fortunate than we are and I made it clear that as white men that is going to be pretty much everyone else. We went into white privilege. We went into loving your neighbor as yourself. Rowan didn't understand who people would be treated differently or why people would not like people because they were different than them. You are taught how to hate and I am trying like hell to make sure my children don't ever learn it. I felt like this conversation went well.

The boys then wanted to watch election coverage. I felt this early in the night I would be okay to watch it for a little bit while they colored in their little electoral college map with the obvious early blue and red states. Turns out I cannot stomach watching any election returns. I cannot stomach watching Donald Trump win any state. I cannot stomach the hate. I cannot stomach the ignorance. I cannot stomach any of it. It's too much. I ran out of the room crying and am now sitting in my room blogging. I have watched some hopeful videos on instagram of preachers and other authors saying lovely things, prayers for our nation and each other. 

Thatcher came in to sit with me and give me pats. He told me he loved me the most and that it would be ok, all while wearing his Woody costume and his Baby Yoda hat, as I was sobbing. I do not know that it will be okay. I have never been less sure that it will be okay.

The boys have a map they are coloring in as they call states. How are they calling states when none of the mail in ballots have been counted? How can they know anything until every single vote is counted. I do not understand it and my soul cannot take it. I can hear my children's blind hope from the other living room and it makes me absolutely weep. I have no idea what to tell them if hate wins. When we watch movies I always tell them the good guys always win in the end, but that is not the case in real life. I have no idea how to go forward. I do not see democracy making it through four more years of this.  Hopefully every vote it counted. Hopefully love wins and kindness wins. But I have no hope and I desperately wish I had a sedative of some sort right now. That's where I'm at. My plan is to cry in my room until I fall asleep and see how it goes. 

I did leave my room briefly to put the boys to bed. I did not lie to them when they asked me if I am okay. No I am not okay. None of this is okay. I watched a little bit more the coverage and just wish it wasn't even a thing. I wish we would say, "it's going to be a few days before every last vote is counted. At that time we will come out with the final totals, and declare a winner." Oh and the person who wins the most votes overall wins, not some crazy ass system that means millions of peoples votes don't get counted. Sadly that is not how it is done at all. I gave my boys big hugs through teary eyes and have never felt more weary. Just broken down to my absolute core. I'm back in my room trying to figure out a way to sleep.

So that's probably not the fun story that my Grandchildren will want to read, but here we are. Also I have no energy or band width left to proof read any of this. So I am sorry if this makes no sense.