August 31 – Empathy

I’ve wanted to write about empathy for a long time. I wanted to have a child because I knew it allow me to do my part in making the world a better place by raising a thoughtful and empathetic human being.

In the past few years it just seems like empathy for others has gone out the window. Maybe I just read too many internet comments (I absolutely do, for sure), but I don’t understand why so many people are only concerned with themselves and their immediate bubble of society.

I cannot say that I am a perfect person and never fall into this trap myself. I, too, am flawed, and I work every day to better understand these flaws in order to help shape the world in a way that will make it better long term. Long term meaning after I’m gone, after we’re all gone.

I’m trying to write this without being political and without straight up saying that how people feel is wrong, because that isn’t my intent. My intent is only to make people take pause and try and see things from another human being’s point of view, and think about what they would do in their shoes.

I see so many people saying that everyone is too sensitive now, too “PC.” When did giving a shit about other people become a bad thing? It’s our responsibility to work together to make this world the best we can make it, for everyone. Not just for you, not just for your family and friends, and certainly not just for this one single country. None of that comes first, humanity comes first.

Maybe we don’t give doctors the ability to refuse to treat patients they don’t share religious beliefs with (that’s literally against your oath…), or deny refuge to immigrants seeking escape from violence and persecution in their home countries (what would you do if your family was in danger??), or think about future generations when we make decisions about our planet (that shit is dying), or etc. etc. this list could go on forever!!!

I want to be a better person, a better human being, in memory of Isaac. And I’d love it if everyone reading this would join me in doing so.

August 30th – Abortion

This post is personal and rough and scary but I think it’s worth putting out there for everyone to have some perspective.

In earlier posts I’ve mentioned that we had a very scary pregnancy. At 21 weeks we learned that Isaac had significant health issues for unknown reasons. For those that don’t know, that’s about roughly half way through a pregnancy. It’s after you’ve told people, it’s after you’re out of the typical “danger zone” of having a miscarriage. Doctors decided to do a series of tests to figure out what was going on. There were some very, very scary results that we could have received. Results that would have ended with our decision to terminate the pregnancy.

The day after we got this news and while we were waiting for these test results, an acquaintance posted a meme to facebook suggesting that abortion after 15 weeks is “extreme,” and “radical.” I could not fucking believe it. 1. It was a male that posted it. 2. Pretty sure he was only 20 years old and hasn’t had any pregnancies. 3. It also said that democrats “want to suck the brains out of fully developed infants moments before birth.” IS THIS STARSHIP TROOPERS?! (bad science fiction movie from the 90’s where aliens suck out people’s brains).

I could not believe that I was seeing something so insensitive the day after we were literally told by a genetic specialist that the test results coming in could result in her recommendation to terminate the pregnancy. I know the person who posted it didn’t mean any harm. I know he genuinely did not understand that seeing such a thing would cause me to sob in my office for an hour before furiously composing several responses before deleting them all because I didn’t actually want the world to know what was happening with our pregnancy.

But now I do want him to know. I want everyone to know. I apologize if this makes anyone uncomfortable but I think it’s important for everyone to have some perspective.

Women aren’t getting late term abortions because they are lazy pieces of shit who never got around to killing their babies earlier. These are women like myself who planned and/or wanted their pregnancy, and having to go through this is literally the worst fucking thing that will happen to them. 
The proposed abortion laws banning abortion after 15 weeks are trash because they force women, like myself, to carry a baby to term who a. might pass away inside of her, forcing her to give birth to a baby she knows is already dead, or b. might be born but will not survive. 

There is so much misinformation floating around these days, I understand it is easy to read one thing and latch onto it as the truth, but I implore you, do your research, find examples, talk to people who have some perspective. Get outside your bubble of comfort and really attempt to empathize with other human beings. I have to imagine if this person knew what I was going through he would have thought twice about posting that meme, and I can only hope that someone will think twice about posting something similar because of this blog.

The more information out there the more understanding there is. 

August 29th – Guest Post

Hi Everybody, 

This is Chris. Amy let me do a guest post during her month of posts in honor of Isaac. I don’t put much of anything on the internet, and I don’t think I’ve posted anything about Isaac before, so I believe this is my first public post about him.  

First I want to say thank you, thank you, thank you for all the support. The amount of love he received while he was here, and then the amount of support we received after he passed away was overwhelming. If I ever need to reaffirm my faith in people (which is pretty common these days), I can think back to all the friends, family, and even strangers who were amazing throughout. I remember the night Isaac was born, at some point I ended up in the hall outside the delivery room. I think Isaac had just been born and had been transferred to the NICU, Amy was in recovery, and I was waiting to be allowed to join him in the NICU. But honestly I’m not totally sure of the timeline. It happened so fast, it’s hard to remember sequence of events.  

Regardless, I’m on this bench and pretty shaken up, and a janitor comes by emptying trash cans out of various rooms along the hall. This is a delivery area, so he could probably guess why I was there. He stops, gives me a fist bump and a word of congratulations. I almost broke down and cried right then. That bit of support from a stranger who had no obligation to me was the perfect thing at that moment.  

It really just continued from there. GBMC worked literally around the clock to give Isaac the best care possible, and our friends and family offered all the help we could have ever hoped for to keep me and Amy going.  

And when Isaac passed away, it felt like the whole world was there for us. On the day of his funeral, Amy and I got to the service early and took a seat in front with our family before most people got there. During the service I really didn’t know who had come – I didn’t have it in me to even look back at the room behind me. But when the service was over and people began to come up and give their condolences I realized just how many people had come to his service. Later the pastor told me they had to bring in extra chairs to seat everyone. To this day I’m not sure why that meant so much to me, but it really did. I think maybe it was a reassurance to me that, while Isaac was only here a short time, he mattered so much. In that short period of time, he had made a huge impact.  

For me specifically, Isaac showed me how much I loved being a father, which is something I really didn’t know about myself before. I didn’t have a child until I was 37 and had been married for 8 years. Clearly I held out for quite a while, but Isaac showed me how much I wanted to be a father. And some day when his brother or sister comes and I feel that excitement I’ll be grateful to Isaac for showing me how great being a parent can be. 

And Isaac showed me a different way to think about the world. We spent hours in the NICU just being with him, and over that time I could feel myself being less wrapped up in my day-to-day nonsense and more focused on someone else – focused on his future and not my own. And that felt really good. I started to think about my decisions with a focus on how they might affect his life 10, 20, 30 years down the road. Even though he’s gone I still try to hold onto that viewpoint, be less wrapped up in myself, and be more focused on generations to come and the world we are making for them. 

A very difficult thing Isaac taught me is that Amy and I can go through something incredibly hard and come out the other side – I don’t want to say we came out just fine, but we did come out, and we’ll be okay. I know Isaac never got a fair chance. He never got to live the full life he deserved. But he did get the opportunity to make a big impact on the world around him in the time he was here.  

August 28th – It’s Been a Year

Today marks a year since we said goodbye to our Isaac Taylor Schoedel.

“Time flies when you’re having fun.”

Well, time also flies when you’re not having fun, when you’re grieving, when you’re living, and especially, the older you get, the faster it seems to fly. I cannot believe it’s been an entire year. Some days it feels like it was yesterday and some days it feels like it was ten years ago.

Today we remember our last day with him. How friends and family came from four different states to the hospital to support us and say goodbye to Isaac.

August 27th – Marriage & Grief

Very early on in our marriage I remember hearing people say relationships are hard and a lot of work and I thought, wait what? I figured since we’d only been married a year or so at that point, maybe I just didn’t know wtf I was talking about and we were still in the infamous “honeymoon phase.” Well, a little over 9 years, two houses, 5 cats, and one huge shared traumatic experience later and I feel the exact same.

I count myself lucky that I went into intense grief with the person I love and trust most beside me. Not only beside me, but relating to what I was going through. We grieve in different ways, but we grieve together. I think sometimes it can be hard understanding how your partner grieves, or feels emotions at all, but the most important thing is that we’ve been there for each other.

As I talked about yesterday, sometimes grief comes out of nowhere for a sneak attack. Mine likes to get me most in the shower or when I see a beautiful sunset/rise. Or watch an emotionally charged movie. Or TV show. Or hear a beautiful song. Or a see a friend or relative’s kid do something super cute… watch out because the world is a minefield!!!

Throughout all these grief attacks, we’ve both been there to comfort and console one another. Sometimes when the other person is feeling down, that makes you feel down. Sometimes, it makes you feel stronger because you’re able to comfort them. But the important thing is that through all the grief, we both know we aren’t alone with it.

August 26th – Flashbacks

Sometimes I’ll just be working or walking or making dinner and I’ll suddenly remember what it felt like that last day in the hospital with Isaac. It’s the strangest of feelings, my entire body feels transported back to that exact day, everything feels the same. It takes my breath away. I know what I was wearing that day (it’s still hanging around somewhere, I don’t want it, but I also can’t bear to get rid of it — sorry Kate it’s definitely a maternity dress you let me borrow!!). I know what I was thinking and feeling and hearing and seeing.

I don’t have these types of flashbacks very often anymore, and they aren’t as much of a gut punch as they were at first. Sometimes they’ll still come out of nowhere and attack. Not gonna lie, working from home is way better than working in an office and just hoping nobody knocks on your door while you cry for 5 minutes. And then usually 5 minutes later I’m good to go!

These memories don’t always come out of nowhere, though. Going through life is completely different post-Isaac. Movies and TV shows with hospital machines beeping and flat-lining… nope. That’s a recipe for upset (I mean it’s probably already an intense part of the story if someone is flat-lining right?). My fave TV show Grey’s Anatomy (don’t judge me, it’s awesome and I should have an honorary medical degree from watching it over and over) has been ruined for me for over a year at this point. It’s like one sick or dying baby or abortion or miscarriage after another on that show! WTF. Of course, something I never noticed before. I’m still hoping that will get better for me eventually because I genuinely miss watching it.

For a while I was letting the fear of seeing something that would make me break down scare me out of watching new things, going places, etc., because I never knew when something might trigger my grief. That’s right dumb dumbs, triggers are real and they suck for those who have to worry about them. Slowly over the past year the fear has faded, as has the intensity of the pain these triggers cause. They’ll never be gone altogether, nor do I want them to be. The pain I feel due to my grief is my undying love for my son, which will never fade.

August 25 – Finding a Support Group

After Isaac passed away I immediately wanted to find like-minded individuals who could relate to what I was going through. I had and still have an amazing support system, but I just really wanted some nice anonymous people who wouldn’t look at me like I was losing my mind when I said things like, “I don’t want to leave the house because I’m afraid I might see a pregnant person,” or, “I hate everyone who is happy and I feel like it’s ok to feel that way.” (I still hate happy people but only if they’re whistling. JUST. STOP.)

So I sought out some support groups for individuals who had lost a child. The first one I went to was specifically for those who had lost a pregnancy or an infant. It was in Frederick, which is about an hour away from where I live. I think I had just gone back to work and went straight from the office. I was the only person who showed up on time. Another lady showed up a half hour into it. Her story was fucking devastating and I felt so bad for her. I ended up leaving more upset about this lady’s trauma than my own.

I didn’t go back to that group. The next one I tried was a grief group for anyone who had lost a child, regardless of the age. That one was worse. Someone said to me, “at least you’re still young and can have another baby.” That was not my favorite. But, she had lost her only child when he was older and she couldn’t have any more kids, so I get it, even if that is NOT what you want to say to someone whose baby just died. Someone else at that meeting was very religious and talked at me for what felt like a good 10 minutes about how this was all god’s plan and he wouldn’t give me more than I could handle. She clearly got a lot of comfort from her religion so I didn’t have the heart to tell her after she finished her speech that if I believed in god I would have some real bones to pick with him about his decision making (and that was what I thought in 2019, it wasn’t even 2020 yet!!!). Oh also, this group was at a hospice. So… where people are literally dying in rooms nearby. That just bummed me out more.

I didn’t go back to that group either. The last group I tried was at Carroll Hospital. The gals that run it are awesome and the attendees are all amazing and strong and people that I could relate to. Unfortunately, the first time I went to this group was in February of this year and by the time the March meeting rolled around… it was Covid central. However, I was able to join them again for a virtual meeting the other night and I’m so happy I did. It’s so helpful to hear that you’re not alone and that others have similar thoughts and feelings. It’s also helpful to hear others’ perspectives and coping methods. It took some effort to find a good group for me, but I think it was very much worth the effort.

August 24 – NICU Memories

Took a couple days off from writing to really soak up the last couple days of vacation and now I’m back!

Today I thought I’d talk about our experience in the GBMC NICU.

Overall I am one million percent in love with GBMC. I had surgery there years ago and I’ve been seeing the same GBMC OBGYN ever since. I tell everyone I know to go see her (well, all the ladies that is.) She’s super calm and matter of fact and I am routinely the opposite of that in stressful situations so I think it’s a good fit.

Unfortunately she wasn’t on call the night Isaac was born so another doctor performed my C section. He was probably the only time I was like what the fuck is happening at GBMC. He talked about his love for machine guns literally while he was sawing me open. Come on guy, this is the scariest moment of my life and you’re talking about the second amendment and shooting your big guns?! Everyone else in the room was amazing, as was everyone else the entire rest of our stay at GBMC.

Isaac spent 17 days in the GBMC NICU before he was transferred to the University of Maryland Medical Center in Baltimore. I can’t say enough nice things about the doctors, nurses, respiratory therapists, etc. etc. etc. They were all wonderful to us and took care of Isaac with the most love and care. They didn’t just care about how the patient was doing, they cared about Chris and I as well, and always made sure we knew what was happening. We were always included in rounds and invited to ask as many questions as we wanted/needed. It felt like home.

The nurses would shift every couple of days and we loved every single one. Each time we got a new one we were skeptical, and each one we loved just as much as the others. It takes a special kind to work in a NICU. I can’t imagine how rewarding and also saddening that job must be, but I am so, so thankful for everyone at GBMC.

I can’t write about our love for GBMC without mentioning the genetics department there. We spent so much time there getting ultrasounds and tests before Isaac was born, and once he was born they worked tirelessly to figure out what was wrong with him. Special shout out to Amy and Dr. Kline, we wouldn’t have any of the information we have today without you.

After Isaac passed away I wrote a letter to the president and CEO of GBMC. I just felt like everyone at GBMC had gone so above and beyond and it had to be acknowledged. I think I also suggested he give everyone raises, not sure if that worked out or not but they definitely deserved it. I definitely wasn’t expecting a response, but a couple weeks later I got one, a letter thanking me for reaching out. It meant a lot.

I should probably end this blog post before it becomes a full-fledged paid advertisement for GBMC!

August 21 – Do you have kids?

Never a fun question to answer. I never really liked answering it before I was pregnant either because half the time the follow up question is why don’t I have kids, when are we going to start trying, etc. (Stop acting like having kids is the end all be all, people!)

Now it’s even worse because I want to say yes, I had a son but he passed away. However, that makes people really uncomfortable, which is then awkward all around. So for a while I was just saying no, I don’t have kids, and hoping there wouldn’t be any follow up questions. Sometimes I would get follow up questions and at that point I would just tell them the truth. If you’re going to be nosy you deserve to be uncomfortable!!!

I decided a few months ago that I didn’t want to just say no anymore. Even if it makes people uncomfortable, I shouldn’t have to feel sad just to avoid an awkward encounter. I also like talking about Isaac and acknowledging him is a big part of how I can keep his memory alive. So now I just say I had a son, but he passed away, and I usually throw in something along the lines of don’t feel bad for asking, I like talking about him, I like thinking about him, etc. He’ll always be our son even if he isn’t physically here with us.

August 20 – Pregnancy Is…

Pregnancy is always seen through such rose colored glasses. People say things like it’s a blessing and it’s the greatest gift, and while that might be true, the real fact is that pregnancy sometimes just sucks.

People also say that morning sickness will go away after the first trimester. But guess what, that isn’t always true. Also not true? That it’s MORNING sickness. It’s all the live long fucking day sickness. I’ve always hated toothpaste, for as long as I can remember, so during pregnancy, every single teeth brushing was a gag festival.

And then there’s your new taste in food. You suddenly hate all the things you used to like and only want stupid shit like coconut ice cream with frozen raspberries and Royal Farms egg, cheese, and bacon wraps. Vegetables became like my kryptonite (that’s apparently Superman’s nemesis, I just had to google that), as did any meat that I had to cook myself. The grossest. Ew. I remember how that felt to just HATE a food all of the sudden and it’s weird. And real annoying. I went from cooking all the meals in our house to cooking basically just pasta and sauce for several months.

And then comes the scary pregnancy shit. Some people have good pregnancies where you go to the appointments and see the heart beat and it’s exciting and everything is fine. Our pregnancy appointments were never like that. During our first ultrasound they couldn’t find some of Isaac’s organs. Soon after they did find his organs but discovered that he had bright bowels and a thickened back of his neck, both signs of something very wrong. Many tests later, inconclusive. Then they found he had clubfoot on both feet. At this point they suggested we do an amnio.

If you don’t know what an amnio is, it’s when they stick a giant needle through your belly into your uterus to collect amniotic fluid. With no anesthesia. I literally asked them if they’d punch me in the face to knock me out. Strangely they declined. It honestly wasn’t as bad as I thought it would be. The nurse did try to hold my hand and I told her to get away from me, and then she told me my amniotic fluid looked good and did I want to see it?!?! NO YOU WEIRDO!! And after all that, again the results were inconclusive.

I say all this because pregnancies are very much so a happy and exciting thing, but they can also be scary and terrifying experiences. We basically lived in fear for months that our doctors would tell us they found something that was going to end up in us having to terminate our pregnancy. We have a 1 in 4 chance that our next pregnancy will end up that way. I say this to spread awareness that when you ask someone who’s pregnant how they’re feeling, how they’re doing, it should be acceptable for them to say that EVERYTHING FUCKING SUCKS. Pregnancy can be hard and awful, and that’s ok to be honest about.