Is it Sunday? Yes, it is definitely Sunday. For the 4,968th day I sit here in my pajamas/loungewear/elasticized outfit from my home. I have gotten through the toilet paper shortages thank goodness. That was not funny to someone with IBD. My caring husband may or may not have purchased some public restroom emergency tp which is the like of a 3 foot wide roll of fine sandpaper. What can I say, he loves me.

‘Home’ is something that has much more meaning than ever before now that we all sit here inside the walls, both physically and metaphorically. Home is usually a place of comfort. Home is where we go when we need to rest and refuel. When we need to remember our roots, who we are deep down. But now home is much more. It now has to fulfill all of our emotional needs, interpersonal connections, humor relief, travel urges, creativity inspiration and the basic necessities for which it was created. That is a ton of pressure to put on 2, 3, 6, 8 people that are in your home. As my family goes through the daily ups and downs of being in quarantine, I have realized that we need to be extra patient with ourselves. We are now trying do the work of all the outside forces in each of our lives. That is a lot to expect that we can fill the void left when the world around us is closed indefinitely. We have decided that in our family, Friday seems to be the day when we usually say “I am sick of your face, goodbye” and retreat to separate corners for awhile. Our once harmonious nightly viewing of Tiger King has become more of daily weighing of pros and cons of starting a new series. Can we as a family, commit to watching The Sopranos? So far we are doing it. Dave has titled it Fuggedabout COVID Happy Hour.

But…and this is a large BUT…with all of the challenges we are facing right now, home has also proven to be the place of magic like we always knew it was. We are so lucky to have our daughter home again for the past couple months after campus shut down. We get to see our son everyday instead of him going to school and finishing up his senior year. Firsthand, we can witness the waves that come with my husband’s job as he works from home. The thrill of victory when he makes a sale and the agony of defeat when he doesn’t. My family sees me try and construct meaningful videos of me singing to the dog for Google Classroom for the little faces I miss so much at nursery school. We get to cook together, laugh together, argue together, dance together and cry together. Those are the beautiful moments. The ones I will try and remember next Friday when I say “I don’t want to see your face, goodbye” and go to my own corner.

It’s so late. In so many ways. So late since I wrote my last blog. Let’s not even track when that was. It’s late just because…it’s late. 12:13 am is very late for me. Like, reeeeaal late. But it’s not too late. It’s never too late.

It’s never too late to realize shit about life. That’s what life is. Realizing stuff. Again and again. Even when you thought you had that shit figured out.

Things have been lining up. You know what I mean. Things are lining up in that way that makes your gut hum and feel good. And yes, we IBD people REALLY feel it in our guts. Signs are showing. I scratched a bug bite today and then, poof, was behind a pest control truck. I thought about Chick-fil-a and poof we were at the exit for Chicopee, Mass. My Dad loves streetcars and voila, there is the stop in Boston where we were. Ok, it’s not perfect science but you know what I mean. Life has a way. A way of showing you just enough to keep up the hope.

I have thought of so many blog posts over the past however many weeks. But none got my fingers to start typing like they did tonight. Or should I say this morning. Which is late. So late for a morning person. The signs have come together to make me sure that something is on the horizon. I guess I have already made that clear so I will get on with it.

At 48 (wow I said that), I have come to realize that there is no “easy street” around the corner. There is no such thing as “oh if we get through this, the rest will be easy”. Nope. Life is a real test. All the way. But here’s the twist. It’s a beautiful test. We get the privilege to live it the way we want. It is a constant day by day self-talk of how we want the day to go. I can make the decision to see the short-comings or I can look for the sunshine. Let’s be honest, many times, the sunshine is hard to find, often hidden underneath the mask of whatever life has handed us a few breaths before.

But then you see the pest control truck. Then you see the Chick-fil-a / Chicopee connection. Then you see all the other bright spots that were hidden but now are shining with a little dust of a cloth. What is my point you ask? I am sure I am not sure. But I am also very sure. The kind of sure where your stomach flutters and your mind races in a good way. The kind of sure where a desert mirage is real and things that were murky are now through a sieve. Still floundering about what this post is about? Me too. But yet I feel really really sure about it.

A few weeks ago, my daughter asked when I would write my next post. I think I mentioned I would be posting once a week. That did not happen. Life got in the way. Sometimes the curve balls, the fastballs, hell, the regular balls through you for a loop and before you know it, you have a full count. It’s messy like that. Life, that is.

Back in 2000 (said in that voice that dates me), we went to visit college friends in NJ whose daughter was born around the same time as our daughter. It was such a nice time. Both of us, young couples, with our first babies, fresh into the world with no clue about anything. We held them up, compared notes, took pictures and promised to keep visiting each other. Goodbyes were said and off we went with our baby heading back to NY. And then it happened. I felt flushed, got a stomachache and that old familiar feeling. Bathroom needed now. As usual, Dave was supportive and tried to figure out where I could…go. But what someone without UC does not know is that someone with UC does not have the luxury of time. No holding it. No I will wait for a suitable location. It’s , Jesus take the wheel and I will go anywhere that is preferably not in our car.

Just so happens, we passed a construction site port a potty. He said, “Here”? . Yup, done deal. OH, I should mention it was summertime and the outside temp was about 90 degrees. You can only imagine the temp inside the potty. The term ‘I could fry an egg on the pavement’ was an understatement. Sweating, but with no choice, in I went. I think I remember talking to Dave the whole time. Just another reason why I love him. I can still picture in my mind the blue glow of the thick plastic shell as I tried to get things done and get out of there. It wasn’t pretty but it worked.

Life is hot. It’s messy. It is full of things that test you and make you rethink your solution that you swear was perfect the day before. But when you are in (or on) a hot potty, just breathe and remember that it’s okay. Or if it isn’t then, it will be.

When our kids were little the whole swivel concept on a stroller was not really perfected yet. We had a green double jogging stroller. In order to turn the thing, I had to put all my weight on the back bar and push down on the top handle. Every single damn time I turned it. But I didn’t care because once strapped in, freedom washed over me, as we set off with drinks and snacks in hand. This is why I refused to give up the green stroller until I could no longer physically push it. I think the kids were 10 and 12. Okay, a lot younger than that but people had to wrestle that thing from me when it was time.

Often times in the summer, our adventure involved Lake Mokoma, PA. Getting around the lake in the green stroller was always a daily goal. However, having UC, I never knew when I would need to go to the bathroom. When walking around the lake, the bathroom was the woods. And what you may not understand is that with IBD, the urgency is so profound there is no waiting. No holding it. So, if the stomach pains started I pushed the kids into the woods, put the brakes on and trotted off behind a tree with my “kit”–what one carries when they know an accident could happen at any time. After, I returned to the stroller and off we went to hopefully finish our walk.

Along with my faithful green stroller, was the potty in the van. I went with the ruse that it was for my kids. You know, for potty training. But I used it far more than them. When we got rid of our minivan (still miss it), I would pull over on the side of the road and into the bushes I went. My Dad would often spend time with us in NY in the summer and he was with us on one such occasion. After I returned to the car where he sat with the kids in the back, he said “Gosh, I guess that corn will grow tall. You fertilized it”.

Now I have to talk about the dirty stuff. The times when I didn’t make it to any bathroom stall, or woods, or anything. At all. I remember calling my mother in law shortly after we moved to Skaneateles. “Well, I had my first accident on the streets of Skaneateles”. Not directly on the sidewalk, mind you. In my pants or shorts or whatever. Now take a minute to imagine this. Walking down Genesee St or the main street of any quaint small town…with shit in your pants. It’s humbling. Suddenly, I am brought back to toddler days but with adult shame in tow.

SO what’s the point, you ask? Well the point is our kids grew up with the nuances that went with the green stroller and the potty and mom tying a shirt around her waist because “it happened”. Kids are resilient. I like to think that this may make them more empathic of others who have a chronic illness. I think dirty, embarrassing things like this are worth talking about because it needs to be. We need to talk about things in life that are messy. Literally and figuratively.

That’s it. It’s time. I have talked about writing for years now. And it’s time.

When I was about 9 or 10, I had the worst case of chicken pox. My mom called Dr. Buttson (his real name) and he said I must have them INSIDE my stomach. I couldn’t eat. It was awful. My first meal after many days was an Amoroso roll with butter. Still my favorite comfort to this day.

After that, I remember lots of nights on the toilet with a stomach ache. Many doctor visits (Dr. Buttson) later–lactose intolerance. I still blame the chicken pox.

Eventually, they say I “grew out of it”. Drank milk, ate dairy products, but never with the full fledged feeling that it was for real.

Then, in 1999, my nephew Jacob, then 13, came to stay with us for a week. He loved horses and riding and so did I. I took him for a trail ride at a nearby stable. As we got close to the place, my stomach started it’s thing and I spent 20 minutes or more in the outhouse as Jacob waited patiently. Days went by and it got worse. I went to my doctor who sent me to a gastroenterologist. He asked me tons of questions and did bloodwork. “Any chance you are pregnant?” Well, we had just tried…ONCE. Earlier that week. A few days later came the news. I was pregnant and had to come in for a colonoscopy ASAP.

Omg. They were so cold and unfeeling. I was one of hundreds of their patients. Meanwhile, they were my only experience with this and I was a young, newly pregnant woman. “There’s the container” the receptionist said, pointing to weird white bucket like thing. I came home crying to my husband, not feeling well and emotionally spent. He went in the next day and lit that office on fire. To this day, I think its the most obnoxious and sweetest thing he has ever done.

So about 20 years later, here I am. I think I have a lot to say about life. Most of it, through a bathroom stall.