Sunday, February 22, 2015

Portland, Poop, and Unconditional Love.

Yeah, today was a day.

Landon is coming off a week of being sick. It started with a stomach bug, then went in to sinus/respiratory/coughing crud. 

I'm super happy to have him well. Truly. I have to say, the adjusting back to real life has been somewhat challenging today. That boy has some serious sass in him. Couple that sass with a strong will like nobody I've ever met. Whew. 

There were time outs today. Tears. Fits. Screaming. 

He even fell asleep in time out, because he's that stubborn. 

I made a dinner I didn't even eat, because I had no appetite after being yelled at by a 4 year old dictator. Then, that tiny bi-polar dictator, began to tell me how I made the most delicious rice, and the best carrots he's ever tasted, and that cauliflower was just oh so good. *sigh*

So yeah, it was stressful. I decided that I would be having ice cream for dinner, after the kid went to sleep, because I'm a grown up and all. And because, dammit, I want it.

Then, just like that, it was time for bed. Landon was back to being sweet and compliant; jammies on, teeth brushed, smile on his face. He chose a few books and crawled up in to my lap, settling in his cozy spot on my left side, where he always sits. His head resting just below my shoulder, blanket and froggy in hand. I read to him, silently reminding myself just how precious this time is. Then, he wanted songs, so we turned out the lights and I sang. As I was about halfway through Somewhere Over the Rainbow, his breathing changed, and I knew he had drifted off to sleep. I finished the song, cradling him in my arms. Then it hit, I realized what day it is. The day 3 years ago, he and I flew 1748 miles to Portland, OR in hopes of healing his little body. 

You see, I'm very much an in the moment kind of girl. I tend to not dwell on the past, or think too far in to the future. Sure, I have dreams and goals, I just choose to soak up the moments I'm currently in, good or not so enjoyable. When we were in Portland, I had dreams of where I wanted Landon to be in the future, but I was very much present where we were.

Tonight, as I held my healthy son, remembering where we've been, I began to weep. I pulled him in tight and hugged his little body next to mine. And cried. I let those tears flow. I held him for a while. Then I carried him to bed, laid him down, and cried some more, as I gently stroked his hair, whispering 'I love you' over and over again. 

The trip to Portland changed me. Scott had already missed so much work, that he was unable to accompany me. I remember arriving at PDX, with Landon strapped to the front of my body, fighting with 2 large checked bags, a carry on pack on my back, my purse, his car seat, and a diaper bag. Not one person stopped or offered to help me. Landon said 'shit' for the first time that day. I walked through that airport, fiercely on a mission. I had this. Fuck all those people who couldn't be bothered to even look at the mom by herself, struggling with everything, and her baby, who needed a diaper change for the 8th time today, because he had just soiled his pants with the stench of another bowel movement full of blood. It was the most alone I've probably felt in my entire life. It was a kind of stress I had never experienced previously or since. When we were hospitalized with Landon, it was lonely emotionally at times, feeling like I couldn't properly communicate to others what I was dealing with. But, we had visitors, family, friends, nurses, doctors. Many people in our presence each day. In Portland, it was just Landon and I. In a hotel room. He was hopped up on steroids and having fits of rage. The kind where his eyes would go blank and I knew my son wasn't in there, until the rage lifted. I was alone. At one point, he raged for over 4 hours. We were in a hotel, with very thin walls. I tried everything I could think of to help calm him, all the while he was physically attacking me, biting, hitting, kicking, not even realizing what he was doing. There was a point I curled up in a ball in the fetal position, praying for patience, for him to calm down, for him to be healed. Finally, I put him in to our rental car and drove around downtown Portland in rush hour traffic, while he thrashed around, screaming in his car seat. After about an hour and 45 minutes of driving, he finally calmed down. We had been there for 4 days at that point. My sister flew out the next morning to spend the remaining 2 days with us. I'm not sure how I would have survived without her. Remembering those times, make me realize today was just a blip. I AM thankful for where we are. Believe it or not, I am also thankful for where we've been.

Pretending to talk on the phone, passing the time in our hotel room. I love those baby blues.

He spent a lot of time standing on that chair, watching the traffic and trains pass by.

I packed toys and books and made him play on the bed because his immune system was whacked and I didn't want him on the hotel room floor. Gross.

We shared a king size bed. 

Snuggling with Aunt Shannon on the night of her arrival. We both needed her, even more than we realized at the time.

Post shower. Our hotel didn't have bathtub, and he was terrified of showers at the time. He only got cleaned in that thing twice the whole trip.

We tried to get out and do some fun stuff. Here's Landon at Powell's bookstore. We went there several times.

This was taken after a particularly difficult day. You know, the one where the 4+ hour 'roid rage fit happened.

The night we arrived, we did our first round of fecal transplant, with Dr. Mark Davis. Never in a million years did I picture myself standing in a hotel bathroom, with a doctor I had consulted with via phone and Skype, yet just met in person, stirring my own feces. I certainly didn't imagine putting that slurry in to my son. But you know what? When your kid is sick, you will do nearly anything to cure them. We did this every night, and continued for several weeks after returning home.

This here is what we refer to as fecal slurry. It's feces blended with sterile saline, being finely filtered, to make it smooth.

There weren't many people who knew what we were doing in Portland. Of those who did know, most were supportive, if not a bit hesitant. I know a couple who thought we were completely crazy. I intuitively knew we were supposed to be there. That knowing is what pulled me thought the roughest days. I nearly got creamed by a car while I was parked in a lot. I saw it coming at me and threw our compact rental in to drive at the last second! I also had an odd sense of familiarity every where we went. Like, I'd been there before. Although, that was my first time. There were many moments we would be somewhere, doing something, and I would realize I had a dream about the exact scenario in the months leading up to our trip. There's no doubt there were angels among us.

Tonight is the first time I've ever really written about Portland. I haven't ever felt ready to write about it, until now. It's weird how that happens. This post is just a peek into our 6 days there. I hope one day to be able to sit down and write a lot more. 

THIS is our today.

We ventured out to see a movie, on this snowy day. 

I am lucky. I have a husband who loves and supports me. I have an extended family who would move mountains for me. I have friends who get it and love me for who I am. I have an amazing, brave, strong, healthy son.

I will leave you with this.