I started this post at 3 a.m. this morning. I was all snuggled in the corner of the littlest one's bed, listening to his breathing, wondering how long it would take his brother to realize I was in the bottom bunk. (He never did!) I just couldn't sleep.
One year ago was my surgery day. The true physical beginning of this journey. As I lay curled at a very awkward angle around the boy, I was remembering back to the same exact time that morning. I was laying in my own bed, awake, willing time to stop. I had no idea of what was coming for me, I just knew I didn't really want any part of it. I was trying to figure out a way to just run away, avoid it. But there was no getting away...this beast was inside of me and the only way to get it out was this surgery. It was not a good morning.
This morning was a very different story. I was in my happy place. These boys, their sister, tween that she is, the hubs...they are the reason I didn't run away. They are the reason I made it through those dark days in the hospital, through all the radiation and the yuck that followed it. I found a very peaceful place in my journey this morning, and it was a very good thing.
Fast forward to later in the day: last week was my trach removal and today was my follow up. I thought it so fitting that I would have this appointment on this anniversary day. My doctor, my hero, walked into the room all smiles and said "This is it, this is the appointment we have been waiting for." Never have truer words been spoken. For a week now I have been taped up, coughing a lot at first, then less and less as the days passed. As he removed the tape, he was all smiles. Healed, closed, the horrible, awful, bane of my existence trach was gone for good. No more hole in my neck. His comment about it..."Your body really wanted that trach out! It was ready!" Abso-damn-lutely!!! I have to wear a bandaid over it for the next seven days, but then, that's it, I'm done! Unless of course, I hate the scar so much I want him to revise it. Very, very doubtful!
(Before I tell the rest of the story, here is the funny for the day. The two big kids had doctor appointments just before mine and Steve had joined us, so we were a full house. As the nurse was checking me in and discussing how I was feeling without the trach, my darling D., who maybe doesn't always pay attention to what is going on, says "Oh hey...your trach is out! That's cool!" Yeah bud, it's only been a week. Way to notice!!)
So after that happy appointment, I had treats to deliver. I had already left cookies for my doctor's staff, just as a small thank you for the hard work that they do. Now it was time to head upstairs. It was important to me to thank the nurses who took care of me while I was in the hospital. I don't have many memories, and none of them fond, of the ICU nurses, although I'm sure they were wonderful. What I do have is enduring memories of the care the nurses in the unit gave me. At my very worst, they were there for me, some of them holding my hand along the way. Of course some were better than others, that's true in any profession, but for the most part, I really felt like the nurses who cared for me were amazing and compassionate and calm, even when I wasn't.
As we walked down the hallway to the unit, we passed through the waiting room where families were sprawled all over the couches and chairs, waiting for any bit of news from the operating rooms. Steve told the kids that was where my crew waited all those long 11 hours during my surgery. At the time we were walking through, I would have only been about halfway done. I got a chill as we walked by. Then into the unit I went, big box of sweet treats in hand. I explained to the nurse at the desk that I just needed to drop the treats off to thank them for everything they had done. I knew my nurses weren't necessarily there, and that was okay. I wanted all the nurses (and the CNA's...I mustn't forget the CNA's!!! Their job is crucial too!) to know that their work meant the world to me. The nurse asked which room I had been in and I honestly couldn't tell her. So many parts of those days are still very fuzzy. It didn't matter though. This was the closure I needed. She was genuinely touched that I had thought to bring them treats on my anniversary day and wrote my name down, promising to find my nurses and pass along my thanks. It was a brief interaction, but it meant so much.
When we got downstairs, I immediately recognized a woman in the lobby as the Child Life Specialist who had spent hours with me while I was in the hospital, helping me formulate a plan for reconnecting with my children when I got home. She was the one who gave me the idea to take the pictures of my different surgery sites to show them where they could touch me gently and where it would be painful. That made all the difference to us and the boys still talk about how they knew they couldn't touch my arm because of the ugly picture, but now they can because it is just me and it doesn't hurt. So I marched right up to her and thanked her too (I was kind of sorry I didn't have another cookie with me!) I told her that I thought she had an incredibly important job and she was really good at it. I know that she was touched, but really, it meant everything to me to be able to tell her that!
So that was it...my very happy day! I wasn't sure how I was going to feel today, but honestly, through all the reflection, I am just simply happy. I know there are going to be hard days ahead. I'm not done with everything. There are things I will be dealing with for the rest of my life, side effects from the surgery and the radiation, but now I know there isn't anything I can't handle. I am resilient, I am strong, I am a warrior!
Oh, one more thing. I have posted very few (almost none, I think!) pictures on this blog. It has not been pretty. There are pictures from this year, but none that I want to look at regularly. Originally I thought I would post them, but I just couldn't do it. It was too painful for me. That changes today! I'm no selfie expert (apparently I need some selfie tutoring from my daughter) but I wanted to share a couple of pictures. My neck is free and clear and something to behold! And the scars, the scars I worked so hard to earn...they are so much smaller than I imagined. Not going to have a problem rocking them at all! So here goes...the big reveal!