I've been home from our most recent Seattle trip for about two weeks now and I feel like I am still trying to recover.
It was that traumatizing.
Liv was scheduled to see her ocularist, have an EUA, and see her oncologist. These trips are always especially long hard. It's a lot of time spent sitting in small exam rooms, pre-op for surgery, and then more exam rooms. I have some pretty intense anxiety building up to these trips, and this time was especially bad. About a month ago, I noticed a strange lump in Liv's neck. It had slowly got bigger and had me so worried. Given her history and what we can expect in her future, any strange lump or bump is going to put me on edge. You could say I was a basket case in the weeks leading up to this appointment, but that would be a gross understatement.
This trip happened to fall over Brandon's finals and he was unable to go with me. With that and our business and its complete unpredictability, we decided that it would just make more sense for me to take Cole as well.
I'm gonna sum up the trip for you. Lots of crying from me, lots of screaming and crying form Cole pretty much everywhere we went (and for hours and hours), no one slept, more crying, ferris wheel (!) rain, emotional breakdown in oncologists office, 3.5 hour drive home, with more screaming, Brandon greets us at the door and I, again, burst into tears the moment he hugs me. My nerves were ragged and my patience was running dangerously thin. Really, the only reprieve I felt in those three days was those 5-6 minutes on the Seattle ferris wheel. It was a bit of magic for Liv. That girl is alllll about the magic. So I'm good with that.
But anyway. It was just bad. The news we got was pretty much good. No new tumors have developed in her eye. She does need a new prosthetic (womp womp), and her oncologist seemed to think her lump was just a weird infection, nothing major as her blood work was good. It was only after the good news that I burst into tears.
Poor Dr. P, didn't see it coming. He looked at her, then at me and slowly shook his head saying, "Considering everything, her chromosome deletion, all her hurdles...she just shouldn't be doing this well." I felt a stinging in my eyes, tears were threatening. He then asked about our job, about Brandon, and I explained finals, how the two of us run our business 7 days a week. He asked some more questions, watching me trying to soothe Cole, keeping Liv occupied, trying to keep the situation peaceful as I talked about my worries with all of that and my anxiety surround Olivia. He leaned toward me and quietly said, "It's hard. I know it is. You're doing a good job, mama." And then I lost it.
I felt, at that moment, anything but a good mom. I feel like that often. I was sleep deprived, overwhelmed with relief, and physically and emotionally exhausted. I try not to think that my life is "hard." Hard has always equated to "bad" in my brain, when that is hardly the case often times. But here's the thing... My life is good, and I like it and I wouldn't trade places with anyone for anything. But for some reason, when this doctor who knows me, but not really the details of my life outside of my sick child, looked at me and gave what felt like permission to acknowledge that while my life is good and I have so much to be grateful for (and I am!), it is also hard. It was validating, something I wasn't even sure I needed, but I did.
My life is hard. (That is another post, for another time) But it's okay, and I'm okay.
Everyone's life is a bit hard, I think. Hard different ways, but we all have our struggles. And that's sort of the point, I guess. Life is hard for everyone, that's what teaches us compassion and is basically the whole point anyway, right?
So, I guess I'm just gonna put my shoulder to the wheel and all that. Because what else am I gonna do? I'm just committed to making the best of whatever lies ahead.
So. All in all I learned:
1. Cole will NOT be returning to Seattle in the foreseeable future.
2. Olivia needs a new eye.
3. The Seattle ferris wheel will save the day.
** Almost five weeks later and this lump in her neck is still there, and it's bigger. We are seeing another doctor Wednesday, because I'm not at all convinced she is in the clear.