I feel sometimes like a slave to this blog; not that I dislike writing on it. It's the fact that its morphed into something so far from what it was originally intended to be: A diary of my kids' lives. It's twisted into "Ashley's problems" and "pray for this" or "pray for that." It's getting old for me... I want to talk about what my kids are doing; I want to tell you about the insane, unbelievable things Stella does. I want to have a neat little blog post, tied up in strings (like they used to be) showing, "Oh look! We went berry picking! And here are our beautiful pictures!" The truth is, it hasn't been like that in a long, long time.
And thus, I feel a slave; its like the blog that won't die.
Maybe when this stuff passes I'll start clean.
For now, it's your random post, full of ramblings and nonsensical run-on sentences... a girl pining and whining her way through life.
I get way too many messages saying the same things, "Ashley, you are strong! You're a source of strength for so many!, etc." Wrong. WRONG WRONG WRONG.
I am weak. I have nothing left; what you see floating around town is a body. The brain, the heart and soul are elsewhere. In "lala-land" or something. Always thinking and churning over the "what if's." Always beating myself down for not being the best mom or the most amazing cook or wife.
I often look at my days like a giant "to do" list. Was I a fun mom today? Did I tell my kids I loved them enough? Did I tell Ryan I loved him? Did I tell him thank you? Did I cook dinner? Did I pick up enough? Did I spend enough time with the kids? Did I? Did I? Did I?
The answer is no- I fail on all of that. Everyday. Especially days of late. I've had to step way, way out of my comfort zone and allow others to bridge some hefty gaps. Gaps that were once my territory; I'm leaving them open for others to fill. Some are simple, but incredibly (OH MY GOSH INCREDIBLY) helpful, like making dinner or a gift card for dinner... You guys... YOU GUYS. You have no idea. Just none. We'd be on our 30th day of Chick-fil-a if it were not for y'all. So THANK YOU- beyond WORDS! Thank you.
Other gaps are harder to watch; like when my friend had to take Henry's first day of school pictures. I cried the entire day, which led to a crazy migraine.... yeah that was tough.
But to know I have friends and family that are ready to jump in and pick us up, plug a hole in our deflating balloon; that's priceless and I seriously cannot thank you enough. I've never felt more loved.
This blog post has been a thorn in my side for awhile. I was planning on writing some sort of whiny post (typical) around the beginning of September. And then sh!t hit the fan.
Our babysitter arrived like normal, to watch the kids. I had had an appointment the previous day; a gallbladder scan (a Hyda scan?) and wasn't thinking much of it... other than I had a pain in my right side and was interested in hearing if it was my gallbladder or not. After leaving the house I pulled into Panera's with this laptop (that I'm typing on now :) and got a call- it was my GI doc up in Jacksonville. My gallbladder wasn't functioning- like at all- in fact it was beginning to disintegrate. They asked if I could come up pronto to be admitted and get it taken out. Thankfully, our sitter and my family worked together to make all of that happen and I drove to Baptist Memorial on a Thursday, for what was supposed to be an easy gallbladder surgery.
I was admitted and my surgeon wanted to run a CT scan before surgery. I was doped up, and couldn't have cared less. One CT scan later, I was taken down for surgery. Literally, as I was getting off the elevator (or being wheeled in the stretcher) a surgical tech came out to meet my nurse and said, "Is this McKenney? She's not having surgery . I don't know the details but its canceled for right now." And that's when the hospital stay turned into a nightmare.
I was brought back up to my room, where I sat with (sister) Emily. We ping ponged ideas back and forth, wondering what would halt surgery... around 8pm they brought me down for two MRI's that I swear was the equivalency of being in a pit of snakes. #IhateMRIs I still didn't have a CLUE what they were looking for but the MRI tech was awesome... and I asked a sneaky question, "So, what are you looking for with this scan?" And he answered, "Primarily the liver."
I pondered that. The liver. Hmm... But then also knew the gallbladder lied inside the liver, so I guess it wasn't too crazy? Anyways, we got through the MRI (barely) and I was taken back up to my room.
Around nine PM, the lights shot on in my room and a team of doctors swarmed my bed. I honestly can't remember how it was said- what all was said, I really cant. But it was basically "We didn't do the surgery today because you have a lot of issues. We found free fluid in your abdomen, a large cyst on your ovary and a mass on your liver. Now we know your gallbladder isn't working, so it certainly could be a reason for your symptoms and pain, but you need to know that we could take the gallbladder out and nothing could change. Meaning, you'll continue to have pain, because you have several other conditions going on."
I said to go ahead with the surgery- to knock that off the list. The doctors agreed, saying it would be nice to have the gallbladder off the table; not a viable source of the symptoms.
The next morning I went in bright and early for surgery. Because I'm Ashley, there were complications getting to it and I had some anesthesia issues as well... which prompted an automatic night stay. And honestly, I was in SO much pain, that was fine with me.
I have five incisions. One in my belly button, the other four up top. And for the first day, I asked for morphine whenever I could get it. It hurt THAT bad.
Normally when I am in the hospital I keep a stiff upper lip; refusing meds because, who knows. They'll ask me to rate my pain and I always answer with a 2 or 3. An hour later they'll find a stone ripping down my ureter. The nurses fawn all over me, "We have grown men come in here saying they are dying! And this is what, your 15th stone?" Stupid pride.
Okay- back to Baptist; While in the hospital they found a new reason to keep me (it seemed this way).... each day. Something was ALWAYS wrong with my labs or scans, etc. It was just a really hard, not fun, tear and anxiety filled week.
The stiff upper lip completely quivered and I surrendered to whatever they would give me. I was sick, in a ton of pain and my chest was filled with panic.
Also, did you know getting released from a hospital is kind of like being released from jail? Like you are THEIRS. They OWN you. I had to get permission from ALL of my doctors that I could be discharged. And at this point in my stay I had a floor doctor, a GI doc, a surgeon and a neurologist. And there was so much miscommunication; one doctor would say "she's good to go!" The other would say, "I need more labs. Or let's repeat this scan." It went around and around like that until finally- FINALLY- one of my doctors rallied all the signatures needed, and I was out.
At home I took up residence in bed. Typical. And that's when the meals started arriving. And its here that I lack the words to properly thank you all. But I'll try.
Ryan was brushing kids' hair, teeth, filling back packs, tying shoes, etc. And YOU saved him from a necessary, but everyday hassle; making dinner. I know I keep going on about it, but really- the outpouring was just insane. I cried every time I read a card, or ate a meal that someone had taken the time to cook and deliver. Just thank you... over and over and over again.
Somewhere around day 3 of being discharged from the hospital, Ryan started talking about resigning from his job. I think I cried for about two days straight. I envisioned the power being turned off, standing in line for WIC, having to move the kids again, etc. (my psychiatrist says I like to make catastrophic events in my head- wha?? He so cray cray.)
So yep. That's a huge announcement. The change that trumps all changes. Ryan resigned. He's done at Embry Riddle. He's home taking care of his forlorn wife. If you could only imagine the guilt... it's all consuming. We keep joking about "for better or for worse..." But we have four kids... we can't play around here. There are bills to be paid, an incredible amount of logistics to get through (like finding GOOD, new insurance...gahhhh)... and most of all, leaning SO heavily on the Lord. We're living on hope and faith right now. And so far so good. Why am I surprised? Does the Lord ever fail? This may not have looked like the life I thought I'd be living this year, but it's exactly what He has written. I don't know the why or what or when.. but He does.
I am officially 1 month out since my botched gallbladder surgery... (well not botched I guess; they did get the thing.... after 6 incisions). My insides still ache and the fatigue is overwhelming. All the time. I feel like I'm standing in the middle of the road, cars flying by on both sides of me; life happening everywhere- and then there's me. Stagnant. It's all too fast right now,- the world that is. I can't keep up with it and its making me feel like the biggest failure.
Because I lock up my confidence and self worth in silly things like, making the perfect pinterest cupcakes or having the best dressed kids, the moment something slips (ie- we bring a bag of PRETZELS for snack- and they're in a bag, like we picked them up on the way to school, which we most certainly did). I could just see the other mothers eying my bag of lazy pretzels.
I need to get over lazy pretzels.
Anyways, a bit ago I got some sobering news. The liver mass has grown 1.2 cm since my last scan- that's a whopping total of 9.2cm of SOMETHING that's squashing and taking over the right side of my liver. And yeah, it hurts. I think the pain is simply because of the size; its protruding out- my belly is SO bloated; I mean that sucker's gotta be pushing on stuff right? UGH. Disgusting. I met with my internalist to figure out what to do/where to go next. Last week I had a colonoscopy (terrific times) and I've scheduled my liver biopsy twice. And have cancelled it twice.
Yeah. That's about where I'm at right now.
We did get some incredible news from my neurologist- my spinal fluid is perfect; He felt confident in ruling out MS. And it snapped me back into reality. Just hearing that, "We can rule out MS or anything else that's a serious neurological issue."
I fell back into me.
I thought the transition from "sick Ashley" to "normal Ashley" would be earth shattering; I basically had a zillion pieces to pick up.
It was anything but earth shattering.
Wait- I take that back... it was earth shattering, but in an amazing way.
I came home, cried with my mom, praised God about the incredible news of no MS and decided in that moment I was me again.
I could think about going to Disney World and walking around with the kids. I wanted to go grocery shopping! I could get out of bed in the morning, excited for the day. It had been a long time since I had felt any kind of pure, sugar, maple syrupy happiness. And I let myself sit in that moment for awhile, day dreaming of life withOUT MS.
It was a really, really good day.
This post gets a few awards tonight; I'll start out with "most whiny" and follow up with "longest post ever."
Okay- so today- here, and now. I am due for a liver biopsy that I can't seem to keep on my calender. I don't want to do it. I don't want to ever go back to Baptist. I don't want medicine. I don't want pain. I don't want to know what this is, growing inside me. In the same breath, I can say I need to know what is growing inside of me.
Tomorrow's goal is pretty simple: Reschedule liver biopsy for the 3rd time.
Following through is where I'll need some encouragement. :)
I'll try my best to keep you updated.
On a totally NOT medical note, seasons are changing, transitioning to a cooler, colorful time. I call this weather my "second skin" weather. You can walk outside and I swear, the weather matches your body temperature (obviously it doesn't.. but it feels that way). It's just sweet goodness.
We have four pumpkins on our stoop. Two giant spiders (real ones), weaving webs around our porch. Sidewalk chalk drawings have taken over our back patio porch and there's a constant smell of leaves and coffee in our house. I love it.
Something I've been struggling like, horribly with, is faith. Or trust-(lack of) whatever you want to call it, when I decide that the world is ending and my heart is going to fail and my kids are going to find me passed out on the bathroom floor. What does tomorrow hold? I wish I knew. But we're not meant to know. I have faith in my God. He's done amazing things in these past few weeks (years,- my entire life)....
That's super easy to type out and its simple. It makes me feel like a good person. The truth is, practicing this kind of faith and trust in Him is hard. HARD. The day of my neurology appointment (pre-appointment) I sobbed, listened to a few of my favorite worship songs, got on my knees and cried (literally) to the Lord. He delivered. No MS.
You'd think my faith would be sky rocketing high, right?
Now my mind is triggered on the liver thing. Christians, how do you give it ALL up to Him? And why is it so hard for me?
A friend of mine (she'll remain anonymous :) prayed with me a couple of weeks ago. Through tears, she asked me, "Ashley, if the Lord takes one of your kids, are you going to deny Him? Will you not worship Him?"
Automatically, like my soul was being held in His hands, I said "Of course not! I will forever worship my God."
I've been thinking a lot about that conversation. There are three thousand things that could potentially go wrong at any given second and trust me, I can come up with some good ones (one of my current fears is being swallowed in a sink hole...yeah) anyways, if any one of those three thousand things were to happen, would I abandon my God? Never. And I guess that's the moral of this HUGE, long, rambling post.
No matter what happens, sink holes, my kid being bullied, liver cancer, WHATEVER- my God is HERE. He is ALWAYS present. And I will always bow to Him. He is ALWAYS good. Even in the midst of super scary times. He is the One I can cling to, and I know I will never be failed by Him.
I'm focusing on this; remembering His love for me. His love for my kids. My heart is His, and He's in mine. And that's what's going to help me walk out the front door tomorrow.
Alright- I think this is over.
Goodnight, God bless. Be thankful for health! Live life beautifully- fearlessly.
(but still watch out for sink holes- those things are real).
:) xoxo- Ash