Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So somehow it’s been a year since I wrote this Andi Stuck in the Middle post.
One year. Like 365 days. Actually since it is April 1st it’s been more like 380 days or something. I’m not doing the math. There is no need. You do it. OK so I did the math.. 378 days.
But my point is somehow after all that marveling at the fact our middle girl was 10, well now she’s 11. What the heck.
Why do they keep getting older, it’s so unnerving.
So Andi Jane is now 11. Dude. 11.
She is still full of fire and crackers. She is light in the dark and can be a million shades of blue when she isn’t feeling what we are feeling.

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So 7 years ago today I went into labor after a pedicure and a castor oil root beer float. I did what I had to do. If he didn’t come before Friday the 6th I had a c-section scheduled and I didn’t want a c-section. So 7 years ago I, for the first time and with my third child finally went into labor naturally at home, well as natural as I could manage.
I didn’t really want him to come out. I knew it was my last pregnancy. I knew life as we knew it was gonna change. But I didn’t want that c-section and I heard that you really can’t stay pregnant forever.

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I’m waiting for the fog to lift. Or maybe I am waiting for my stomach to settle. I am wondering if I will wait the rest of my life for those things.

2016 has come and it didn’t get the memo. Sadly several stars names have been written all over social media with their too early dismissal from this world. And although it didn’t make the news feeds of everyone, my news feed was filled with the loss of not one, but two little girls who share the same genetic mutation as our Lily girl. CDKL5. Their names might not have made the national news, but their lives were great and they fought harder to live than they ever should have in the mere time they were with us. Harper, 5, and Sorrel, 15 months, both left this world this month and it’s been shocking and well to be honest, I don’t have the words because I don’t have the comprehension.

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Last night in the car Andi I were talking about maybe going on a hike if the weather clears up this nice long weekend we have ahead of us, and she said “oh yes please!” and I then said “we would have to see if Grandma would be able to hang with Lily while we go” and that’s when she dropped the truth bomb. The ones I like to avoid in order to just breathe. She says “that makes me feel like crying, always having to find someone to watch Lily so we can go on hikes and other things she can’t do. I just wish sometimes she was able to do everything we do”. And there it sat. That bomb of truth I keep circling around because if I keep things running smoothly and manageable and busy, I don’t have to focus on that deep hurt that sits in my chest. The one that has been there for 13 years and 4 months and will never ever go away. 

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Goodness gracious I am a horrible updater!
Here is the low down on miss LilyAnna Blu.
Since surgery in April she was hospitalized 2 times and was in the ER 3 times.
She has dealt with constipation, two UTI’s, a virus and then the virus settled in her hips and caused inflammation that caused great pain. All mostly resolved now.
She had 2 wonderful stays at the Ryan House whom we are forever thankful to the parents who made that place happen.
She has weaned totally off Sabril, in the process of weaning Triliptal and we are trying a CBD oil that is legal in our state, but not really showing much improvements of any kind. I am reading you have to give it time and tinker with the dosing. We aren’t giving up, but I am loosing hope that it is the miracle we are seeing all over the news and social media, to us anyway.
Good thing is I have a protected heart. I have a money back guarantee type of surrounding so when things we are told will be that miracle and they never are I am not crushed like I used to be.
I am not crushed because while it may seem I have lost hope, I haven’t really. I just lost hope in things that will never be.

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It is pretty rare that I read a book and I say holy crap, that is my life. Written from a person who is spying on my family. But it happened. It actually happened a long time ago before I even knew it was foreshadowing my own life. But it happened and I guess it probably happens to a whole lot of tired mamas when they read Give a Mouse a Cookie.
I am sure you all thought I may be diving deeper here with a start up like that, but I am not.

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Goodness I hated last post. I couldn’t even go back to re-read and edit. It was just yuck to remember that day/weekend. I hated the feelings it all brought back, the images of her struggling for every breath. Remembering Nurse Megan’s sad face. I can handle my own sadness. I can breathe in and out and survive really hard things, but when our sadness is shown on other peoples faces I just can’t. It’s why I never watch seizure videos friends post. It’s why when I was at my friends house and watched her daughter seize I went looking for a hair brush for her because watching my own story unfold in other peoples lives is just something I can’t do. Well I can do. I can do anything. I just hate it. I hate how much it hurts. So that day, that weekend really hurt and when I saw on other people’s faces what we were feeling it just made me want to pack it up and walk out the door. Not that I ever would. Ever. But sometimes you just can’t imagine taking one more step forward and thank THE GOOD LORD when I can’t take those steps he carries me through.
So forgive the last post. I just really didn’t write like I like to. I imagine it didn’t read like I like my stuff to usually read. It was just really hard.

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I find it hard to believe I am on Post 4 and just 3 days into the whole ordeal. And honestly not finding much energy to do this and I guess the only reason I am doing this is for myself. For later. As fast as I am loosing memory of this time I know it will all be gone and having this is important. I think. I am pretty sure of it. Kinda. 

Oh and just a quick update on that last hospitalization, she is good. UTI all cleared up, still struggling with getting her to poop regularly and think it has to do with her not moving like she used to after surgery and still so it is a daily struggle. Literally. But she is much better. We were able to go up North to Greer and had a great time and we went to South Dakota to visit family and she did wonderfully there. So that’s that.

OK so Friday April 10th sucked. And let me begin by saying Friday is my favorite day. Of all the 7 days, Friday is my star student, my shining star, the one day I prefer no one to mess with. I am a more of an anticipation person therefore Fridays always trumps the weekend. It’s the being excited for than the actual thing so this day being Friday was honestly just really rude. It was like someone trying to ruin Target for me. Toddler Andi Jane tried to do that. Multiple times. But we survived and Target is still my happy place. Friday has once again became my happy day. 

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My Facebook status post 4/7/2015 sometime late into the night:


They say she won’t remember these days. I wish they could say the same for us. After a successful surgery things post op took us for a loop. After multiple complications they realized Lily was rejecting her own blood they gave back to her in surgery. That caused a whole lot of problems all leading up to her being ventilated. We thought she’d be off the vent by now but seizures came fast and hard and then a plethora of medications that weren’t doing anything for the seizures. I think I can safely say she is resting peacefully now and we might get a little rest but because she is so sedated she can’t come off the vent. I am clinging to my knowledge that joy comes in the morning. I am clinging to knowing this needed to be done and knowing we are not alone. And I am praying she has an uneventful night and we make a plan and all goes well tomorrow. Thanks for praying. Trying to keep folks updated but it’s hard. This is hard. Parenting can be the most heartbreaking job on the planet.

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