Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

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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Tuesday April 7th: 4:15 am the alarm went off. I was already awake. Got dressed and packed the room up, lastly Andrew picked up a sleeping Lily and put her in her wheelchair. I was told not to give her anything to eat or drink, I asked about 80 times if I can give her meds and they said no. They said she would have enough in her to not need her seizure meds. This is one of my biggest regrets. I could have given her the tiniest bit of water with her seizure meds. I didn’t and regret that. We loaded up and were out the door before 4:45 am, it took a mere 5 minutes to drive down the dark and deserted Thomas road (that never happens) and then there we sat and waited until 5 AM when the parking garage would open. We sat, Lily slept. I am not sure what we talked about, if anything, I don’t have the slightest memory of that morning expect for watching the car in front of us -another early bird- and wondering what kind of surgery were they there for. We all know no one is at the Children’s Hospital before 5 AM for anything else. And I should mention if this was all on my time, my schedule, my choice we would have been 5 minutes late and didn’t have to sit behind this car and just sit. I run on perpetual crazy. I like it that way. Too much time just leaves my mind reeling and for a person who lives in constant chaos in the brain it’s no good (PS the other day Oliver asked me if chaos was a bad word. What a funny word for him to think is bad. That had me thinking about what it is like to be a kid (my kid most especially) and wondering what words are bad. It must be like walking in a minefield. Sorry kids. I don’t like bad words. Dammit.). So basically sitting still time is not appreciated, nor desired. Thanks hubby. You and your darn instance for being early to everything.

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So here it is June 10th… 2 months post op and I sit with the keyboard under my fingers and I type and think do I want to go back there? Do I have the energy? Do I have the memory? No, no and no. But I am going to do it anyway.
I have decided this is for me. This is for my memory that is fading as each day passes. I don’t remember much of Lily’s brain surgery back in 2005 and reading my blog from that time is hard, but also important and I feel this will be the same way.
I will break this up in a few parts for myself and for you few dear readers I have left.
I don’t know how this is going to look and how readable it will be, but it is hanging over my head in an invisible to do list that I am just ready to check off.

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Packing, shopping, waking up at 5 am every morning to get work done so you can be gone for a week, loads of laundry so we can pack, preparing schedules for the kids while we are away sounds a whole lot like vacation. But it is not. We are preparing for the zombie apocalypse, oh I mean Lily’s surgery. The one where they cut all the way down her perfect skin and straighten her spine with rods and pins, bolts and metal in her precious untouched, unblemished body. The one where we are told pain management is number one priority and pain will be very prevalent. In our sweet girl, who knows little pain and doesn’t have the ability to say mama.. it’s at a 6, it’s an 8, God forbid, it’s a 10. We have to guess at how we help her going off instincts and her cues. Obviously something we’ve done for 12 years and I am fairly confident in, yet can you ever be 100% confident in something you never hear confirmation on?
I have been at peace. Until now. My mama heart is racing. My mama tummy is in knots and my mama brain is so full it is hard to remind myself that where my focus needs to lie. It seems the only things I am finding comfort in is Starbucks and Target. I am not kidding.
But thankfully this morning I found my verse. And I read my verse and I am reminded that I don’t have to rely on myself (nor Target or Starbucks) for the strength to get through this. I am coveted by a good God who loves Lily even more than we do. Hard to imagine but I know this is true. And I know he wants to see her in less in pain than we do. Hard to imagine but I know this is true. And he will see her through this. He will see me through this. He will see us all through this. He has given me the skills I need to be here at this place now. He has supplied us with incredible support of family and friends that hold us high and pray with us and cover us and I am finding myself coming down off the edge a little bit. This is my breathing in a bag. Writing, reading, breathing in him.
Philippians 4: 6-9  6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Thank you to those praying, supporting us via and just asking how can we help. You are my heart just by being here. I may be absent, obnoxious, a space cake and all knowing all in the same moment and none of those things in the next, but you all love me thru it and thank you for continuing to do so.
I will keep you all posted on this. Probably mostly via facebook. But if you know me, you already knew that.


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Dear my Andi (stuck in the middle) Jane,

Hey there my girl! I’m writing this the day after you turned 10 (10?! When did that happen?) Some things really made me think a lot about you and they made me think about me as a mama and I felt like these feelings should be put on paper before they are just a vapor of thoughts that were here and then gone. Did you know you are quite amazing? Wonderful in fact!  I probably don’t tell you that nearly enough. But you are a one of a kind person who changed my life totally and completely.

On your birthday we sat and watched old movies. We laughed at what a cute silly baby you were. But I watched you watch the videos and watched you watch as we (your parents) would scan the camera from you to Lily and we’d say how beautiful Lily was and what a good girl she was and what a wonderful girl she was, then we would scan back to you and say things like what a silly girl you were, crazy girl, wild girl, even bad girl. And I don’t know what you were experiencing while watching, but I cringed. I cringed for you because you were doing all those things I had hoped for Lily to do and you were so advanced, so smart, so funny and I felt bad Lily couldn’t do those things and I could see that I parented you both so differently. I saw it with my own eyes. You grew up in a shadow you never could get out from under. I knew it, but I didn’t see it like I did on Tuesday as we watched those videos. I guess my brain said Andi is tough, Andi is independent and she didn’t need me to coddle her like I felt Lily needed. Still needs. And I try not to live with regrets but I do wish I had done things differently for you at times. I wanted so badly to go back in time to the place of that video and pick you up, snuggle you and whisper to you that you are so good, so special to us, so smart, so beautiful, and so sweet. I loved on you as a baby, I nursed you until you were 2 (sorry, I know so embarrassing) so I am not saying you were neglected, you were loved, you were cuddled, and I don’t think I can put into words what I saw on the screen as I watched those movies, I just know it was different. I was a different mom to you both and I know that it would be impossible to not do that, I just wish I gave you more. And back then there wasn’t much more of me to give, but I should have found it and gave it to you.

Oh my Andi. The thing about you though is you never showed any resentment towards Lily. You always have and always do for her. Love on her, care for her. You are the best sister Lily could ever have and while I know that, I had to watch those videos to really KNOW it. It isn’t easy being you. And then we added a little brother to the mix and honey I understand it isn’t fair for you a lot of the time.

When you asked if it could just be you and I on your birthday, no Lily, no Oliver, just you and I, I know you felt bad saying that, you told me so, but I am glad you were able to say it. If you want your special day spent shopping with your mama you can have that. And what a fun day that was! That’s allowed every once and awhile.

You were not given an easy place in this world. You have had to grow up faster than most kids your age. You see your parents put your sister’s needs before yours and you somehow “get it”.  It doesn’t even seem fair for you to have to get it, but you do.

There may be days that just seem hard, that you just want to lie around and not talk to us and that’s OK. Every once in a while, that is OK, but thank you for not staying in those moods. Thank you for your smiles, your dances, your songs, and your awesome friends you chose. Andi Jane, you are a good person. I am not just saying that as your mom, you are a person I am happy to know and love to be around. Sometimes I push you to do things better and bug you to try harder but I hope you know it is because you are meant for awesome things. I don’t want you ever shorting yourself on all you can be.

I think we do better now, but there were many years I admit were not my best and you witnessed those years and you grew up as your parents grew up. We are all growing together. And I pray we are growing better and stronger and I am sorry for things and I am grateful for things and I am a better mother and better person because of you three kids who give me life.

God placed you in our lives when he did and made you exactly who you were meant to be. He knitted you in my womb… isn’t that awesome?! He knows every hair on your head. I used to say this verse over and over for Lily and I believe it 100% for her BUT I believe it 100% for you too. And even that little brother of yours 😉 You are exactly who God meant for you to be and you are exactly the person to have your place in this family and in this world.

We cherish you and celebrate you! As much as it saddens me for you to grow up, it also excites me seeing who you are becoming and I know as challenging as those first 10 years were at times, I know the next 10 will have many more and different challenges, I pray you always know God is walking side by side with you. Look to him in all your life choices he will never lead you astray. 

Happy 10th Birthday Andi Jane! Continue to shine his light! Thank you for staying true to yourself and always continue to do just that!