Hurt and Sorrow

As I woke up this morning it was on my heart, that yes, I do need to be here for others going through suffering, going through hard times of life, going through hardness. Since my surgery happened almost 11 months ago, and I feel in no where near my old self, and not all recovered yet. I have felt so afraid by so many things, so afraid of people. I have been treated in a lot of really sad and messed up ways. Pre surgery I was able to handle being uncared for as a sick person, I could handle being gossiped about, I could handle being uncared for. I could even handle constantly compare themselves to me when they as how I’m doing.

Since this last major brain surgery, I am unable to handle those things. It was a severe traumatic experience. Everything that I just wrote about people have still been treating me in this way, Even when I could barely walk, could barely talk, was blind in both eyes (now just a quarter of both eyes), had a brain swollen for so many months, and I couldn’t do anything right. Yet, I was treated in those same ways. It’s mind blowing for me. People would look to themselves about what they wanted from me, when I physically and mentally couldn’t do anything. Could you imagine the pain and fear that caused me?

When people have opened up from me over the years about their health, from ALL over the world (crazy). I don’t just bring up my pain, I truly care for them and can only imagine what it’s like for them to have to go through that situation. I know what it’s like for them to tell me they feel alone…which is the majority of people I know or random people from social media opening up to me. People that know them aren’t even there for them. They feel so uncared for and unloved. They feel so judged.

To say that I haven’t judged anyone would be highly wrong. I know I have over the years. I know how a lot of it has had to do with me being a sick person and seeing things differently, so quick of me to judge, quick of me to want people to be “right”. Still growing in that, and I think we all will for the rest of our lives.

The extreme judgement after this crazy experience has been so hard on me. So quick to judge that I’m already healed, quick to judge that Rous and I are already thinking of having kids, quick to judge that I’m a b word with relationships, when people don’t even know the relationships. It’s been so hurtful to me and so heavy. So ready to stop this blog, ready to stop my work on Instagram. Ready to stop everything and hide so I’m not judged in the way I’m seen.

Talked to my Mom last night because I was about to have moment of reaching my threshold that really makes me a different person. She had said that even if I wasn’t as open as I am, to be there to those who suffer and to be there for those who want to learn. I would still be judged. Even if I didn’t own a phone and computer I would still be judged. The teaching we listened to today had me crying the whole time. The Lord has given us ALL a purpose and He has specific things for us. Since feeling so judged and hurt I’ve wanted to throw away every social media. But I know, I know that I have a clear purpose for these 16 years of suffering. I’ve learned SO much of how to be there for those suffering and I want so deeply for others to be there for those going through crazy hard times. I can’t just give it all up because I feel hurt and uncared for and judged. No, I just have to turn my cheek and pray to God. Give each post to the glory of God, and hopes that other humans understand how not to be there to others in the midst of suffering.

One of the things that I wish I would’ve felt encouraged by was the business I have on Instagram. I’m able to work with so many brands, meet so many people, and be able to work with areas I’m good at. Photography, editing and social media. I have felt like people thing I’m just a girl so into myself. Which I get where you could go with that. But no, I make money. While I”m at home laying flat literally, the majority of all my days. If as a christian you think I shouldn’t be posting photos of myself to make money while working at home, what do you think? Do you understand how that could hurt coming to someone who’s ill? I have a passion for editing and creating content for business, it’s SO healthy for me to be able to work in a way that I”m good at and love. If you think I’m super into myself and want to feel pretty…ha, you don’t know me. I’ve talked very specifically to the people I respect about this subject. I’ve met and reached to so many people, a lot who aren’t even saved. Who see me on social media as somebody different, but they relate because they have a job with companies like I do. Hopefully this will be my last time even talking about this. If you think I’m all healed and better because I post photos of myself, nope. I do it when able for brands to pay me, and then work on editing when I’m unable to go walk around.

I know many others who “look” normal, and are talked like they are fine and healthy because they look fine. No, we’re not. Just because we look fine, in no way means we feel good and are healthy people. I feel for every single one who’s talked to me about this or who’s reading this and gets it. If you saw me at home when I feel so sick, maybe you would stop assuming and judging. For all the sick people I speak this.

For the extreme few people who I have felt so cared for and loved during this traumatic affection of my life, wow I thank you more than could ever be expressed. To my neurologist who has to email me back constantly saying, I’m STILL recovering from this brain surgery, I thank you. Making me feel like one day I’ll be better, one day it all won’t be this hard. But, that’s up to the Lord. Whether I’m sick on this earth, God’s the one with a purpose or whether I’m healed and feel what life is really like not sick one day, then I would so highly praise God and give it all to Him.  ♥

 

 

 

 

I love taking photos of the ocean. IMG_4845.jpg

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What not to say to a sick person: Part 1

Hello my dear friends, or just random people off the internet, that I’ve met SO many from. This is a huge topic that has been very heavy on me. I’ve talked to SO many others suffering who have to deal with things and feel so alone in this world from what has been effected by them. I want to be there for those suffering so badly. As my recovery still goes I know that one day I’ll be able to be there for others suffering again someday. For now I can just encourage you to not do these things. Which, sadly, the majority of humans do this when they couldn’t even imagine what someone is going through.

Much love. ♥

 

Being Real Video!!

img_5445New Youtube Video! Please Watch!

After having this video for over a week now, I’m finally going to share! The story of my life has been hard, sad, confusing, questioning, sorrowful, trusting, hopeful, passionate and desperate. I know there is a reason for EVERYTHING in our lives, and I’m so hopeful to be there. Opening up on my first video (link in bio) about my life journey, and already working on the second now! I would LOVE to get to know you, love to answer your questions, love to be there for those suffering! Those who can relate to what to say I SO want to hear it! So much love ❤️❤️

Happy Father’s Day

I’ve been meaning to write one like this for/about my Dad.

I don’t really know how to put into words how truly thankful and blessed I am by this man. He’s my strongest rock. Safest help. My greatest encourage that, “it’s ok”. The person I’ll open up to about things that I do not say. He listens, he cares, he helps me.

There are so many ways for me to talk about him, and I don’t think I can even find the words to.

Going back over the years, there’s been a lot. He’s done so much. I’ve probably caused a couple wrinkles (not that you notice any!). He’s never complained for made me feel worthless. I could start writing about before the age of 12 when I became sick, but I guess this blog is mostly open about my life going through all this.

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I remember when I started my period (shhhhh so embarrassing). I was 12 at elementary school, and it all started. None of us knew my platelets are low or we would’ve contacted a dr with the way it was all happening. Not normal to say the least. But I was at school, and called my Dad telling him I needed him to pick me up as soon as possible. He automatically says, “Did you start your period?”. How did he even know haha? I said yes, and he instantly said he was on his way to pick me up. Making me feel supported and safe. I’ll never forget this moment, mostly because it was embarrassing, but all because of how sweet he was to me. He brought over 15 pairs of pants for me. Which is so beyond funny. Such a man. And I appreciate it so much! He knew I needed something!

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He’s rushed me to the hospital all the many times these years. Bloody mouth, bloody nose, period, fevers, infections, just worried. He is eager and so willing (and I know he wants me there pretty bad too :)) to rush me. Day or night. I remember MANY nights of me waking him up and just needing physical help or needing ER times. I’m so thankful for all his work.

There have been so many times where I’ll start feeling “weird” over these years. I have had way too many “weird” feelings followed by seizures or other random health things. He calms me down every single time. Yes something may be going on, but I do not need to be as freaked out or anxiety worse than mine is. So calming and strong for me to keep going, keep fighting, keep believing. I’m so thankful for his care.

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I remember in high school my Dad and I were down by their pond (no clue what we’re doing down there), but I had had a giant bruise bleeding in my wrist. No, not like all these big bruises people like to show from getting hit. All mine are from spontaneous hemorrhaging from my ITP. Just thinking back to my young self I feel sad. I remember talking to my Dad about it, and he truly calmed me down. He wasn’t going to let me bleed to death. He wasn’t going to let me be scared for my wrist bleeding so heavily inside (I went and got one of my weekly infusions). I got to be able to sleep last night, not scared for my life. I’m so thankful how much he has and will protect me.

There have been nurses, Drs, CNAs, phlebotomists..basically lots like that in this whole healthcare I’ve needed over the years. The majority are AMAZING. But there is quit a few who have been very rude, mean and hurtful to a young girl. high schooler and sick woman needing them. EVERY single time my Dad has been there with me during moments with people like that, he will stand up for me. He will speak truth to these people. He will not act like it’s all ok to treat his daughter like that or let me go through it. This right there makes me breath a deep breath full of thankfulness and honor for him! P.S. If you’re one of my dear friends in hospitals and Drs, you KNOW how much I care and love you. I try and tell you every single time!

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I can’t remember the majority of what happened to me over these past 7 months. Just visions or “shots” of an activity from my intense recovery (that I’m still going through). I remember moments from my Dad being the most helpful person I could ever express. I could barely see. I would just grab his arm and he would help me, always telling me what’s about to come as we walk. I remember about 30 seconds in Arizona of just not understanding how to wear clothes or what to put on my body. I really can’t even explain how little I was able to do things. This is when I was at the start of my inability to talk right, and he came and helped me understand the clothes to put on that day, how to put them on, if I’ll be ok wearing them. He sat with me in Arizona and “watched” movies with me all day everyday. I had no clue what was happening in movies because I couldn’t see right, understand that many words, or words even being spoken. He just sat there to be with me. Yep, another thing that makes me cry.

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Noclue the dates or times of any of these memories, but they’re shot into my head even when the majority is gone. Very crazy to me. Months after Arizona we were watching a movie, no clue what. And I told my Dad I needed to talk with him. I was talking to him about everything I was possibly going through will all this. It’s when the side of my left was still swollen and I had zero feel of emotions. It was terrifying. I felt no emotion you could even think of. After this movie I had felt a glimpse of love. And I was telling my Dad how hard it is because I barely feel anything. I told him I know that I completely love him, but I feel none of it. You have to understand, it’s not an emotion I had to not feel these, it’s my brain being very swollen and having to rewire all of my nerves on that side. Very intense. He just helped me know that I will feel again, even though I couldn’t imagine it then. I knew it would happen. He was there for me, and cared through every thing that my brain was dealing with.

I’m so beyond thankful to have him as my father. He really is the best man, and if you know me, you know I don’t feel the need to just say things 🙂 I love you, Dad. ♥

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My heart breaks for the beautiful friends in my young life who have lost their Dad. I’m not going to write a long thing, for it is not our job to fill it with words. Someone who has not gone through this (me). I don’t ever want to say words of “encouragement” when that’s not needed or hurtful. My heart has felt very loving to my friends, very caring, and very sorrowful. It’s not just one day a year for those who’ve lost. It’s daily. Care for your friends, never make it all better. Much love to you all ♥

Mother’s Day ❤️

Today is sweet Mother’s Day. I’m so thankful for my mom who’s been so truly good to me for 27 years now. I’m so glad for the other dear moms I have in my life who have shown me so much love and taught me so much. It was a year and two days ago when I lost my sweet baby dancing inside me. I thought my life was going to be so different. I lost the child just a day before Mother’s Day and the pain hurt so bad. I’m confused why that sweet baby isn’t here. I know there must be a true purpose for it. This year has been the hardest one of my 15 years of sickness. Losing the baby inside me and within a year having such intense brain surgery. The Lord has a purpose. My eyes cried as I saw all the Mother’s I saw today. So happy for them and love them so dearly. Just not understanding why I can’t be there. The Lord has a purpose. Today as I was in church I cried for the other moms who feel this. I’m there for you. I never thought I’d understand what going through this is like. I thought I’ll only “get” the hardness of sickness, but now I’m fully understanding how this feels to those Moms who aren’t holding their sweet babies. I love you sweet lady’s. The Lord has a purpose ❤️

My Momma and I ❤️

5 Month Check Up

There is no way I could put into words everything I’ve been through over these months. This surgery was nothing like my Drs thought was going to happen. I still wake up everyday now with all of this rushing through my mind, thinking “did this really just happen?”.

Every single brain surgery is different for people. Not all the same. When my amazing surgeon ended up taking out a lot more than expected, it made this recovery (that’s still happening no matter how much “better” I look) way harder than they thought.

I of course was going to start this by saying “I don’t remember everything I wrote in my last blog”. But I of course know what a lot of you will do bringing up your memory. I guess what I’ll bring up is to help others going through times of suffering. When you ask your friend, family member, church friend, high school person or just a girl you follow on a blog, listen, do not in an instant bring up what you went through, are going through, your grandma went through, you have a friend who could understand, or you know someone on a blog. Listen. Take it in. Do not start quoting bible verses or saying it’s all going to be “better”. Listen. Care for this human.

The things I’ve been going through for 15 years now has taught me a lot. I want to be there for others. Not in ways that cause hurt or stress to those suffering, but be there with care and love. Even as I type this I have 4 people in my mind who had wrote on my last blog that it sucks what I’ve been through and they love me. I look at that and just go “ugh, thank you!”.

Even after this last surgery that had enabled my brain not to work right. Could not talk right (still dealing with that but WAY better), could not see right at all (steal dealing with that and just saw a terrible eye dr about it, ugh pray), has ZERO emotions (it’s in the spot on my brain where all emotions come from), when people would talk they’d have to go slow or reexplain because I couldn’t understand for months, the left side of my jaw was cut before surgery so he would have room and I’m still feeling that heal up everyday when sowed back together. Rous rubbed my head yesterday and touched over on my left side and bam, nice pain feel over there. It still hurts all on my big area. Because I’m still unable to handle things said to me because it was a big traumatic experience my drs explained to me, I’m unable to handle even people saying things to me. I’ve been handling things said to me about health for all these years now so just understand, no I can’t handle this and it’s been 15 years now. Let it be.

I’ve had people bring up their animals having grand mals ( if you ever watch a human or me have them I don’t think you’d say that, people having cancer, people dying, people having brain surgery (every single one is different), people telling me I’m all healed ( mmmmm wait go to a drs app with me then), and people saying “at least I look good”. Oh wow even bringing up that last one makes me breath heavy.

When others are going through hard things, listen and truly care. Otherwise don’t say anything.

I needed to talk to someone so bad months ago. Because I didn’t understand how to keep doing this, how to keep going through my recovery. I told my Dad (who I’m obsessed with) that I need to talk to someone. Someone who has been dealing with sickness longer than me. If it’s been shorter than 15 years I’m not going to talk. If there younger than 40 I’m not going to talk as well. That’s a whole other topic :). I got to talk to sweet Peter John. He gets me. He fully understands what I just went through and have for years. To have meningitis, brain surgery and other intense diseases for 20 years makes me be able to breath and feel comfortable what he would say to me. He gets it. Beyond grateful for that encourager and example of going through sicknesses daily.

What I’m saying is those are the people I would want to talk about their sickness.

I hope this truly makes sense for others. I hope those truly suffering read this because I know how strongly their weak heart (mine) need it.

In Arizona now receiving my first check ups in 5 months. Heavy on me. Much needed though. All testing yesterday was very heavy and hard for me. Makes me want to cry now. Today I get to see my amazing neurologist who I adore and am happy for that. She will help me, calm me and explain what I just went through and how to keep dealing or future things like this. All appointments till Friday. At least I get SO much sun!

Thank you for the 100s of prayers that I know have been going. Thank you for the support I have felt in many different ways.

Again I’ll say to those hurting, I feel you. I get it. Just one day at a time. ❤️

That part of my eye has been blacked out for far too long. Hoping for healing of that! I’m literally completely blacked out there. If you hold your hand there or stand there it’s gone.

Suffering

My fingers shake and tears stream down my eyes as I begin to type. It’ll be 3 months and 14 days since my brain surgery. I check it everyday. I don’t even know if I have the words to express what happened or what is still going on.

It was hard on my before surgery. Knowing I was going to go through and have my left skull open, instead of my last laser one (crazy painful/hard). I knew it would be hard. Drs knew it would be the most painful one, but none of us thought of what was about to happen.

I only remember “flashes” from the last 3 months. A main part of that is yes, my short term memory. My hippocampus (which controls short term memory). Waking up in the hospital and in pain you will not understand (almost the majority reading, I feel no need being dramatic). They had shaved my hair, cut open my skull, cut my jaw cord, so they could open my mouth on that side much wider. They took out a good chunk of brain.

I remember trying to say words of pain meds. I couldn’t talk right. When I’d open my eyes there was people walking all on the right, animals jumping, lights squealing by in every different color. I’d look at people and have no clue what that person looked like. I could understand the voices I know, but I couldn’t see them. When I looked at people, half of their face was gone. My brain/eyes lost the ability to see the right side on everything. It filled in the missing vision with all the actions floating in that “black out” side for me.

People would talk, and for months I’d say, “what? I don’t get it”. The ability for my brain to hear multiple words in a row was too hard on me to understand. I need few, and very slow. I “stuttered” often, but it was more so me trying to say a word that should come out of my mouth, but it wouldn’t. My mind couldn’t find them. I had to rewire (still working on it) to find words to be able to say.

I had lost all form of emotions. My brain, my body, my heart couldn’t feel them. I felt like a robot who didn’t know how to take care of what I was doing. I felt nothing. What was touched in my brain is of course the side of emotions. It was incredibly hard to understand how to deal with things being said, or even deal with the fact that I wasn’t all better each week. It was a couple months before I felt an actual “love” feeling. Unless you’ve truly been through this there is no way to describe the ability not to even know what it is. It was impacting me so severely. I didn’t know how to do life. Over and over again, everyday, doing the same things. Not talking right, unable to see, can’t read, have lost the majority of names I’ve known even my whole life (I’m learning names of people back slowly), couldn’t remember what happened after each day (I’ve learned to write down days and events), thought my brain wasn’t done right, I couldn’t talk long, it would completely tire my whole body to the ground.

As I type these I still cry. It’s all extremely hard to deal with, but I’m now working on it all slowly. It was very hard the many people who would send words to me, thinking they understand what will help, bible verses, youtube videos, advice on life, relating things they’ve been through. It was beyond hard on me to take in. I full on know people just do not get this at all. Very few people. There is only one man I talked to about all of these, and actually got it because he’s done the SAME thing! I will write about what people shouldn’t do for those truly suffering. I know they wanted to help. It wrecked me though. I’ve learned from years of intense suffering what not to do to those hurting.

I take a big deep breath as I write this. I need to take one day at a time. My ability to handle things i not like normal. They said it was an incredibly traumatic event that happens. It’s good for me to take everything slow, not push myself, not let people come at me, not think I’m going to be all healed in a week. My amazing neurologist said after this surgery it will be up to a year recovery. So I need to just understand that and go slow in life. I’m trying, it’s just all hard on me. Hard to handle.

There is so much for for me to say of what has happened and what is still going on. I need healing in even the strong surgery that just happened. Not just the pain. When people see me don’t think I’m all “normal Hannah” because I’ve now started wearing makeup, putting on normal clothes and seeing me laugh. Each day is different.

My heart goes to those with long term sicknesses. I cry often over it. It’s not like normal things everyone wants to compare their lives with.

I will tell you this. I couldn’t feel anything in me. I couldn’t feel Jesus with me, I couldn’t feel anything. I couldn’t pray. I couldn’t even think words in my mind, and could barely speak out loud. That was beyond hard in not able to go after my Savior. I know more than anything Jesus was with me. I know more than anything He truly cared and was saddened by what I just went through. Once I was able to start “feeling” Christ, praying word at a time to Him tears of “feeling” God. I don’t know how to explain it or truly have you understand it unless you’ve ever had a brain surgery this intense. I told my speech therapist at one time that Jesus has been with me more than anyone my whole life, especially coming from the 12 year old girl who got sick. If I had not none Jesus Christ, and felt is actual presence with me during all these sorrowful years of sickness and intense hospital seasons. I don’t know where I’d be.

Jesus has me here now. There is/must be a reason. Faith as small as a mustard seed will move mountains. I’m hoping for strong faith in Jesus.

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My whole left side, especially my head was swollen for over a month. I have no memory of this picture or it being light in that room at all. Thank goodness for the care in Phoenix♥

Letting you know, I can’t use all words right still. I sound “weird” sometimes. My brain is still working to sound right and understand what comes out of my mouth ❤️

Hope in the Midst of Suffering 

As we are flying above the clouds right now, on our way to the Mayo Clinic. My mind is racing with so many thoughts. I feel like I’ve never felt this confused in my life. I don’t have a “normal” life. I have one full of so many bizarre, scary moments. In tears thinking of what just happened.
Two days ago I had a massive Grand Mal. I had driven up to my parents alone and it happened there. It feels like a dream I had. I just remember waking up on a different couch with 3 fireman over me asking me who the president was. My parents said it took 30 minutes after my seizure for me to actually come to and communicate. It took hours upon hours for my body to recover. I kept asking questions over again because none of it seemed real and I couldn’t remember anything that happened.
The night before I had gone to hear Nick Vujicic speak with Rousseaux and my dear friend Aaron. Hearing him speak, I feel like woke up my crying soul. I never thought I’d be sick for this long, just never. I thought my life was “normal” once I got pregnant and my seizures went away, ignoring the fact I still had blood disease and heart disease. Nick made me feel like I actually have a purpose in life. That yes, I may be sick, I may get more sick, but I. HAVE. A. PURPOSE.
He’s a man with no arms or legs and is changing and impacting the lives of millions. His humor made me appreciate him even more! To be able to joke about the hardest parts in your life while encouraging other people with hardships was beyond inspiring to me. He’s able to use his disabilities to to touch hearts and minds in ways no one ever could.
I cried the whole time he was speaking. Thank you Nick, for being such a light in this world. You are an amazing example to me!
It was hours after my grand mal and the ambulance had taken me to the ER that I’m laying in bed, barely able to speak. I couldn’t even walk because of everything my body went through during the seizure. I had to have two people for the rest of the night lift me up on to the toilet. I had so many people coming in and staring, so many people trying to talk to me and me just not able to because of what my brain had physically just gone through. And as I laid in the hospital bed in between sobbing and in between asking my parents what had happened over and over again, I thought of Nick.
I’m crying even thinking about it. Yes I was in pain. Yes I was so confused (still am so confused). Yes I was physically hurting. But the words “my physical ailment truly does have a purpose”, was in the back of my head. What I’m going through now, could bring healing and light to others souls. I could be there for others who no one would be able to understand. Maybe someday I’ll get up on stage and talk about all these bizarre things I’m going through, along with my twisted humor, just to be able to make someone feel the way he made me feel.
It’s been 3 years since my last grand mal. They don’t know what caused this one. No change in any medicine, no change anywhere. Why did I have one this big after my major surgery? So many questions in my life I’ll probably never know, but I have to trust that the Good Lord has a plan. I have to or there’s no point in this life.
Tomorrow I begin all of my testing for my brain. I’ll be strapped to a hospital bed with so many wires connected to my head. Please pray for my patience, answers, wisdom and understanding for Drs., patience and love for Rous and I (we’ll be in a room for over 5 days 😂), and for my fear of the future to be gone. Yes, a much bigger brain surgery is in the works. I’m scared of what could happen after that one, scared it won’t heal my seizures, scared I’ll have worse memory loss, afraid I’ll become more blind, worse at the ability to think of words when I’m verbally communicating and so much more. But I can’t let that consume my being. Everything is planned and ordained by the Lord. There is a purpose for it all.
I feel my small heavy heart starting to have a little bit of hope.
Thank you to all the people that were there for me for this big bizarre seizure. My sweet ambulance girl (who said she followed me on Instagram?! Say hi!!!!), the cutest sweetest nurse in ER, oh my goodness she was such and amazing human! Dr Suarez, for truly being there, truly caring, calling Rous to try and help find him (he was camping out in the middle of nowhere :/) and he prayed over me, what an amazing man. My parents said my brother prayed over me at home after my seizure and was so loving to me which means the world to me! My sweet Father in law Réal and Mom Cheri for driving all over the mountains to find Rous and showing me so much love and care, my dear sweet Mikaela who lives right next door to me, having a friend who truly cares and gets me means the absolute world to me. Of course my sweet Rous for being found and coming to the hospital late into the night. And most of all my Mom and Dad. They were there with me through this all. So beyond loving and caring. I couldn’t talk or really move but they helped with everything. Always comforting me with their loving touches, figuring everything out with Drs and nurses. Thank you for being there, I don’t know what I’d do without you two!
And thank you SO much to those who have given to help me along with journey! I’m hoping to get all my cards written out, but if not just know I love and appreciate you so much. You’re helping me be able to live a better life ❤️

Life and Health ❤️

As I sit down to write this I feel like I have no words. It’s been months of actual opening up about my life to people. I’ve had so many ask how I’m doing, how’s my health, how’s everything. From the outside I look “great”. On the inside it’s not so good.

I had a year of life like one I can’t remember. Jobs, life, really feeling alive and being able to do things.

 

I never really had a desire to get pregnant and have a child. Most of my days were full of severe fatigue and seizures. And with the high risk I am from my blood disease, it was never a great desire. Soon after my brain surgery last year, when I recovered and was living a life with no more seizures, I started wanting a little family. We decided we’d try after our amazing trip to Australia.

Within a few months of being home we were already starting a little family. I was due late December. We were so beyond excited! I finally felt like a “normal” woman with a “normal” life. I thought, “I’m not going to be just this sick girl anymore.”. We began planning our little adventure of a new life together!

Having a baby growing inside me, seeing the ultra sound, seeing the heartbeat is something I never thought I’d feel. There was REAL life growing inside me, and I was carrying the child! I’m sitting in a coffee shop as I write this, and am just crying. What an amazing experience that was.

It truly made me look at my life in a whole new way. Who was I going to be as a mother?! I began reading and really growing in my walk with the Lord. I wanted to be the greatest example this baby had of love.

I began reading a book and it changed my whole thought process on life. I won’t go into details because that would be so crazy long. It opened my eyes to how I viewed myself and others. I was so quick to judge and be harsh to others. So quick to see the negative in others. So desperate for others to want to be “better” people. And that really made me such a negative person. Ever since I was 12 I’ve been sick. I’ve seen the world differently than kids my age. While my friends were worried about grades, boys, and how they looked I was worried about bleeding too much, my treatments in the hospital, what my blood count would be. I began to judge everyone and become such a hard hearted person.

I thought if I can’t get my body to be healthy, then I will try and be the “best” person I can be. It wasn’t a mindset based off of love or kindness at all. I felt so unloved by so many people because I felt like no one was there for me, but no one ever really understood because they’ve never been through it. I felt so unloved by God because he allowed me to get sick and more sick over the years.  I viewed my self as this worthless and pathetic person, and I tried to be a better person so I would feel worth something.

It is such a heartbreaking mindset that I had and I’m so glad my eyes were opened to it. I do know that I’m loved by others, and I know Jesus is so dearly in love with me. I feel so sad it took me so long to realize this. I feel so heartbroken how judgmental and harsh I’ve been towards others over the years, just hoping they’d see their little problems as not so big of things.

The Lord used this time of being pregnant to open my eyes to it all.

During my pregnancy I felt a seizure. I hadn’t had one in over a year. I was confused and baffled that I had one. I used to have over 20 a day, and then just none for over a year. Suddenly they were back, and my life was about to take another turn.

I had a good healthy year. It was a glimpse into a lifestyle that I appreciated SO much! I had a year of zero seizures and thinking I’m not this sick girl anymore. I’m about to be a “healthy” mom!

When we went in for a check up and there was no heart beat, I felt so alone and so confused. Why? Why is this being allowed? Am I not worth it? Why do other girls my age get children and I don’t? Why am I the sick girl? Why are my seizures back?

These questions still flash through my mind and I just have to give them to the Lord, otherwise they’ll eat at my mind.

I thought my identity was a sick girl. My whole identity. My whole life. That’s not it though. I’m a dearly loved woman. Loved by God, loved by family, loved by my husband. If you’re reading this and you’re identity is in your biggest struggle, I greatly hope you’ll be able to break free! I feel like a new person now!

I’m so thankful the Lord allowed me to feel like that with this next new journey starting up… a second brain surgery is in the works. Since my seizures are coming back strong, and I’m back on the highest dose of medicine, my drs are hopeful that open brain surgery will be able to remove every part of the scar that is causing seizures. Before they did laparoscopic (laser surgery) because of the danger I have with internal bleeding. My platelets having for the most part been staying around 50,000 though so it would be more safe for them to open up my skull and remove the scar.

The last surgery left me with blindness on the right side of both eyes, short term memory loss, the inability to think of words (my brain has rewired a tad bit to get better at it), and my balance is completely off. When my Dr and I started talking about a more intense surgery to remove the little bit of scarring left,  I was incredibly concerned that I would get more permanent damage or worse than before! They never told me I was even in danger of those. She said since my skull will be open and the surgeon will be able to see the exact spot I’m not in danger of things like this again. Oh how I pray that is true!

They told me last surgery that it’d be a week of recovery… I was so so sick for months. My brain was so swollen, and the parts that were swollen were the ones that trigger depression, and fear. But it was something that couldn’t be controlled because those parts of my brain were swollen.

I’ve been struggling with such fear and anxiety over this next surgery. How I hope it’s not has bad…even though it’s way more intense. Trying to trust the Lord. I ask for prayer if you’re reading this. My life has had so many turns that I just don’t understand, but there is a purpose for it all. I have to daily remind myself that.

Next month Rousseaux and I head to the Mayo Clinic and begin testing for the next surgery. I will be strapped to a hospital bed for 4 days hooked to all these wires on my brain. Making sure they find the exact pinpoint of these seizures. Pray they find it without struggle please! Pray for my sanity. It’s so hard being strapped to a bed. Crying thinking of it now.

Last surgery we had spent a little over $20,000 on hospital bills (not all care is covered by insurance :/ ), traveling, housing, food and care. We were SO incredibly blessed by the generosity of those we love and some we don’t even know donating to us.

My heart has felt very weak this round about opening up and asking for help, but we are in need. I feel partially guilty because last surgery changed my life for a year, and now they’re back. I feel scared people think it was a waste of their money, which I know is a lie. Oh how my mind is full of lies with this whole health thing. We kindly ask if it’s put on your heart this time around. We’re so beyond grateful for all the love, care and generosity we’ve been given over these years with my health and our family.

People always ask how they can pray for me with all this and I will gladly ask for prayer. Peace through it all, trust in the process, wisdom from my drs, the testing to give answers, provision for all the needs, healing for my seizures ♥♥♥

If you have any questions about it all please feel free to write to me!

 

Here is a link for donations if you feel led ♥

Donate Here

Mornin’ Smoothie

Hello dear friends,

I hope all is well in your homes and hearts, I’m happy to say it is over here! I had to share with you all my smoothie I make every morning. This past year has been such an eye opening one of how important it is to eat healthy, and I’m such a strong encourager to others to join in, especially those battling a sickness of any kind. It can truly change how you feel and think if you just feed your body real and true nutrients!

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So what are the benefits of all these yummy foods?

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