So many times I just feel done with writing. I have so much on my mind and heart over all this. I feel like I don’t even know how to express all I’ve been through and so much I’ve learned from it.
There’s such a need for those suffering to truly have people understand how to be there for them.
You will go through suffering in your life. Not worth comparing it to me or anyone else popping up in your mind. You will have it though. That is life.
Life is not a perfect place. A life of joy, amazing health, sinless, all relationships 100% great 24/7..
It’s just not.
It’s real. It’s in the Bible. It’s full of so much.
My mind, heart, body has been through so much, and this year has just hit my extreme feelings of aloneness because of how much people think I SHOULD NEVER BE SAD… I could be worse… you know worse…. you’ve been through pain too… I need to be happy… have I been praying at all?…
Even writing out reminds me of how the majority (because there are some in my life who understand suffering- or long term sickness) of people just don’t get it.
I’m currently on a plane flying back from Arkansas (heyyy y’all!), reading my Bible, desperate to continue growing closer to God, understanding the word and feeding my soul.
There are verses right there-
WEEP WHEN THOSE WEEP -Romans 12:15
Whoever sings songs to a heavy heart is like one who takes off a garment on a cold day. Proverbs 25:20
Ok.. reread those. Seriously, right this moment reread them. It’s only two small ones.
Are you taking it in? Are you thinking, “oh dear she should be happy?”
Having gone through the hardest part of my life (still going through it folks, just because I look “normal”), I have really drawn myself in from the so many I know.
Over and over again I’ll get bible verses sent to me, songs sent to me, “advice” of why I should be happy. How alone do you think I feel. There have been times where I’m laying in a hospital bed crying with so much happening with my body and relieving a text of “love” of why I should be thankful and “happy”.
Breaks my heart the memories in my mind still. I feel no anger towards people just sadness. I know the 100s that have sent me these kind of things will do it until they go threw sorrow, somehow their eyes are open… or they just don’t I’ve heard.
To having a miscarriage when I thought I was done with seizures, my heart disease and my platelets were good, but spoken to of why I should be happy… that I had a miscarriage is mind blowing. Happy that the baby wasn’t older before dying? Still asked constantly when I’m going to try again… starting a couple months after my last brain surgery people have been asking and haven’t stopped. STOP asking people when they’re getting pregnant. You have no clue what’s going on with them. A day after my miscarriage someone had asked me when I was going to get pregnant. Wow, how sad I still am by that. But it’s something we must learn. I had not learned this, read things like this until after my miscarriage and my inability to be pregnant because of my health. Heartbreaking. Yet I want people who haven’t been through this to learn it now or very soon.
When I was sitting in a coffee shop the other day a group of women are there. One of them starts telling a story about her husband sitting next to a guy having a grand mal… she starts cracking up and all the girls do. Over a human having a grand mal. I’m sitting there so so saddened and overwhelmed with aloneness. Imagine watching someone you know and love sitting there having a grand mal. You would be so sad. You would be so worried. Me waking up from all my grand mals and not understanding what happened and the messed up pain in my brain and body after is something you can’t imagine. To be quick to hear others laughing about so so much sickness, sickness that makes you feel sad. Makes you have such a heavy weight of sorrow… is hard.
It needs to be learned and understood by those who aren’t going through pain and sorrow right now. But don’t you want to be able to truly be there for those you know who are sad and full of so much? TRULY there for them. Not there thinking you can cure. But there to help them be alive.
I can’t imagine what kind of person I’d be if I have not been through this. I can’t. I would not be the same person I am. I would not know how to be there for people. I would probably compare things, I would probably expect them to just be happy already, I would expect them to think how cool of a person I am for doing “something”.
When you’re there to just be there and care… wow. The difference it makes.
I’ve had people I thought I trusted over the years ask how I’m going and if open up, I’d cry… and I wouldn’t hear a word back, I would hear a joke made, I would hear comparison made, I would hear a “solution” made. Slowly and slowly over so many years of this I’ve lost trust. I have such few people in my life that I know would care for me. Truly care if I’m bleeding internally, truly care if I’m in the er time after time, truly care when another thing happened with my health. Truly care even when I’m out of the hospital…
Are you thinking of anyone in your life who needs this? We need it. We long for it. It needs to be learned. All of Job is about it. It’s not made up. It’s not the nowadays thing of… happy, happy, happy!
Weep with those who weep.
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.
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. ♥
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 ❤️❤️
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.
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!
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.
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!
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.
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. ♥
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 ♥
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 ❤️
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.
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.
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 ❤️
I feel like everytime I start to write I have tears in my eyes. Such a strange season of life that I feel is so unreal, and my mind does not know how to grasp it.
I’m currently laying on the couch shaking from how weirdly sick I feel, which isn’t a strange thing in case your’e wondering. No clue if it’s from seizure activity or just my body being the weird self it is. Possibly just all the anxiety, fear and confusion I feel kicking in. I didn’t sleep much last night. I kept waking up all night with my mind racing about the upcoming surgery. It’s just so unreal that this is happening. I want to say how strong my faith is and how encouraged I am, how joyful I feel about it, and how I know it’s all for a good purpose. Sadly that’s not where my mind’s been going.
Before you feel the need to write to me “encouraging” me, just wait. I haven’t really been opening up about everything because I can’t keep hearing people try and fix, help, make me laugh, change my view on everything. Unless you’ve been through a journey of sickness like this just please don’t. I can’t tell you how much it wears me down. I know so much people mean good, but it is the hardest thing to just smile and go, “yep, thanks”.
I’ve vented with others who are very sick about this and we feel the same. Don’t compare your blood draw to this upcoming surgery. It just hurts us. Don’t say you get it because you were really sick for a month in the 4th grade, which of course I’m sad you were, but you’re better (praise the Lord!). This is a daily struggle for SO many people. It’s been almost 14 years of seriously hard health issues. I’m at the point of not being able to smile when someone makes a joke about severe bleeding, seizures, brain surgery, memory loss, me not being able to sit up long because I’ll pass out. It’s just not funny, and it’s not a light topic. It’s a very real and very hard battle I’m going through right now.
I know so much that people do not mean to cause any kind of hurt in me, that’s why I thought I’d open up about it. For me and other people you know who are sick. When people just give me a hug and say they’re so sorry for me, they love me, that means so so much to me. I feel genuinely loved. My dear friend Sloane recently dropped off a bag of delicious food and magazines to help me and I cried. That action meant so much more to me then a, “It could be so much worse.”. The cutest Jessica (who just had a baby!) brings me a meal, and she didn’t even know how I was feeling, made me cry. She just wanted to help. And it helps so much! I feel so loved and cared for! As I write this I know there’s other things people have done but my memory is so far gone right now.
Thank you so much to all my friends who have loved and cared for me! This next season of life is going to be a hard one. December 8th is my brain surgery. They’ll cut open 4 inches of my skull and go in to remove the last remaining part of my scar. I cry as I start typing this. My sweet Dr. said this recovery is going to be hard, this is going to be a lot longer than the last surgery. I can’t even imagine that being true. I was in so much pain, so out of it, severely depressed, couldn’t think right for MONTHS after the last one. Will this one really be harder? I pray it won’t.
Next month I was suppose to be having our baby around this time. Instead I’ll be having my skull cut open. How am I suppose to understand that? I guess that’s when having a God that I really believe in is tested strongly. There has to be a purpose for all these things in my life, there has to be. If not, what even is this life.
We’ve been so blessed with money for this trip and surgery, an amazing place to stay, my parents being able to come. I truly am so thankful for so much. If you’re reading this please pray for the heavy weight I feel. I’ve been blessed so much, but all that is in my mind since the date has been set is this intense surgery. I’ll be out with friends acting as though everything’s normal, I never want to bring up my issues, but dang, I’m about to go through a crazy life event that most people have no clue what it’ll even look/feel like.
Take every thought captive, I know I know. But, it is extremely hard. Everyday is different for me. I’m unable to drive so I’m stuck home most days alone, and wow it is tough. You’re unable to drive till 3 months after having a grand mal. I didn’t think it would be this hard, but it makes me feel even more trapped.
I think about all the hair that will be shaved off, the intense amount of pain I’ll feel, the loneliness I’m scared of feeling (like last surgery), the short term memory that will be damaged more…so on and so on. It’s just a lot. Wow, this is the most depressing one I’ve written yet!
Ha the funny thing is I’m not even depressed, I’m just overwhelmed!
Getting IVIG on the 4th to make sure I have platelets before surgery! 1st long treatment in over a year. I’m just happy I’ll get to see my sweet sweet nurses. Please pray for the medicine to work and that I’ll have an abundant of platelets before and after surgery so I’m not at risk of severe bleeding.
I do hope this all made sense and didn’t sound harsh. I just thought I’d really open up about how hard this has been in every area. So much love to all you who have been seriously supporting me! Thank you for the love I’ve felt by so many.
I may do one more post before surgery, but if not I’ll be back in quite a few months. Thankful to be seizure free, hopefully remembering who you are (half joke hee hee).
This Christmas I’ll be very very weak and out of it so Rousseaux and I are going to get a tree early and celebrate here at home. If you have any other fun ideas to make this special please let me know! I do feel partly guilty for making this a “sad” Christmas (and for way more things) so I wanted to do something special here at home with Rous!
Here is the page to donate ♥
I did also want to leave this song. I’ve been listening to this everyday. A dear friend over in Australia sent it to me awhile back and it has just been stuck in my heart. Thank you sweet Kieran! A super powerful song!