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!
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 ❤️
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!
So what are the benefits of all these yummy foods?
Most of you who have been following on here have noticed a change. It isn’t just about my health, in fact most of it isn’t even talking about my health struggles. I’d love to keep you updated and let you know what’s really going on, please watch this video I made 🙂
So since I have been working with brands that’s why you’ll see so many pictures on here. I’ve been reaching out to many, and have been contacted by lots. Hoping to make a small income off of working with them. Pass the word around if you feel up to it!
This cozy sweater is from Closet Revival! Loved going to the beach and enjoying it’s warmth 🙂
Get 20% off with code: shophannah Go check out Closet Revival!
The link to my fundraising page is here ♥♥
And please share!
Lavender, braids, bees, and flowy Free People ♥
I remember going on this shoot with Dawn, it was the first time we’d met, but we clicked and I adore her. She was so full of joy and made me feel so comfortable and lovely. We were in a little lavender field full of 100s of bumble bees. It was such a pleasant little time and I’m so glad these moments happen.
If you already don’t know Free People is in my top 3 favorite clothing lines. So much bohemian goodness in everything!
What is your favorite Boho brand? ♥
P.S. Go find Dawn on Instagram!