Round Two of Brain Surgery

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!

 

 

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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?

Read More

Real Talk

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!

 

Free People Love

 

Lavender, braids, bees, and flowy Free People ♥

 

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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!

Trials 

I’ve been thinking a lot about my little journey through life. It’s been actually crazy. I turned 25 this year and have been through so stinking much. All of it has made me change and grow so much. I’m not the same person I was 10 years ago, 5 years ago, even a year ago. (Just ask Rousseaux)
Struggles, trails, burdens, they really do change you. Hopefully they strengthen you. Hopefully they make your faith strong. Hopefully they open your eyes to all the vanity in this world. Even as a young girl I was changing into a woman with eyes open to this vain world we’re in.
I remember one day when I was getting one of my 8 hour infusions. These two people next to me who were also getting treatments. Asked me how I was smiling. Why was I smiling? We’re in a terrible place going through terrible things. The lady was in her 40s and the man was a bit older. They had so much bitterness about the journey that they were in. I got to tell them about my faith and hope in Christ. I got to tell them that this isn’t the end, this isn’t all our life is about. They were in shock at such a young girl saying that. Now I’m not telling you this out of pride I’m trying to encourage you to learn from the trials that we go through!
My mom sent me a little video of the names of the people who came to visit me 9 years ago (ok I’m already crying again) when I had meningitis and encephalitis. When I was dying. I didn’t remember any of the people on the list besides Rousseaux, Robby and Forrest. But I was SO blown away by all the people who came. So many people I would never expect. It made me feel so loved and cared for.
It’s crazy that 9 years ago I went through that terrible trial, which led me to this past trial of brain surgery. To remove the scar that was left from that time. To start a new life, really, from taking away the burden that that time left on my life.
I was sitting with my dear friend, Amy (her story will be here soon ❤️) the other day. She turned to me and said, “Hannah, isn’t it crazy that you just had brain surgery?”. Gosh it made me feel so good to have someone say that. Everyday I think about it. Everyday I’m blown away that I went through that already. And it’s like it never happened. But to me it did and it was so big. It was life changing. Plus how many 25 year olds, or most people can say that they’ve had that done? Probably not too many.. All the Drs tell me I’m “special”. Ha not a compliment those times.
I hated all of these times. All the physical pain, heartache, depression, anxiety, feeling completely depleted. But I can say now that I’m kinda glad to have gone through this journey. I’ve been able to connect and encourage so many others who’ve battled with their health, and I truly want to be used to be a light to so many with my story!
Am I all better? No. I still have my little blood disease. Still have my heart disease which kinda kicked back in hard and sadly has made me not be able to work at my favorite little store. But I know there is a plan for my life. I know there’s a flexible job out there for me. I know there’s a plan for my life. I hope you know there’s a plan for yours, to bring you peace and not evil. There is a future and a hope ❤️

In Sickness and in Health

 Four years ago today, Hannah and I walked down the isle, washed each others feet, exchanged vows and rings, and said the brave words, “I do”. After exchanging our personal vows, Bill White, the minister marrying us, included the traditional vows which we were to repeat to one another. You know, “For better or for worse, in riches and in rags, in sickness and in health, till death do us part.” Those were words which I had seriously considered before marrying my girl. As excited as I was to marry my best friend, I had also counted the cost of what marriage may look like.
 Hannah had been through nine years of ITP, meningitis in her brain, and a seizure complex which had no foreseeable end. It was important for me to count the cost so that when I stood with Hannah on our wedding day I would vow only what I was ready to hold true to until death.
 The words “in sickness and in health” are often thoughtlessly repeated by blissful and healthy lovers on their wedding day with no thought of the future. But for us, there was plenty in Hannah’s medical past that gave us concern for what possibly lied ahead, although we didn’t know it would include a debilitating heart condition, multiple years of deep depression, and brain surgery.
 And here we are today. What was expected to be a fun filled romantic dinner in Portland for our anniversary has ended up (ironically) in the Emergency Room in Eugene with a curtain separating us from a women who just had a heart attack, which doesn’t help since Hannah is here with a severe stabbing heart pain sensation.
 What are we to do? Complain? Grumble? Grow bitter that a health crisis interfered with our anniversary plans? Not today. Today I’m thankful. I’m thankful for a bride who has put up with me and my lack of understanding and has taught me how to love. Easy love is often shallow, but the trials, pain, and grief that we’ve gone through together have deepened our love and strengthened our faith in the Lord’s faithfulness. I get to celebrate the fact that we’ve walked through the valley of the shadow of death and did not give up. I praise God for the everlasting joy that He has set before us so that in the midst of sorrow we have hope.
 “We rejoice in hope of the glory of God. Not only that, but we rejoice also in our sufferings, knowing that suffering produces endurance…” (Romans 5:2-3). The goal of our sufferings and trials is to conform us into the image of the Son, to strengthen our faith in the Father, and to knit our hearts together in love by the Spirit. And so although I tend to sound triumphalist in these times, I just don’t want to waste a perfectly good trial.
 I washed my wife’s feet on our wedding day to symbolize my pledge to serve her and stay beside her, whatever life may bring. Marriage has not been an easy journey, but the joy and love which we find in our adventure is deeper and more precious than all the enjoyments the world offers; and today I celebrate our love.
Immensely grateful for my Georgia,
Rousseaux

Inspired by Darling

Hello my wonderful friends!

This new season of my life has been pretty crazy, and dare I say wonderful?! I’ve been so blessed by all the love and support I’ve had. I’ve been so truly blessed to have a life that’s waaaaay more normal than the one I was living. Seizure free, has abled me to start living the life I’ve always dreamed of.

I’m able to have my first job at my most favorite store, Terra Firma Home. Every time I’m there I’m so full of joy. I’ve never have been able to be around people, and meet so so many new people. The only time I was around new (ish) people, was church, and Doctors/hospital visits. So this has brought me so much joy to meet new people, and talk with them.

Rous, and I have been talking about all the plans for the future that we’re now able to do. It’s so crazy. We didn’t realize how held back we were, until I was free of this. The other night at 8 PM we spontaneously drove to the coast, went to bed in our Subaru in the back, woke up at 5 to watch the sunrise.. Of course it was too cloudy and foggy so we explored the ocean. Had such good quality time. We’ve never been able to do things like that because I was too sick. Did this make me extra tired? Yes, but my seizures didn’t double up because of the lack of sleep. Now we can’t wait to see what the future hold for us!

I’ve alway have had a desire to truly be a light to this world. I’ve learned so much from all of this, and want to inspire girls, and others who are suffering. Since having more energy and the ability to do more things, this desire has really increased. I’ve been reaching out to so many people to encourage and help, with just life, and I’m so grateful for it.

I want to share my story with so many, but have never really been able to grasp how. A little over a year ago this article I wrote at Darling Magazine, was chosen to be featured. It’s been so encouraging to me to remember that that happened. I love Darling, and the message they portray of natural, and healthy beauty. I hope to get more involved with them and other businesses like that. If you have any advice please contact me ♥

I have so many dreams for life, and I slowly feel like things are coming forth. I know so many of us have dreams and desires, and we just think that they will never happen so we don’t take a leap of faith. Well, I’m telling you, as a girl who suffered so badly from seizures. And was unable to do so much with my life. Is now taking my leap into new beginnings, you should too! I still have two diseases, but I really want to experience life, so I’m not letting those drag me down.

I hope and pray that you take your leap of faith. If you want to talk more please contact me. ♥

Click HERE to read the Darling post.

Seizure Free!

The sad thing is I feel like most of my posts are full of bad news. Bad health updates, how depressed I am, just how hard life is (if not I have severe memory loss haha).

This one, however, will not be like that. The 10th of this month was my 3 month anniversary of being seizure free. Just writing that makes me cry. I truly had no idea what a life was like without so many seizures a day. And the crazy thing is when they were testing me, even when I wasn’t feeling my seizures, there was still soooooo much seizure activity going on. So I always felt so sick for a good reason, so much activity going on there!

Well, Rous and I got back from our trip to the mayo a couple days ago. I’ve had so many people asking how it went, and I’m so bad at explaining things using my mouth now. Part of my brain that they burned off was the ability to think of words, thankfully I’m on a computer now and can take my sweet time, but when I talk to people it is such a struggle for me. So here is the little update….

Every MRI, ct scan, EEG (that’s basically all brain testing) that they did on me, came back completely seizure free. Zero seizure activity! My Drs. were even impressed by that. They thought I’d still be having at least one a week, but nope none. My sweet Neurologist says in about 3 months she will start weening me off my high dose of meds. At first I was a little bummed that it wouldn’t be right away, but I think I can wait 3 more months. She just wants to be extra careful with me and I’m so beyond grateful for the care i’ve received from her. They want me to see a speech therapist so I’ll hopefully be able to relearn how to communicate.

The hard thing is my blindness is still strongly there. Hasn’t exactly improved. Both eyes are now 25 percent blind. I’m slowly getting used to it, but still hoping that it comes back. My short term memory is significantly worse. They told me it would be, but wow they really burned off almost all of it. I feel so bad because I can’t remember anyone. Who they are, what their name is, memories of us. It’s crazy. The funny thing is I have had so many people say, “Hey my memory is just as bad and I didn’t have surgery.” I’m laughing now just writing this because no, no it’s not. Ha people don’t know what it’s like to have that burned off. I know so many people say things like that to try and relate, but it’s just hard to hear so much. I almost didn’t write this, but I thankfully can’t remember anyone who said it, I just know it’s been said to me so much. So I guess that’s a plus with memory loss :)Tee hee. And don’t be upset if you did say it!

This trip to the Mayo was seriously such a huge blessing to both Rous and myself. It was honestly just full of joy and real blessing from the Lord. I got to see a very dear friend, her name is Hope. Of course it is 🙂 I met her last time I was there and we got to talk about brain problems. That woman has suffered so much. She has had soooo many surgeries on her brain. And she even has my heart disease, POTS. I just am so blessed to know someone who truly understands what it likes to suffer in my way. People who have hard health issues definitely get this! This is Hope, and I’m asking you right now to just lift this amazing woman up in prayer. Pray for strength, peace, joy and healing. Prayer is so powerful! ♥IMG_5418

One of the days Rousseaux and I went into Starbucks and sat down at a table. I of course wanted to be in the sun so I had us move to a long table. There was a man sitting at the far end of it working on his laptop. We were there a couple minutes and the man says to me that I should get out of the sun. I told him how much I love being in the sun. A few minutes later we start opening up to each other…Why we were in Arizona, what I just went through. He turns his computer to us and what do you know he was in the process of studying? Focal seizures! My ex seizures! We were all so blown away by it. He is on his last steps of becoming a neurologist! We moved down by him and just started talking about life. It was his birthday, and he’s so far away from his family. He felt so blessed by us. And we thought it was so special to meet him. One of the sweetest most genuine, Jesus loving men we’ve met. We knew that was the Lord. We had breakfast with him the next morning and he drove us around showing us neat things there.His name is Giorgio. Which was even funnier to us because Rousseaux and I have a nickname for each other called Georgieaux, pronounced the same.

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The rest of the trip was talks of the future. What will life be like now without this? Do I have my blood disease? Yes. But I have had no serious bleeding in months! Do I have my heart disease? Yes. But I’m slowly trying to get used to it by ignoring and not fearing the symptoms that I get. We want to travel. I want to go to Australia! I first knew I was in love with Rous when he was living there and I was here, it’s so special to us. I have my first job that I love so much. I wanted to stop after my first day because I had never done so much or anything like that. My amazing boss said that I could, I could go home and get back on the couch all day. Or I could step out and try this. Wow, that blew my mind and encouraged me to keep going, and i’m so thankful that I have.

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Here is my beautiful Neurologist!

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A little post I did after seeing my surgeon:

Today I got to see my amazing surgeon, of course I started crying when I saw him. The Lord used him to totally take away my seizures! He said he was so so happy for me, and how sad he was of how sick and depressed I got after surgery. He kept reiterating how excited he was for my recovery and how different my life is going to be, starting at 25 being new. And how thankful he is to be able to do what he does to help me. Thank you sweet Dr. Zimmerman

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It’s been on my heart for awhile now, and just recently I really felt called to write a little book about my struggles, battles, hardships, and joy that I’m able to have through it all. Since going through such hard things since a young age, my prayer has always been that the Lord will use me to be a light and example to others who are battling such hardships. Now that I’m starting a new season of my life I feel it is time to start on this book. The crazy thing is I was at work, and my old Pastor Peter-John came in. I was just thinking about contacting him the day before because he wrote a book, and his testimony of what he’s been through touched me so much. I told him that I was thinking about it and he said he didn’t think he was suppose to be in the store to buy something, but to tell me that I absolutely am suppose to write a book! So well, that’s confirmation for me alright! If you have any wisdom, knowledge advice please please contact me.

My friend Amy, has started a fundraiser for me. As most of you know brain surgery, drs appointments, massive amounts of testing and traveling back and forth can be expensive. If you feel led to give even a tiny bit it would bless us so much. We fully know the Lord will provide and that thankfully gives us peace. Click here for the link 🙂

As most of you know I’ve wanted to meet Ellen and give her a hug. Thanking her for all the laughter she’s brought me through so many days of sorrow. I have not heard from her yet, but we made another video to hopefully get in contact with her…

Here is our new video, I can now sing from surgery!!