Reality Of My Life

Waking up at 4 am with my heart going wild over life is hard (anxiety, stress and this wild heart disease). Why can’t everything be ok?

I never thought I’d still be a sick girl by now.

It’s actually a very, alone battle to be suffering for so long. Not having people understand… me looking “normal.

Every single day I wake up not knowing if it’ll be a “good” day or a sick day. It can change within seconds in my body too.

But I know, I look “normal”.

I went to my high school reunion two nights ago. It was a lot of emotions for me in a lot of ways. I was so sick in high school… that’s when I had meningitis… and I’m still dealing with it.

I’m still struggling that battle.. 10 years later?!

So many said how great I look and that I must be better than what they’ve heard of me online…

It’s crazy, that the day before at the same time I was in the er. My vertigo was crazy. The cyst on my head had increased a bit and my hemotologist was concerns that it had grown more on my brain and that’s what’s been causing all my messed up symptoms for the 2 months.

I was scheduled to get the mri today, but the way I felt had to be done. I had to get the results figured.

I remember laying in the bed just feeling so alone. Rous was with me and I appreciate him so much. But alone to the fact that it’s my whole body…. my whole body has been doing this er thing since I was 12? Why?

Why am I getting multiple mris a year for my brain? Why do my platelets still drop terribly low? Why do I feel so sick and messed up so many days?

But I look great right? I’m not sick anymore right? It could be worse right?

If you felt how I felt you wouldn’t ask me things like that. You wouldn’t assume you know how I’m physically and even mentally feeling.

It’s a battle in both ways.

Right before I was getting my mri, the man running the whole thing kept calling me friend, kept being caring, genuine, sorry I’m doing this (after reading my history he said). He changed how I emotionally felt with it all. He made me feel understood that I’m sick, cared for that I’m sick, ACKNOWLEDGING that my life has been hard and this suffering is very real.

I remember listening to Citizens and Saints as the whole mri noises are blaring in my head and I was crying, I felt so cared for my this random man? Why can’t I feel understood by those I know? Why did a man I just met understand I’m still sick and have been for so long?

My spirit was lifted in the midst of that mri. I felt thankful to God that He allowed me to meet that man. I told him after how much I genuinely appreciate the care that he gave me, the words that he said.

It’s so hard feeling so misunderstood with my health battle.

Just to have a few in my corner understand means so much for my being. Just to acknowledging that this is a struggle and they feel for me, care for me, understand I’m sick… means so much.

I’m still struggling with the severe trauma from the last brain surgery. My drs didn’t think it would be that bad…. it’s made me a different person. Good and hard ways. The Lord will use it and already has in SO many ways… that still makes it hard though.

Laying down on the couch all day is weekly, appointments are weekly, checkups are weekly, dr calls are weekly, er visits are often.

That’s my life. The reality is I’m suffering. The reality is I’m sick. The reality is about 4 people understand (not including Drs, nurses, counselors). Imagine going through so much sicknesses and only saying 4 people get it? It’s hard. It hard to my heaviness of feeling alone with it all.

Please stop asking when I’m having a baby. Please stop saying you’re so happy I’m not sick anymore. Please stop saying at least I’m pretty (makes me sick to my stomach even being reminded of people saying that). Please stop saying it could be worse. Please stop telling me to just smile more.

Please cry with me. Please a-knowledge that I’m still sick. Please feel sadness for each health event I have. Please don’t have your prayer be for kids but for my HEALTH. Please know my faith and trust in God is so much greater from all the sorrow that continues. Please don’t look at me and assume “I’m fine”. Please don’t compare. Please don’t give me advice. Please know it’s a continual battle. Everyday.

Well, it’s now 5:19 am. Maybe today I’ll feel “good”. ❤️

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I am thankful….

I am thankful…..

Able to drive after a year ❤️

That spring is now here.

My love for creating photos.

My sweet Dr who has given me to brain surgeries with care.

The ability to go to morning worship every single morning.

The older men in my life who I cling to, full respect, trust and wisdom that is needed from us all.

Living right by the beach for 6 months 😍

My Hemo/onco Dr since I was 16 and has cared for me and watched me go through so much, with love. And my sweetheart Dr since 12 is beyond still loving to me ❤️😭

My complete belief, hope, trust in Jesus Christ. My Savior, my Rock.

Finally able to start making actual food after a year of my brain not able to, and it’s so healthy and yummy!

The fun I have with creating our home 😍

My sweet Deb Larson in Eugen( hardest place to live for me) who would care for me and show me love SO much!

Able to have a small job as working with so many brands on my Instagram… for income! 🙌🏼 (sorry to the ones who think all photos of me advertising is bad 😂)

How even more clearer things about life has come to me such an intense year. ❤️

Having the best tenants who are some of the dearest friends 😭

My nurses over at DUBS

Peonies just bought and knowing they’ll bloom soon 😍

My husband truly desiring the Lord, growing so much more than I’ve ever seen, a genuine love to the Lord and me, so many gifts and skills that he’s beyond good at, the fact that we’ve been married almost 7 years!

Drinking coffee every single day 🙌🏼🤤❤️

The handful of people that I can vent to, cry with, understand me. (You all should know who you are😭)

Tell me one thing you are genuinely thankful for ❤️

Weep With Those Who Weep

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.

Being Real Video!!

img_5445New Youtube Video! Please Watch!

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

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!

 

Love, Rous

Dear friends and blog readers,
Hannah has asked me, to update her blog with some of the details of the last three weeks.
My tendency is usually to share everything that is going on through my optimistic lens, but Hannah specifically requested that I “be sure to be raw,” so please brace yourselves for some serious carnage.
As the weeks got closer for Hannah’s surgery, her anxiety and fears grew more and more intense…understandably. Opening up her skull, and heating a part of her brain with a laser is a serious surgery, especially when her other medical fragilities were factored in. She feared the pain, she feared the possibility of waking up without memory, she feared the unknown possibility of terrible things happening, and she feared dying. It was a very tough few weeks before she headed south.
I have never experienced prolonged physical and deep emotional suffering nor chronic pain and that has always made it difficult for me to understand just how those things affected her. I have never been able to “understand” or feel exactly what she does, and often that left us both feeling alone at times over the past few years. Her in a pit of despair, and me on the outside looking in, without any way of really helping anything get better. I use to try to share encouraging words, verses, promises and truths and would find that rather than bringing us closer, my words could end up separating us emotionally. I’ve come to learn that as I carried myself with a ‘joyful and triumphant’ attitude, it appeared as though I wasn’t actually feeling for Hannah, or hurting when she was. A verse in Proverbs kicked me in the butt one morning. “Like one who takes away a garment on a cold day, or like vinegar poured on a wound, is one who sings songs to a heavy heart.” (Prov. 25:20) Rather than being a warm and loving and present friend, I tried to be the solution. There was a real part of me that felt like I was failing as a “spiritual leader” if my wife was not singing hymns like Paul and Silas in prison, and so I tried hard to pep talk and preach my wife out of the pain she was in. I missed many opportunities in the last few years just to sit and cry and be there for her. I’m slowly improving (I hope she would agree), but it’s taken a while to learn what Wesley Towne always says, “There are no hyper-spiritual cures for suffering and pain.”
I’m suppose to be writing about her surgery and recovery though, so maybe I’ll pick that thought back up in another blog someday. The day she went in for surgery, her platelets were not nearly as high as they needed to be for a safe surgery with minimal risk of serious bleeding. (This was the result of a doctor not infusing her with the normal amount of IVIG she normally gets, because he had never heard of anybody getting such a high dose, and didn’t believe that she really gets that much.) So the surgery was postponed as she went in for a third infusion of platelets and IVIG (a medicine which kills her anti-bodies, which are killing her platelets, so that her platelets can live a little longer.) I filmed her making really funny faces at the doctors who were walking by, and we sat there for a while wondering if the surgery would still happen that day.
They came back in and drew her blood hours later and said that her platelets count had sky-rocketed. That meant a green light for the surgery. Her parents and I wanted to give her prolonged affectionate goodbyes, but she insisted that we refrain, being as she wasn’t in the mood to get too emotional. Scott, Lisa and I sat for hours and waited for some news. It was past 10 pm before we got the okay to head up to the fifth floor where she would be staying. She was just waking up from anesthesia and was in extreme pain. She had originally planned to pretend like she didn’t remember anybody as a prank, but she wasn’t at all in a joking mood. She was just in pain and on a lot of drugs…I mean meds.
The severe pain lasted at least 4 days straight, but she was still reluctant to take the pain killers. She hates feeling weird from the pain killers, but she hates the post-brain surgery pain even more, so she took some. It was hard for her folks and me to sit there and watch her be in such agony. Seeing her throw up several times and watching her just cringe in pain every time she would move was pretty difficult. 5 days in the neurology recovery room she was finally discharged, but her pain had not decreased much, nor had her brain swelling. Her vision had been pretty messed up. She lost peripheral vision in the upper right quadrant of each eye being completely. This may improve over time, so please keep that part of her recovery in your prayers!
After several check ups and painful trips back to the Mayo Clinic, we finally flew home on Friday, March 18. It has now been two weeks since her surgery, and as slow and painful as her recovery has been I have the privilege of announcing two seizure free weeks for Hannah! It’s nothing short of a miracle what the doctors were able to do. She continues to progress each day little by little, and her pain is slowly decreasing and her strength increasing. We have walked a few miles total this last week!
There is so much more to tell, but I have to wrap this one up, because it’s already past my bedtime. I must conclude with giving thanks. First, I thank You Jesus. You have given us life and sustained us. You have provided us with hope, help, family, friends, and every other good thing in our lives we have because of Your goodness and grace. I thank you Hannah, my amazing wife for your patience with me, slow learner that I am. The promises that we made to each other years ago we will keep forever. Though sickness and health, till death do us part. I love you and you will always be my best friend. I want to thank the doctors, nurses, and staff at the Mayo Clinic who have so hugely helped my bride. Dr. Crepeau, Dr. Zimmerman, and the nurses on the fifth floor, I especially want to thank. To Scott and Lisa who have cared for and loved Hannah long before I ever did, thank you for entrusting me to love her, and for continuing to be there in countless ways. You two are amazing and I’m so thankful to be in your family. And how could I possibly express the abundance of gratitude that i have for everybody who gave of their resources to cover the cost of Hannah going to the Mayo Clinic?! It amazes me that we have such a loving and generous family and circle of friends! To our church family at RVF and Ekklesia, you have bore our burdens with us and shown us the love of God and blessed us beyond measure. Thank you to the hundreds of you who have continually been praying for us in this journey. I am convinced every single day that I lay my head down that we have only persevered because of your prayers and God’s mercy in answering them.
Thank you all who have brought us meals since we returned home. Thank you to the dozens of people who have sent Hannah loving cards and sweet things in the mail! One of her absolute favorite things is getting mail (bills not included). Lastly, Thank you who read her blog and have encouraged her to keep sharing and writing about her life! Because of you all, Thanksgiving comes not once a year, but with every remembrance of your kindness toward us.

With utmost sincerity and deepest affection,
Rousseaux Brasseur

 

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