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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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.

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!

 

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.

2 Month Celebration

It was 9 years of having multiple seizures a day, 2 years of having over 20 a day. They would wear me out so badly. I couldn’t talk when I was having one, I couldn’t tell whoever I was with that I was. I couldn’t even think of the word seizure after I was done having one. I was so beyond fatigued after one, my whole body just felt so sick. I could barely talk for quite awhile after. I couldn’t eat after. I didn’t even remember what life was like to not have multiple seizures a day.

Today is the 2 month celebration of not one seizure since my surgery. I’m crying out of joy as I write this. I had no clue what it was like to live a seizure free life. Wow, it is so beyond different. I honestly feel like a new person! My heart and head feel so much kinder towards…life! I have a joy that I don’t ever remember having. My desires to do so many things are slowly becoming realities and I just feel so blessed, so thankful, so happy.

The first month or  I regretted it badly. Even though I wasn’t having seizures it made me  beyond sick. And I was  out of it, and so scared that that’s what my life would be like. They didn’t warn me about any side effects, but boy did I have them! Now all that I really have is the blindness on the right side of both my eyes, which I’m slowly getting used to. And the ability to not think of words as I’m talking, ha which I’m not used to at all. I’ve lost so so much memory, but really I’m completely ok with that. I can’t remember names, or a lot of memories. But I’ve learned to write things down quickly!

I’ve desired for such a long time to be able to bless people in a big way. And although you might not think this is big, it sure makes people happy. I no longer charge for my photography. I want to be able to give people full sessions and edits with no cost! I’ve already started and it’s just made me so happy! I’m doing a wedding next month! My desire is to really be set up with a nicer camera and lens so I can bless people in a bigger way. This Saturday I’m having a little shop in my backyard of beautiful clothes and house decorations, to try and raise money for this project I’m working on. Ugh I’m just so excited!

Early June, Rous and I head off to the Mayo Clinic for a couple days for lots of testing and Drs appointments. I’m very curious of what a machine will actually catch in my brain. Is all the seizure activity really gone? There’s been moments where I feel like I might have one, but I don’t. I wonder if that’s actual seizure activity or just my body so dang used to it that I feel that. We shall see!

I have 1 sickness down, and two to go! One of the cures for POTS (heart disease) is working out. I haven’t been able to because of how sick I was. But for the past 3 weeks I’ve been working out pretty hard, so desperate for my heart to function normal, so I feel normal. It’s been just all around amazing for my health and mind ♥

Thank you to all the people who gave us food for a whole month after the surgery, wow was that needed and such a blessing. I don’t really remember most, but just know that I’m thankful. Thank you to the 100s of people praying for me, for all the kind words, sweet notes, loving hugs. So much love to you all ♥

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Photo by my dear friend Rachel Haylie. Go check her out at Rachelhaylie.com

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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Arizona

Update on my Mayo/Arizona trip:
So this has been already quite an interesting experience. The first day and my first appointment was with a hematologist. He was sadly like so many drs I’ve seen who have no desire to really find out why you’re sick. Where my disease is coming from. He threw out some new suggestions of chemos that wouldn’t actually cure me. Just suppress my immune system more. I sat there crying through the whole appointment. I was beyond disappointed by the lack of care this man showed. When we were explaining to him all my new symptoms he had the blankest stare and said, “I can sit here and act sympathetic, but I can’t do anything.” Ok there was no sympathy or care that man was portraying. Jeez it was terrible. It made me feel so hopeless and that the whole trip was pointless. Thankfully we scheduled more appointments and different drs after that.
The next day we saw a neurologist who was incredibly thorough and really tried to get down to the bottom of it. She already did a ton of blood tests and I’m going to be hospitalized Monday to do more testing to find out why I’m having so many seizures, so light headed and dizzy, and constant weird pain in my head. She said there’s a chance that from my brain infection in 2007 I have scarring on my brain and that’s what’s causing all this. If they could figure it out that would be amazing. They would have to do surgery on my brain to remove it, which is dangerous plus my lack of platelets would be even more dangerous so they would have to figure everything out with my platelets first. So thankful to see a Dr willing to help!
Tomorrow I’m seeing an immunologist which I’ve never seen one and am hoping they will be willing and eager to really find out why my immune system is so against me. Find out the real reason behind my disease.
Thankful that Rous and my mom have been able to be here during this. Sadly Rous leaves tomorrow and my heart is pretty broken. He’s done so good at trying to be there for me. Right after my first appointment when I couldn’t stop crying he said, “welp, one appointment down..couple weeks to go!” I thought about it and realized it made absolutely no sense at all and there was no comfort in that ha but I ended up on the floor in the hospital laughing so hard because of it. He really is doing his best. They both are. But it’s hard when you haven’t been in my place ha but they’re both doing so good to be there for me. I’ve had lots of people texting and asking and praying and I can’t tell you how much good that does for me to know people truly care.
Today we went to a butterfly stadium and there was thousands of butterflies…it was beyond incredible. I was in complete awe at the beauty of all of them. It was really on my heart how much the Lord truly loves me. He created all these beautiful butterflies but those aren’t His children. I am. He loves me and cares for me so much more than those unreal looking creatures. I am His. I’m in the palm of His hands. He’s in control of this all.
The lady on the plane next to me told me that the Lord put it on her heart to give me a book about Psalm 91. Which just so happens to be the chapter I’ve been reading and praying for months through all this. She said she’ll be praying for me.
“Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation”

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Philippians 4:8

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Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things.

This is my hearts desire for this season. To not dwell on all the bad or hard things in my life, but to look around at all the beautiful things the Lords placed here in my life.

I leave for the Mayo Clinic next month and I’m so excited. I truly believe good will come of this.

I hope for joy and peace in your hearts this night.