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.
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 ❤️❤️
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!
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,
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! ♥
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.
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.
Here is my beautiful Neurologist!
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
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!!
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 ♥
Photo by my dear friend Rachel Haylie. Go check her out at Rachelhaylie.com
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,