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 ♥