This photo is a picture of my “little friend” on the left. Lately, it’s been my enemy, but why be negative😝? It’s a non-cancerous Angioma Cavernoma Malformation. It is the size of a quarter and goes deeper down. It’s a sporadic. Meaning, not hereditary. Finding that out recently was a huge relief considering our family history and that there are 3 genetic mutations.
My life is a walking testimony for the one who created my life. So I want to share this testimony with you. Not all testimonies are miracles and evaporating health issues. Some miracles are hardships that transform you and allow you to get closer to God.
The last couple months have been very hard. It’s almost a year since this started. I’ll spare you the list of symptoms but if you google them, I’ve had most. I’ve had really dark moments- not hopelessness, but moments where I’m in such a fog/confusion that I have empathy for those with mental issues and struggles. I’ve often said in this process, my condition is not fatal. However, dying is the easy part for my life, it’s learning to live in conditions that overwhelm you and depend on the Lord that becomes the tough part. The worst hit for me was (end of October/ November/ mid December) with symptoms... I was given the run around with doctors -bleeds and seizure diagnosis etc. I sure don’t know how anyone does brain issues without Jesus. He has helped me. Period. Without His strength and peace, I am absolutely weak and on a path even many doctors have not been sure of. Since this diagnosis I have seen 2 neurosurgeons, 3 Nuerologist, 3 regular doctors and within 2 months have had 8 MRI’s/Ct scans. EEG’s and a whole lot of other testing on my body..In and out of ER.
The picture on the right is me meeting with the world renown, Dr. Awad, at Universirty of Chicago Medicine. Cavernomas is his specific area of medicine and research. He has me in one of his studies now and is on his way to helping me accurately. He told me he can remove my Cavernoma, no problem. I’m still praying about this as it’s a major surgery and recovery. Timing for that is up to the Lord’s best plan for my life. I also pray for miracles to avoid surgery.
I am going into 2020 with an abundance of praise toward all the Lord has done for me during this. Praise toward Him is my weapon. It’s even hard for me because in my weakness and fatigue days I get grumpy and irritated. JOY is a love language of mine and I have had to “relearn” to speak it a new way when I’m feeling the cav issues. Again, needing Jesus even more.
The Lord is never done with me- teaching me and growing me. .... and I know if He was ever done, then I’d have to worry (think Pharaoh’s hardened heart).
Sometimes the Lord strips us to bring us closer to Him. Sometimes in my suffering He is stripping another person around me. Sometimes He is protecting us from the enemy and yet allows suffering to see His goodness or even humble us. Within 2 months I was experiencing many terrible symptoms, but *also — I was stripped of many things: superficial things... like caffeine, my occasional date night wine, staying up late to watch my favorite shows, cosmetic chemical products I use daily, working out, sugar foods, processed foods/snacks. Most these things I am rid of currently, or I had to give up as it was a trigger. The things that brought me tid-bits of enjoyment and I depended on to bring me simple pleasures, gone. In addition to this, I missed holiday family events, social events, missed my sons basketball games those months, I canceled a family vacation, forgot homework that was due for the youngest, had to choose either get dressed today or do laundry because it became tiring....I couldn’t complete more than one task- this is a mom who does 30 things at one time.... Things that brought me temporary contentment and a life I have perfectly controlled- were taken from me. God said. “Hi, it’s me Kelli.”
In this, I saw the sun peak and brighten, little break throughs of praise. When I was able to do homework with my middle son without having confusion, dizziness and fog, I cried tears of Joy that night...... I praised GOD so boldly for that accomplishment. Often, I silently dreaded helping with homework before that. I complained to my girlfriends (when my kids didn’t hear). The day I was able to carry Kase up the stairs without my legs aching, I was joyful. The things that are now my joy, are things I can do without feeling the symptoms of the cav.
God has shown me so much goodness and when I look toward the fact God has never left me alone in this....- I know I’m good. I’m thankful for this time, even the trials, because my eyes are off myself and I am able to draw closer to Him.
I’m in prayer about what’s next. I have additional testing and interactive MRI’s. If you see me, you won’t notice anything different. Although, I do have moments I ask the same question twice and also use the wrong word (but I catch myself immediately). That comes and goes.
I’m blown away by what some doctors know and others don’t. Jackie V. posted over a year ago on her Facebook page: ”We are to be our own advocates”. What she shared on her page, as she battled cancer- never left me. Jackie is with the Lord today, her words helped me the last few months- with continued strength to leave my kids for additional appointment to seek wisdom.
God has given me other gifts in this time...When I feel guilty asking my mom to come in (5 hour drive) to help babysit, God shows me her love for me. I see people show up like Jed Parish as he walked me through my dr appointments when my world is spinning like vertigo and I have a hard time understanding the doctors. Danielle is like a little rescue momma / auntie who helps me in emergencies. I Pray about everything and ask God for clear directions even as the last couple weeks have been better. God has sustained my husband and my kid’s well being. He is here taking care of everything.
If you are scrolling reading this, please pray for me... I am always in need of wisdom in this trial and strength with my sweet momma life❤️. Pray for me to have never ending JOY and for me to complain less. It’s so easy to say my negatives on bad days. I don’t want that for my husband or kids.
Lastly, I can’t smile properly because a doctor (specialist) put a Medical type Botox on my facial spasms/cheek (Dr Awad said, It’s a huge “no” for cavs).....But it is a common medical treatment for spasms/ underline seizures.
I lost my “normal” smile a couple months ago. I’m slowly getting it back. It’s amazing what is taken from us and we can’t wait to get it back!! 🥰 I miss my smile. I miss how energetic and busy I used to be. GOD says rest and be still, let my light on your life be your ray of sunshine for now.