For 40 years, I was a relatively health, able-bodied individual. I had my tonsils out at 10 years old, and nothing remarkable until I had my children. I was extremely sick while pregnant with my now 19-year-old and developed HELLP syndrome. The doctors did not know what was wrong for over a week. They would diagnose me with a UTI or random virus and either send me home or for scans or to the ER for further evaluation. I just kept getting sicker. I couldn’t keep down food or liquid, and the pain was unbearable. I was 34 weeks pregnant and still had a month and a half until I expected to meet my first baby girl. Everything changed when the doctor said to us, “We need to deliver this baby now, or you will die.”
My oldest has continued to make herself known dramatically but shows me daily how to thrive even though your body and brain don’t work the way they are supposed to. She was diagnosed with Autism at five years old, had seizures from a year until around her 6th or 7th birthday, and has medical diagnoses that fill charts. Yet, she has never once given up. When she was younger, it seemed so hard. Everything required a plan, a backup plan, extra time, and more. We spent more time in doctor’s offices and ERs than we did having fun. I couldn’t see the light shining through this helpless being I was responsible for. I was overwhelmed and overly anxious, and I had no idea what faith meant to me.
Almost four years ago, my perspective changed completely. Suddenly, I was patient and unable to do things. I couldn’t express myself correctly or remember simple things I always knew. In April of 2021, after months of disabling headaches and some mysterious symptoms, my doctor finally gave an order for a repeat brain MRI. I was drained that day, but in true Amanda fashion, I was eager to redecorate a room in my house. I got the MRI and went to IKEA to buy new furniture for my project. I carried it all in the house and left to pick my two younger daughters up from theater rehearsal. While driving there, my doctor called and said, “You need to go to the Yale Emergency Room right now. Your MRI is not good, and it looks like you’ve had some strokes and could have more.” I proceeded to pick up the girls, drive them home, pack a bag, and assure my dear husband that everything would be fine. I drove myself to Yale and got checked out. This was still during the height of COVID, so he wouldn’t be able to come in with me anyway. I was in the hospital for a week. They did so many tests and procedures. I tried various medications, and when I was discharged, I was told I was stable but needed more tests and likely surgery. Eventually, they would diagnose MoyaMoya Syndrome/ MoyaMoya Disease.
The following two years were a blur of hospital visits, brain surgeries, therapy, medicines, doctor’s appointments, and new challenges I never expected to face. But, something started to shift in this period. I’m sitting here today with a bad headache. I have headaches every day, but today is particularly painful. I guess I’ve learned to function through this pain, though I won’t drive or operate heavy machinery. I’ve failed procedures and medicinal therapies to date, and the pain medicine doctor dismissed me because they couldn’t help. My new neurologist says to try Cognitive Behaviour Therapy, so I guess I’ll try. It has to be better than Botox needles that don’t work! Day after day, not knowing how bad the pain would be, how much energy I will have, what my other bodily symptoms are going to do – but I’ve never entertained the thought of giving up – not once! Not even when I was in an induced coma and was welcomed by Jesus. Instead, I’ve drawn from my daughter’s relentless spirit, from the Lord’s protective love and promise of eternal life, and worked to make each day count.
Part of that, for me, means finding something positive or joyful each day. I want to find something that makes me smile, that makes me laugh, and that fills my heart with joy. There are days when it’s picking up a Target order and getting that customized latte (I have to order online; there are too many customizations!). However, I do consciously decide to reach out to the Lord every day, whether it’s through reading the Bible every morning (or most mornings), reflecting on sermons or readings to create graphics and advertisements, or even listening to the girls share grace at dinner time or stories of their days.
The days are not easy, but they are filled with love, and I can spread that love by sharing the parts of myself that still work with others. So, if you ask me: “How are you doing?” I won’t have an answer most of the time. I usually say, “I’m getting by” or “It’s a beautiful day” because I don’t want to linger on the hard stuff – everyone has it. I try to focus on the good and present, embrace the past and the experiences, and let the Lord shape my earthly future and eternal life.
Amanda Renz
