A Mother’s Perseverance Through a Difficult Diagnosis

I remember getting a glimpse of a girl in a reflection at the zoo while my son was tormenting the monkeys. I saw the vision of a very “sick” girl being pushed in a wheelchair. She had oxygen tubes coming out of her nose. I remember seeing the looks of despair and empathy coming from other patrons and not recognizing that girl in the reflection.

That girl was me. I had worked out five days a week, lived off lettuce, and never smoked. But there I was, as sick as could be with a terminal lung and heart disease. I was beyond terrified that I wouldn’t see my son graduate high school, get married, or have grand babies. This wasn’t supposed to be my life at 39 years old.

My son is and was my entire world. Knowing I might only have a couple of years with him was something I refused to accept.

The aggressive medicines weren’t working, so a lung transplant was the next step for me.

The surgeon told me that even if I received lungs in time, I would still only have five to seven years on this earth. The final option for me was a very rare surgery called a Thromboendarterectomy. Only three surgeons in all of the United States perform this surgery, and I was blessed enough to be a candidate.

The surgery consisted of stopping my heart and lungs while the surgeon tries to remove the blood clots sitting in my lungs manually. It required me to also be put into hypothermia for 20 minute sessions throughout the 11-hour surgery. As scary as it was, this was my best shot at a life with my family past five years.

The day came and went for the surgery and I woke up eight days later to a doctor telling me I had been in a coma for eight days, and I suffered an anoxic brain injury. I couldn’t walk, talk, or even hold my head up. Due to the pandemic, I also wasn’t allowed any visitors, so my only visitor was the Lord. I prayed like mad for him to bring me home to my son. It was never a pray of “Why me?” but always a prayer to understand his purpose, timing, and plan.

I would lay there asking the Lord to reveal himself to me and to get me home to my baby.

To say I was scared would be a complete understatement. I was on heavy tranquilizers, as my chest had just been sawed open, so hallucinations were frequent. I remember hallucinating many days and thinking my son Mac was there. Still to this day, I can describe every hallucination with Mac and finding comfort that he was there (even if it wasn’t real). I like to think it was God putting Mac in my thoughts and dreams to help me continue to fight.

It was a grueling almost 40 days in the ICU without any family or friends to inspire me or advocate for my care. Each day, I would try to speak and hold my head up with Mac on my mind. I knew he was rallying for me at home. Eventually, I could say a few words and hold my head up slightly. I worked and worked toward walking every day, but that was certainly a harder feat. I was also on a feeding tube for 28 days, so my body was atrophying tremendously.

Eventually, I was transferred to an inpatient rehab facility.

The day my husband, mom, and sisters came will live up in infamy as one of the greatest days of my life! After spending almost three weeks in rehab, I was walking a little each day, could hold my head up, and talk slowly. I was on my way to a full recovery. I couldn’t draw a clock or say the months of the year. However, I knew a brain injury would take a long time to recover.

The day came that I would be able to GO HOME!!! Seeing my son after more than 40 days was anxious for me. I was scared that he would be mad at me for leaving him for so long, as I knew he wouldn’t understand. I held him for a solid 15 minutes straight while I sobbed. This surgery will allow me to hopefully see my baby graduate, get married, and have babies of his own.

My biggest accomplishment is and will always be holding my head up that first time, saying my first word, and taking 10 steps by myself.

I’m a fighter and continue to say God never wastes a hurt! He used me and this difficult time to grow closer to him and inspire women like I never would have before. I know resilience is a super power of mine now, and no one can take that from me.

I am no longer that glimpse in the mirror of the girl on oxygen and in a wheelchair. I’m a strong mom that gets to be with her baby every day. I thought academic and employment accolades were what I was striving for. In reality, waking up every day to my family, taking a walk around the block, and reading the word are all I need in life.

Moms are fighters and regardless of what difficulties are thrown our way, we persevere and grow! If not for ourselves, definitely for our babies.

–Guest submission from Kristine Setser