By: Charissa Ostrom
During my daughter Evelyn’s 304-day NICU stay, I ended up in the same hospital for an intestinal obstruction secondary to my chemotherapy treatment. Even though we were on the same campus, I couldn’t go see her because I was hooked up to suction to relieve my obstruction. During that time, Evelyn’s neonatologist discovered her rare genetic disorder, Kat6B syndrome, and she came up with a treatment plan for Evelyn. Evelyn’s nurse, neonatologist, respiratory therapist, social worker, and my husband brought Evelyn to my hospital room for a care team meeting. She was intubated and on oxygen, but I finally got to hold my sweet girl and all was good.
A feeling of hopelessness
As we started talking, her neonatologist went over her care plan, possible outcomes (which were completely unknown), and treatment options. One of the treatment options was to put Evelyn in hospice and let nature take its course. I heard the word hospice and tears flooded my face as guilt set in. I felt like I was failing my daughter. The fear of losing my first child was unbearable. I felt worthless, hopeless, and out of control.
A feeling of peace
Then I felt the presence of Jesus in my room. When my husband and I told her care team that we would do everything we could to give Evelyn a good quality of life and a fighting chance, I felt at peace. Despite agreeing to what felt like an impossible situation - bringing our daughter home on life support, putting her through multiple surgeries, and accepting that she may be wheelchair-bound the rest of her life - I felt a supernatural strength that only can come from God. I was at peace with our decision, trusting God’s will for us.
Philippians 4:6-7 tells us, “do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”
These verses taught me to commit all my worries to God, for I know he loves me and cares for me. His love for me goes above my human comprehension. At the time, I could not comprehend what his love for us would look like in this situation. I couldn’t understand how he was going to deliver us from such pain and illness. I learned quickly I wasn’t going to understand all of it but that I could trust God and his love. As a follower of Christ I’ve been learning to have faith in God’s plans. And this faith has led to grace, which continually yields PEACE!
Charissa and her family live in New Buffalo, Michigan. Charissa’s daughter’s 304-day NICU stay and her daughter’s rare genetic diagnosis (KAT6b-genitopatellar syndrome) have given Charissa the gift of a powerful testimony. Charissa is a devoted follower of Christ, passionate about leading others to Him.