One Year Since Hell — DoublingDownMom

Sep 11

Sep 11 One Year Since Hell

Blog, Down syndrome, Health, Hospital, Motivation, Parenting

Today marks one year since Lottie’s open heart surgery, turned near death experience. One year since the most terrifying, faith fertilizing, gratitude birthing, episodes of my life. Such a burn, leaves behind sensitive areas of freshly healed wounds. Post trauma has surfaced in ways unanticipated, popping up occasionally to this day in my life.

Recap: Twelve months ago, our daughter came down with a virus and bacterial pneumonia, three days after her reconstructive OHS, to repair her complete AVSD. (It’s wordy, I know). We spent 35 days in the ICU, 20 of which she was on a ventilator. Her acutely damaged organs began to shut down. Her body became reliant upon medications such as methadone, morphine, and fentanyl. Her coloring went ash grey. Her face; swollen and unrecognizable. We stood by, watching sats decrease, fervently praying, all the while feeling God usher in His waves of comforting throughout the uncertainty. The world joined our pleas. With an audience, the Lord demonstrated His ability to save. Our story ends with a testimony of healing. Our ending was never one gained by merit, but simply God’s preference of attaining glory this time.

Fast forward: We have been privileged to watch our little girl grow and thrive, and are immensely grateful for that opportunity. Grateful for more time with our daughter. Grateful for the demonstration of miracles unfolding. Grateful that Our God-over-the-storm, used our baby to connect us to people all over the map. Yet alongside my gratitude, still occasionanly flickers a twinge of pain.

She lives with a scar, I live with a flinch at recollection. My healing process continues-reference my middle kitchen drawer, housing medical supplies I am not yet ready to discard, “just in case”. With my own physical pain, come memories of witnessing Lottie’s past sufferings. Migraines bring me to tears, because not yet has one’s strength caused my own eyes to cross, as I watched her’s once do. Smells of medicine, rubber gloves, and Chloraprep, slam me back into that hospital room, amidst empty coffee cups stacked into towers over the weeks. My throat impulsively constricts at the echo of our ordeal. Inability to cease her former discomfort, pangs me with guilt- if I allow it. Instead, I choose to breathe a prayer, and refocus on gratitude, my most effective weapon.

Discipline over my thought life has strengthened my ability to move forward. I cut short inner dialogues over the unpredictable future. Cardiology appointments remind me that we may very well require another surgery. I wonder to myself, can I endure that again? The thought leaves me feeling tired and overcome…yet failure was never our inherited story. God will be there again, as He was before. He remains a healer- one who created defeat to be at our hands, not over them. For twelve months I have exercised muscles of trust, flexing the truth that He will restore and renew me every step with each procedure, just as He promised.

It has taken me a full year to heal, to navigate stress, and to find our new normal. A full year of space, before I felt ready to reach out to other families going through a similar situation. Until now, I was not ready to turn and assist a fellow passenger on such a turbulent ride, while still feeling so queazy and disoriented myself. However, there is light at the end of this PTSD tunnel, and it is a mosaic of knowledge, empathy, and compassion. These currently have led me from comforting myself, towards comforting others.

The title here is incorrect. We were clearly never in hell because God was so intimately close to us. We were on a battlefield. Our battle was less of a temporary scare, and more of a brutal reminder that this is not heaven, yet. We need to assess the snares laid (worry, guilt) and stock up on weaponry (gratitude, praise). Happy anniversary to us, one worth celebrating, because God repaired and strengthened more than Lottie’s heart.