Love, Lindsay
“Dear NICU Mama, You can celebrate your child’s unique journey and still long for the 'normal' you did not get to have.
Some days you may wear your experience like armor. You rise to support your child as they work hard to grow, gain ounces and then pounds, meet every milestone and find their place in a world not built for them. You battle with insurance companies, specialists' waiting lists, ignorance that needs educating, and insensitivity from people who should know better. You stand, resilient and unyielding, to defend your child’s right to live their best life, be their best self, chase the dreams worth chasing and have the future they deserve, however that looks for them. You watch your child grow with pride and celebrate every inch of forward progress. You marvel at the strength the NICU has instilled in them, in awe of the miracle they are.
Some days you may fold in on yourself like a paper doll. Every tear you shed seems to weaken your very structure, turn your heart transparent and expose vulnerabilities you long to hide. The medical terms are a language you wish you didn't have to learn. Your brain may be foggy from fear, medication, grief or rage. Mothers being wheeled out with their plump cherub babies, flowers, balloons and smiles make you want to scream into your hands. The wait to discharge feels unending: milliliters of milk mock you from your child's bottle, as the baby across the hall gets bundled up to leave. You crumple when the Developmental Pediatrician, SLP, OT or PT tells you the extent of your child's delay, unsure if you and your child can leap yet another hurdle. Every cough, fever or runny nose sends your heart into a panicked frenzy.
When everything feels too heavy, too biting or too much, take a breath. Then take another.
Life is not black and white, mama. It is a beautiful, maddening, befuddling gray. You can be both the dragon guarding your child’s door and the one in need of rescue. You can love your child for precisely who they are and wish the road was smoother. Your baby will find their way, mama. And so will you.”
Love,
Lindsay
More of Lindsay + Sloane’s NICU journey:
“My daughter, Sloane, was born at 30w exactly on May 10, 2019 after I suddenly developed preeclampsia with severe features and HELLP syndrome. It was a major shock: I had actually gone in for a blood pressure recheck so I could fly to Colorado for my baby shower on May 11th (Sloane didn’t want to miss the party, I guess!). Sloane was born via C-section and weighed 2lbs, 5.7 oz. We ended up staying in the NICU for 74 days due to respiratory and feeding issues. Sloane proved from the start that she liked to do things on her own time and on her own terms: we had thought we might have to come home on oxygen and, a day later, she went to full room air. We had started discussing some options for feeding and she decided to eat all of her bottles. She is a feisty, confident kiddo who knows what she wants! She is now 18 months old and, while we continue to work with a pulmonologist and different therapies (speech, OT, PT, and EI), she continues to amaze us every day with her caring heart, silly sense of humor, and strong sense of self.”
