I’m allowed to say that. I’ve lived it for 11 1/2 years. Yes, the past four or five years have been relatively easy when compared to those first few years, but prematurity still sucks.
We were robbed of the perfect ending to a perfect pregnancy. The dream was stolen from us. We were fearful of and for our firstborn. That is so completely unnatural. Machines kept my son alive instead of my body. Multiple tubes “fed” him, instead of one umbilical cord. Medications too numerous to count kept him going when infection set in. We were visitors rather than parents. A box encased him instead of my body. Rather than the soft whooshing sounds of my heartbeat, he heard constant beeping, alarms and loud, un-muted voices. For three months, we walked out of the hospital empty-handed and went home to stare at an empty crib. When we got him home, we didn’t have parties or lots of visitors. We couldn’t show our new baby off for fear of him catching something his still-damaged lungs would not be able to fight off. He had bi-weekly weigh-ins, monthly shots to prevent him from getting RSV, developmental evaluations, and continual follow-up. Our lives revolved around doctor visits, home-nurse visits, developmental specialists visits.
We will never, ever get back what we lost. Never. Ever. Wounds heal, but scars do not go away. Good things come out of bad, but you’re still left with the memories and heartbreak. There is no end to the guilt of my body failing him. There are too many what-ifs, would have’s, could have’s, should have’s. I relive those days so often, trying to imagine what life would have been like had I done this differently or that differently. What would our family look like if we had been able to have that dream, instead of this reality?
I don’t mean to sound ungrateful for our amazing child. I am so thankful he is where he is now. But what I wouldn’t give to not have had to go down this road, to not live in fear of what might be, waiting for that shoe to drop for so long, wondering what else may be awaiting him in his life as a direct result of his prematurity.
Prematurity sucks. It steals from families, sneaks in and turns everything completely upside down. Ryley is healthy and amazing, but what a price we’ve paid to get him there. I would do anything to keep any other parent from facing this journey.