Yesterday I made the mistake of venturing back into the interwebs in search of more information about gastroschisis. I had been feeling a lot of anxiety about all the unknowns and figured it might help to read real life stories of people who have been there, so I know more of what I can expect.
First I read about a mom who got to have a vaginal birth, hold her child briefly after delivery, and visit him in the NICU within hours of his birth, and I found myself feeling sharp pangs jealousy since none of those things will likely happen for me. What’s more, they got to go home in 30 days. Four weeks. Virtually unheard of for a gastroschisis baby.
Was it silly for me to feel jealous of this woman? Completely. Her child still struggles with stomach problems and beyond that, anyone who’s walked this road is someone to embrace, not envy. But I couldn’t help but look at her story as the best case scenario that I likely won’t have and that hurt.
Then I read about a mom who had to be in the hospital for 5 weeks before her C-section, due to low amniotic fluid. She wrote about how her baby girl did have some dilated portions of bowel outside the belly and how thankful she was for that because she had heard that when the dilations are inside, you’re looking at a much more serious case of gastroschisis.
Awesome. All of our dilations are inside and this was the first I had heard that that might be bad.
Then I found a gastroschisis support group that was started by a mom who’s child died due to complications from gastroschisis. I read her whole story. I read how some of the very same complications we’re looking at with Turtle’s dilations lead to multiple surgeries which ultimately lead to her son’s death. I read how she was in one of the best hospitals for gastroschisis in the country when this happened.
Holy shit, I thought. Forget having to spend six months in the hospital instead of three. Forget having to worry about shortened bowel syndrome. He might not survive this. Not all babies do. That’s just a fact. Does he have a really good shot? Sure. But he could die. And I know any newborn can die due to all different kinds of unforeseen factors but this challenge is on top of all of those things that every baby faces.
Cue terror. Cue feeling silly for getting obsessed over which freaking lamp to buy for his room. Cue getting mixed feelings for my upcoming baby shower that I had previously been so excited by.
Enter the what ifs. What if he never sleeps in that room. What if we never use all those wonderful shower presents. What the hell will we do with that crib and that pack n’ play and that stroller and all those things that were meant for him.
Admittedly, I was spiraling and this was just late yesterday and I still kind of am. But I did remember last night something I realized during my last freak out, way back… last week. When I looked at the tattoo on my wrist, written in my husband’s handwriting, that says AMOR VINCIT OMNIA. Love conquers all. It’s kind of the slogan to our relationship, if a relationship can have a slogan.
Ten and a half years of deep-seated, unconditional love and partnership. We’ve survived distance, depression, an eating disorder, anxiety, and just the natural changes that occur between the ages of 17 and 28. We’ve changed, our love and devotion to each other has not and will never. I know this. I may not be a religious person but I have faith in us, and faith in the fact that we can face anything together. Even if the worse happens. Even if worse than I can ever imagine happens, we have each other. I will not be alone. And our love for each other, and our love for Turtle, and the love of our families and friends will get us through.
So here’s the new plan:
1. Stop reading shit. It’s not helping. The truth is we won’t know what we’re facing until we face it and we’ll just have to deal with it then.
2. Believe in Turtle. Because only good will come of that and he. is. amazing.
3. Love conquers all. But I already knew that.