After our second daughter was born with a disability and we didn’t know if she’d make it to her first birthday I threw myself into my new job utterly. I was working 7-7 almost every day, took every opportunity to travel, and in general was absent from the situation as much as my “very important job” would allow. For me I felt completely powerless at the hospital. At work I got to solve “important” problems that were…
Glad to hear your daughter is doing well! Your story really captures a lot about the experience of attempting to find some sense of control in a situation where you feel powerless. What do you think it would have taken to develop the emotional stability to approach this differently (i.e. being able to show up at the hospital) or do you believe that experience is the only way to learn some of these lessons?
Our friends and extended family disappeared as soon as our daughter was born. I don’t know if it’s American culture or what, but people get extremely uncomfortable around people who are mourning or going through trials in their lives. People sort of blank out then don’t hang out with you anymore, or even invite you to things. After all, you’re going through a lot, we’ll just give you plenty of space.
The hospitals do their absolute best to isolate you too, unless you wanna go talk to the psychiatrist and get some medication. Groups would come to volunteer and make food for the parents of the patients (Taco Tuesday every day, it was kind of awful), and they’d laugh and joke around and high five each other for being so great volunteering (or at least that’s how it felt), while interacting with us people eating as much as possible. Somehow it made me feel worse.
My wife got “tattled on” a few times by medical staff when she’d cry, such as when they said our daughter was terminal. It was infuriating that perfectly healthy grief gets you immediately referred to a psychiatrist.
Honestly being at work was nice because I could do normal stuff and have normal social interactions. At the hospital they constantly cycle the staff through, so you don’t have the same doctor more than two weeks, or the same nurse more than a couple days. I guess the trauma of being around dying babies is just too much.
With a couple of notable exceptions on my wife’s side of the family, we felt completely isolated and alone. I can’t say for sure but I think having a strong network of people who actually gave a shit (or even acted like they do) would have done wonders for my mental health. Then again I have a sneaking suspicion that would solve most mental health issues for a lot of people.
The whole ordeal has made me much more distant from my brothers and sisters and mother, unfortunately.