For mamas who also had sick babies at birth: How do you cope with/mourn missing out on those first precious moments and days? How do you share with others about your experience? How do you share with your child about what she/he/your family went through? How do you parent with the knowledge that your child may have issues down the road or may not? How do you combat the feelings of unfairness? Do they ease with time? How do you deal with issues of guilt even if you know on a rational level that it isn’t your fault that your baby got sick inside of you/coming out of you? — P
My son was born two months early and spent a month in the NICU. Part of the reason he was there so long was simply to grow, but he was also born with two conditions. We didn’t know about one of them at the time, but due to the rarity of the other everyone was both very aware of it and somewhat stressed by its existence.
I’ll never forget the moment I realized I didn’t get to hold my baby right after his birth like I was “supposed” to. It wasn’t when you would think (immediately following the birth), but instead it happened several hours later when I sat alone (my husband was with our son) in my half of a shared hospital room and listened to the woman next to me coo at her baby. All of a sudden it hit me: I didn’t get to do that, and I didn’t know when I would. I asked to transfer to my own room and mercifully they had one open, and I spent the rest of the following four weeks visiting the NICU for 12-15 hours a day.
Luckily for us, we were able to hold our son in the first few hours of his life. Not immediately, but quicker than many of our fellow NICU parents. Granted, we had to deal with various wires, monitors, and machinery while doing so — our son’s veins were tiny, and he spent a few days with an IV in his head that seemed particularly treacherous to us.
Both my husband and I found it nearly impossible to adequately explain what we were going through to our friends and family, and even three and a half years down the line it’s still a challenge. My mother gave birth to three children before me who each spent time in the NICU before passing away, and my mother-in-law came to visit while our son was in the hospital so they can each understand a lot of it, but the rest of our family lives across the country and never saw anything that we went through. Making friends with other NICU parents is tricky — you’re not really supposed to ask about one another’s children because that violates patient rights, so you have to find something else to talk about. We have a few really amazing friends who have let us talk about the experience whenever we need to, and in our experiences we’ve found that the most random things — like a beep that sounds like a hospital monitor — will stir up memories and bring forth conversation. I’m glad that my husband and I had one another, because if anything we can discuss it between the two of us whenever we need to.
One of my son’s conditions didn’t present itself until he was around 18 months old and he wasn’t officially diagnosed until a few months after his third birthday. It’s not serious as far as the condition goes (many children have much more severe cases), and we were told well ahead of time it could develop, but it was still something that we were surprised by. It totally sucks watching your child for signs of phantom conditions that may or may not develop throughout his or her life — I get that. I spent MANY a day panicked that a particular glance or behavior on my son’s part meant this or that medically-speaking, until my husband reminded that whatever happens in our lives, this is IT: the life we have. Knowing before it happens that your child may develop a disorder or illness or that he or she may have a harder time in life is rough, but if your child DOES develop something this is the road he or she has to take — and it’s the road you’ll share with them.
This mantra is also helpful when dealing with feelings of unfairness. As our son gets older and becomes more aware of what sets him apart from other kids developmentally (however mild the difference may be), the feelings can be almost overpowering. My only advice for this is to accept the feeling and release it — you can’t do anything to change what your child has to deal with, but you can accept it and turn it into something great that can empower your child. We have a strict no-“I can’t” policy in our house, and it’s one we ALL stick to. We also tell him that everyone has some kind of challenge — maybe one part of his life is hard, but other parts are brilliant and he has a lot of talents and skills.
The guilt is the hardest part, and also the one I have basically no answer to. Even though we know that we couldn’t have done anything differently to change our son’s life, sometimes it still feels like we could have or should be trying to, and it fucking sucks. I can’t tell you how many times I’ve over-analyzed the entire pregnancy and birth, looking for some kind of answer — but for what reason? Even if there WAS something we or I could have done differently, it’s already been done. The past is the past, the present is now, and the future is yours for making as awesome as it can be for you AND your kidlet.