Dear Preemie Mom:
You may remember me; I wrote to you a while ago. I talked to you about all the different challenges you might have faced and the different emotions you might have experienced. I wanted you to know that you’re not alone. And I have some other things I want you to know, too.
I want you to know that it’s okay to be afraid, even long after your baby has come home from the NICU, happy and healthy. You might be afraid that at every doctor’s appointment you will receive bad news. You might be afraid that even though the doctors said your baby could come home, something will go terribly wrong. You have dealt with a big change, one you could not have predicted or planned for. It’s okay to be unsure about the next steps you should take. It’s okay to wonder why this happened to you.
I want you to know that you should have no regrets about anything you said or did during your time in the NICU. Not because you should do everything perfectly the first time around or not be sorry for a mistake, but because you have to forgive yourself. You snapped at the nurse that day, and she has forgiven you. You walked out in the middle of a meeting regarding your child’s future, and those people understand. I want you to know that it’s okay to forgive yourself after you have made it right. It’s okay that you said no more visitors that day because you just couldn’t talk to another person. It’s okay that you said the wrong thing to another NICU parent. I want you to know that you did your best. That’s all any of us can do. You did your best, and there might have been some mistakes and some good calls, and now it’s okay to stop being sorry.
I want you to know that the feeling you have of being overwhelmed is normal. Physical therapy, occupational therapy, discharge papers, pulmonologists, follow-ups – it’s too much for one person to deal with by herself. It’s okay that you feel like you can’t handle it. It’s okay to ask someone to help you handle it. It doesn’t make you weak, or unwilling to get the job done, or incompetent. You are strong. You are doing everything you can. It’s okay that it seems like everything you have to do will never get done.
I want you to know that it’s okay to feel like you are not up to the challenge of raising a kid with atypical needs. It’s all right that you feel like this was a mistake, that you are unqualified to be a mother to a little baby who needs so many things. It doesn’t mean you don’t love your baby, or that you won’t be a great mother. You will be. You are. But it’s hard to have a kid who is different. It’s hard to adjust when plans change suddenly and with no chance to prepare. It’s really hard. But you can do it. I know you might not believe me today, but you can do it.
Mostly, I want you to know that everything will be okay. It may have been three months since you brought your baby home, or three days, or three hours. Or three years. And still you are surrounded with the chaos that became your life in an instant, when you went from knowing the future to having no idea where to even turn for help. You still check on your baby in the middle of the night to make sure he is breathing. You go out of your way to avoid the hospital where your baby was born and spent the first months of his life. You feel frustrated and sad and then guilty that you feel that way, even though your baby has been home for a long time. Even though he is no longer a baby, but a toddler, or a big boy. Your child might not look like a preemie anymore – no one would know if you didn’t tell them. Or maybe your child struggles in some areas that make it obvious that he needs extra help.
No matter what, it’s going to be okay. It’s going to be okay. You think the memories of your days in the NICU, of watching your baby fight for life, of listening to a doctor prepare for the worst will haunt you forever. But they won’t. You think you will never overcome the fear that the NICU instilled in you when it comes to your baby. But you will. You think you’re never going to be able to move past that this, that this is your life forever now. But it isn’t. It will take time. It will take healing. But it will get better.
Everything will be okay.
Your Fellow Preemie Mom