What Life Is Like After Having My Son Fight for His Life in the ICU

For me, life after having a child in the intensive care unit is nothing like life before.

Of course, when you bring home your first newborn baby you might feel scared. That’s expected. Will I be able to handle the sleepless nights? Will I be a good parent? Am I doing enough? Am I enough? These are all fears many parent have, but after you experience something so devastating as watching your baby in an intensive care unit fighting for his life, those fears become worse, much worse. The biggest fears you had before have become your reality. The fears you had prior to your ICU stay become minute in comparison to your worries now.

You watched your baby almost die! A warm stream of tears drip down my cheeks just thinking about it. Typing the words makes me feel sick to my stomach, but it’s the truth. It’s your brutal reality. Your child, the child you are supposed to protect, got sick. Very sick. So sick you had to come face-to-face with the most heartbreaking, stomach-sinking, helpless-feeling reality you’ve ever encountered…you could lose him. What if I lose him? How on earth could you ever possibly go on? Those thoughts are short lived because you, as his mom, have to stay focused on his recovery. There’s no time to waste on feeling sad and sorry for yourself. You have to stay positive and push forward no matter how hard it is. Not only for you, but for your family. Your husband needs you. Your baby needs you. You feel you have to be the rock they need. Of course in the middle of it you don’t know that’s what you’re doing. You just do it.

Upon your much anticipated return home:

Leaving the hospital is one of the most exciting and terrifying experiences I’ve ever had. You’re obviously happy to have your child healthy enough to return home, but with that return comes much responsibility. In our case, we had to schedule a meeting with a nurse to teach us how to administer antibiotics intravenously through a peripherally inserted central catheter (PICC line). We also had to be home in time to receive medications from a delivery service as his medications needed to be refrigerated and were delivered in a cooler. We received boxes and boxes of medical equipment upon our arrival. We essentially became our son’s nurses.

Our fears have multiplied immensely. Will my son have a seizure? What if he has one while he’s sleeping and I don’t know? What if I forget to give him is meds? Am I capable of administering antibiotics through this PICC line that goes directly into his body? What if I miss a step? What if I don’t get the line clean enough and I make him sick again? Will my son recover from this? Will we recover from this as a family? Will he ever walk? Crawl? Read? Play sports? Will other kids pick on him and call him names? You might begin to think you’re losing your grip. Am I worrying too much? Am I overthinking things? Everything you used to see as ordinary and not even give any thought becomes an ordeal.

People stop coming around. In the beginning of your ICU stay you might be overwhelmed by all of the people reaching out in different ways. Some people send cards or gifts, others send gift cards. Some send messages through social media and it is damn near impossible to keep up and message everyone back. Many of your responses to the messages might simply say, “Thank you,” or go unintentionally ignored. You probably won’t have the energy to give the thoughtful response you’d like to give. But once you’re home and a couple weeks go by, the phone calls might start to fade and the visitors disappear. I’m not sure if it’s because people believe you’re all good now that you’re home, or if people want you to have your space to get settled back in, but the help, encouragement and check ins…they seem to fade away. It might leave you feeling more lonely and afraid than you ever had before. Don’t get me wrong, people still check in and ask how everything is going and I am unexplainably appreciative of that. What I am saying is, there might be much less of the support you had become accustomed to and it is a huge adjustment.

Reality hits. You begin to process what has happened to your family once you’re home and things quiet down. When you’re in the hospital the nurses take over the care of your child — from changing the baby’s diaper to helping bathe the baby. You begin to feel like it’s not even your baby. Now that you’ve returned home and the nurses are no longer there to help, it’s again your responsibility. It’s not that you want it to be or expect it to be someone else’s responsibility. You just might feel like you’re a brand new mom to a different baby and need to get acclimated to it all.

You might obsess over every little milestone. I can’t tell you what a “normal” mom goes through as their baby reaches different stages in their development or certain milestones because my experience is far from “normal”. But I do know what happens to a mom whose child goes through a traumatic event and she’s told her son has significant brain damage. You are expected to wait (on pins and needles) to see what exactly your son’s needs are going to be. My son is not an average kid (whatever that means). He’s not just a kid “who’s doing things on his own time” or at “his own pace.” It’s so much more than that. He has brain damage. No doctor, specialist or therapist can tell you what his (or your) future holds. Yes, they can make predictions, but what his future  truly holds no one actually knows. I understand people who say he’s going to do things when he’s ready, or on his own time are just trying to help take my worry away, and I love them for that. But in all honesty, the worry will not go away. Those worries are undoubtedly going to be here for a long, long time.

You miss the care and security of being in the PICU. Do I wish to go back into the PICU with my son? By no means. But when you go through an event such as this, you become fond of the sense of security you develop over your time in the ICU when you have doctors, nurses and machines monitoring your child 24/7. Returning home was the most  terrifying thing in my life. My husband and I were obviously overjoyed to have our son healthy enough to come home and not need to be monitored 24/7 but now it’s all on us again. Every sneeze, every breath, every move scares us. We question everything and fear the worst. Are my hands clean enough? What if he stops breathing? Do I know what to do? Can I do this?

 

You might blame yourself. In my situation, my son became ill from a bacteria I tested positive for. Whether other ICU parents’ cases are similar to mine or different, they probably still find themselves to blame in some way. No matter how many people tell you it’s not your fault, you did everything you could or that you caught it early — you might still blame yourself. You hurt so much and you’re angry. Really angry. Why didn’t I ask more questions? Why didn’t I do more research? Why didn’t I know the signs? If I had found the answers to these questions would he be in a better situation than he’s in today? Would he be crawling? Walking? Saying more words?

You might lose yourself. Becoming a mom poses it’s own challenges when it comes to keeping your sense of self or keeping your identity as an individual, but when you have a child with disabilities the challenge is considerably greater. Your every waking moment is structured around the needs of your child. What therapies do we have today? Doctor appointments? Do I have enough time between therapies to shower? And in my case, I left my career to be with him and provide him with the best care possible. I do not regret this decision to leave my work but I do miss it.

What we need from friends and those who support us:

We need you to listen.  Allow us to talk about what happened. If we are talking about it, it’s likely we are ready to. We understand it hurts you to see us hurt and we appreciate that you want to protect us. But, for some of us, talking about it actually helps us process it all. Over time, sharing our story helps us become less sensitive to it. For me, it is therapeutic to share our story as spreading awareness has become my mission in life.

We need you to stop trying to fix our thoughts and feelings. The way we feel is exactly that. We don’t need you to change it. We just need you to allow us to feel it and to work through it. If there was an easy fix or if it was possible to make it all go away with a few conversations and pep talks I’d say “Sign me up!” but it’s not, so let us process it our way. And by talking about it, we are not dwelling on it or holding on to it. Nobody wants to feel this, nobody.

Check in. Ask us if we need help and when we say we are OK (and we will) insist on helping. We put on a face of determination and strength for so long we forget how to turn it off. We don’t know how to accept help. Accepting help means we are struggling, and who wants to admit that? It means we have to set aside pride and show that we’re vulnerable and imperfect. Few people want to admit they need help. But we do need help. We stand together with our little warriors and fight relentlessly for them and push through the tears and resistance in hopes it will pay off and our children will persevere and push through the countless obstacles they will undoubtedly face. And we are tired.

Make us laugh. “Laughter is the shortest distance between two people.” You will never truly understand what we have endured or what we endure daily and that is OK. We would never want you to. But by making us laugh you are showing us life is good. Life goes on. Laughter can be the simplest most powerful therapy you could provide for someone in pain.

Just love us. Love us for who we are and who we have become. Trauma inevitably changes us. Tell us you care. Tell us you love us unconditionally. Tell us you’re there for us and love us for who we are; no matter where on this emotional roller coaster we may be.

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Thinksock image by izhairguns