Loneliness, Anxiety & How to Help
I cried every day for the 110 days that our son was in the NICU. Heck, I often still cry.
Most days I cried out of the pain I was experiencing having to watch my son go through all of this. On rare days I cried of joy because Jed was having a “good day” and we could breathe a little easier for the time being. Other days I cried simply because I felt lonely, isolated and misunderstood.
You see, the NICU has this way of making you feel lonesome and different. There is no one you can relate to aside from all the strangers on the same boat as you (key word: strangers).
Family and friends often made comments or remarks about Jed or about how we were handling the situation– they didn’t really know what was truly happening. People didn’t understand why they couldn’t come see him, why I wasn’t sending daily pics or keeping everyone updated at every moment. Some even made comments about how LUCKY we were to see him grow outside of my belly. I wanted to scream, “Don’t you get it!?”
But the issue was they didn’t. They never will and never expect them to. Take an awful situation, like your child fighting for their life and throw in the feeling of complete isolation– that’s the NICU.
I spent my day either working on my laptop by Jed’s bedside, preparing the house for him (with all the faith in the world that he would eventually come home) or sobbing. That was my life for three and a half months. My days were haunted with women walking down the hospital halls, trying to speed up their labor. My social media channels were filled with high school friends’ maternity pictures or the occasional girl who was complaining about wanting her baby out already because she was tired of being so huge and swollen. My emails were flooded with “preparing your hospital bag” tips and reminders to plan my baby shower. As if that wasn’t enough, my baby tracking app also kept going off reminding me “how far along” I was and what sized fruit he should be. Thanks app, but you were slightly off.
I’ll never forget the day we were off to a friend’s house for a birthday party. I tried to act like everything was okay and told my husband I was fine going. But all I could picture the entire drive there was everyone with their kids, eating, laughing and enjoying each other’s presence. Did I really want to be surrounded by everyone and their loved ones when my son is in the hospital? “You can do this Cristina,” I would tell myself. But I couldn’t. I completely lost it in the car and cried for a solid hour. I couldn’t get out of the car. We drove the entire way there so Jeffrey figured he might as well get down and drop off the gift. He came back to the car and said everyone understood and sent their love. Thanks, but I still felt crazy and alone. I still wanted to scream because no one really understood what I was going through. I just wanted to be with my son.
Then there was the day I told hardly anyone about, the day I honestly thought I was dying. I know– sounds overly dramatic. But well, I had been experiencing some anxiety and it finally reached its tipping point. It was 3 AM and I asked Jeffrey to take me to the hospital. My chest was caving in and I couldn’t breathe. We got to the hospital and they ran all sorts of tests; blood tests, urine test, x-rays, cheek swabs, you name it. In the end I was greeted by a doctor who told me I was physically fine and was experiencing severe anxiety. He gave me a list of psychologists to visit and a Xanax prescription. I never took the Xanax or went to the psychologist because I knew that Jed and the NICU were the cause of all my anxiety (which has now almost completely gone away). And well, why didn’t I tell my friends or family this? Because it would only make me feel more alone and now on top of that, crazy too. How could they relate?
Everyone and everything around us went about as usual. No one’s lives stopped just because ours did. People still went out to the movies. People still complained about insignificant issues like being stuck in traffic or work, etc. We were still living in this world where everything was moving along as if nothing happened, because well, nothing happened. It just happened to us. This was OUR reality.
Our reality was rushing to the hospital to try to be there when the doctors did their rounds for the day. If we missed them, we would try and hunt them down to get an update on Jed. Our reality was praying to God that every time our phone rang, it wasn’t bad news from the hospital. Our reality was trying to participate in “touch time” every 3 hours where we could help do something like change our son’s diaper. Our reality was making sure we were there every shift change to meet Jed’s new nurse and give them a brief recap of the do’s and don’ts with him. Our reality was waking up every morning at 6 to call his nurse and hear how his night went. Our reality was meeting with specialists and befriending the respiratory techs who handled all-things breathing for our boy. Our reality was showing up to the hospital everyday not knowing what we would find. Could I hold him today? Is he eating okay? Is his blood count alright? Our reality was x-rays, PICC lines, IVs, transfusions, isolation rooms, blood pressure cuffs, heel sticks, feeding tubes, antibiotics and a hundred other things. Our reality was trying to focus on our boy when all we were really focused on was the sound of the monitors in the background ensuring us he was still fighting.
I could go on forever. But this life is not understood by anyone on the outside.
On top of everything, I had to go back to work, eventually. I worked a half day in the office every day where I became the queen of poker faces. I kept it pretty professional in the office but in the back of my mind, I anxiously waited for 12 o’clock to jump in my car and cry out of frustration as I drove to the hospital to be next to my son. I would then spend the next 6 hours by his side, simultaneously working on my laptop. I’d then step out to eat and come back to spend a couple more hours with Jed before saying goodnight. I’d get home, cry myself to sleep, and wake up to do it all over again the next day.
It was exhausting and taxing and there was no one who understood. I found no comfort talking to family and friends, only those new friends I had met in the NICU or online– the ones who understood. I talked to these new friends more than the friends I’ve had for years, not because I didn’t love my friends but simply because there is nothing more comforting in those moments than hearing the words “I know” and “me too.”
This is a huge reason why I started this blog. I personally needed more of these people in my life. PTSD is a real thing and even after the NICU it can still haunt you. Finding people who have been there is so crucial in getting through this experience and healing afterwards. Even if you don’t wish to talk about your experience just yet, find comfort in them sharing theirs. Re-living some of my moments in the NICU has helped me cope a lot and has allowed me a way to hopefully give that comfort to some of you that you’re not alone– I don’t know you, but I understand.
HOW YOU CAN HELP
To those of you who have a friend going through this and you want to know how you can help them feel less lonely or just help them in general, here are my tips:
1. Educate yourself. Take interest in what they are going through and do some research. Take time to learn about the NICU, some terminology and what it is their day looks like. That way when they do share something with you, you have some foundational knowledge to go off of. Besides, them seeing you took the time to try and understand their world will mean a whole lot.
2. Don’t expect them to ask for help. They won’t. Saying “Let me know if you need anything” is almost as useless as not saying anything at all. While it’s appreciated, we are unprepared to really know and ask for what we need. Be direct and think of how you can alleviate a burden and just tell them you are going to do it. Mow their lawn, help them do some laundry, babysit their other child if they have one, drop off a hot meal at their house (NICU parents often times forget to eat and probably will not cook during the entire hospital stay). I also found a few great websites that help friends and family organize these exact needs for a loved one. Care Calendar: www.carecalendar.org and Caring Bridge: www.caringbridge.org.
3. Help them raise funds. Start a Gofund for them or encourage friends and family to collect money for them. NICU babies are often million dollar babies. On top of hospital bills, being in the NICU for so long affects work and your ability to keep up with bills and finances. Even after the NICU, adjustments will be made to their work schedule to have to take their baby to numerous appointments and deal with the fact that they will not be able to attend daycare. The financial burden of having a baby in the NICU for an extensive stay is immense. Helping to alleviate that so they don’t have to worry about money while the weight of their babies health is crushing them is imperative.
4. Gift them gift cards. If you don’t feel comfortable giving them money, gift cards for things such as food and gas or to cover hospital parking are all immensely appreciated.
5. Send a text without expecting anything in return. A simple “I’m thinking about you guys and praying for you” goes a long way. Don’t be upset if they don’t reply back. It doesn’t mean it wasn’t appreciated. Just know they have a lot more going on or even replying can cause a wave of emotions.
6. Keep reaching out. Just because the baby is home, it doesn’t mean their lives are back to normal. This is when things get even lonelier and scarier because they don’t have the support of the hospital and that group anymore. They are alone as they are encouraged to limit interactions and not take the baby out of the house too frequently until he/she reaches closer to a year old. Keep checking in. They need it.
7. Respect the need to be germaphobes. While most newborns do perfectly well in a world of germs and colds, this is not the case for preemies. They are especially vulnerable and susceptible to getting sick and re-hospitalizations. Their immune system still needs to develop for a while so please wash your hands and carry around anti-bacterial. If you’re sick or have been within the last couple of weeks, wait to visit another time. If you smoke, expect to be asked to change your clothes before visiting. Please don’t be offended by any of these things. We’re only following doctors’ orders and doing what’s best for our baby.
And as always, my big boy Jed below. One month away from his first birthday!