Hand to Hold's Official Blog: Written by Parents for Parents

Talking to others about your new NICU life

Congratulations. You are the parent of a preemie.

In the next few weeks you will readjust your expectations of a normal pregnancy and a normal birth. And around you are people who care for you, who are trying to understand your new world. This post is about these friends and how to understand their friendship in this new season.

preemie footprint NICUYour child is here, born too soon, fighting to gain the strength that comes natural to most full term babies. The strength to breathe, the strength to suck, the brain strength to produce strong, sure heart beats.

Draw a small circle on a piece of paper. In the center is your preemie. Around your child are you and any other immediate family members.

Maybe you now live at your baby’s bedside, maybe you’ve gone back to work or back home to older siblings. It doesn’t matter where you are physically, because your heart is still there beside that tiny being. Every time the NICU comes up on your caller ID, your heart will thump and turn.

You are at the epicenter of this new madness, the combined delight of a new being and fear of uncertainty, of medical difficulties, of a world turned upside down.

Surrounding you are others who care. On that paper draw a circle around you and your immediate family. Maybe draw many circles – one for the next ring out, grandparents and close friends, then a ring for colleagues and acquaintances, on out for friends of friends, etc.  These are the people that are surrounding for and caring about you and your little one. And they are important for you on your journey. Feel surrounded. You are not in this alone.

This comes as a blessing, but if you are an introvert like me, it can also be tiring.

For me, those ‘others’ fit roughly into five categories, and understanding where they were coming from helped me listen and respond to them better.

  1. Empathizers: They can easily feel what it might be like to be at the epicenter of NICU life. At times, as they struggle to understand, they lean on you for strength. Sometimes the weight of their questions and worries compounded my own, making it hard for me to emotionally breathe.

Strategy: Let these friends know that you are so glad they care so much. THEN find a point person (maybe someone that fits under bullet point three or five below) that can help pass your news on, so that you are not always around for the emotional processing. Refer these people to your care page so they can stay in touch. Think about where they are in your circle diagram. Tell them that they have your blessing to share the news with someone in their circle or a circle surrounding their circle. They do need time to process the news, too. Give them space to do that, and give yourself the freedom to be involved as much (or as little) as you want as they process.

  1. Hope Givers: Since they can’t fix your child, these friends may try to fix your worries – real or imagined. They will bring stories to you, like little offerings of hope: stories of another child that they think was so like yours, that fared well, stories of miracles, inspirational quotes. Sometimes these friends do bring hope with them. Other times their stories aren’t so like your child as they assume, and the result isn’t that comforting.

Strategy: Take the cards and the quotes with a grain of salt. Hold tight to the ones that help you. Read and reread them. Throw away the stories that don’t help. Take the time these people spent writing or talking to you as proof that they cared, and hold on to that sentiment alone.

  1. Helpers: They offer a willing hand, they encourage you to call any time you need anything. If you’re like me, though, you’ll likely never call. I couldn’t remember what day it was, and I was too tired to try to plan my needs ahead of time.

 Strategy: One of my “helper” friends had a perfect approach to our situation. She offered to watch our older kids. But she didn’t say “let me know when I can watch them.” Instead she gave me a concrete time and place, and assurance that this was not just an offer, this was something she expected to do. “I want to watch your girls on Saturday so you can sleep or go to the NICU. What would you prefer, should I come over so I can watch them in your back yard or would your girls like to have a pool party in our back yard?”

Online calendars also work wonders. When a friend asks how they can help, ask them to set up an online care calendar so that people can sign up to bring you meals or mow your lawn. Then when the next person asks how they can help, hand them the friends’ info or the website address.

Don’t be shy about accepting help. If there’s ever a time in your life when you’ll need it, it is now. Say yes to these helpers, your sanity will thank you later.

  1. Oblivious: There are those who think or pretend that nothing has changed. You won’t hear questions about your child from these friends or colleagues, or if you do, they won’t go deep. It will be business as usual if you see each other regularly, or perhaps they’ll avoid you altogether. I had one colleague say, upon my return to work, “It’s probably nice to be back so that you can get a break from the hospital.” I had others that kept the conversation to, “I’m so sorry about your child” and then, having tipped their hat to the elephant in the room, moved on to the real reason they came by.

Strategy: Frankly, it’s easiest just to let this group be. And, if I were to be truly honest, there was a grain of truth to my coworker’s comment. There were moments, whole minutes even, when my work took me away from worry. And there was something healthy about that balance. Just because my world centered around my sick child did not mean that everyone else had to walk on eggshells around me. Sometimes life as normal, without pity or regretful looks, sometimes that was nice.

  1. Bosom Buddies: These friends may have been your best friends for decades, or they may surprise you. They may not be the people you’d have predicted would truly “get” your circumstances. But there they are, coming out of the woodwork and sitting with you, supporting you emotionally in ways you didn’t know you needed. These are the friends that know when to ask deep questions, and when to crack a joke and talk about trivial things. They could read when I needed space and knew how to engage me when I wanted to talk but couldn’t find words. They empathized, but didn’t lean in to me. Instead they somehow pulled weight off of me.

Strategy: Put them on speed dial, make time in your life for them. They are rare finds indeed. I wish I knew how to be one of these people. Best I can tell, the trick is to learn both to laugh and to sit in silence, to learn to simply be, without expectations or agendas.

 

Congratulations, you’re a NICU parent. This is a rough road to walk, but you are not alone. And something happens at the other end. You will look back and realized you’ve gained something. Not just a new baby, but deep friendships and new empathy. It doesn’t make the NICU road worth it, but it does redeem it, just a little bit. Welcome to a new side of parenthood.

Laura Maikata About Laura Maikata

Laura Maikata (MI) is mom to three fantastically unique children, the youngest of whom was born at 23 weeks due to preterm labor. Within months of finishing a MA in Teaching English to Speakers of Other Languages (TESOL), Laura found herself as a student, instead of teacher, of a different kind of foreign language – the language of medical professionals. In the NICU her son, nicknamed "JAM." had surgeries for a PDA, NEC and AP-ROP. More on JAM's tenacity for life can be found on Laura's blog or on Twitter.

Comments

  1. This is so helpful! We’re only 3 weeks into our NICU journey and the most exhausting part has been answering everyone’s questions. I’m also an introvert, so thank you for the solid advice on how to handle people. Greatly appreciated!!

  2. Rabiya, I am glad it helped! A secure, password-protected care page was definitely helpful for me. I was able to process our news in writing (my preferred way of processing) AND get the news out to others in a way that didn’t wear me out.
    So sorry you’re in the NICU, and I hope your stay is uneventful.
    Laura

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