Dear NICU Mom,

This isn’t what you pictured. This isn’t what you wanted. This isn’t what you planned for. It wasn’t supposed to be this way.

But this is how it is. This is your new normal. This place will be your home for the next 20, 30, 100, 200 days. And it’s going to be okay. You will survive this. And Mama, you are not alone.

This journey will be hard. There will be days you feel like you can’t keep going. But you will. You’ll muster the strength. You’ll borrow others’ strength. There will also be days when you are so overwhelmed with joy that you feel like you will burst. I know it sounds crazy, but you WILL have those days in this place.

Every NICU story is different; they don’t all start or end the same. Remember that when you start to compare. Then, stop. Your story with your baby (or babies) is yours. No one else’s. Your ups and downs will look different. Your ups might be someone else’s downs. Your downs might be someone else’s ups.

I remember sitting on my phone in my son’s care-space scrolling through Pinterest looking for blogs that would tell me how to get through this. Something that would make me feel like it would be okay on the days that felt so far from it.

So, I am here for you now, Mama. It’s going to be okay.

If your baby was born early, you didn’t do anything wrong. Your body did not fail. You are not less than because you didn’t carry to term or because your pregnancy didn’t agree with you.

If you are here because your baby has genetic anomalies or medical issues, you did not do anything wrong. You are not being punished. You are now among the lucky few (myself included) who will get to experience the deep joy in parenting a complex child. Yes, it will be hard, but just like this NICU stay, you will have the strength to do it. It’s not what you envisioned, but it is going to be okay. More than okay. You will learn. You will grow. You will be shaped in ways you never imagined.

If I can give any practical advice it would be the following:

  • It’s okay to admit that this sucks. You didn’t get the birth or the newborn experience you dreamed of. You can cry and be angry.
  • Get primary nurses. If you and your baby connect with a nurse, ask her to be your primary. She will then get to take care of your baby every shift she works until you are discharged. This continuity of care will be so important. She will know your baby which means she will pick up on slight changes others might miss potentially catching problems before they become problems. She will become family to you guys. You’ll feel at ease when you walk into the care space and see her face. It will be easier to leave to take a walk, eat, shower, and sleep when you know the person caring for your baby. Ask for as many primaries as your hospital allows.
  • Don’t feel guilty for leaving. This is one I struggled with, and over a year later, I still struggle with. I wonder if I spent enough time in the NICU every day. I wonder if I was selfish for sleeping in some mornings or taking a longer lunch to meet with friends. Your heart will betray you on this one. It will always feel wrong to leave your baby, but you need to do it to be able to keep going. You may get to the point where your nurses will more or less have to kick you out so you will take care of yourself. I did. It sucks feeling like a “part-time” mom, but this is only a season. It will pass, and until it does, you need to take care of yourself.
  • Don’t apologize. Whatever you need to survive this is okay. If you need space and to be alone with your baby, that is okay. If you need help keeping your house clean, getting meals delivered, lawn care, errands, etc, that is okay. Every family will be different in how they need to be cared for when they are in the NICU. Figure out what you need, and don’t apologize for needing it. Those needs may change depending on how long you are there, and that is okay too! Do not sacrifice what little energy you have catering to other people’s view of what help should look like. Your only concern is you and your baby right now. Be honest about what you guys want/need during this time.
  • Find ways to make your baby’s care space feel more like home. Decorate as much as you are allowed. It’s these little things that will make you feel somewhat normal. Bring a blanket and pillow from home for yourself. You’ll need to nap, so you might as well be comfortable.
  • It is more than okay to become a “germaphobe.” Your tiny baby hasn’t developed the immune system that other babies have. People may have a hard time understanding this, but stand your ground. Depending on when you go home, you will more than likely need some form of isolation to keep your baby safe. Be selective about who you have come over. Be the “crazy mom” who makes everyone wash their hands to the elbows for two minutes before touching any surface in your house. Be the mom who doesn’t let others hold your baby for a while. It’s okay! That time will come.
  • Speaking of holding. It’s okay to be selfish with your baby. Hold him/her as much as you can, and don’t feel obligated to share. The NICU experience robs you of so many of those newborn snuggles. It’s okay to make up for lost time and not share for a while.
  • Find your silver-linings. Every day, find three things to be thankful for. Did your baby make a cute noise? Did your baby take his/her first PO feed? Did your baby go more than an hour without a desat? No victory is too small to celebrate. Some days, it might feel harder to come up with three than others, but I know you can do it. Even if you just sit in the fact that you guys all made it through one more day, that is enough.
  • Ask your nurses what supports your hospital has for families. Think about which of these supports feels like your style, and use it!
  • Get on Facebook groups for families like yours. Online support groups are such a gift when you are trapped in the hospital. There will be strangers who “get” your situation more than your closest family and friends. You need those people. And they need you!
  • Be honest about how you are doing. PPA, PPD, and PTSD are so common in NICU moms and dads. Take care of yourself so you can take care of your little one. There is no shame in asking for help.
  • Don’t forget that you are a good mom–wait, the BEST mom. It looks different than you expected, but you were made to be this little person’s mama. You can do this.

I am cheering you and your little one on. You are a warrior, Mama.

“Rabbi, who sinned, this man or his parents, that he was born blind?”

Why?

This is the first question people ask of God when something doesn’t go according to the plan. You lose a job. Your marriage falls apart. You lose a loved one. You receive a diagnosis you weren’t expecting. You lose a child. You can’t conceive a child. The list goes on.

We ask why. Why me? Why did this happen? What did I do to deserve this?

In John 9, Jesus answers that question for all of us. He and His disciples come upon a man blind from birth. The first question asked is “Rabbi, who sinned, this man or his parents, that he was born blind?” Immediately, this thought that all of our circumstances come out of decisions we make or our sins comes to question. Jesus answers simply, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” That it, y’all. That’s the point. God is working things together that His glory and goodness might be displayed.

I think when we focus on this “why,” we are shifting our focus onto self rather than our Creator. We are saying that we are better than our circumstances. This shouldn’t happen to me. Maybe someone else, but not me. We cheat ourselves in thinking that our circumstances come from how “good” of a person we are or what we have done for the Lord. It’s not about that. And that is not to say that striving to be like Jesus and be for His Kingdom is futile. But we do not do so wholeheartedly if our aim is for reward. And I think our motives come into light when we sit and ask, “why?” when things go wrong. It’s really saying, “Where is my reward?”

Focusing on why, takes our focus away from the true why, if that makes sense. I have had so many people look at us with pity and some have even said “I don’t know why this happens” or “I am sorry this happened to you/your son.” I am here to squash that method of thinking. My son is here just the way he is ON PURPOSE, FOR A PURPOSE. He is fearfully and wonderfully made in the image of his Creator ‘so that the works of God might be displayed in him.’

I will not ask God why Evan is the way he is. I know why. Evan was created for a purpose grander than we could have ever imagined for him. His life brings glory back to God. His struggles and his triumphs display God’s goodness and faithfulness. He has been created perfectly for his true purpose on this Earth. I have no doubt that Evan’s life and his story will bring people to Christ. It may have already done so. I know we have experienced more intimacy with the Lord than ever before through this past year. For that, I am eternally grateful.

The story in John 9 goes on to show Jesus spit in the dirt and rub it on the blind man’s eyes to give him his sight back. In this time, a blind beggar would most certainly have experienced people spitting in the dirt around him to show their contempt for him. So when Jesus chooses this way to heal him, I think it is significant. Our road to redemption is often messy. The hard things placed before us can shout the lie to us that we are not worthy. Jesus’s spit doesn’t say “you are not worthy,” his says, “I make you worthy.”

I challenge you (and myself) to choose to see His goodness in your circumstances. To stop asking “why me” and focus on Him. To stop thinking that doing good in this world will gain you favor and an easy life. To remember that faith doesn’t say “what if” it says, “even if.” To rest your heart in His truth rather than the lies your circumstances bring to the surface.

You are loved. You are chosen. You are worthy in His sight.

*Featured image credit goes to Ashley Powell Photography*