A PAINFUL PRESENCE

By: Haley Stricker

I am grieving some loss in my life right now, and I’m hurting. I’m hurting and it’s okay to hurt. I’m reminded in this hurt that pain has the ability to either connect us or reveal the layers forming between us and others. I’m also reminded why therapy exists, and why the power of therapy is really the power of presence.

On this type of presence, Henry Nouwen says, “When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain.”

The ministry of presence is often a silent one. It doesn’t take many words or thoughts or even prayers. It doesn’t ask us to know the answers or cures. It asks of us our attunement, our sense of being with rather than doing or fixing or helping.

He goes on to say,

“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”

When we hurt, we are longing for the type of connection that says, “I see you - I see you and I’m not afraid of your pain. I do not hide from your pain but I willingly enter into it and grieve with you.”

This is honestly excruciating. To enter into another’s pain asks us to tap into our own and accept its place in our story. It asks us to feel with another person when many of us have chosen to numb our own emotions. And this is hard work. But we cannot connect with others if we are unable to connect with ourselves. We tend to find ways to minimize our own discomfort around emotions through offering suggestions and advice.

And this makes sense. Often our own painful experiences left us feeling powerless and having something to offer provides a sense of control. Advice allows us to feel stable in the ambiguity of pain.

But as I sit in my own grief, I’m learning that solutions may help me breathe momentarily - but they do not heal the parts of me that are wounded.

C.S. Lewis once prayed, “I know now, Lord, why you utter no answer. You are yourself the answer. Before your face questions die away. What other answer would suffice?”

Healing is not the absence of pain but the presence of God in the pit of pain with us. I say pit because grief often feels like a dark and deep well, and it would take too much energy and effort to climb out of that well. And so healing does not ask me to climb out. I can stay and His presence with me is the healing even in the pain. And as we dare to be present with others in their pain, we are doing the work of embodied healing. But this requires our own work. We cannot be present with others if we are incapable of being present with ourselves. We cannot honor others' sadness if we shame ourselves for being sad. We cannot listen without fixing if we must control out of our anxiety.

I often describe the role of a therapist as that of a container. We hold all of the fears, emotions, doubts, losses, and hurts with our clients - not in an effort to take the pain away but sit in it and say, "You're not alone. Even if just for this hour, I am holding this with you." And there is this brief period when the pain is slightly more tolerable - not because it's gone but because there is someone else holding the weight too.

Ministry of presence is a lot like that. It is not pulling others out of their pit but entering into the pit and sitting there with them. The pit is messy because it takes emotional energy to sit there and it brings up things in us that maybe we have buried. But I think our families, friendships, churches, and communities are aching for more of this type of ministry. Most of us are walking around with deep wounds, and if we're honest what we are really longing for is someone to see us in those hurts and choose to sit in them with us. It's a painful kind of presence, but this is the stuff of true connection. And I think its the stuff of true healing too.

HOW TO HELP A NICU FAMILY: DO'S AND DON'TS

N. I. C. U. Four unassuming letters that put together hold a lot of weight. 

Experiencing a NICU stay for any reason is traumatic. 6 day. 6 weeks. 6 months. The time frame doesn’t matter. It still shakes you. And, even after it ends, it still likes to creep up from time to time and remind you of what you lost, what you grieved.

My only daughter was born 6 weeks early because my water had ruptured. As someone who walked through a 31-day stay in the NICU, I have been on the side of helplessness. The side of vulnerability and need. 

Oftentimes it’s hard to know how to help families walking through this reality.

Do I send flowers?
Should I visit after birth?
Should I cook a meal or send a gift card? 

I wanted to offer a few “do’s and don’ts” for anyone wondering how they can be helpful during such a painful season. 

Before I share, please keep these things in mind:

• Every mom is different.

• Every reason for a NICU stay is different.

• Every hospital is different.

• Every birth experience is different.

• And, every baby is different.

I can only speak from my own experience, and from what I’ve learned from others who walked alongside us.

WHAT TO ASK

DON’T ask when they’re going home. 
Just don’t. This is probably the most-asked question, yet it’s the one parents have the least ability to answer. A NICU stay is a rollercoaster experience. It’s a two-steps-forward-one-step-back kind of process. Good news one day doesn’t necessarily mean one step closer to going home. 

DO ask for updates from the doctor. 
While this journey includes many unknowns, doctors make their rounds daily and update the patients’ charts. These reports include any changes they will make and a progress report of sorts. Fielding questions about a discharge timeframe can be a painful reminder that you still don’t know when you will be able to bring your baby home. Instead, consider asking about updates from their neonatologists, nurses and PT/OT therapists. 

WHAT TO SAY (OR NOT SAY)

DON’T tell them everything will be okay. 
This is really the last thing any NICU parent wants to hear. A comment like this, while meant to encourage and lift spirits, can do the exact opposite. NICU parents are grieving the loss of all they had expected and imagined surrounding the birth of their child. And, truthfully, in that moment, not much feels “okay.” 

DO sit with them in their pain.
When we walk through difficult seasons, we feel so out of control. Sometimes what we actually need is for someone to come alongside us and say, “Wow, this must be really hard.” Encouraging words are wonderful and needed. But, there is something truly beautiful about meeting someone in their pain and letting them know that you see them. 

WHEN TO VISIT

DON’T show up unannounced. 
Days spent in the NICU are long, and hard, and emotional. Some days are better than others. If a nurse notifies a family that they have an unexpected visitor in the lobby, they may be perfectly fine and ready to chat. But they may not. The baby might be eating or fussy. The mother might be pumping or emotional. If they’re lucky, they may be trying to breastfeed or having skin-to-skin time. 

DO ask before you visit. 
Sending a quick text or making a phone call to ask about a good time to visit goes a long way. The parents know their baby’s schedule, as well as the hospital visiting hours. They’ll be able to let you know when it’s a good time to visit. And, don’t be surprised if you get a last-minute text saying “today isn’t a good day.” Good days can turn into not-good days in an instant. Be understanding and ready to reschedule. 

HOW TO HELP

DON’T say, “Let me know if you need anything.” 
At first read, this may seem like more of a “do” than a “don’t.” I think this is something we’ve gotten used to saying a lot–I am guilty of saying this, too. And, while we mean well when we say it, how often do we actually get reached out to? Not a lot, right? Truthfully, NICU families are in endless need. As someone who walked through this, I had to learn to be incredibly vulnerable in asking for help and in taking up friends and family on their offers. But, the most helpful reach-outs were from people who asked about helping in a tangible way.

DO serve them in specific and tangible way.
Purchase a gift card to a restaurant close to the hospital. Offer to cut their grass, or better yet, just go do it. Tell them you’d like to bring them a meal and ask which night works best. Ask if there’s anything you can pick up for them from the drug store. When you’re in the NICU, life is far from normal. So, normal and simple tasks get put on the back burner. It’s a lot harder to find time for laundry and lawn care. It’s more difficult to grocery shop and cook. Reaching out to help in a specific way is truly appreciated.

Having a baby stay in the NICU is something that never would have crossed our minds, until it became our reality. We were thrown into it with no time to plan or prepare (not that you can ever really prepare for that).

I hope this article sheds a little light into life in the NICU and what might be helpful to a family walking this incredibly difficult journey.

31 DAYS: MY NICU JOURNEY

September is Neonatal Intensive Care (NICU) Awareness Month. And how fitting since September 7, 2018 is the date we brought our daughter home after spending 31 days in the NICU.

I’ve had a desire to write about our NICU experience for some time, but it quickly turned from a desire to a chore as I realized how nearly impossible it is to put our 31-day journey into words.

LET’S START AT THE BEGINNING

At 33 weeks pregnant, I began leaking a small amount of fluid every day. Although alarming, I wasn’t in total panic as the leaks were pretty inconsistent. On August 3, I was at a work retreat when many thoughts invaded my brain:

• You are now 34 weeks pregnant.

• When is the last time you felt the baby move?

• You are still leaking every day.

I decided that was enough to make me call my OB and request to move up my next check-up appointment. However, after a few tearful phone calls, I was told I needed to go to the Emergency Room to get my fluid checked. While waiting for our test results, my husband and I began talking out our dinner plans, certain that everything would be fine.

That’s when our roller coaster of emotions began as we were told I was leaking amniotic fluid from a water bag tear, and that we could not leave the hospital until the baby was born.

Cue the shock. Cue the nerves. Cue the tears.

So, we were admitted to Labor & Delivery.

I was told I had to give birth in the OR.
I was told our daughter would be a preemie.
I was told she would spend some time in the NICU.

And I figured, “She’s a preemie – she’ll just be extra tiny and cute!”
I figured, “She’ll just need to go to the NICU for a few hours or a few days so they can keep an eye on her.”

We waited to see if I would go into labor on my own but to decrease the risk of infection, I had to be induced 2 days later and our sweet Charlotte Elise was born on Monday, August 6.

What I didn’t understand was the great impact that giving birth early has on a baby. And, although Charlotte was a wonderful birth weight for 34 weeks gestation (5lbs 14oz), she had a lot of internal growing to do.

Thus began our 31-day journey in the NICU from birth to the day we were discharged to go home.

WHAT I LEARNED ALONG THE WAY

1. Mother/Baby recovery is extra emotional. After 23 hours of labor, all I could think about was eating a cheeseburger. But, once my belly was full, I was very aware that my arms weren’t. My baby was not with me. Having a photograph of my baby delivered by the NICU social worker was just not the same. I couldn’t help but feel the sting of jealousy as I heard mothers and babies in the surrounding rooms. Mothers who were able to do an hour of skin-to-skin with their babies after birth. Mothers who were able to solely breastfeed. Mothers who got to comfort their babies and change their diapers. Mothers who would be able to bring their baby home after 2 days. I had always pictured post-baby recovery as a time of celebration. Balloons, excitement, lots of visitors, a door wreath proudly telling the world we had a baby girl. But, in all honesty, it didn’t feel like a time to be cheerful. Especially knowing that in less than 48 hours, I could be leaving the hospital without my baby.

2. It’s okay to grieve the loss of all your plans. I am a natural planner, but when it comes to pregnancy and birth, I think most women are. We dream about announcing the pregnancy, gender reveals and about what our babies will look like. We make lists of baby names and nursery ideas. We join mom groups and schedule classes. We ask all the questions. We pin all the things. Combine the grief of losing your dreams and plans with postpartum hormones – and yes, you guessed it, I was a mess. I didn’t imagine my daughter covered in cables. I never thought I’d have to sign-in to “visit” my baby in the hospital. I didn’t think I’d have to ask a nurse’s permission to hold my baby. It wasn’t my plan to go through postpartum recovery sitting on a hospital couch every day. I never planned to give her formula or take her one-month picture in the hospital. To watch her get food through a feeding tube or cry as I told her “goodnight” before leaving. To spend weeks of my maternity leave at the hospital. I grieved every day as I consistently had to let go of the hopes and dreams I had surrounding my labor, birth and recovery.

3. No amount of preparation can ready you for the NICU journey. People often refer to it as a “journey” or a “roller coaster” because it is just that. Until you’ve gone through it, it’s something that has probably never crossed your mind. And, there is no way to properly prepare. It is absolutely, 100% a waiting game each day as you anticipate the neonatologist’s morning rounds for an update on your baby. Nothing is sure. Nothing is certain. And progression can turn to regression in an instant. It is a two-steps-forward-one-step-back sort of journey – this makes it hard to celebrate milestones, fearing that you’ll be back where you started tomorrow.

4. It will feel never-ending. Time has a way of standing still in the NICU. The daily routine becomes monotonous. Wake up, pack for the hospital, park, walk, sign-in, get temperature taken, wash hands, sit with your baby for hours, say goodbye – repeat. You’ll wonder if this season will ever end. You’ll wake up every day thinking, “Is today the day we can go home for good?” Never has a month gone by so slowly.

5. The medical professionals become your family. Nurses. Neonatologists. Nurse techs. Physical therapists. Occupational therapists. Lactation consultants. They walk this journey every single day. They hold your pain with you. They care for your little one as their own. They celebrate milestones and listen on hard days. They are your biggest cheerleaders. They are a light walking alongside you during a dark, emotional time. The medical professionals at the Woman’s Hospital NICU were absolutely incredible. When we did have to leave our baby girl, we knew she was in the best hands.

6. God was in our midst. I had Zephaniah 3:17 written on my hand during labor. “The Lord your God is in your midst.” I recited it to myself over and over until she was born. Little did I know I would need that reminder much more in the days to come. I experienced many negative emotions in the NICU: anger, hurt, confusion, jealousy, heartbreak, disappointment. But, the beautiful part is that God was in the middle of it all. He heard every prayer. He held every tear. From the heart-wrenching visits to the NICU to the joyous day we brought her home – He never left our side. He drew near to us and made Himself known to us in so many ways.

Now, 3 weeks removed, it all feels like a dream. Did that really happen to us?

But, we are home with our healthy, beautiful daughter, and we couldn’t be happier. I’ve since been able to slowly process and reflect on our experience and count the blessings. Although it was without a doubt the hardest 31 days of our lives, I see God’s hand in it all. I see the blessings. I see His faithfulness. I see the Gospel.

QUESTIONS ANSWERED

Here are a few questions we were asked about our time in the NICU:

As a nurse, what could we have done better to make you feel more comfortable?
Honestly, the nurses were the best part about the NICU. They were warm and welcoming, informative and helpful. Charlotte had 30+ nurses during her stay at the hospital and we were always met with a smile. If anything, I would encourage NICU nurses to let parents know the role they can play early on. I didn’t know my place with Charlotte as her mom in the beginning. I felt like I had to take a back seat to the medical professionals. Eventually a few nurses spoke up, saying things like, “Let us know what you’d like us to do, you’re her mom,” or “You can change her and take her temperature before every feeding.” Comments like this helped tremendously and made me feel more like a mother and less like a visitor.

How do they handle breastfeeding, pumping and feeding baby?
Each baby in the NICU has different needs and medical goals to meet, so I can only speak from my experience. Charlotte’s goals were to gain weight, maintain her temperature on her own and take all her bottles. Because the weight gain would help her to maintain her temperature and take all her bottles, they had to make sure she got enough volume at each feed. So, I was able to try breastfeeding once per day. The nurses and lactation consultants were incredibly encouraging and made me feel so comfortable. Charlotte was given formula after birth until my milk came in, but when I was producing enough, they were happy to take what I was pumping to make her bottles. They really do support you and cheer you on in the process.

What was the best way for someone to encourage you or be there for you?
There is no way to fully understand what someone is going through in the NICU unless you have gone through it yourself. But, there are many ways to serve those walking through it. After being on the receiving end, my advice is to reach out and act. A text message or phone call asking what they need is both practical and helpful. But, if they don’t have an answer - ACT. Sometimes it’s hard to verbalize your need(s) when you’re in a painful situation. So, oftentimes the surprise blessings were the best because we didn’t really know what we needed. Every day, we felt so loved by our friends and family. From the neighbor who unexpectedly cut our yard to the baby gift dropped off at our doorstep. From the money that showed up in our Venmo account to the errands people were able to run for us. From the gift cards given to get food on-the-go to coming home to a clean house. No act of kindness went unnoticed. And, just knowing people were praying for us and checking in on us was huge a blessing.

“The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” Zephaniah 3:17