Learning the Language of Grief: Telling Your Twinless Twin About Their Twin

My new piece about grief posted at Hand to Hold today: 

"When you become a parent, you don’t expect that one of the lessons you’ll have to impart is that of how to grieve. Even though you know that your child will have their own pains, their own struggles, their own sense of groundlessness at times as they grow, it’s your hope that at least there will be a break, a reprieve, a pause before they have to learn how to navigate something so utterly difficult, a time where they can bask in unconditional love without the notion of pain. But sometimes that’s not the case."

To read more, click here. 

Navigating the Challenge of Trauma in Relationships: Partnerships in the NICU

"He's avoiding visiting the hospital", "he's shut down emotionally", "she seems so fragile, I don't want to burden her with any more stress", "she's hyper-paranoid about the baby, and won't let me take him/her around my family or friends even though I feel it's safe now", "it feels like he/she ignores me now that the baby is finally home", "we don't talk about the things we used to care about any more", "our relationship is uncomfortably different". 

All of these are quotes from parents with whom I've spoken about their babies' stays in the NICU. In fact, in conducting my initial research in creating NICU Healing and leading support groups, what I found most parents felt they needed was guidance in how to salvage their relationship from a circumstance that had brought enormous stress upon it. Marriage is a challenging and dynamic relationship-- ever-changing-- and the NICU, along with the stress that it brings, can throw what might be an already fragile partnership into a tailspin. 

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Studies have shown that the evidence of both depression and PTSD amongst NICU parents are almost equal between mothers and fathers, and occur at staggering rates of over 20%. However, the way that these challenges present themselves between the opposite sexes can be vastly different. Women tend to exhibit symptoms of traumatic stress during the initial weeks in the hospital, whilst men oftentimes don't show symptoms until well after the baby has been discharged home. While there are various theories regarding why this is so, research is showing that different ways of coping can have a profound effect on partnerships. Common knowledge has it that the divorce rate amongst NICU parents and especially of parents of children with special needs is very high. The challenge of facing this incredible trauma can prove to be overwhelming for relationships, and can result in further tragedy to an already difficult circumstance. 

What can you do? 

It's important to be aware that partnership issues while going through a highly stressful life event are common. Even though you may not know any other families personally who are going through the same things as you and your partner, try to remember that relationship challenges during and after the NICU are incredibly common, even long after discharge. You are not alone.

As such, reaching out for support from other parents can be really useful. Online support groups for both moms and dads can open up a world of understanding, particular to each of your own individual experiences. It's important to know that others in the same circumstance struggle with similar things, and that you're not an island. Others who have been through similar things can give suggestions about how to reconnect with each other, and be a shoulder to cry on when it seems your partner, in that moment, just can't.

Additionally, making a space for each partner to speak to their experience is crucial in facilitating healing for both members of the parent structure. Hence, if you feel that your partner hasn't had a chance to express his/her struggles with their experience, try to actively make a space for that. Ask questions, be curious. Although it's challenging with a baby in the hospital or, in the months thereafter, raising a medically-fragile infant, try to be mindful of making time to speak with each other, one on one, at least once a week. Sometimes that can look like chatting with each other before going to sleep at night, going on a walk with the baby where cell phone use is minimized, even working out a time when you can have a date night or a lunch alone (once you have trusted caregivers that can provide childcare). The trauma of going through the NICU oftentimes has the effect of changing an individual's perspective on life drastically, so in a sense, making this space for conversation is essentially making a space to get to know your partner in this new context, and developing understandings that will help you to be better able to support them when they are struggling. 

Another tip that can be useful for partners is to try and identify the parenting strengths of each other, rather than allowing alienation to set in when one partner has a hard time doing something specific. Although it's not always the case, it's sometimes challenging for fathers to witness their child on life support in the NICU. Some case studies have shown that fathers can feel as though they are "out of control" or "no help" while their baby is hospitalized (keep in mind this gender role can easily be reversed as well). They can feel like their efforts would best be spent going to work and/or supporting the mother, as opposed to participating in the daily rituals in the hospital like diaper changing, skin-to-skin, etc. Many dads (and oftentimes moms too!) report feeling scared of hurting their fragile charges, and need to be comforted/guided through the experience of providing cares for their child (especially first-time parents). Even though this circumstance can sometimes be baffling for a partner, should you find yourself within it, try not to let what might seem like avoidance cause damage to your relationship, and try to foster empathy. Encourage them. Stand beside them. All things considered, it is an incredible strength to be able to do what you can do when you're in the NICU and beyond, and giving your partner the understanding and empathy that you can see they are trying is a great way of establishing trust and acknowledging each other's strengths.

Finally, when things seem like they've gotten to a point at which it's difficult to imagine how to re-calibrate with your partner, don't be afraid to reach out for help. Our culture is often saturated with the expectation that couples should be able to thrive within even the most challenging of circumstances. Reaching out to a trusted professional can be a valuable way of making a space for healing together, and being able to witness each other get through this struggle. Grief is a common emotion associated with the NICU, and it doesn't only affect one member of a parenting partnership, it affects both. Finding support to guide you through this process, particularly together, can be invaluable in building a structure of teamwork that you may be able to revisit throughout your relationship.

 

The Silent Struggle: Mental Health and the NICU

In becoming parents, we oftentimes accept the silent assumptions that are made by our culture of what that's supposed to look like. An "ideal" parent, for example, seems to live in a blissful state of sacrifice, made happy by the sheer existence of their child, doing their best to take on their responsibilities according to whatever parenting technique may be in vogue at the time (see the book "Our Babies, Ourselves: How Biology and Culture Shape the Way We Parent" for some great writing on this subject).

Cracks in our ability to do that, made visible in mixed company or in the necessary public outings we sometimes have to make, can be harshly judged by strangers and other parents alike, as if our take on parenting is expected to be at top notch regardless of our surroundings or the context. Paradoxically, depending on your audience, different values will be upheld, and surprisingly, people oftentimes feel little need to censor their comments. 

The NICU parent, by virtue of their baby's traumatic entrance to the world, has a unique set of expectations placed upon them, in addition to a unique set of stresses. I remember when my son had terrible colic symptoms after discharge, which caused him to cry for numerous hours a day every day for months, of feeling like I wasn't grateful enough to have him home, that I was taking his health for granted, that I shouldn't feel depressed or anxious because, after all, he was out of the NICU. What else could possibly be as serious as that?  The depression, the haunting memories of the NICU that often flared up over the course of his entire first year-- how could I let those things overshadow the fact that he survived, that he was with me, that at any moment I could hug him? The fact that we were on quarantine to prevent infection, keeping us away from any kind of meetup groups or any kind of regular support from other parents didn't help matters much.  The guilt and shame that had accompanied his NICU stay carried on throughout his first year, in the form of my own expectation for myself that I should be happy and grateful, that struggles with emotional challenges were selfish or pointless. 

The NICU parent has to contend with the very real effects of trauma long after the discharge paperwork for their baby is signed. It's suspected that a staggering number, between 21-23%, of NICU parents have symptoms of PTSD. It's been found that amongst NICU dads, late-onset PTSD is common, cropping up sometimes as long as 6 months after the baby is home from the hospital (as a result, PTSD amongst NICU dads is underreported and difficult to measure). For moms and dads, untreated emotional trauma can wreak havoc on their ability to connect with their child or with each other well into the first few years of their child's life, and sometimes beyond. The very harsh experience of witnessing your child fight for their life can have profound influence on one's emotional health, and too often, no space is made for parents to grieve the experience, to put a name to what they lost, and to integrate that into their lives. Compounding that experience is the fact that NICU parents also have to deal with the very real threat that their child may have disabilities or health issues related to their prematurity or the medical issues that led to their NICU stay. 

As such, the NICU parent is not only held up to the expectation to be blissfully happy with their circumstances (sometimes, as it was in my case, by themselves), but they're contending with very serious, very real issues due to the fact that they were faced with an unpredictable, challenging, and in some ways emotionally devastating circumstance. With an implicit cultural assumption that parenting should be a joyous thing, too often we are silenced, and prevented from speaking to the struggles we may be contending with privately, afraid of the dark shadow that something like "mental health" might cast over our experiences. 

In resisting this silence, it becomes evident how powerful it can be for NICU parents (and parents in general!) to speak to the struggles they've had in parenting after discharge, to give a voice for others who may be too frightened to express it. In honor of Mental Health Awareness week, I'd like to make this a safe space to share your struggles as a parent, where you've gotten to with it, and if there has been any thing that's given you reprieve. Have you connected with other parents yet? How have you healed from your NICU experience? How would you like to see things change for others struggling with the same thing? 

 

4 Things About Mindfulness Anyone Can Learn from a NICU Parent

The travails of a parent with a baby in the NICU are scarcely describable in language. After what is oftentimes a traumatic birth experience or high-risk pregnancy, parents are thrust into a fast-paced medical world, bamboozled with jargon, major life decisions, separation from their babies, trauma, frequent traveling back and forth to the hospital, interaction with a multitude of strangers regarding the care and survival of their babies, and, sometimes, the isolation that comes with going through an experience quite unfathomable to most of their friends and family. Even if their baby survives the NICU and comes out unharmed, parents are often left to cope with the grief and loss that comes with having their lives upended, all that is recognizable about it stripped away, only the bare bones of their beliefs left apparent.

The experience, suffice it to say, is not something that can be wrapped up in a bow and sold as something that is “inspiring” or positive. It is, however, oftentimes a unique opportunity for parents to discover what it is about themselves that can withstand a traumatic experience, as well as what it is that they will take a stand for in moving forward. Researchers are finding that it's common for individuals who have been through a traumatic experience to find things about themselves that maybe weren't apparent before: appreciations, values, understandings, goals. In discovering these things, individuals can in a sense "reconstruct" themselves after trauma, organizing their lives in a way that honors these discoveries, feels meaningful, and that appreciates the difficulties that they've experienced. 

In going through our own experience and in reaching out to other parents who have gone through it as well, I've found there are some shifts that have commonly taken place among NICU parents. Here are a few incredible things that the circumstance imparts to many that go through it, and that can benefit anyone looking to find mindfulness in their lives: 

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1.) Never underestimate the miracle of breath. There is something to be said about seeing your baby struggle to take a breath in the NICU. It washes away all cares about minor matters: things like whether you’re having a boy or a girl, whether your baby is bigger, smarter, more advanced or more beautiful than others, whether you have the perfect products to decorate their room, whether you seem to be the perfect parent or whether you're meeting the unspoken expectations of the people around you. The phenomenon of losing your care for things that really don’t matter in the long run can persist for NICU parents, and all that other stuff? In the context of breath? They lose their importance. Letting those things go can give you the ability to see, embrace and enjoy the “little things” we oftentimes unintentionally take for granted. And it’s breathtaking to witness when you’re able to appreciate it.

2.) Planning for the future doesn’t serve you very well when you’re in the moment. Going through a crisis, one can’t predict the next hour, much less the next week, of their lives. In our day to day life, when things feel simpler, or we feel more “in control”, it’s easy to lose sight of the fact that the hopes and fears of the future that we hold oftentimes mean nothing in the face of what actually might happen. Letting those go and making a deliberate effort to be present can have a profoundly positive influence on your life. Embracing the unexpected can highlight the beautiful imperfections you may not have noticed in attempting to follow a plan, and can soften the blow of a challenge or disappointment.

3.)  This is water. If you’ve never heard the David Foster Wallace speech, I recommend you listen now. In it, he talks about the importance of setting aside the single-minded perspective most of us hold, of seeing things as how they affect us as opposed to deliberately creating a space for empathy, even in the most banal and frustrating of circumstances. I remember on one of the more terrible trips my husband and I took to the NICU, when William's health had taken a turn for the worst, of driving frantically to the hospital, weaving through traffic to get there as soon as possible, terrified that every moment we were absent was one we had lost forever. But, to everyone else, we likely looked like road-ragers. After that experience, I realized that the anger or annoyance that sometimes sprouts up when you’re dealing with the actions of anonymous others? It’s not worth it, because you never know what someone might be going through in that moment. Practice forgiveness; practice patience. Try to sit with the idea that all of us contend with our own struggles, our missteps and mistakes may just be indicative of the amount of pain from which we suffer. 

4.) Love is stronger than you think. It’s hard to fathom just how strong you are until you are forced into it. NICU parents are swept up into a world that’s as painful and anxiety-provoking as it is miraculous to see their tiny charges thrive. In going through it, one realizes that the love we have for each other is one of the only things clearly apparent, even in the most dire of circumstances. Many parents never could have imagined that they’d be able to manage a life in which their baby’s basic survival could be called into question on a daily basis for weeks on end; I certainly never thought that I could. But in the moment where you think you could lose everything, suddenly what you DO have becomes blatantly apparent, and, surprisingly, you can find beauty, strength, and comfort in even the simplest of expressions of love. Hold onto it as hard as you can, because the magnitude of that love will help you get through almost anything at all. 

I'm curious as to other realizations, values, beliefs or appreciations that other NICU parents may have discovered through their journey? Please feel free to share in the comments section below.

Making Memories During Difficult Times: Remembering as a Way of Coping in the NICU

During the first few days of my sons' lives, I was so sad, so overwhelmed, my life so upended and my anxiety level so high, I didn't want to remember it. I remember distinctly thinking, "I don't want to remember any of this at all". At the time my logic was, "why would I want to remember seeing my boys in pain, hooked up to monitors and fighting for their lives? Why would I want to remember what it feels like during what seems to be the worst days of my life?"

Phone photo of Elliott on the ventilator.

Phone photo of Elliott on the ventilator.

It wasn't until after we got home from the NICU and I made connections with other NICU parents that I realized this was a somewhat common experience, however guilty and shameful it made me feel while we were still in the hospital. Even if parents didn't necessarily feel they didn't want to remember the experiences at hand, many are so overwhelmed by the sudden changes in their lives that they don't have the presence of mind to even think of things like taking photos.

What saved me from having a huge gap in my visually-documented memory were a few experienced, emotionally intelligent nurses who made sure that plenty of photos were taken, even when William's health failed, and who further encouraged us throughout Elliott's stay to document all of his little milestones, as painful as they might have been for us. Because of these incredible individuals, our family has pictures of the good and the bad, the horrific and the beautiful, and of each difficult step forward that we took together, and some of the steps backward.

The NICU can be stunning in its complete takeover of what most parents once thought would be a predictable, beautiful experience: the birth of their baby. The first milestones you witness in the NICU are often those that are in their own ways tragic, if only because they are necessary. Getting off of the oscillating vent, being allowed to hold your baby, nippling, being big enough to wear clothing, transitioning from the isolette. These things are very different than what most of us imagined would be the first milestones; things like smiling, reaching for toys, rolling over, milestones that will likely be many months away for a baby who still has weeks before his/her actual due date or who is struggling with medical issues that prevent them from being able to focus on those actions.

Current trauma research shows that in the healing of trauma, it is important for a person to have an integrated, autobiographical understanding of just what happened. In fact, it's common in all kinds of trauma for individuals to have a response similar to what mine was initially: to want to forget, to deliberately disengage from the experiences at hand, to "shut-down" so to speak. However, research is showing that it's just the opposite that will help us to process trauma in a meaningful way. In thinking about this, I realized that creating a coherent, autobiographical understanding of the NICU had another benefit: helping me to someday explain to Elliott what his first few weeks and months were like, the people that loved him, and to show him the images of his beautiful brother.

Here are a few tips for those new to the NICU, who may be struggling with the exhaustion and stress that the experience brings:

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1. Take pictures, a lot of them. As hard as it is to see your baby hooked up to wires, bili lights, monitors, and in an isolette, some day, most or all of these things will be a remnant of the past. This post from Hand To Hold is a wonderful tutorial about artful ways to take photos in the NICU, written by a professional photographer and preemie mom. Even in a circumstance where you may be coping with loss (as we did), take as many photos as you can with your baby. As heartrending as it may be in the moment, some day the photos you take will become precious.

2. Get a lovey for your baby to do size comparison pictures each month. Some NICUs provide babies with loveys, or small stuffed animals to comfort them. Taking a picture to document your baby's growth each month will astound you due to what appears to be astronomical growth (and ultimately for micropreemies, really is!). This is an incredible way to watch your baby grow at their own pace, independently of any charts, and to see how far they've come. It's also a great practice to continue after your baby's discharge from the hospital and through the first year.

This small poster from EverytinyThing has space on its balloons for each member of your baby's care team to write their name.

This small poster from EverytinyThing has space on its balloons for each member of your baby's care team to write their name.

3.  Take pictures with your baby's primary nurses, doctors and therapists. Get one of the fantastic products over at EverytinyThing so that your baby's team can write their name on your "My NICU Family" print. The people you see every day at the NICU may seem like they are unforgettable, but years later it can be difficult to remember each of your baby's caregivers and put a name to the individuals that had such a profound daily impact on your family's lives. The isolette decorations that Trish sells can also brighten up your baby's isolette and make the space less daunting.

4. Keep a journal. Journaling not only documents each of the things that happen in your day to day NICU life, but it can also serve the important purpose of making you feel better. Journals can help you express and process your emotional response to different circumstances, if simply by providing a space for you to "get it out". I'd like to emphasize that it's important for dads to write about their experience as well. Again, journals not only serve the purpose of providing a distinct memory of the experience for parents, but can also be something of value in telling the NICU story to your baby when they get older, or in sharing with friends and family about what happened. Personally, in revisiting my journal from my babies' NICU stays, I realize just how strong we actually were, and how easy it is to forget what a struggle it once was.

5.  When in doubt, ask your primary nurses for suggestions. Through their experience, nurses have a good sense of the types of things a family can do to generate memories during difficult times. One thing our nurses did for us was take prints of both of our boys' feet and hands (there are some creative ways of doing this that are worth checking out as well!). They also took pictures or wrote notes each time Elliott had a milestone when we weren't there (I still have the note a nurse wrote when he completed his car seat test in the middle of the night!). Additionally, collaborate with your nurses about the things you'd like to have done in a specific way (for example, the first outfit you'd like your baby to wear and letting the nurses know you would like to be there for it).

Many of the practices I took up in the NICU in order to create memories of the circumstance have ended up becoming valuable to me in life after the NICU, particularly journaling. Even though some of these practices may be difficult to fathom in a challenging moment, or may feel unnatural just due to the fact that you've never done them before, have faith that many of them will prove their worth and hold their worth long after your baby's NICU stay is over.

Stay tuned~ a giveaway of EverytinyThing's "My NICU Family" print is coming to NICU Healing's Facebook page soon! Follow our Facebook page to receive updates! 

 

Investigating the Practices of Trauma

In a moment of crisis, the human mind (and body) manifests ways of coping that optimize our chances of survival. In fact, crisis, or trauma, oftentimes prompts our brain circuitry to circumvent the typical ways in which it operates so that we respond quickly and efficiently, leaving much of the process invisible to the conscious mind. Due to its invisibility, the brain's response to trauma leaves a lot of mystery for researchers to unravel; it can be even more difficult to navigate for an individual trying to heal from a traumatic experience. How is it then, that someone can deduce whether the trauma they've experienced has had an impact that's more than what might be considered "typical", or determine whether they might need more help? 

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It's sometimes useful to examine "mental health" issues outside of the traditional context assigned them by the world of mainstream psychology. Instead of imagining that trauma, depression, or crisis are a part of you, or that they've somehow become a part of your personality, try to tease out the practices and effects of these notions. In conducting such an investigation, you may be able to find what does and doesn't work for you or your family, and determine whether these practices or effects have become so significant that it might be useful to integrate the help of a professional. 

What does the trauma have you doing? Do you have practices or beliefs specific to trauma that are active in your life? What do they look like? For example, one thing my trauma had me doing was researching, frantically, trying to figure out the various signs and signals that I thought might indicate there was something "wrong" with my son for the entire first year he was home. One sign or another would have me feeling paranoid, anxious, staying up at night, and at the same time paralyzed by fear. When our pediatrician, the specialists at our followup clinic, and various members of our family told me that there was nothing to worry about, it fell upon deaf ears. Upon examination, I realized that I had developed this practice when Elliott was still in the NICU, when it actually served a purpose: at that point, noticing discrete signs or signals that he might have difficulty with something or need more help in some arena gave me the ability to ask for guidance from the various medical professionals helping him on a daily basis. Panicking about things when he was an older baby, on the other hand, didn't serve much of a purpose except to manifest difficulty in feeling attachment with him, promote exhaustion, and create anxiety that tainted anything we did with a level of unease that didn't feel right.

The practices of trauma are wide and varied, and can range from things like not being able to sleep at night due to perseverative thoughts or fears, drinking to escape memories of the events that occurred, unrelenting fear that a similar event will occur again, or the inability to imagine a life without these fears. Some effects of trauma are more difficult to put your finger on, as they are physiological. They can include things like cold sweats, unpredictable crying or outbursts of anger, or simply feeling "outside of yourself" when in an environment that triggers memories of the crisis. Other practices of trauma may not be quite so harmful, and are just as useful to notice. These practices can include things like noticing milestones unique to your NICU baby, letting go of the unrealistic expectations society has of parents, accepting the unpredictability of the day-to-day by practicing mindfulness, or reaching out to help others going through a similar circumstance. 

What promotes these practices? It can help to look at the various individuals, belief systems or values in your community that encourage the practices/effects of trauma you see active in your life, both the good and the bad. How do these individuals or institutions promote it?

To go back to the personal example I gave above, I realized that I had a deeply ingrained notion of what I now like to refer to as "the milestone police" (thank you for the terminology, online NICU support community!). Based on the books that I had read, I had unconsciously developed a very strong and particular sense of what I thought child development should look like. Because I held that notion much higher than my own intuition, I fell into a feedback loop in which everything seemed like it was somehow wrong. This was compounded by the fact that for 88 days while Elliott was in the NICU, I had to become accustomed to the fact that every day, something could very well go wrong, very easily and very quickly. In order to survive the circumstance, I had to get used to expecting the unexpected. Learning to let go of those shoulds and those fears, regardless of Elliott's outcome, gave me the ability to at least be present in the moment with him, and to focus on the things that I could do that were useful as opposed to exhausting (keep in mind, this is not to say that if you have a sense that something is awry with your baby that you should not reach out to your pediatrician or a specialist-- this example is an example, and not meant to be thought of as a replacement for medical or psychological advice).

Other examples of cultural constructs that promote the effects of trauma could be things like the isolation of going through a circumstance that no one in your community has ever spoken of or, potentially, experienced, which then can make your fears feel all the more horrifying to face. It can be "Dr. Google", or the practice of googling things and finding terrifying information that can send you into a tailspin of anxiety. It can be your family's support in your creation of a NICU journal or their curiosity about hearing your story, that encourages your ability to speak up about what you've been through and integrate it into your family's biography. 

If you carefully examine the practices in which you participate, you will oftentimes find that people or belief systems play a role in their existence. It helps to know what those are, and to cultivate the positive influences, and minimize, or at least acknowledge, the negative to the best of your ability. 

Are these practices of trauma ok with you? Take a look at the various practices/effects that you've found operating in your life and do a brief analysis. Are these things working for you? Are they working for your family? Your partnership?

As I mentioned above, sometimes the practices of trauma serve an important purpose at one point in your life (e.g. the NICU), but later, take away from your experience of things or prevent you from enjoying life in the way you want. Do you feel empowered to change these practices on your own, or could you use the assistance of another person in moving forward?

It can sometimes be very difficult to articulate the practices and effects of trauma, in which case it can help to have assistance in identifying what's happening and figuring out how to go on. Sometimes, the practices, effects or beliefs that you've developed can be so vast or overshadowing that it feels impossible to change them on your own, in which case, it may be useful to find an ally. On the other hand, sometimes a deep examination of the circumstances can empower you to find a path that works for you and your family on your own. Either way, making a space to examine the effects and practices that a crisis may have inspired in your life is a powerful start in moving towards healing.

 

For further reading: