A Different Journey:
GRIEVING AND COPING AFTER THE PREMATURE BIRTH OF YOUR BABY
For many preemie parents, it is shocking to them how deeply distressed they are by the early birth of their baby or babies. Feelings of sadness, regret, anger, powerlessness, guilt and anxiety can feel overwhelmingly intense. As a result, many parents worry that there is something wrong with them-- particularly if thir child survives, and particularly if their child's health and development is fairly good. When you have so much to be thankful for, why do you feel so bad? Ironically, the better a child does, the more the parents may worry about their inability to cope with the "prematurity thing".
Many preemie parents yearn for emotional support and information about their painful, confusing and overwhelming experiences of delivering too early and having a baby in the NICU. A key element of support is validating the parents' sense of loss, and helping parents understand that grief is at the emotional core of this experience. Love and joy and hope are also at the emotional core, but in order to get a handle on the accompanying pain, parents need to see that grief is there too. Just by knowing and accepting this, parents can begin to figure out how to deal with the wide range and complexity of their feelings. More specifically, it can be helpful and reassuring for parents to
1. Acknowledge that having a preemie can be so hard;
2. Recognize the specific losses associated with premature birth;
3. Learn about grief and ways to cope;
4. See what it takes to come to terms and get on with life.
The most pressing concern for many parents is relevant to this last point: "How can I come to terms with my child's premature birth? How can I move on?" After all, when you're hurting, foremost in your mind is "When will I feel better?"
But in order to come to terms and move forward, you must first be able to grieve.
In order to grieve, you must recognize that you've lost something, and it helps to identify exactly what you've lost.
And in order to recognize and identify your losses, you must feel that your experiences are worthy of such attention. In other words, you must acknowledge that "Yes, this can be so very hard and no wonder I feel so bad sometimes."
When you can acknowledge, "This is truly difficult", then you can
recognize your losses,
grieve,
come to terms, and eventually, in some fashion,
move forward.
So, let's start at the beginning, with this acknowledgment:
Having a premature baby is very, very difficult. Your world is turned upside down. If you've had little time to prepare, you may have no idea about what to expect and you may get little support from your friends and relatives--or even health care providers. Most important, a tiny baby who you love more than anything is very sick, and you may be told that not even the docs know if he or she will survive--or eventually be normal and healthy. If you are wondering whether your intense and painful reactions to your baby's birth are "justified," try sitting down and making a list of all the things that have been easy. And you will probably find that the list is practically nonexistent. Here's another way to think about life with a baby in the NICU:
Whenever you brush your teeth, you're overachieving.
Even after your family is discharged from the NICU, parenting a preemie is challenging. Above and beyond regular parenting, you have extra worries and duties concerning germs, illness, development, therapy, feeding, growth, interaction, fussiness, hypersensitivities, and possible or actual disabilities. In short, you must let go of many of your preconceived notions about parenthood and learn to become a different kind of parent to a different kind of child. And here's another fact of life:
Particularly in the early years, every time you floss, you deserve a gold medal.
So now that you can acknowledge the difficulties, let's recognize some losses.
There are many layers of loss associated with having a premature baby.
Much of what you've lost are opportunities and experiences you had looked forward to ever since you found out you were pregnant.
Your plans for the last trimester of your pregnancy and the labor and delivery come unraveled as the situation turns into a crisis.
Your dreams about meeting your baby, making eye contact, nursing, cuddling, and showing off to admiring friends and relatives--these all dissolve into the realities of a critically ill newborn who must be kept away from you and in the care of strangers in order to survive.
After recovering from delivery, you must leave the hospital with empty arms and aching breasts.
Friends and relatives are usually ignorant about what your baby must go through, and are certainly in the dark about what this is like for you.
And this is just in the beginning--there are many more losses that accumulate over the weeks and months. Even holidays, special occasions or rites of passage can be painful as they aren't turning out the way you had imagined many months before.
Whatever your situation-- even if your baby survives, even if the baby is healthy and developing normally, and especially if there are continuing medical or developmental problems, or if your baby dies, you have a long list of losses, big & small, that you can acknowledge.
When you can recognize what you've lost, you can give yourself permission to grieve. Grieving is what enables you to come to terms with painful experiences.
Because grief is so painful to endure, some people believe that grieving is something bad to be avoided or something to be gotten over as quickly as possible. But grief isn't a problem to be solved--it's a process that unfolds.
Grief also isn't something you can experience in a neat progression of stages. At any time, you can experience a range of painful, sometimes bewildering feelings. Remember that grief is a fluid experience of
sadness, anger, guilt, regrets, and failure,
longing, fear, disbelief, and emptiness,
preoccupation, confusion, sleeplessness,
fatigue, anxiety, irritability, hopelessness,
depression, powerlessness
tears and agony--
and it can be impossible to predict how you'll feel day to day. There are no timetables. Instead, throw deadlines out the window. Recognize that certain things can trigger your grief anew, and accept that this will happen. Perhaps the sight of a big pregnant belly moves you to tears; a newborn snuggled in arms fills you with longing; the time of year you associate with the delivery brings annual melancholy.
Whatever you are dealing with, remember that your feelings are valid and normal, and you are not alone.
How do you cope? Sometimes, especially early on, it may feel like you don't. And that's okay. Give yourself permission to fall apart, to give up responsibilities, to spend time alone with just your feelings--because in fact, doing this can be a key to your ability to cope.
Coping, in a nutshell, means facing your feelings and expressing them fully in constructive ways. That means if you are angry, scared, anxious, guilty, sad, whatever--identify that feeling and find ways to express it--through talking, writing in a journal, pounding pillows, crying, getting information, long thoughtful walksÖ
It can be so helpful to find someone to talk to, someone who can just listen without trying to "fix" you. That someone might be a friend, another preemie parent, your partner, or a counselor. Writing in a journal about your experiences, your baby, and especially your feelings, can be as healing as talking.
You may also find it helpful to understand that two of the most difficult feelings to deal with are fear and sadness. Feelings of fear are often what underlie some of your other feelings, like anger, guilt, anxiety, powerlessness, depression. For many people, it is easier to get mad, blame themselves, run around in a panic, or withdraw rather than face feelings of fear and vulnerability. It is really hard to deal with being SCARED.
It is also hard to be so sad that you feel depleted, despondent, and devastated. This is a scary emotion too, for you may wonder if you'll ever be able to climb out of the darkness.
Grief is hard work but the more deeply you feel it, the easier it is in the long run. So, instead of trying to skate on the surface, wallow in your grief. Grieving deeply can be debilitating for sure, but it's only temporary. You may notice right away that if you really take the time and energy to grieve deeply, you unburden yourself from holding powerful feelings inside. This letting go is what enables you to move on. And you can figure out for yourself what most helps you move forward. Life can seem pretty bleak in the darkest depths, but if you keep going, muddling through your grief, you'll eventually see light at the end of the tunnel.
In contrast, habitually suppressing grief is far more debilitating and prevents you from moving on. Suppressing grief silently cripples your strength, drains your energy, injures your health and sabotages your happiness, because if you try to block the sadness, you also block the joy. When you suppress, you are suppressing all feelings, turning them inward, and increasing their power to control you. The more you try to avoid grief, the more it runs your life, because every move you make has to keep you detached, tough, or in denial. If you always try to control your grief, it can end up taking control over you. But if you can let it flow through you, you lessen the grip of grief.
So, try to simplify your life so you can set aside time for yourself and your feelings. Try to do this before you are forced to by some crisis such as failing health, disintegrating relationships, or marginal sanity. And over time, your sadness and longing will mellow and you'll be able to move ahead into the future. Your life will never be the same, but you'll get to a point where you can let go of "what might have been." You'll never forget what happened, but you can accept that it did, and acquire a sense of peace.
These feelings of acceptance and peace are hallmarks of adapting, coming to terms with a difficult experience. In the beginning, you may feel like you'll never be able to accept this, much less feel at peace. But eventually, you can adjust and integrate this experience into your life. You can claim it and own it as a part of what makes you YOU. You can look back and say things like, "Before this happened, I was such a mouse. Now, I'll stand up to anybody to get what I need." Or, "I used to take so much for granted. Because of what we've been through, I can appreciate what is truly important." Or, "If I hadn't been through this, I wouldn't have the friendships, the job, the interests, the special joys that I so value now." Seeing the positives, finding treasure in adversity can be key to finding meaning and integrating this experience into your life. You can acknowledge what you've lost, yet move forward with what you've gained.
Finding the positives is something you must do for yourself, when you are ready. This is something you can't rush, and try as they might, others cannot do it for you. When you are ready, you'll see the silver lining. It's there. I promise.
As you grieve, be kind to yourself. Cry every tear. Take all the time you need.
With warm wishes and hugs,
Debbie dmkdavis@aol.com
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