Ah, yes. At some point, it dawns on us parents of medically fragile children. What we have been through has changed us and our children. We are a unit. We will hurt together and, with time and proper care, we will heal together.
I think it's critical to understand posttraumatic stress, which may affect you or your child, before considering a rapid wean. The Intensive Phase can be challenging. Some children sail right through it, others grow pensive, cry, or dissociate for a time. I'm not suggesting it's a nightmare, and it won't be if the wean is well managed and nutrition and fluids are administered wisely during the Intensive Phase. But it is stressful and it's good to know how your nervous system (and your child's) may have already been affected by his or her medical history, as you prepare for a wean.
I found that though all three weans I witnessed were mentally and physically exhausting, that they were ultimately a chance to heal, release and repair things that had been hurt and torn apart.
When you are at the hospital with your seriously ill child, I guarantee you will be told by a social worker, nurse or family member that you must take care of yourself in order to take care of your little one. You may hear this so many times that it will stop making sense. How can you take care of yourself when you cannot sleep, are running on fumes, are eating hospital cafeteria food, and possibly pumping breast milk seven times a day? When you are either numb or having full-blown breakdowns? What can taking care of yourself begin to mean?
The first week, it meant sneaking beer into the NICU pumping room and having a delirious, heartbroken laugh with my husband. The next week, it meant tentatively sneaking out for a movie while Heath's grandmas held his hands. Later, it meant getting a haircut and a new outfit and going for regular walks. Back at home, having learned a bit more about trauma, taking care of myself meant breathing deeply and witnessing the alarm bells that continued to ring in my body. Letting the butterflies in my stomach flutter until they flew. Letting my heart pound and skin prickle until I felt a sigh or a yawn carry something away. Observing a flashback for what it was: the body's instant replay of a past event it still needed to defend against. Now, it means sharing experiences with other families who are going through the same thing. So, taking care of yourself will mean different things at different times.
You may realize, when you first return from the hospital, that something significant has happened to you. That, in fact, some crucial circuit was blown by the fact that your most fundamental instinct -- to protect and comfort your child -- was overridden by the necessity for invasive medical care. This life-saving care may have left you or your child stunned and numb. What happened? In the case of posttraumatic stress, the most ancient part of your brain went into overdrive when you were not personally able to fight off the threat or flee with your child to a safe place. And then it did the only thing left to do: it froze.
In some ways that's good. Freezing for a time will enable you to handle the unimaginable, to sign papers, drink coffee, put on your shoes and socks. But you may notice after a time that a part of you has curled up in a ball and, try as you might, you can't uncurl.
It took me several months to realize that something was wrong in my body and mind. It has been a journey in itself figuring out what to do about it. The good news is that posttraumatic stress is so much better understood that it was just a few years ago and there are excellent treatments out there. But you have to be careful because some professionals may not offer the best approach for your particular situation.
It is well documented that posttraumatic stress is common in parents of critically ill children:
- "Posttraumatic stress symptoms in mothers of premature infants," Journal of Obstetrical and Gynecological Neonatal Nursing. 2003 Mar-Apr;32(2):161-71
- "Maternal recall of the neonatal intensive care unit," Neonatal Netw. 1997 Jun;16(4):33-40
- "Acute stress disorder among parents of infants in the neonatal intensive care nursery," Psychosomatics. 2006 May-Jun;47(3):206-12.)
The first thing your doctor or loved ones need to understand about what you are facing is that posttraumatic stress is not "just emotional" -- it is a neurophysiological condition characterized by:
- a near-constant state of internal hyperarousal or anxiety. Knot in the stomach? Shallow breathing? Hunched shoulders and tension headaches? Yep, that's it.
- physiological constriction, which aims to focus the organism's ability to defend itself. This can manifest as blood vessel constriction (sending blood to the extremities) as well as constriction of awareness --"tunnel vision" as opposed to relaxed orientation to one's environment.
- dissociation. Are you spacing out frequently, taking refuge in TV or internet, even subtly avoiding moments when you could really connect with your child? It's hard to admit, but dissociation is there to protect us from the pain of being "caught" in a situation we fear will overwhelm us.
- freezing and helplessness. A friend with a medically fragile baby agreed with me recently that our bodies felt frozen after our babies' ordeals. Both physically active in the past, we now avoided even gentle yoga stretches which might melt our frozen armor and allow us to feel something other than our clenched, protected state. Corollary to feeling frozen is a sense of being trapped or helpless at times. Immobilization is a defense mechanism employed by many animals in response to danger, and yet it is maladaptive for a parent who must respond creatively and sensitively to a vulnerable child.
Sleeplessness, numbness, rage, exhausting crying jags or breakdowns, and intrusive or repetitive thoughts about the hospital stay or your child's medical condition are also common symptoms.
If you feel you or your child have posttraumatic stress symptoms, there is a lot you can do. Here are a few resources that may be of value:
This book helped me understand that trauma is neurophysiological. It revealed why "talking it out" or standard catharsis therapy can actually be counterproductive. And it includes lots of exercises for relaxation and regulation of the nervous system.
This companion volume to Waking the Tiger includes a CD with lots of great exercises to help regulate the nervous system.
Wonderful advice and information about how children experience trauma and how calm, loving caregivers can aid in their healing.
- Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness, Jon Kabat Zinn
Using a similar approach to reduce stress in the body, Jon Kabat
Zinn created the Mindfulness Based Stress Reduction program used in
hospitals. He has a wonderfully soothing voice and his audio CDs are
fantastic, especially Mindfulness for Beginners and World of Relaxation.
- Somatic Experiencing Therapy: If you think you would benefit from a few sessions of therapy, I highly recommend finding someone who incorporates a neurophysiological understanding of how trauma works. Cathartic "re-living" of the experience can make symptoms worse, no matter how well meaning your therapist. I have found this approach effective, working one layer at a time to raise bodily awareness, increase physical grounding and unclenching, and develop a strong sense of one's inner and outer resources before going anywhere near the heart of the trauma.
- Chinese Medicine: Even if you can't shell out a lot for acupuncture, for a few bucks you can probably persuade a Chinese doctor to place little stickers on your ears that help regulate the sympathetic and parasympathetic nervous systems. Here in Seattle, try the low-cost clinics at the Seattle Institute of Oriental Medicine.
- Yoga: More yoga centers are now offering yoga for relaxation, yin yoga, and a form of guided meditation called yoga nidra which has proven clinically effective for posttraumatic stress. Here in Seattle, try the Samarya Center, which offers Yoga for Anxiety and Yoga for Trauma Recovery (six sessions for $40).
When a child is undergoing pain or discomfort -- for instance during a medical procedure or gasping for air while vomiting -- we can help:
- We can get clear about our own physical state, be calm and grounded, offer firm and steady eye contact, and reassure the child that he or she will make it through.
- If the child understands, we can help him orient to sensations in the body with gentle questions ("How does your tummy feel?").
- We can restrain the impulse to physically override the child's shaking, trembling, and other physiological responses that indicate a shock or fear response "working itself out" naturally. We don't need to shift the child's positon or vigorously rub, pat or jiggle him, but a firm hand on the shoulder, leg, or solar plexus can help.
- Signs that the child is coming out of a fearful response include looking around and orienting to the environment. If the child is verbal, try talking about what happened a day or two later without forcing the issue.
For more about helping children deal with trauma in the long term, through play and other methods, see Peter Levine's work above.
Good luck to you and your families! I wish you a rich healing journey.