As a parent of a child diagnosed with Prader Willi Syndrome, there are times in my life when the medical complexity of this diagnosis, begins to take its toll on me.
This month has been one of them.
After being diagnosed and treated for strep throat, my son, Nicholas developed a severely swollen left lymph node. Our pediatrician, an ER doctor and our Ear/Nose and Throat Specialist, all suggested that Nicholas may have a branchial cyst or malformation of the lymph node. With so many astute physicians in agreement, it seemed like a medical certainty.
In response to this possible diagnosis, we scheduled an MRI. Nick's anxiety issues required that he be sedated during the procedure. We were asked to come into Boston early for our appointment, only to discover that the MRI staff was many hours behind schedule.
It was a long and torturous experience for our entire family.
When it was over, we waited for almost a week before hearing back from the ENT.
Results of the exam showed that Nicholas did not have a cyst or malformation.
While we were very thankful to hear the happy news; the emotional and physical stress of the event made us feel overwhelmingly vulnerable and fatigued.
These feelings are a healthy response to a stressful situation. But when you are the parent of a child who is medically complex, these difficult medical scenarios can begin to accumulate one after another and pretty soon it becomes difficult to transition the soul back to that quiet, peaceful, and healthy emotional state.
Last week, I had trouble relaxing. I wondered why this was happening since I should be happy that there was nothing wrong with Nicholas.
I thought back to all the events of this past year and rewound in my mind, the enormity of my load.
Nicholas and I have met with specialists in endocrinology, neurology, psychiatry, gastroenterology, nutrition, ENT, opthamology, orthodontists, two neuropsychologists, an orthopedist, PT,OT and ST outside specialist evaluations not to mention his regular visits with his dentist and pediatrician. He has been fitted for a back brace, foot orthodics, braces and glasses. He has had x-rays, EEG's and an MRI not to mention several visits to the ER and an overnight stay in the hospital. There were several IEP's, a hearing and negotiations to transfer Nicholas to a new school.
While all of this running around took a physical toll on my body, there was a much more debilitating consequence. I experienced a type of emotional bleeding that occurs when a parent truly understands and accepts their child's medical fragility and vulnerability. It is a sobering awareness, an in-your-face understanding of a harsh and unthinkable reality.
In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.
I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.
I am thankful every day for our good fortune.
I am also however, only human, and unable at times, to overcome this feeling of helplessness.
I believe I am suffering from a type of Special Needs Battle Fatigue.
Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response.
I am experiencing things like: headaches, fatigue, edginess, difficulty concentrating, a lack of tolerance for noise and confusion, emotional numbness, bad dreams, strong feelings of guilt, depression and worry, angry outbursts, difficulty sleeping, and a loss of interest in things that were once enjoyable.
I realize that by exposing myself to this constant heightened level of stress, my physical body may begin to rebel and become vulnerable to a variety of sicknesses or disease, which only serves to perpetuate the greatest of all my fears....the fear of leaving my son too soon.
But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.
I have discovered there is a critical aspect of special needs parenting that I am neglecting.
My mental health.
I need to develop a plan that seeks to address this issue.
I need to help myself.
When Nicholas was first diagnosed with PWS, the initial stress of this devastating diagnosis and the accompanying lengthy list of specialist appointments caused me to experience a similar period of darkness. I named this depressive period.....the Prader Willi Blues or PWB's. It was, I believe, a form of Post Traumatic Stress.
In order to preserve my soul and continue to care for my suffering child, I developed a list of helpful strategies to help combat the PWB's.
Now, 10 years later, I am finding the need to revisit some of these same therapies and perhaps employ them on a more regular basis.
This is my Sanity Saving List, an ever changing record of helpful tools that help to preserve my emotional strength. When the fatigue of performing in the medical arena begins to wear me down, I try to implement one or all of the following strategies.
1) Hire a Babysitter:
This is important to finding some alone time for myself, a time to do the things that I enjoy, alone and uninterrupted. (Time hiding locked in the bathroom does not count)
2) Alone Time with Hubby:
An important time to reconnect with my husband and remember what brought us together in the first place.
3) Let House Work Slide or Hire a Helper:
The pressure and time involved in keeping a clean house is a thief of time and can interrupt those precious few moments needed for rest and relaxation.
4) Cancel Appointments:
Nicholas visits with so many specialists, I could literally spend all of our time just visiting with them. When times get tough, I try to take an entire month off from any specialists and non emergency visits.
5) Listen to Music:
This is a new one that I have discovered. Locking myself in my bedroom with the door closed and an ipod filled with my favorite music has done wonders for calming my spirit.
This is also a new one for me. I have found that purchasing a few good meditation cd's is a helpful tool. It took a while to find the right cd's that resonated with me. Meditation is alot like homework, it was difficult at first for me to make it a routine, but when I did, I noticed an improvement in my mood.
7) Nature Walks:
I learned this one from my son, Weston. Long walks outside amidst mother nature is another winner for relieving tension.
I find it very cathartic to talk about how I am feeling with others. It is when I repress my thoughts and feelings that I notice a darker side to my disposition. However, there is a huge warning here. I must be very selective in my choice with whom to speak, for some individuals are not instinctively designed to handle such a heavy load, speaking with these individuals can actually make my pain worse. I try to speak with only those who are thoughtful and willing to listen with a sense of kindness, compassion and void of any judgement.
Early intervention services in our state included the services of a family therapist. I am continuing with this incredibly helpful intervention.
10) Mini Vacations:
I try to plan several mini family vacations throughout the year. Looking forward to time away from the rat race has worked wonders for us all, especially Nicholas who loves new adventures. A few days away works wonders in creating a restful diversion.
11) Write, Write, Write:
Even if I do not share these thoughts with others, the process of getting it out on paper (or computer screen) has been particularly cleansing to me.
12) Sleep, Rest and Relaxation:
During times of increased stress, I try to sleep more. If I can't sleep, I try to just rest and listen to music.
13) Special Needs Groups and Individuals:
No one understands me better than those who share my struggles. Reaching out to these groups or individuals can provide some interesting and effective solutions.
14) Positive Reflection
: This, to me, is the most important. With every stressful event that has ever occurred while raising Nicholas, if I dig deep enough, I can always find an important lesson. So, when my mind wanders back to disturbing events of the past, I force my brain to explore a positive aspect that occurred because of that experience. I do not repress the event, since I believe it is important for the mind to rewind the experience and reflect upon it.
Implementing these strategies is painful. Maintaining them...even worse, feeling like a type of special needs homework, a dreaded but necessary evil. But by calming my spirit and accepting my child and his diagnosis, I am, in a way, helping myself to live a more happy and fulfilling life.
Ironically however, of all my life saving strategies, it is my son's soothing sage-like spirit that effortlessly balances my warrior woman energy, it is interesting to me that when I physically tire from the heavy load of caring for my son, it is he who comforts me most, and I wonder if perhaps this is no accident?
Would love to hear what helps all of you?
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Lisa Peters writes about the adventures of special needs and family life at her blog. Please come share our experiences at www.onalifelessperfect.blogspot.com. If you would like to learn more about Prader Willi Syndrome, or make a donation, please visit our PWSA USA National Organization at www.pwsausa.org. Thank you for reading.