When you are told that your infant has a progressive tumor disorder, the journey is altered in a way that you could never have imagined. There are changes in the way you think about things, which you previously took for granted. Instead of when he will accomplish a new milestone, you wonder if he will. Everything you imagined for your child is suddenly ambiguous and the mental image you have created of his future becomes blurred and uncertain.
You make choices about getting involved in the cause, which helps you to cope, and you drum up support from friends, family and anyone who will listen for that matter. People want to help because it is so unfair and they realize that no matter how rough their child's ear infections are, they are blessed by comparison. Or perhaps, your strength and determination has inspired them to act.
When your teen-aged son's behavior takes a drastic turn for the worse, (Well he was always a spirited and sometimes unruly child anyway, right?) again, your path is altered. He begins self-medicating and taking dangerous risks. You feel completely helpless and have no sense of control. And even though the two situations share a lot in common: everything you had imagined for his future becomes clouded, mental health disorders are unfair, you need help coping...you find yourself very much alone.
I am the mother of two such sons. Somehow, it always seems that their crises coincide and I am forced to choose between my sons. Which one has a more urgent need? Am I rescuing or enabling my older son? Who will suffer most if I turn to the other? These are choices that mothers are not meant to make. These are impossible choices with dire consequences and do not ever have "right" answers. Yet, I find myself in this unimaginable situation time and again.
Children being born with a spontaneous mutation of a neurological disorder that has no effective treatments and no cure is one of those horribly unfair events in life. There is no shortage of sympathy and support available to them and to their caregivers. Their lives can be very challenging. Children being born with mental health challenges is equally undue, yet with that comes stigma and, as opposed to tumor disorders, little sympathy and scant amounts of support from outsiders. It is truly an unjust dichotomy that is central to my world.
One son has required long car rides to other states to find the appropriate specialists who know about neurofibromatosis. We have taken plane trips to participate in clinical studies and have had surgeries at hospitals far from home. My other son has been shipped across the country to avoid jail time at the age of 17. He was entrusted to strangers in a wilderness camp and then to more strangers in a residential treatment facility that I had never laid my own eyes on. He spent ten months and four years worth of college savings, in this treatment, only to come back home and repeat his previous behavior, despite having plans in place to ensure his success.
Both sons have kept me awake many nights with fears of impending doom and irrational worries about future unknowns. Both have depended on me to make enormous, life-altering decisions on their behalfs; judgments, which would have been difficult for a stranger, are yet impossible for a mother. Imagine that your toddler keeps bumping into things, falling and hitting his head, has poor balance and muscle weakness, yet the neurologist following his care says, "I don't recommend MRI unless there is a valid reason to do one. Call me if he begins to drag a leg or can't stand up." Can you conceptualize explaining what NF is to a so-called specialist and then have him report that he would like to aspirate the "swelling" (plexiform tumor) in your son's ankle and lower extremity to understand what is causing it?
Try to envision the courage and strength that it would take to call the police to report that your 19 year old son has threatened to take his own life and that he confided in you that he has a weapon. The tenacity it takes to stand by his hospital bed in the emergency room where he is being treated for a concussion and dog bites inflicted by the K-9 patrol when he hid in a basement and would not surrender, is unfathomable. Try to understand how it feels to have him spit at you and hurl insults about your crappy parenting while you, needing to plead with the staff to admit him to the inpatient unit for mental health, question every decision you have ever made that led you to this point in his life.
These examples are just a small sampling of the trials that I have been "chosen" to face as the parent of these two boys. I don't ask for pity, I don't even want pity! I ask for understanding. Please know that in my heart, one son is no less significant than the other. My younger son, born with a neurological disorder, and my older son, who is an addict resulting from an imbalance in his brain chemistry, are both worthy of my kindness, and yours. I love them equally and unconditionally and I ask the same consideration from the world.
When you are a new parent it is devastating to hear these words describing the diagnosis of your infant: "There is currently no cure for neurofibromatosis and there are no effective treatments." NF is highly under recognized, yet there are more occurrences of NF than of Cystic Fibrosis, Duchenne Muscular Dystrophy, Tay Sachs and Huntington's Disease combined! Research is crucial to changing these facts. In 2012, an NF Registry was launched to connect researchers and pharmaceutical companies with the NF patient database. The current focus is in getting people with NF to join the registry, and reaching the goal of 10,000 participants, so that the clinical studies can be adequately populated.
"NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities)." (www.CTF.org)
Mental health problems are highly stigmatized and exceedingly misunderstood. Yet:
With support and understanding, individuals suffering from mental health disorders can thrive in society.
- One in five American adults experienced a mental health issue
- One in 10 young people experienced a period of major depression
Suicide is the 10th leading cause of death in the United States. It accounts for the loss of more than 38,000 American lives each year, more than double the number of lives lost to homicide.(http://www.mentalhealth.gov/basics/myths-facts/)
- One in 20 Americans lived with a serious mental illness, such as schizophrenia, bipolar disorder, or major depression
"Friends and loved ones can make a big difference. Only 38% of adults with diagnosable mental health problems and less than 20% of children and adolescents receive needed treatment. Friends and family can be important influences to help someone get the treatment and services they need by:Human compassion and kindness are easy to come by when you suffer from a medical diagnosis, yet much less so when you endure a mental health disorder. Chances are that you are close to someone who has fit into the latter category and have felt a need to hide that person's sorrow from others to avoid the dishonor that tends to go along with it. Change can happen and will if even just one person embraces it. Will you be the one to alter the pattern of behavior? Or will you wait for someone else to do so?
- Reaching out and letting them know you are available to help
- Helping them access mental health services
- Learning and sharing the facts about mental health, especially if you hear something that isn't true
- Treating them with respect, just as you would anyone else
- Refusing to define them by their diagnosis or using labels such as "crazy" (http://www.mentalhealth.gov/basics/myths-facts/)
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”
― Dalai Lama XIV, The Art of Happiness
