Friday, June 27, 2014

Son Rise, Son Set: A Mother's Dilemma

Parenthood is messy and magical. If you do your job halfway decently, it is your worst nightmare combined with your best fantasy.  In most cases, it doesn't happen naturally or easily; the way we saw it on television when we were growing up.  The Huxtables, Cunninghams, and Bradys certainly did nothing to prepare me for the job.  Raising children is a mountain climb, not a walk in the park.  Parts of the path are steep with twists and turns and others are on an even pitch, requiring little effort. To make things more complicated, each child that you have is another adventure altogether. If we only knew ahead of time which challenges we would face.

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:
  • One in five American adults experienced a mental health issue
  • One in 10 young people experienced a period of major depression
  • One in 20 Americans lived with a serious mental illness, such as schizophrenia, bipolar disorder, or 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/) 
With support and understanding, individuals suffering from mental health disorders can thrive in society. 
"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:
  • 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
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?
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” 
― Dalai Lama XIVThe Art of Happiness












Monday, June 9, 2014

Surrounded by Greatness

I sit here reflecting on the NF Forum weekend from my couch. It is difficult to summarize all of the feelings that come from being surrounded by greatness.  From re-connecting and making new connections, to being addressed by the Director of the NIH, Francis Collins, MD, PhD (one of the co-discoverers of the NF gene), and all of the greatness in between, I am thoroughly, mentally and physically, deliciously exhausted.




How do I describe the completeness that comes from being a part of this amazing NF community; the only people in my life who really get it?  It is nearly impossible to explain the bond, that we in this community have formed,  to those who so generously show their compassion and consistently support our efforts, yet do not share our journey. After having had the opportunity to spend time together I miss them all so deeply from the minute we separate. And with every event, I expand my NF family, which invariably results in new little ones for whom I will surely lose sleep.



My very first visit to Capitol Hill as an advocate for CDMRP funding for NF research was an immersed learning experience. Thirty-seven of us took to the Hill on June 5th to attend meetings with Congressional staff, Representatives and Senators.  I was fortunate to be among a well-rounded team consisting of Squire Patton Boggs Staff member, Karen Kudelko, CTF Staff member, Garrett Gleeson, an NF2 patient from CT, Rhianna Curotto, an NF1 wife and mother from NJ, Farida Timal and me, NF1 mom, a VA transplant from NY.  As the day progressed, and with it, our confidence increased, we each contributed a unique perspective of the crucial need for continued support of DOD funding. I am truly hooked to this newest role in my fight to #EndNF. If you are considering participation in future efforts, please take this one piece of advice very seriously. Wear comfortable shoes!

Our Chapter Council has one opportunity to gather together each year. We call it networking time, but even more than that, it is a period of time in which we are re-inspired and recharged to get back out there and kick NF's butt.  We are the public face of the Children's Tumor Foundation; often times, the first contact an individual will have with the foundation. As Chapter Council leaders, Jill Markland, Karyn Zazula and I have the responsibility of guiding, inspiring and setting an example for the nation's CTF ambassadors. We strive to assemble a day filled with useful tools that this very important resource of people can take back home and use to guide and inspire those in their own chapters. In recognition of the greatness of this amazing group of volunteers, whose passion is driven by love and hope, I created this video.



Dr. David Viskochil, co-director of 
NF Clinic, University of Utah
Just when I think I know all there is to know about NF (not nearly), I learn many new things from the forum presenters and key-note speakers. Some aspects are enlightening and will surely make my life easier, while others destroy me with their possibilities. The varied topics on this year's agenda gave me much to absorb. There were discussions to feed my psyche about learning, coping, and improving social skills and there were topics to fuel my intellect, covering pain, genetics, and tumor management.  The malignancy presentation frightened me beyond my own understanding and required me to take some time to regain my composure. I am happy that I did, because the last two sessions about NF history and current research recharged my battery. If the researchers and doctors have had the ability to gain the increased understanding that they have in just the past few decades, I am encouraged to believe that with advancements in technology and new interest in NF research, they will bring us much closer to a cure and effective treatments, very soon.
Dr. Maria Acosta, Children's
National Medical Center
Jessica Cook, UK Director, Can You Hear Us?







Francis Collins, MD, PhD, director of the NIH, is an extremely busy man. Yet, he committed to taking a brief amount of time out of his schedule to address our group; the largest gathering of NF doctors, researchers, patients and families to date.  We are indeed a contagious bunch. Although, Dr. Collins certainly had someplace else to be, he continued to "work the room" and pose for photos after the standing ovation his address elicited from the crowd.  How could we not be in awe of this man's greatness? He is the Director of the National Institutes of Health (NIH) and the overseer of the largest body of work in biomedical research in the world. He is responsible for landmark discoveries of disease genes and, in fact, was a co-discoverer of the very gene, which changed the life of every single person in that room in one way or another; the NF gene.

The evening progressed in its greatness with the real-life account of this year's Children's Tumor Foundation Ambassador, Bailey Gribben. At just 16 years old, Bailey has already experienced more than his fair share of health challenges, yet he has never allowed himself to be a victim of his circumstances. How easy it would be for him to sink into that role.  Instead, Bailey rises to each challenge and overcomes. Beyond that, he exceeds anyone's expectations, except for his own, and excels in life. I, for one, will not be one bit surprised when the day comes that Bailey has played a role in huge scientific advancements of NF research.  Has this ever actually  occurred in history? 

I think of Bailey, a young man I am blessed to know, when I read this Aristotle quote:

 "The beauty of the soul shines out when a man bears with composure one heavy mischance after another, not because he does not feel them, but because he is a man of high and heroic temper."
NF heroes Bailey Gribben and D. Anthony Evans


As I recovered from the lump of pride that Bailey's story formed in my throat, one last speaker took the podium; Annette Bakker, PhD, President and CSO (Chief Scientific Officer) of Children's Tumor Foundation.  Dr. Bakker began her rein with CTF just months ago after serving as the CSO for the past several years. She has not allowed one role to hinder the other as her drive to #EndNF somehow continues to gain momentum with every new advancement. "I am going to save your children," was the declaration that got my tears flowing, partly because nobody has ever said it  before, but mostly because I believe her. Dr. Bakker's passion about her research is awe inspiring, but her genuine care and concern for the people affected by NF touches my core. I am proud to serve the foundation that she so effectively leads toward a cure.
Peter and I with NF Moms Stephanie and April
and CTF President and CSO, Annette Bakker

The greatest moment of the night came in the announcement of Jim Bob and LaurĂ©e Moffett's  $2.5 million dollar matching gift donation to fund a SYNODOS research collaboration for NF1.  This follows a recent announcement of a gift made by Mark and Tracy Galloway toward a similar project for NF2.

To say that my hope is renewed after this powerful weekend of being surrounded by greatness, is clearly an understatement. I am at a loss to describe the myriad of emotions I experienced over the course of these 4 days.  Advocacy, Community, Networking, Education, Engagement, Inspiration and Encouragement are just a few of the words that summarize a Children's Tumor Foundation NF Forum weekend. If you have not yet had the opportunity to participate, you are missing out. Children's Tumor Foundation makes every effort to reduce costs and select locations that will make the events accessible to all. I would be happy to help you find a way to make it to the next one, ten months from now.

Some highlights from the weekend:
VP of CTF, John Heropoulos with NF Moms
April Anderson, Anita Gribben and me

NF2 Hero, Matt Hay, Anita Gribben, Tracy Galloway-board member, Peter and I

The beautiful Omni-Shoreham Hotel in DC

Storming Capitol Hill with Farida Timal
Rhianna Currato
Politics!






NF Teens and Siblings hanging out together and having fun.


Words of wisdom from
Communications Director, Simon Vukelj


Effective Communication by Peter Sorman, PhD at Chapter Council