Dear Potential Future Daughter-In-Law

 

I was in the coffee shop today, sitting across the table from this handsome and earnest young man, when I was inspired to write this letter. We came to work on his resume and perfect his cover letter so that he could land that entry level position after completing his education and becoming a licensed Vet Tech last fall. We were surrounded by young women, sipping coffee, scrolling on their phones or typing on laptops, in groups of two and three, and each completely oblivious to the presence of this young man; the man of the dreams that they don't even fully understand right now. 

Dear Potential Future Daughter-In-Law,

Find the nice guys. They are going to be the ones who you want to be with in the end, trust me. The bad boys may seem appealing now, but they will always be bad boys and they will hurt you, repeatedly. If you’re looking for someone to be in it for the long haul with, look for the young man who treats you respectfully and like the precious and beloved person you were raised to be.

He may be quiet or even socially awkward and he may not appear confident because of this. But chances are that he’s far more confident than the puffed up, arrogant, jackass who seems attractive to you right now. He will probably not even be the one to approach you first. He has far too much respect for you to think he’s even in your league. You may have to be the one to make the first move, but it will be worthwhile and you’ll always have that story to share at dinner parities and to tell to your future kids. 

He will likely have deep affection for his parents and will value his family. This will make him the kind of father that you will want for your future kids. It doesn’t make him a mama’s boy, it makes him sensitive and connected, in a healthy way. The kid who is trash talking his parents and saying, “f@©k the establishment,” may seem weirdly radical and exciting in this moment, but believe me when I tell you that he’s not the man your future self will want making decisions that impact the well-being of your family. And his lack of respect for authority will eventually destroy every relationship he has. It will.

Talk to the understated young man who took the time and made the effort to better himself through education or training that would provide more income stability. He may not have much experience with dating because he was focused on his future for a while and he may not be flashy and able to sweep you off of your feet, but who told that you shouldn’t remain firmly on your feet in a relationship anyway? That other guy, the one who says all the "right things," who has been around the block a few times…it’s only a matter of time before he’s bored and he’s moving onto the next block and saying those things to another unsuspecting young lady. 

Look for the guy who isn’t driving the fancy car or wearing the expensive clothing because he’s probably more concerned with saving his money and building his future than he is with appearing impressive. He’s the responsible one. He’s got a plan, and things like providing for a future family and buying a home are more important to him than they are to that pretty boy sitting behind the wheel of a flashy sports car. In fact, he’s probably even thought about things that seem so distant...like retirement and how to enable his wife to be home with their kids instead of at work and daycare, if that’s what she wants. And he’s spent time thinking of these important things before he’s even gotten a job or gone to school. He’s the guy you want in your life when you’re old and earned the right to be comfortable in life. He’s the one who won’t leave you alone to fend for yourself after you’ve given him everything of yourself.

Lastly, this guy, the respectful, kind, stable, and responsible young man I’ve been describing, he does not need you to be flashy and fake either. In fact, he doesn’t want you to be. He prefers the natural beauty that comes from being an empathic and genuinely caring person. He won’t be looking at the girls with their tight clothes and all their things popping out all over the place because he’ll only have eyes for you. He will be attracted to your honesty, your devotion, your kindness to others, to the things that make you a good person, not things that make you a trophy. But the funny thing is that you will feel like a trophy because he will cherish you and love you like you never imagined you deserved to be cherished and loved. And that will guarantee that I too will care for you deeply. We will be great friends!

With love,

Your Potential Future Mother-in-law

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:

• 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/) 

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 XIV, The Art of Happiness

Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is because he was given this unjust life sentence of having a progressive tumor disorder.  He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it?  

In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way.  I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."

It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools.  Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself.  Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots!  I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car.  She held the mitten up to me and assaulted me with her request, "Me too."  In my frazzled state, I was even irritated by her incompetance!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other? 

In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net.  My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life.   

Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.

   2. "You need to figure it out on your own."

How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother?  Too many times to count. 

Although I do feel some guilt about this, I don't think this was entirely a bad thing.  I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills.  There are whole articles written on this topic.

I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. 

  3.  "I expect more from you."

I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.

 This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I?  I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.

Of course, I have the same kinds of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage.  I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him.  This is the most troubling aspect of all.

Now for my apologies:

To my Biggest Kids, 

I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs.  I love you with every ounce of my being and wish for every happiness in your life.  You are strong, you are capable and you are amazing. You are not inconsequential in any way.  There are some very important life lessons that you learned by being his sibling.  I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize.  I never wanted you to feel that way.

 To the Baby,

You may have been born last, but you were not often given the opportunity to be the baby.  Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you.  I have expected things from you that were far reaching for your age.  I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could.  You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister.  You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations.  You have never complained about any of this and you have never expressed any wish to have it be different.  I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind.  You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express.  My hope is that you will never again in your life have to say, "Me too."

My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers.  Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation.