A Minority at the Age of Majority


As the school year begins, there is excitement in the air with many “firsts” and “lasts.” The first day of a new school, the last first day of school, and everything in between. For me, there is a tinge of sadness. My second child is a high school senior, with a twist – it is his first senior year, as the plan is for him to complete high school in five years instead of four. How exactly would one word that on a Facebook post?

I look around and see my son’s peers who I have known since he was little, finishing up their college tours, getting ready to start the college application process, like my oldest son did two years ago. I feel profound sadness that my second son is not sharing this experience. He has a genetic disorder called Familial Dysautonomia, which has many health and cognitive ramifications. He was diagnosed when he was one, so I have had his lifetime to adjust to his “normal,” and accept his non-traditional lot in life. Fortunately my glass is usually half full, so I can enjoy what I do have without focusing on what I don’t. I always think of that saying about “if we all threw our problems in a pile and saw everyone else’s, we’d grab ours back,” which I generally feel to be true.

My son recently turned 18 and I am proud of all that he has accomplished in his difficult life. The fact that he is a senior on the diploma track, even if it takes two years, is a huge accomplishment. He learned how to tie his shoes last year, a difficult task when you have poor fine motor skills. While he eats by mouth, which is something else he has learned to do as he’s gotten older, he has a feeding tube and has learned to feed himself independently. He plays piano. He learned to kayak recently on a family trip. He has an excellent memory, is very sweet and friendly, and loves his screens – be it a computer, Iphone, television, movie screen, or any hand-held device/game – often all at the same time!

When most people turn eighteen, the world opens up for them. They can vote, join the military, serve on a jury, get married, get a credit card and apply for loans. When my son turned eighteen, I had to apply for guardianship for him. What exactly does this mean? Basically, a court will determine that our son “is incapable of making decisions because of severe disabilities,” and that he is in need of protection. The court will then appoint someone to act on his behalf, namely us.

While I am well aware that my son is “disabled,” these are painful words to see in black and white. It feels like a punch in the gut to read the forms completed by two physicians which state that his disease is permanent, progressive and fatal. I know these things to be true but they do not rise to my consciousness on a daily basis.

Not one to fret too much, I generally let life unfold organically, guided by my inner voice and values. I know my son is fragile but I do not focus on his life expectancy, instead cherishing each day and year. I have come to learn that none of us know what the future holds, so other than living a reasonably healthy life, why worry about it? As someone wisely suggested to me years ago, I try not to borrow worry from the future.

It is at these milestones when my grief for the loss of a typical child rises to the surface, gently rolling over me in waves. Intellectually, I know that guardianship is in the best interest of my son and that it does not really change the day to day care and future planning that we already do for him. Being his guardians allows my husband and I to continue keeping him safe while encouraging his growth and independence. It just does so in such an official manner, unlike our other children who will hopefully all go off to college and make their own decisions about their lives with only occasional consultation from their parents.

The adult future that always seemed so far away during his difficult youth has arrived for my son. I am grateful that he is relatively healthy, happy and has reached the age of majority. He is a delightful young man who enjoys the simple things in life, being content and happy spending time with his family. We will deal with this legal task, mindful of the huge responsibility of being someone’s guardian and then go back to just being his parents, leaving the sadness behind for now and seeing what each new day brings.



Oh, and Another Thing


I married at 31 and started having babies when I was 33. By the time I was 38, we had three bouncing boys. I was getting older, tired and cranky, nearing 40 and seriously contemplated closing down the baby factory. Lo and behold, I was pregnant again.

Once we cleared the genetic screening hoops (our second son has a serious genetic disease), we anxiously awaited the arrival of our fourth, and final, child. We opted not to find out the gender of any of our children. We enjoyed the surprise when they were born. Even with the last child, I didn’t find out the gender because 1) I wouldn’t be able to keep it a secret, 2) if it were a boy, people would say, “oh, too bad,” before the poor guy was even born, and 3) while I knew too well how important a healthy baby was, regardless of the sex, I loved the idea of a little girl.

Miracle of miracles, I had a healthy little girl who is 12 now and just one of our crew. She is not the princess or the revered baby. She’s just #4. Okay, she twirls a lot more than her brothers, but you get the point.

Occasionally I feel a little bad that my daughter has an old mother, although I don’t think she thinks of me that way. I’m just her mom. Having lost my own wonderful mother a few years ago when I was 50, I feel a sense of wanting to impart all my wisdom to my daughter since she most likely will not have a mom for as long as I did. I was diagnosed with breast cancer six years ago, and while I am ostensibly cured, healthy and hoping to live a long life, one never knows what the future holds. I have to bite my tongue and subliminally drop my wisdom bombs. I don’t want her to remember me and think, “My mom was always cramming me with information because she was an old mom who worried about dying.”

I’m older than many of her friends’ moms, but that doesn’t bother me. I may not be as fun as younger moms who have more energy but I was never really that get-on -the floor-and-play-with-your-kids mom anyway.

Here are some things I want her to know:

  1. Read a recipe completely, BEFORE you start cooking.
  2. It’s worth it to pay more for a bra to have a salesperson who knows what they’re doing.
  3. When you order anything online, unless you really need it immediately always pick the regular shipping option – it usually comes just as fast.
  4. Be nice to everyone. If you happen to be popular, you want to be known as the really nice girl, not the mean girl.
  5. Don’t flatter yourself and think people care what you do. They have their own lives to worry about. Even if something happens in your life that makes you the news of the day, you will quickly be knocked down on the news-feed of life.
  6. Love yourself and your body. Everyone has things they wish were different about their body. Play to your strengths. I’m sorry you have bunions already at 12 years old. It’s part of the bad genes I passed on to you. Be thankful it’s your feet that you think are ugly and not your face.
  7. Don’t be a sheep and blindly follow others. Stick to your beliefs and values.
  8. When you have a house, put some lights on timers inside so it looks like people are inside. We were once burgled as a young couple when our house was completely dark, inside and out. Duh.
  9. Don’t be a doormat, to friends or a partner. Have relationships that are authentic and reciprocal.
  10. Don’t talk on your cell phone when in line at a store. It is rude to those around you and especially to the clerk. People don’t like to feel invisible. Smile at everyone.
  11. Have a schedule but be flexible, with yourself and with your children.
  12. Be grateful and express gratitude for what you have. Don’t whine about what you don’t have.
  13. Dress, speak, and act modestly. Be mindful of how you present and carry yourself. It speaks volumes about your character.
  14. Never “reply all” to an email unless it is specifically requested. No need to share the minutiae of replies. If you have to send an email to a large group, use the “bcc” so others can’t “reply all” either.
  15. Honor your father and your mother. Make sure I’m well cared for when I’m old. Two words – chin hairs.

I am aware of the opposite sides of the life cycle that we are on. My daughter is a young, budding teenager with beautiful, taut skin and boundless energy. I, on the other hand, am on the downhill slope which is full of lumps, bumps, wrinkles and if I’m lucky the occasional naps. We learn from each other’s different personalities and experiences, as even this old mom can learn new tricks. I will continue to quietly add to my wisdom list, teaching her with my words and through my actions.

Since my mother died, I often wonder “what would Mom do?” I can usually summon the answer. I hope my daughter will be able to do the same.

Navigating with Grace

If you’re tired of reading my essays, take a listen to this interview I did with Jana Panarites on her podcast, Agewyz, where she gives voice to the struggles of caregivers. After all, we all are, have been or will be caregivers at some point in our lives. I hope you’ll take the time to listen and share with others. Maybe you would like to share your story with Jana too? Click HERE to listen.

The Upside of Peer Pressure


I have one daughter who came along after three boys. None of my children have been particularly sporty in the traditional way. A couple of them did the obligatory baseball, soccer and basketball teams which were fun for a while, until they weren’t. Our kids swam on our neighborhood swim team for several years, which I loved even if they didn’t. They weren’t particularly talented swimmers but I liked that they were on the same team, with boys and girls and kids of all ages.

My daughter has resisted sports of any kind, besides dance, and doesn’t feel especially competent or confident when playing sports in P.E. at school. I secretly wished that one of my kids would show some interest and ability in a sport. The grass just always looks greener on the other side, and I know that sports have a multitude of well-documented benefits.

Spring was approaching and my daughter, now 12, is in middle school. I breezily suggested she might like to try track. Who knows, I told her, you might be good at it and like it. A vehement, “I don’t want to do track Mom,” accompanied by an eye roll was her reply. Oh well, I tried.

A week later she came home from school and announced that she and her friends were going to run track.

“Really? What a great idea,” I sarcastically thought inside my head. Clearly, peer pressure is more compelling than mom pressure.

Experts say facing the influence of friends represents an important developmental step for teens on their way to becoming independent-thinking adults. While it can coax kids into unhealthy behavior like drinking or speeding, it can also lead to engagement in more useful social behaviors such as studying or training harder in a sport. Apparently both peer pressure and learning to resist it are important developmental steps to self-reliance.

Peer pressure lessens as we age, but adults still feel it. I took up running as an adult because my sister was doing it. She had joined a running group and seemed to be having so much fun, so I joined too. I probably never would have been a runner otherwise. Peer pressure in adulthood takes many forms – where we live, how we dress, dress our kids, send our kids to school, give to charity, go on vacations, etc. Just like our kids, we can be pulled up or dragged down by the company we keep.

For now, I’m elated with my daughter’s friend group and their decision to take up track. She’s turned out to be pretty fast, which is a pleasant surprise to her and it’s fun to see her grow and evolve into an athlete. Like their swim team, there are kids of all ages and both genders, so the younger ones can look up to the older ones who get to be role models. Even though they race against each other, they are always trying to beat their own time.

Watching her hit the road makes me wistful for my running days, which are long behind me. Blessed with long legs she looks way better than me in her running togs.

May her miles be many and her chafing be minimal, and may her peers continue to push her in a positive direction.