The Free Ranger

My 19-year-old son did not graduate from high school last year with his peers. Instead we made the decision to keep him in the public school system until he is 21. Ben has a genetic disease called Familial Dysautonomia which affects his cognitive and physical abilities. College is not in his future and we thought it would be best to utilize the public school/county services as he begins the next phase of his life.

Contemplating this next chapter is so much harder than with my typical children. While they may have an inkling of what they want to do when they grow up, Ben truly has no idea. I don’t think he can visualize his future beyond the present and would probably be happy living at home for the rest of his life. So besides taking care of his physical health, which is no walk in the park, I now am responsible for imagining his future. Sometimes this feels like a crushing responsibility.

We were elated to arrange an “internship” at our local Jewish Community Center’s preschool where Ben will help in a classroom of 4-year-olds from 8am – 10:30am. The high school Transition Counselor travel-trained him to ride a public bus from the JCC to his high school for some afternoon classes. Ben has gone to camp at the JCC since he was 3-years-old so it is a safe, comfortable place for him.

It’s still a little terrifying. There is no nurse at work, like there is at school. We put together a plan so Ben can take care of his daily medicine and g-tube feeding before he leaves the JCC. If one of his health episodes arises while at work, we taught him how to handle the situation. This is a huge step in his self-care, heightening his body awareness and giving him the ability to take care of himself.

I have zero concern about Ben liking the work or his behavior in the preschool classroom. He is sweet and thinks the little kids are “adorable.” Ben gives me daily reports about what they did and what they had for snack. He said he helps the little kids with activities and clean up.

The bus ride definitely gave me pause but I was excited and fairly confident that Ben could do it. The travel trainer was a careful professional who thought of things that I had never really contemplated for Ben, much less my typical children.

She said, “Ben said that he has never discussed safety in the community with you.  Not sure if this was an accurate statement, but he seemed surprised that someone on the bus might want to take his cellphone, ask for money, appear to be drunk or on drugs, looks a bit sketchy, etc.  He was unsure how to respond when discussing ways to stay safe. Have you talked in detail with him about this?  What about if there is an emergency (such as weather related or a terrorist attack)?  Have you discussed a family emergency plan?”

Clearly I have failed as a mother. I have inadvertently sheltered Ben as I have been so focused on keeping him healthy and happy. I haven’t been completely negligent but my “safety” focus was on his personal space, i.e. “no one should touch your private parts, etc.” We have always handed Ben off to another responsible person or institution who was looking out for his well-being. This is a new level of “free-ranging” that we have not experienced with our most vulnerable child. I taught my other children many of these things but they also use their intuitive senses to pick up danger in the world around them. Rather than beat myself up, the teaching for Ben begins now – it’s not too late. He has learned to always sit near the bus driver who he can ask for help if needed. With his phone in his pocket, Ben has become aware of the people and places around him. Yes, he has a little fear but no more than a typical person. New things are exciting and a little scary.

But a family emergency plan? Does everyone have these? I don’t recall one from when I was growing up. I hadn’t really thought about how to instruct my kids in the event of a disaster or say, a nuclear attack. The only thing that comes to mind is something my smart aleck uncle told me when I was a teenager. We were sitting on my grandmother’s apartment balcony and I wondered aloud what would happen if the balcony snapped off the building and sent us plunging down.

“You know what you would do?” he asked me.

“Yes?” I asked, eager to hear his sage advice.

“You put your head between your knees and kiss your rear end goodbye,” he slyly said.

And that is all I could think of. I know, I know – I will tell my kids to find the nearest adult if their cell phones don’t work. Do we have to come up with a meeting place? Maybe I’m just too much of a fatalist to think these plans make much of a difference. Hopefully I have given my children the tools they need to be resourceful and strong.

Ben has successfully learned to take the 13 minute bus ride from work to school. He has an ID card, a bus pass and his backpack and is very proud of his achievement. It’s thrilling for me to watch him achieve this independence since he is unable to drive. His 16 year old brother is about to get his driver’s license but the bus riding brother makes me just as proud.

It’s scary sending children out into the world after keeping them safe when they are young. But there are many wonderful experiences to be had out there. Here’s to keeping my fingers crossed and hoping for the best. Oh, the places you’ll go Ben!

Advertisements

Get a Little Uncomfortable

I started my professional life as a social worker in a hospital and after several fulfilling years I stayed home to raise my kids. Little did I know how much my previous work as a hospital social worker would help me raise children, particularly my son with a Jewish genetic disease who has many medical problems. It gave me a unique insight into both sides of the hospital bed – as the helpful professional and the hands-on caregiver.

As the years passed I had little interest in returning to social work as a career. I had enough problems of my own – I didn’t feel like hearing other peoples’ problems for a living. Sure, I like to think of myself as a good friend and am happy to offer my unprofessional advice when asked. But I am content to quietly deal with my own stuff while grabbing happiness when I can.

After my mother died I started writing, something I had not done before. My sister encouraged me to start a blog so I gave it a shot. A friend who is a professional writer and teacher suggested that maybe it was my mother’s legacy, as my grief over her loss led me to put my thoughts to paper. My mother was an incredibly thoughtful and kind person; I loved the idea of helping others through my writing as a way to honor her memory. The response to my blog was very positive. It turned out to be a great way for me to work through thoughts and issues that I grappled with and it seemed that people liked hearing what I had to say.

I am inspired by people I know who take chances and try new things in middle age, who fully embrace the saying that life happens outside of your comfort zone. People I know and admire have done really interesting things: started a Jewish acapella group, volunteered to be the president of an overnight camp board of directors, took a stand-up comedy class, became a hospice volunteer, and a volunteer advocate for children in the court system, became a health coach/nutrition expert, and a mentor to a teenage mother hoping to complete a college degree. Another friend who has been a lawyer for years is now working towards becoming a high school English teacher. Who knew that a friend and I would become leaders as part of a international women’s’ trip to Israel, helping women to rediscover their Judaism and connection to the land of Israel?

My writing led me to explore storytelling after my husband turned me on to a podcast called “The Moth” on which people tell true stories without notes. I had little public speaking experience but on a whim, I signed up for a storytelling class in the spring. It was in downtown D.C. and I knew no one in the class. The final class was a small performance for friends and family. I loved it so much that I decided to put my name in a hat at a Moth “Story Slam” in DC., which is an open-mic storytelling competition open to anyone with a five-minute story to share on the night’s theme.

I had one of my teachers coach me and I felt well prepared. I arrived that evening, put my name in the hat and then almost had a panic attack as the theater was filling up with hundreds of people. What had I done? I sat in the audience, not knowing if my name would be called. After the first story, my name was announced…show time! I bounded up on stage and told my story. It was terrifying and exhilarating but I was thrilled when it was over and felt so proud of myself. Out of my comfort zone indeed. It was a great place to be.

Here is the story I told that night. I didn’t actually win although I came in a close second. I felt like a winner anyway. The theme of the night was “Karma.” Turns out being uncomfortable isn’t always so bad….I highly recommend it.

(The link expired…working to get the story back up – stay tuned!)

 

 

Sweet Elusive Sleep

I just want a good night’s sleep. My kids are all teenagers so the unpredictable nighttime madness is over. Some stay up later than me so we peacefully coexist in the nocturnal hours.

A few months ago I noticed that my hands were falling asleep at night. At first I thought I was just sleeping on them. Then I noticed numbness in the tips of several fingers on one hand. I worried that I had diabetes like my late mother. Not being overly neurotic or a hypochondriac, I occasionally use a handy app called iTriage for perplexing symptoms before I go see a doctor. I had previously diagnosed myself accurately with shingles.

This time I came up with a possible diagnosis of carpal tunnel syndrome. I saw a hand specialist who confirmed my diagnosis which is apparently very common in women in their 50’s. While not thrilled with this diagnosis, at least it’s not life-threatening and I was once again secretly proud of my diagnostic skill. I would have patted myself on the back, if my hands didn’t bother me so much. The specialist recommended I try hand/wrist splints for a month while sleeping to see if this would relieve my symptoms.

I never thought how much numb hands would affect my horizontal repose but they did. It seemed cruel that on the rare occasions when I could leisurely lie in bed and read in the morning, my body wouldn’t cooperate and I had to get upright and out of bed to relieve the numbness. Ever the supportive spouse, my husband tolerated my whining, the loud ripping off of the velcro contraptions/splints of torture during the middle of the night in my moments of desperation and discomfort and supported my decision to have surgery.

The surgery was uneventful and seems to have relieved the symptoms. Sweet sleep would be mine again. I was psyched. Then, before I was even completely recovered a new problem developed. My husband told me I was snoring.

Snoring? Oh great. One sleep problem addressed and now another one loomed. I was mortified. Is this what middle age is like? Solving one physical problem and then another one pops up like a game of geriatric Whack-a-Mole? Sure, my husband had to endure my complaining about my hands but it didn’t really affect his sleep. Now I had a problem that affects our marriage. I envisioned a slippery slope where one of us leaves the bedroom to get some sleep and there goes the marriage as we know it.

I googled “snoring in middle age women” and find I am not alone. I am optimistic that I can tweak my lifestyle with good results before I have to move on to more invasive sleep studies, c-pap, etc. So many people are kept from a good night sleep by anxiety, depression and stress. I am fortunate that these things don’t plague me. It’s my body that is rebelling and ruining my rest.

My husband and I can still joke about it. Before going to sleep the other night, I wished him a good night sleep and hoped that he wouldn’t put a pillow over my face. He agreed that while it might be tempting, he didn’t really want to go to jail.

While we laugh, clearly this has the potential to be a real problem, not only for me but for my bed-mate. Just when I was looking forward to a good night’s sleep I feel exasperated that it is elusive for now. I dread going to sleep, worrying if I will drive my husband crazy along with the nudges from him during the night. To add insult to injury, I find that the glass of wine or two that I occasionally enjoy messes up my sleep as well. Falling asleep is easy with alcohol but I sometimes wake in the middle of the night unable to fall back asleep.

So I read – thank God for the Kindle but who knows how the electronic devices screw up my Circadian rhythm?

The pediatrician recently gave one of my teenagers a stern talking-to about the importance of getting 8 hours of sleep per night so all of the data he has acquired during the day can be sorted and stored into his brain properly while he is sleeping. All I could think about was how amazing it is that I function as well as I do, given the shenanigans of my body while it is allegedly “sleeping.”

The writer Anthony Burgess said, “Laugh and the world laughs with you, snore and you sleep alone.”

It almost makes me yearn for numb hands.

Parenting 201

parenting201

It’s official, I now have four teenaged children. I have completed Parenting 101 in the unofficial course book, where I was the director of my children (unfortunately my grade won’t be in for a couple of decades, but I think I passed.) I am now enrolled in the more advanced Parenting 201. I have become more of a supervisor than a director, allowing my children to become more independent as they learn to navigate the world from the safety of home base. Instead of identifying the goal and telling them the steps to get there, now they know the goal but they have more freedom to determine the path to achieve it. Just as they are learning new skills and flexing their decision making muscles, I have learned a few things too as I move through the ranks of my children.

My eldest will turn twenty in April. He is away at college where he is “undecided” in his major while being very “decided” about his fraternity participation. While this imbalance causes me slight agitation, I take comfort that we share the same goal of graduation and employment so I am confident in his ability to get there. I keep myself in check and don’t nag him even if he doesn’t do things exactly how I might. He is well aware of his many friends who came to college with specific majors; he has his own stress about deciding what his focus will be. I don’t need to pile on to his stress so I choose instead to be supportive and helpful when asked. A consultant, if you will.

Number Two son is a whole other ball of wax. He has a genetic disease which affects his health and intellectual/emotional rigor. He recently became 18 so we obtained guardianship in order to help him make decisions that are in his best interest. I try hard to encourage him to think for himself and be as independent as possible. We recently made the decision to keep him in our county school system until he is 21 so he can continue to gain skills that will help him become employed. Fortunately he is extremely pleasant and sweet; he trusts my husband and I completely to help him plan his future. If I think about it too much I am overwhelmed with this responsibility but my husband and I plug along, including him in our thinking and planning as appropriate. It is hard for many kids to visualize their futures, whether they have typical needs or special needs. As parents we just have to use the right approach to help them as they ease across the threshold to adulthood.

My third teenager will be 16 next month. He is learning how to drive and settling into his high school studying habits. One thing that I’ve learned is that occasionally a supervisor has to step in and take a more hands on role. He has some acne like one of his older brothers; I was a compliant mother of the dermatology patient with my older son, trying less invasive treatments which where only marginally successful. With this son I knew to be an aggressive advocate and start the big guns early – a 6 month oral medication, with monthly lab draws. When I told big brother what we were doing, he gave me a little gift of validation by telling me, “I regret not doing that.” My 15 year old was unaware of this option and would have lived with bad acne had I not acted. I didn’t want him to regret not having done something about it. Let him get on the therapist’s couch for something else I will screw up.  Whether it has to do with my parenting or not, he is confident and resilient, demonstrated by running for a youth group board position recently after losing two times previously. My protective mother instinct thought, “Why risk losing again?” Good thing I didn’t interject my concerns, as he won. I do not micromanage my kids’ lives. It’s their life, not mine.

The final teen is my baby girl who is 13. She has not turned into a surly adolescent yet. She is a solid student and a dancer. She has her own fashion sense, which I respect, and only weigh in on things like age-appropriateness and modesty. She pushes back a little but is mostly respectful of my input. She is fearful of things she finds “creepy,” like some odd neighbors who recently moved away and our new President. She recently asked to be excused from the dinner table when we were discussing the upcoming Inauguration as it causes her to feel anxious. While I can shield her from too much information, I want her to be informed enough, feel empowered to tolerate uncomfortable feelings and be her own advocate for things she feels strongly about.

I may not like every decision my kids make but I tell them I am always their number one fan. I find myself missing my mother, who died three years ago. I wonder how she managed our teen years. Thankfully I have my husband, sister and girlfriends to discuss the trials and tribulations of raising teenagers. They provide a non-judgmental sounding board off of which I can bounce my stories and concerns.

After the teenage years I have the dating and marriage fun to look forward to – Parenting 301 – clearly a graduate level course.

 

 

Our Two Dads

our-2-dads

Smack in the middle of the sandwich generation, I find myself motherless and with not one but two fathers. No, nobody’s come out recently. I am talking about two widowed men who found themselves rudder-less after the loss of their wives. My mother died three years ago and my mother-in-law died last June so my husband and I now each have a father as our primary parent.

Neither father lives near us but fortunately they are both independent and of sound mind for now, at 80 and 83 years old. Their bodies are slowing down but after 40, whose isn’t? My father has a little asthma and peripheral neuropathy so he is occasionally short of breath and his feet feel sluggish, making walking more difficult. My father-in-law has arthritis and very poor hearing.

We are grateful for the people who live near our dads. For my father, it is his new wife of six months. They live in Israel, half a world away from me. Besides him being happy, the added benefit is having a keen observer of my father’s level of wellness who will notice if he wakes up each morning.

My father-in-law being more newly widowed is still somewhat adrift and finding his way after 62 years of marriage. My husband’s siblings live near their dad in Chicago and are very devoted to his well-being.

We admire both of our dads for their ability to engage in life after the loss of their wives. Many people cannot find the energy to navigate life, do the tasks their spouses did for so many years, and even learn new things at a somewhat advanced age. Both of our fathers are affable people. My father is interested in politics and the stock market while my father-in-law is an artist, history buff and sports fan. They both still want to travel and see new places. They each do their best to remember family birthdays and anniversaries, like their wives did.

Our guest room feels like a designated “Dad’s Room” lately as they are our most frequent visitors. My father recently came home by himself to take care of some business and visit with his family. Flying from Israel is a tough flight if you are at the top of your physical game. When you’re 80 with physical maladies, it can be even tougher. My father seems to feel betrayed by his body as his mind still feels young and engaged. He talks about his ailments a lot, trying to figure out the cause of things and what he can do to make them better. He is diligent about going to doctors in search of an answer.

I loved spending time with my dad, even when he ruminated about his health. Since I am sliding into middle age at 53, I have some aches and pains of my own. When I mentioned the tendonitis in my foot that was giving me trouble the conversation shifted right back to my dad’s ailments.

“You think you have foot problems? Let me tell you about my foot problems….” he joked, as if it were a competition.

Obviously it’s not and I am sorry that he “wins,” as he is older and his issues are more debilitating than mine. I have come to accept that the period of my life where I get active attention and parenting from my surviving parent is over. It only seems fair that the tables have turned, as my dad (and my late mother) spent much of their life doting on me and my siblings. Every bit of minutiae felt important to me and therefore they listened and offered help. I remember during the years when I was having babies thinking that nobody but my mother cared about how the nights were with my crying infants. Who else would listen to my minute-to-minute reports? Now my husband, sister and friends are the lucky recipients of my kvetching.

It seems unrealistic to expect a surviving parent to carry the load of two full-time parents who had a division of duties carefully honed over a lifetime. Relationships that were so clearly defined while raising children and young adults become fluid, changing with time, age, and necessity. The one constant is love and affection, if you’re lucky. My father can hear, but active listening is not his greatest strength. His love, humor, wisdom and generosity more than make up for what he lacks in listening ability. My father-in-law, on the other hand, can’t hear well but listens as best he can. His kindness, good nature, and love of his family compensate for what he lacks in hearing.

It is illuminating to see our dads cast in a new light. Never strangers to our fathers while our mothers were alive, the loss of our mothers brought with it the opportunity to know our fathers in a different way. They can no longer just chat with us briefly before handing the phone to our mothers when we call. The buffer is gone so we delve into new conversations and become acquainted in a different way.

After the death of our mothers, life felt off-kilter, but eventually we have found a new equilibrium as our relationships with our fathers re-calibrate. While we miss our mothers we our thankful to still have our two dads.

 

 

 

A Minority at the Age of Majority

1452140091-0

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

images

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.