Author: Susan Margolis Stillman

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The Sweetest Sound

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As parents, we try to produce well-rounded children. Sports seems to be high on the list of activities to encourage, as is trying to nurture a love of reading and exposure to musical instruments. I am guilty of suggesting my children try different things. They all briefly played a sport but nothing got any of them particularly excited. So, I became one of the masses who signed their kids up for music lessons, hoping they’d become concert pianists or at least raise their IQ a few points.

I’m not sure why so many people force the issue and make their children play, even when they obviously don’t like it. Neither my husband or I play the piano. I played the flute for a few years and he played the trumpet, both while we were younger children. We each have fond memories but neither of us continued as teenagers or adults. For some reason, it seems that many adults regret: a) never having learned how to read music or play an instrument or b) not being forced by their parents to continue playing into adulthood.

We bought a used upright piano several years ago and all four of our children have taken lessons. Numbers 1 and 4 petered out after several months. They have similar temperaments and couldn’t bear the frustration and inability to be immediately perfect.

Numbers 2 and 3 have been playing for about seven years.

Now that I’m on the parent side of this equation, I get why parents don’t force their children to continue. It’s because the constant nagging and negotiating to get them to practice is unpleasant. When the nag/playing ratio becomes too uneven, lessons should stop, in my opinion.

Fortunately my piano players are in a good place and practice willingly, at least most of the time. It is truly music to my ears, both literally and figuratively. My seventeen-year-old has limited capabilities due to his genetic disorder and spends lots of time on various screens so his piano playing gives me an especially great joy.

In the past, he was not always so focused on his music. Maybe I pushed him a little harder because his playing made me happy.

“Are the piano lessons for him or for you?” my husband asked.

“Maybe a little of both,” I confessed. So what?

Then there are the recitals. I find these to be one of the sweeter benefits of being a parent. I love the piano recitals. I love watching all the kids, not just my own. I love seeing the kids dressed up, girls in fancy dresses with bows in their hair and boys often wearing “high-waters” – clearly dragged from the back of the closet from the last time they needed nice clothes. I like hearing the little kids plunking out tunes all the way up to the extremely talented children. Really, an hour is about the length of my attention span for classical music so it suits me perfectly.

My fourteen-year-old had a recital a few weeks ago. He didn’t know the piece as well as he would have liked, but I didn’t care. I was proud to see him get up there and perform. That’s part of the whole package of playing an instrument – working on something to make it better and having the confidence to get up and be vulnerable in a room full of people.

I read that “music is well said to be the speech of angels.” Lucky me – sometimes it feels like I have a little bit of heaven in my own house.

 

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If It’s Not One Thing…

carbohydrates

I am the most compliant patient in the world. Since my daughter was recently diagnosed with Celiac Disease, her doctors recommended that all first degree relatives get tested too. I hadn’t seen my internist in a few years so I had blood work done and made an appointment for a physical. I feel pretty darn good in my middle age with no physical complaints or concerns.

The good news is that I do not have Celiac Disease or Hashimoto’s, the other autoimmune diseases that two of my children have. The surprising finding from my blood work was that I am told that I am “prediabetic.” Excuse me, what?? I was not expecting that, at all, whatever that is or what it meant for my health.

The doctor calmly explained that I should just limit my carbs and get re-checked in six months to a year. Oh, no big deal I thought as I left the visit although I felt somewhat agitated. I realized it was not the end of the world. It was not a fatal proclamation but merely a wake-up call that I could develop a chronic illness if I don’t change my eating habits. I suppose I should be thankful.

I may well get to that place of gratitude but first I had to have a pity party. I wallowed in sadness that I had one more thing to deal with in my life. One child has a feeding tube, another is gluten-free. I’ve had breast cancer so I’m aware of my diet in terms of trying to avoid a recurrence. How much do I have to bear? I had a good cry, felt completely sorry for myself and even went so far as to wonder if my life will be cut short by diabetes or cancer, which are both accounted for in my family and personal history.

The next day, I went to my “board,” seeking support.

“Do you think I could have Munchhausen Syndrome?” I asked my sister. That’s a mental disorder in which a person repeatedly and deliberately acts as if he or she has a physical or mental illness when he or she is not really sick. My nuclear family has many diseases and disorders, is it possible that they were products of my imagination?

“I don’t think you could manipulate blood work,” she sensibly said. Oh, right.

My friends rallied, trying to find the right words to comfort me. One friend lovingly suggested I focus on what I could eat rather than what I should try to cut out.

“No, no,” I told her, “that’s not what I need right now. I’m sure I’ll get to that place but I just need to hear something along the lines of ‘I’m sorry.'”

“Oh [expletive],” another friend exclaimed when I told her about my diagnosis. Now that was just the kind of love I was looking for.

Even my rabbi, who I happened to see, offered this comforting statistic, “AARP says that there are 29 million people in the U.S.with diabetes and 86 million with prediabetes. So you are in good company.”

You see, my late mother had adult-onset diabetes. She handled it with such grace, discreetly checking her blood with nary a complaint. My sister and I have memories of our mom looking at nutrition labels and announcing how many carbs a product had, as we remained blissfully ignorant and uninterested in all things diabetes. It is a very strange experience to feel like I am channeling my mother as I transition to living my nutritional life a lot like she did. It just makes the whole thing even more emotionally loaded for me.

But I’m nothing if not resilient. I’m sure when I lose 20 pounds I will come to love my prediabetes, embrace the diagnosis and become its poster child. Never half empty, thank God my glass will continue to be half full of wine, which fortunately is low in carbs.

 

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Better Late Than Never

There are many things parents teach their children—toilet-training, personal hygiene, shopping, food preparation, shoe-tying, bike-riding, and swimming to name a few. I have had the pleasure of teaching one of my children to feed himself through his gastrostomy tube.

This 17-year-old son, the second of my four children, was born with a Jewish genetic disorder called Familial Dysautonomia (http://www.familialdysautonomia.org/facts.htm). He walks, talks, and is cognitively with it, but he is medically and physically fragile. He eats some food by mouth, but gets much of his nutrition through a gastrostomy tube in his stomach.

He was diagnosed with this disease when he was 1-year-old, but he had feeding trouble from birth. A g-tube was placed at 6 months, once the doctors figured out that the formula from a bottle often went into his lungs instead of his stomach. Speech therapists encouraged us to feed him by mouth in the hopes that the tube would be temporary. As desperate young parents, we spent hours and hours feeding our son by mouth although he was often uninterested and somewhat averse. We had one other child at the time who was only 16 months older. We were discouraged but accepted the tube feedings as part of our life, at least for the short term.

While it was hard to accept this fate, it was much quicker and efficient to tube-feed him. Sure, we still had to feed him several times a day, but it only took a few minutes each time. We grew accustomed to the stares and questions from curious people. We just wanted to feed our kid and hoped that he would continue to grow and be “normal.”

Like many parenting tasks, the feedings soon turned to drudgery and felt like a chain around our necks. Every couple of hours we had to drop what we were doing and spend a few minutes feeding our son. Yes, we had to feed his siblings as well, but with them we could put the food in front of them and walk away. The feeding tube felt more like a tether as we had to stand there and pour the liquid into the syringe, connected to the tube that went into his stomach.

As he got older he could at least hold the syringe so we could dash around feeding the other kids and return frequently to pour more formula into the syringe. But that too became cumbersome. What to do? How could I make my son more independent with this task?

Perhaps divine intervention led me to find a funnel underneath a sink in a newly renovated bathroom in my home. Hmmm, what the heck was this? Some piece left over by the plumber? A light bulb went on over my head, as I could envision this funnel sitting in my son’s feeding syringe, giving him a wider opening into which he could pour the formula, given his less than optimal gross and fine motor skills. It’s not called the “mother” of invention for nothing.

He resisted the idea at first but quickly got the hang of it. Freedom, at last! And the funnel? Turns out it was meant to fill the soap dispenser that is built into the counter-top. You can imagine the reaction I got when I called Kohler to order 12 of them!

So maybe we were remiss in teaching our son some of the other self-care skills. He can’t ride a bike, but not for lack of trying. He’s safe and comfortable in the pool, but he can’t actually swim strokes—again, not for lack of lessons. Those things weren’t in the cards that God dealt him.

But he did recently reach a momentous milestone. He learned to tie his shoes. We have tried to teach him over the years without success. His frustration, and ours, was too great with the return benefit just not seeming worth it. Sure, I knew he was too old for his mom to still be tying his shoes, but somehow it just didn’t make it to the top of the “things to worry about” list. His health is always number one.

Recently I took my son along with my 11-year-old daughter who wanted to get a new pair of Converse All Star sneakers. While at the store, he decided that he would like a pair as well. Given that he rarely shows any interest in fashion I happily agreed to buy them for him. He was very pleased with his new shoes, which inspired me to raise the dreaded issue of shoe-tying. We tried the bunny ears technique first which was too cumbersome. Somehow, when I showed him exactly how I tied my shoes, it clicked and his fingers were able to do what his brain told them to!

He is super proud of his new skill as he walks around in his new Chuck Taylor’s. And as his mom, I couldn’t be happier. Better late than never.

 

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A Higher Calling

HigherCalling

I was at a party recently, chatting with a woman who is a hospice volunteer. She was unique, in that she brings her dog with her to visit dying people. What a lovely idea, right? She said she was inspired to do it after visiting relatives in nursing homes, whose only stimulation was the television blaring in the background. She wanted to provide the tactile stimulation and evocative memories that people can experience when petting a dog.

I have a social work background, am very comfortable with the hospice clientele, and I have a dog…hmmm, maybe this was something I could consider, I thought. Is there a certification a dog has to have, another woman asked? Yes, of course we were told.

“Well my dog’s certifiably cute,” I offered. I think he would bring joy to people at the end of their lives.

The hospice volunteer went on to explain that her dog is a standard poodle who was in fact a rescue dog. She said that he seemed to have a calling for this kind of work. Once, a patient with advanced dementia who barely spoke, reached out and patted the dog and said, “I had a poodle too.”

Her dog has a calling. Huh – imagine that. I wondered if my dog has a calling.

I told my sister about it the next day.

“Great,” she said, “now you not only have to worry about your children achieving their potential, but you have to search for your dog’s calling. Sheesh.”

I thought I just had a run-of-the-mill, rear-end sniffing, self-licking, squirrel-chasing, laying-around kind of adorable dog. Maybe he’s destined for greater things. Do I get him tested to see what his skills, strength and weaknesses are? Or take him to doggy therapy to work out his neuroses and self-image so he can lead a happy, fulfilled life?

I’m exhausted just thinking about it. I think his calling may be simply to bring joy to our family. If I have the energy, maybe I’ll see if he has a knack for making other people happy. I suspect he will. As the late, great Andy Rooney said, ““The average dog is a nicer person than the average person.”

We should all strive for a higher calling.

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A Smile Never Gets Old

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Over the summer my sister was gearing up to go to the wedding of a friend’s son. I asked her what she was going to wear. She proceeded to tell me her attire and jewelry options, and asked for my input. As per usual for our conversations, I cut to the chase.

“Don’t worry about it. You are just the friend of the mother of the groom. That is so low on the totem pole of attention. As long as you’re not naked, no one will notice you,” I advised her.

She wholeheartedly agreed. Frankly, it’s a bit of a relief to not have to try so hard. You can put on a dress, slap on some lipstick, run a brush through your hair and just blend into the background of anonymity. Unless you look especially awful or amazingly awesome, it doesn’t really matter. No one is looking at you that closely.

For me, the goal is to be reasonably hip and fashionably relevant without trying too hard, while dressing “my age.” Basically, if I don’t hate my reflection in the mirror, my husband finds me attractive, and my girlfriends think I look nice, I’m in business. Anything beyond that is icing on the cake.

Of course it’s disconcerting to catch a glimpse of “who is that old woman she looks so familiar oh my gosh it’s me” as you pass a mirror and notice your face slowly melting from the burden of prolonged gravitational pull. It’s no picnic to see pictures over the years which document your ascent to the prime of your life and your slow meander down the other side.

They say growing old’s not for sissies and I believe that to be true. But I think of so many people I know who didn’t have the opportunity to grow old. I remember them and try to navigate my own aging with grace. I hold up my wrinkly face, puff out my saggy chest, stand as tall as my shrinking skeleton will allow and walk proudly through life, seizing each day.

At least the smile on my face is the same. As I tell my kids, that’s what people notice more than anything else.

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Home Base

Baseball diamond

It was so gradual, I wasn’t even aware it was happening.

My sister’s lived out of state for years. My mom died two years ago. My dad moved to Israel. His house just sold, so he came back to close the deal and empty out the final contents of the house. For the first time, he stayed with me instead of his house, which was basically empty. I realized that I had become my family’s home away from home.

I first became aware of the shift over the summer. My kids were away and my sister wanted to come home. Really, I thought? I’ve got no kids home and wasn’t looking for company. She hadn’t been home for awhile and wanted to visit the cemetery where our mother is buried. I couldn’t tell her not to come. Alas, in the new reality, I am “home” for her so I wrapped my mind around this idea, bought her beloved Diet Coke,  and told her to come. We had a great time as usual.

Now it’s my dad’s turn to stay at our house. It’s nice to have him with us – three generations living together for a month. He enjoys my children and we all enjoy having him around. He and I have lunch together most days. My husband and Dad chat over the occasional scotch. Such domestic bliss, you can’t imagine. My father looks the other way when I yell at my kids. We smile sweetly when he repeats himself. We’re practically a scene straight out of the tv show “Modern Family” – my dad being the cantankerous patriarch. I dare say he has even developed a moderate affinity for our dog.

All good things can benefit from a break though, so my Dad went to visit my sister and her family in Indianapolis, taking an early morning flight. My sister called me a few hours after he arrived. Our dad was sacked out on her couch – after all, he had been awake since four a.m.

“From my couch to yours,” I chuckled.

“How long does he usually sleep?” she asked with concern.

I felt like we were discussing a toddler instead of our paterfamilias. Fortunately he’s an active and healthy 79-year-old. It’s emotionally and physically exhausting cleaning out a house you’ve lived in for almost 40 years. He was tired.

I thought I was over the emotional part of saying goodbye to his house but apparently I wasn’t completely. The family homestead was the headquarters for our family for close to forty years. It’s a sad feeling to close that chapter of my life and a weird feeling to have the tables turned and for me to be home base. It’s a subtle shift, but a change none-the-less.

My father will leave the U.S. to return to his life in Israel next week. It’s strange for him to have given up his U.S. residence, but it’s worth it for him to be unburdened by the contents of a large home. He can visit his favorite possessions and my mother’s artwork in any of his children’s homes when he’s feeling nostalgic.

Yup, it’s a new rhythm for our family but one we are all adjusting to. There’s no place like home, wherever it may be.

 

 

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Discluded

penguin-exclusion

The topic of inclusion for people with special needs has been on my mind lately. In particular, I’m focused on my seventeen-year-old son who recently auditioned and was selected to be in a two-year conservatory program for students with cognitive and/or developmental disabilities. It was a group audition with a one minute solo opportunity of the actor’s choice. Our son told a brief story about his beach vacation, complete with his amazingly good animal imitations. I wasn’t there, but I can only imagine that he brought down the house.

To be included, or not to be included? That is the question.

It is especially pertinent to the parent of a child with special needs. My son has a genetic disease, Familial Dysautonomia. He walks and talks, but his balance and gait are not great. He has a feeding tube, through which he can feed himself and he also eats by mouth. He has no behavior problems and is sweet with an innocent personality. We encourage him to be as independent as possible.

I recall a holiday dinner with friends a few years ago when my then eight-year-old daughter and her friend came to complain to the adults that the big kids weren’t playing with them.

“They’re discluding us,” they announced to our amusement. We did what adults do – told the big kids to be nice and tried to persuade the little ones to give them some space.

But really, must everyone be together all the time? Sometimes I like to hang out with people like me, sometimes I don’t.

When my disabled son was younger, I was very focused on inclusion and mainstreaming. I was so hopeful that he would fit in, make friends, and lead a typical life. Why shouldn’t my child be included? I was his advocate and tried so hard to focus on the parts of him that were like everyone else, rather than the things that made him different. He goes to a large public high school where he is mainstreamed and manages amazingly well with a lot of loving support.

As he’s gotten older, however, my acceptance of his differences has evolved. I can embrace the wacky, fun, quirky things about him. When he aged out of day camp and their wonderful inclusion program, the next option within the camp was with a self-contained group of disabled kids. At first I bristled at the idea of him being with a group of disabled kids – what about typical peers and role models? But, I had no other options, the camp had been great for my son since he was three-years-old, and it was better than him spending the summer playing video games in my basement.  We decided to give it a try.

I learned that my son didn’t mind being in the group at all – in fact he liked it. Even if I perceived that he was higher functioning than many of the other kids, he enjoyed making his friends laugh, helping out and hanging out with the counselors. It was the beginning of my being able to watch him move into and out of inclusion with fluidity and grace.

The campers went on a field trip to an improv place. The counselors told me my son loved it, which gave me the idea to pursue a theater class. While the theater program offers both inclusion and self-contained classes, we opted for the self-contained ones since he had no previous “training.” He took two classes last year. We went to the end of the semester observation. My husband felt that our son seemed so different than the other kids. I, on the other hand, saw him as belonging in the group and was so happy to see him shine. Apparently, inclusion is in the eye of the beholder.

I am thrilled that my son has this opportunity to learn some new skills, have fun, make friends, and be part of another nurturing community. As Shakespeare said, “All the world’s a stage, And all the men and women merely players.” These kids hit their marks, sing mostly on cue, and exit stage right and stage left, albeit slowly. They may have different abilities, but their performances are no less sweet.

 

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Four Beautiful Words

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I just passed through another of life’s parenting milestones. My eldest child went to college, to the University of Maryland. It’s only 30 minutes away but once you’re on campus, you could be 30 hours away. I have no expectation that he will come home on weekends and told him I don’t really expect him to come home until Thanksgiving. We walked around the campus a bit after he was settled in his room, but I could tell he was ready for us to leave.

So we did.

It was strange to come home without him but we’re used to him not being around. He’s been away from home a lot and he has an active social life. He’s been slowly drifting away from us, which, as all the parenting manuals tells us, is what they are supposed to do. We are keenly aware of this being a rite of passage – both for our son and for ourselves. Are we really old enough to have a kid in college? We’re a little sad that this phase of being a parent to this child is over. But as a friend pointed out to us, we still have a deep bench at home with three other tweens and teens around to supervise.

Mostly we feel excited for him. Walking around campus reminded us of how awesome and fun college is. How could we feel anything but excitement? On the flip side, we’re reminded of how awesome and fun college is. How could we feel anything but terrified? It feels a little like tossing him out into the world, with a pat on the rear end, a wave of the hand, and a jolly “good luck to you son.” I know he’s smart enough to fend for himself and I trust the universe will be kind to him, or at least kind enough.

He was a little wistful when his high school friends started leaving to go out of state, thinking they would have a much more geographically diverse population of friends to pick from and more exotic college towns. I assured him that he would meet people from all over the country who come to Maryland, as well as people from places in Maryland that he’s never been to or even heard of.

When he called home after a few days, he said, “You were right Mom.”

Whoa, hold up. Did he just say I was right? I wasn’t prepared. I couldn’t ask him to say it again more slowly, could I? Where’s ESPN when you need it? She shoots she scores!!!

Certainly I will be wrong about lots of things I am asked to consult on in the future. It was such a gift to be right, at least about something, as he ventures out into the adult world. It was a little validation that some of the wisdom I tried to drop on him throughout his life may have occasionally penetrated his consciousness.

My work is done, for now. Yeah, right, until he needs cash. Then I’ll be right on the money.

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Ignorance Was Bliss

Wheat field and blue sky with clouds

Knowledge it is said, is power. Most of the time, this is very true. However, there are times when a little less knowledge never hurt anybody. Like knowing exactly what my teenager is up to while out with his friends. Or what hot dogs are really made of.

I didn’t want to know that my daughter has Celiac disease. She was asymptomatic and has grown like a weed. Okay, so she had the very intermittent, minor stomach pains but show me someone who doesn’t. My daughter already had one autoimmune disease – Hashimoto’s Disease (which affects a person’s thyroid function.) Thank you so much for your interest Celiac, but we’re not hiring anymore diseases, have a good day.

I only have me and my big mouth to blame. Last October, I was chatting with a close friend who is a Health & Wellness Coach and mentioned my daughter’s periodic stomachaches. My friend casually suggested that I consider cutting gluten from her diet. I raised this topic to my daughter’s endocrinologist a few days later and the whole diagnostic process was set in motion.

Nine months later after several blood tests, a visit to the gastroenterologist and a biopsy, here we are. Part of the Celiac people. It’s my daughter’s GI system, yet I feel like I’ve been punched in the gut. I know, I know – countless well meaning people have tried to console me:

  1. It’s better to have Celiac now that there are so many food options; it was much harder in the past.
  2. It is better to know when she is young (11-years-old) as it will be easier for her to change her eating habits.
  3. Knowing this young can prevent health issues in the future, like stomach cancer for instance.

I appreciate people’s kindness but the truth is, I don’t wanna deal with it. Aside from my own self-pity, I feel badly that my child has to deal with this latest diagnosis and be hyper-aware of her health and diet at such a young age.

My husband runs an association of gastroenterologists. I told him, “I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic.”

No such luck. Fortunately my daughter is being way more mature about it than I am. We held off telling her at sleep-away camp and thought we’d tell her when she came home and asked about it on our beach vacation. That didn’t happen. The days flew by, we all indulged in a gluttonous gluten-fest and she never asked about the biopsy results (which she had inquired about in a letter from camp.) Driving home from the beach, she finally asked.

“Do you really want to know?” I asked her.

She rolled her eyes and sighed. So we stopped and bought her a pony on the way home from the beach, to soften the blow of the diagnosis.

Not really. We told her we would learn about the disease together, gently dip our toe into the Celiac waters and gradually make the switch to a gluten free diet. And that’s what we’re doing.

“I think I’ll start by going gluten-free for breakfast,” she announced.

Sounds like a good plan to me. We’ve begun the trips to the grocery stores to purchase a variety of foods and snacks for her to sample.

Before she got the news about this latest auto-immune disease, my daughter remarked that if she hadn’t been diagnosed with Hashimoto’s disease, she would not have met her endocrinologist who would not have recommended the dance studio where she happily dances now. Wow – I was struck by her ability to make lemonade out of lemons.

Thank God she’s resilient. I guess it runs in our family. Let’s hope that Celiac doesn’t.

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The Elusive Peach

first-peach

One of the best things about summer is the availability of fresh fruit and vegetables. There is such a variety to choose from and it is generally delicious. Vegetables seem to be more reliably tasty than fruit. I can pretty much count on tomatoes, corn and cucumbers being flavorful. I would venture to say that watermelon, grapes and strawberries can be counted on to taste like a little bite of summer. But the peaches, plums, nectarines, honeydew and cantalope are a veritable crap shoot. Sure, I squeeze and sniff them but I am not confident in my selection ability. Sadly, I am often disappointed. When I do bite into that perfect piece of summer fruit, I feel like I hit the lottery. It is sweet, juicy, and absolutely delicious.

There is one fruit that seems particularly hard for me to find in a succulent state – yes, I am always on the lookout for that elusive perfect peach. My husband swears that peaches are better if you buy them at a fruit stand where they are locally grown. I have not always found this to be the case or I’m just not going to the right place. Testing his theory, I strode into a fruit stand on the Eastern shore on the way home from our family vacation.

“I’m looking for a delicious peach,” I announced.

The nice lady took the time and humored me while carefully examining several peaches, even allowing me try one. I have to admit – it was better than most I’d tried during the summer.

My husband and I discussed the difficult pursuit of good fruit, after delighting in a delicious honeydew one evening.

“I would eat fruit all the time if it tasted like this,” he said. “Candy and cookies, on the other hand, always taste good – that’s the problem. They’re so reliable. Fruit, not so much. Yep, you never bite into a mushy Oreo.” Such wisdom my husband possesses. He’s the Dalai Lama of junk food.

An eternal optimist, I will keep looking for nature’s tasty treats while making do with reliable junk food. Sounds peachy keen to me.