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!)

 

 

A Minority at the Age of Majority

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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.

 

 

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.

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.

 

Discluded

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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.

 

Independence Day

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I am about to embark on another 8-day women’s trip to Israel. The purpose is to empower women to change the world through Jewish values that transform ourselves, our families, and our communities. Sounds great, right? No matter where you live, if you are a Jewish woman (or man – they offer men’s trips too) or are raising your children Jewish there may be a trip that you too can take – check out the website at http://www.jwrp.org and see for yourself.

What a treat to travel for 8 days on my own. Actually I will be with 11 other fabulous women from my local Jewish Community Center and we will be part of a larger group of 200 women from around the country and the world. I look forward to being able to think and act independently, without being someone’s wife, mother or daughter. I only have to follow the planned itinerary. I don’t have to worry about what my kids will or will not eat, if they’re tired or cranky. It’s a way to rediscover my own person-hood through a Jewish lens – what a novelty!

It’s a great time for me to go because two of my children are away at camp and two will be home in day camp. What a great way for my family to exercise their own independence, without big Mama running the show. Papa Bear will be in charge, in whom I have complete confidence. He will drive, shop for food, make the lunches, deal with the medication, go to the end-of-camp dance performance all while being way more fun than cranky old Mom.

One of the biggest gifts of leaving the kids with my husband, besides the obvious awesome trip experience, is that other than leaving one page of phone numbers and reminders, I do not have to leave detailed instructions. My hubby is engaged in all parts of our life so I don’t need to school him on what goes on around here while he’s at work. Okay, I do feel a teensy need to tell him that I will organize things to make it as easy for him as possible – after all, he will be working in between driving to and from camp.

“Really?” he said, “Do we have to do this dance where you try to convince me that it’s all going to be great fun? It is what it is. It will be fine. Go, lead your group, and have fun.”

Lesson learned. I will shut up and plan the best I can. He will deal with whatever comes up. He can help my daughter shop for whatever costumes she may need for her dance recital. He will rise each morning at 4:30 am to medicate our son with special needs, through his feeding tube, while he sleeps. He will write the children who are away at camp.

Let’s not forget the children’s independence here. When I tell some people my children will be at sleep-away camp all summer, I occasionally get a look of pity or horror – surely I must be an awful mother to send my children away. They love camp because they get to be their own person, independent of their parents. There is no one to nag them about how to act or what to wear. Sure, they have counselors but they care much less about the minutiae of life than a mother does.

Take for instance my fourteen-year-old son who left a week ago. I am loathe to look at the camp website to catch a glimpse of my precious child, but I briefly succumbed to peer pressure to take a peek. As expected, my son looked adorable and happy. It’s his fourth year and he asked to go for the whole summer – of course he’s happy. But does he have to wear that dorky camouflage hat that he pilfered from his brother? To make it worse, in my next email to him I felt the need to suggest that he not wear it all the time as it doesn’t really match any of his clothes and he looks super cute without it. I can’t believe I’m even admitting that I did that. Shame on me…leave the child to wear whatever he damn well pleases without me spying on him.

I told the children who will be home with their Dad that I care about three things, and in this order: the people in the house, the dog, and my potted outdoor plants. I trust them to help each other, feed the dog, and water the plants. Mostly they just need to take care of themselves. Yet another life lesson I’m imparting in my joyful absence.

So here’s to a happy independence day to all of you – in between barbecues and pool hopping, try and let a little personal freedom ring. I promise you’ll see fireworks.

Desperate for Respite

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I love the title of this essay and have been waiting for years to use it.  I always say this will be the title of my book, if I ever get around to writing one.

My disabled son will be going to sleep-away camp for two weeks soon, where he has gone for many years.  The camp specializes in caring for kids with chronic illnesses.

This Sunday, a week before he leaves, I am travelling to Israel on a women’s trip.  You must be desperate, you may think. Or crazy. Who goes on a trip to Israel in the middle of turmoil?  I am. This trip has been planned for months and I feel strongly that I need and want to go.

And yes, it gives me an extra week of respite from my child with special needs.

I don’t really feel as desperate these days as when my son was younger.  His health is stable as of late, so it’s his day-to-day care that becomes part of my daily grind.

Unlike typical people who graze when their stomachs tell them they’re hungry, I have to remind my son to “feed himself” 5-6 times a day with formula through his feeding tube.  He can do this independently. He is typical in that his face is generally glued to some sort of screen or device, so asking him to attend to this task progresses quickly from the nice, calm request of “Ben, please come feed yourself”  to “Ben, come feed yourself NOW!!”  It exponentially increases my shrew quotient.

Add the medication three times per day, and it’s a carefully orchestrated care plan that has become somewhat rote for me.  The trickiest time to medicate him is at 4:30 a.m.  Unfortunately, the sleep-to-wake autonomic process can cause my son to have one of his “crisis” episodes. The medication eases this transition so he can awaken and have a good day.  If I oversleep or set my alarm incorrectly, things go downhill very quickly.  My husband and I share much of our son’s care. I do the early morning medications and he does the last feeding before bedtime (when I’m usually asleep.) It works for us.

When we had our first child, I became aware of the constant competition between my husband and I about who was more tired.

“I’m so tired,” I’d say.

“No, I’m so tired,” he’d reply.

We agreed to acknowledge we are both exhausted and to just be kind to each other.  Being tired is a state of adulthood. Whining about it doesn’t make it any better.  Either get some sleep or stop talking about it.

So I don’t complain about the early morning medication.  As long as it keeps my son functioning and happy, it’s okay with me.  I appreciate the occasional break when I can allow my body to wake up at it’s natural time. Or an afternoon nap.

I will definitely welcome the separation. Even if my respite includes an occasional air raid siren or bomb shelter visit, it is a different stress and hardship from my daily life but one the Israelis know well.

Desperate for respite – from my home to the Middle East – it’s something everyone yearns for.