A Pleasant Surprise

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We drove our remaining child at home to his sleepaway camp last week, five hours from home. The first few hours were pleasant but around the halfway point it turned into a tense drive. Our 16-year-old son with Familial Dysautonomia, a genetic disease, had one of his episodes where he feels nauseous and retches to the point where he needs medication to stop it. The medicine helps him to sleep so his body can reset.

As he rested in the backseat, my husband and I were each in our own head, hating our son’s disease and the extra stress it adds to our lives. One minute, we were on the verge of dropping him off for twelve days, anticipating a festive trek to New York City before returning home. The next, we each wondered silently if our son would be okay for the drop-off. Fortunately he drifted off to sleep so we were relieved and optimistic that the day, and our vacation, would be salvaged.

I suggested to my husband that we make a pit-stop before getting to camp so upon arrival I would be calm instead of frantically looking for a restroom. It was a cloudy day with a bit of drizzling rain. We pulled off the road at a dismal looking gas station, wondering if they even had a bathroom as the building was so small and we didn’t see any bathroom doors on the outside.

It had been a long drive so I forged ahead. I walked through a tiny market and found there was a clearly marked “Womens” bathroom on the right and a “Mens” on the left. Channeling Julia Louis-Dreyfuss (Elaine) from the airplane episode of Seinfeld, I steeled myself and tentatively pushed open the bathroom door. Instead of the usual dirty, smelly, disgusting public bathroom, I walked into Nirvana – a brightly lit oasis of loveliness. Was I in the Twilight Zone? There were two stalls, and a counter with two sinks. A granite counter, or something that looked like granite. The whole room was extremely clean, almost as if I were in someone’s home who had cleaned especially for company. There were decorations and a sign saying “With God’s Help, Anything is Possible.” Even a clean, gas-station bathroom apparently.

The joy and gratitude I felt was immense. I almost did not want to leave my little slice of paradise, but life was outside that door waiting for me. Giddily, I asked my husband if he had as pleasant a bathroom experience as I had. He said it was the nicest gas station bathroom he too had ever been in. In the men’s bathroom there were antique car parts, highly polished and displayed as artwork on the walls, with plaques underneath them noting what make, model, and what part of the car it came from. We picked up drinks and were rung up by a man we assumed to be the owner. I gushed over his lovely bathroom and thanked him for his efforts. He modestly thanked us and wondered why most other gas stations don’t take the time to keep their bathrooms in decent shape.

This man’s establishment gets the gold-medal of gas station cleanliness in my book. For the rest of the trip, that bathroom became the benchmark against which all other bathrooms were measured, possibly going forward for the rest of my life.

I was in a bad way—tired, worried about my son and hoping my vacation wouldn’t be ruined. This pit-stop in rural New York was a beacon of kindness and caring that I apparently needed at just that moment. Its fresh scent, cleanliness and bounty of toilet paper, soap and paper towels gave me a big cosmic hug, restoring my faith that people are kind and considerate. This was the trip’s highlight, and we hadn’t even made it to Manhattan yet. Start spreading the news.

 

 

 

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.

A Glimmer of Hope

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Something unexpected happened while we were in Israel recently. We were having a Passover Seder in a banquet hall with several other families from our Jewish day school. There was a lull in the evening as people were eating and going back and forth to the buffet. Out of the corner of my eye, I noticed my sixteen-year-old son with special needs sitting on a sofa talking to someone. Not just a family member or a family friend, but a girl, and a teenage girl at that. A lovely younger sister of my older son’s classmates, with health challenges and issues of her own. What struck me was that they actually seemed to be engaged in conversation – something that is generally difficult for my son to sustain.

It was so adorable – it almost made me weep.

“What’d you talk about?” his siblings and I grilled him afterwards.

“We actually had a lot in common,” he said matter of factly. “We talked about tv and movies.” Ah, that made sense as these are some of his favorite things to discuss.

Still, I was touched at the sweetness of the interaction which allowed me to see my son in a different light – as a young man with the possibility of courtship. I felt as if I was channeling my mother and grandmother when I described what, to me, was a momentous event to my friends…”It was just darling,” I gushed.

The evening passed and the moment faded into a warm memory. Until I received an email from the young lady’s mother saying that her daughter wanted to go see a movie with my son. Be still my heart! I was elated. His life is rich with family, family friends, friendly professionals, and lovely volunteers. But it is rare that he gets invited to do something socially with a good old-fashioned friend.

“I want to go,” he eagerly stated.

“Do you know how to behave like a gentleman?” I joked with him.

He assured me that yes, he did. I was giddy with anticipation of the big “date,” although my son did not like to be teased about it and of course viewed it for what it was – going to the movies with a friend, who happens to be a girl. I showed restraint around him, spilling over with excitement to my sister, father and girlfriends.

It turned out to be a lovely, uneventful outing. After their dads helped buy the tickets, the two friends sat and watched a movie while happily munching on popcorn. Truth be told, my son hogged the popcorn, his companion reported when we picked them up.

“It was just so delicious,” he sheepishly admitted.

So much for his gentlemanly behavior. He acted like a typical teenager – rather than being thoroughly annoyed by this fact, I was overjoyed. Next time we’ll spring for the jumbo tub of popcorn. I can’t wait.

 

 

 

 

“It’s Appropriate”

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Has this ever happened to you? One of your children is watching something on a screen that seems questionable to you. You ask if it is appropriate for them. They assure you that, yes, it is appropriate.

“Oh. Okay,” you say.

You know they say this because they want you to go away and leave them in peace. You want the same thing, so you choose to believe them because sometimes you don’t feel like taking the time to investigate if it’s truly appropriate. Sure – I can count on my child to know what’s appropriate and what’s not, can’t I? The kids and I would agree on certain things that are clearly not appropriate, such as highly sexual content or gory violence – they wouldn’t want to watch these things anyway (not yet, at least.) It’s all the other things (like bad language, mature themes, silly reality shows) where the line is not always so clear.

Sometimes things are inappropriate but in the opposite direction – not mature enough. Take for instance my 16-year-old son with special needs. He has a penchant for watching shows that some might say are too young for him. I used to tell him he is too old to watch these shows.

“But I like them,” he told me.

Sigh. He likes them. Who am I to force him to watch shows that he doesn’t really get or enjoy, just because they are more age appropriate? For me, there’s a fine line between expecting him to act his age and allowing him to be how God made him. Where is the perfect balance? I’m always looking for it.

My daughter recently reported that this brother was watching “Family Guy.” Oh good, my husband and I thought – that’s semi-appropriate for a teenage boy. Then she told us that it was really a cover for him to watch a children’s show on the computer – he too clearly understands the whole “It’s Appropriate” game. Too bad this cognitive ability doesn’t actually transfer to age-appropriate television for him, but oh well. He did participate in a recent “Simpsons”-fest with his cousins, keeping him somewhat in the adolescent TV loop.

My daughter chastised me for allowing her brother to watch “baby” shows.

“Really? Do I need a critique of my parenting from you?” I asked.

Let me just say that she loves “Dance Moms” and God-knows what other shows that some may say are inappropriate for an 11-year-old girl. It’s amusing to me that my youngest thinks she is the maven of appropriate material. When she was nine she picked the song “Mean” by Taylor Swift to sing in a recital. It’s a great song. We both thought the tune was catchy but neither of us paid much attention to the words. I just thought she was so adorable. As I sat there watching her, I realized the song is about an abusive relationship and my stomach dropped to my toes.

Maybe not my best call in this grey area we call parenting, but the world didn’t come to an end. The video of her singing still makes me smile to this day. Is that really so inappropriate?

 

 

 

Look Away

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My eldest is leaving the house this month. Seniors at his school graduate in February and go on a three-month trip to Israel with a side-tour to Eastern Europe. He’ll leave a vacant bedroom and the family “hot-seat.” When you have several children, a parent’s attention shifts from child to child depending on who’s the neediest at the time. Our family configuration will change with the oldest gone. I have mixed emotions but mostly I’m happy for him as he sets off for the next phase of his life. Full disclosure – I’m also sad to lose the extra driver in my family. He’s been driving his 13-year-old brother to school for the past year, a job which I now get to resume. I enjoyed the hiatus but am intrigued by the opportunities this presents. I was driving my two youngest to school recently and asked my son if he and his brother talked much when they drove to school together.

“Some,” he said, “but usually we’re pretty tired.”

“Well, now you and I will get lots of time to talk,” I enthusiastically said.

In my rear view mirror, this prompted an excellent, textbook eye-roll from my daughter. I knew I was on to something.

With the eldest leaving the nest, I can turn my attention to the other children in the house. We’re done with driving lessons, college entrance exams, the college search, etc with the first-born. Sure, there will be other things we need to teach him but from a different vantage point. It won’t be that daily, up-close-in-your-face kind of parenting.

It’s the lucky children who remain in the house who are the recipients of our wisdom and attention, whether they want it or not. Next in the birth order in our family is our son with special needs. He gets a lot of attention for his health issues – he has a feeding tube and a medication schedule, but truthfully – as long as he is relatively healthy and happy our attention stops there. It’s the third child who is next in line for our scrutiny. I’m sure he has no idea what’s in store for him. I’m looking forward to getting to know this creature again, now that he’s smack in the middle of the teenage morphing years. Maybe now that I’ve practiced my parenting skills on my eldest, I can perfect them with this child. Or maybe I’ve learned what’s important and I just won’t care about the same stuff. It’s kind of like a weird science experiment – so many variables and hypotheses.

Strangely, I find myself thinking of the swimming pool of all places. For a few years, I volunteered as a “stroke and turn” judge for our neighborhood summer swim team. I had to scan three of the six lanes of the pool to make sure the swimmers were swimming “legally.” If there happened to be only one swimmer and two empty lanes, we were taught to keep scanning as if there were three swimmers so the one swimmer didn’t have a disadvantage of being watched every moment. Each swimmer should benefit from the judge’s gaze being averted.

This struck me as a great metaphor for parenting. I don’t think it serves my children well to have my attention every minute, all the time. I am constantly scanning their lives while deliberately looking away occasionally. Nobody wants to be watched all the time.

By looking away, I may miss the occasional “illegal” strokes or turns in my kids’ lives. Let’s hope my parental scanner will pick up the stuff that really counts.

You Can’t Take it With You

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I’ve got too much stuff. The trickle-down effect of my father cleaning out his house is that I am forced to clear out mine. I love getting rid of things almost as much as I like getting new things. My husband thinks I am missing the sentimentality gene, but I disagree. When push comes to shove I am just not that attached to material things.

My father is the anti-pack-rat. Nothing collects dust in his house. If you leave a glass on the counter for more than two minutes it is quickly put into the dishwasher when you’re looking the other way. He is on a mission to rid himself of all things superfluous. I admire this – it’s quite Zen of him. My sister jokes that he will soon just have the clothes on his back and his car key. He makes daily visits to dumpsters and Good Will. I get regular visits when he brings things he thinks might hold sentimental value for me.

He called me to ask about my late mother’s voluminous and meticulous medical files.

“Get rid of them,” I said.

While keeping notes gave my mother a feeling of control over her various ailments, it would just make me sad to look through those piles. Why remember the bad things in detail? I know the basics of her medical history as it might pertain to me or my children. Beyond that, what does it matter?

I keep only scant records of my special needs son’s medical and educational journeys. I don’t want to read back on years of schooling and testing to remind me that his life has been hard. I don’t care to remember the annual school planning meetings, various testing, and assessments. I keep things that make me remember the good times of his life so far, not the mediocre or painful.

We’ve cleaned off the bookshelves – no one wants to read an old book with yellowed pages. We got rid of the crib and the highchair, though my husband objected. Really? Our “baby” is almost eleven. Carpet remnants, old paint, old toys, out of style clothes – gone. Looking through a box of things from my childhood, I found a small bean-bag stuffed animal – a frog – with a missing button eye.

“Do I save something if I have no recollection of why I kept it?” I asked my husband.

“Maybe you can find someone who can help you remember,” he answered, generally erring on the side of caution when it comes to getting rid of things.

I’ll keep it for a little longer in case the memory comes to me or I find someone who can fill in the missing piece, although I’m not sure who that might be. If not, out it goes.

I actually feel lighter when I look around my house after a good purging. I see things that are being used and enhance my life instead of feeling bogged down by remnants of the past.

It’s only stuff. Lighten up.

 

Bittersweet Sixteen

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My son with special needs turned sixteen last week. My father reminded me to say a prayer, expressing gratitude for having raised him to this point in time. I am thankful that he is happy, loved, that he walks and talks.

It is, however, bittersweet. Oddly enough, I am most sad that he is not on his way to driving a car – the highlight of turning sixteen for most teenagers in the United States. The ability to leave the house and your family and find your own way is liberating.  I still love to hop in my car and drive away sometimes. Except this time I’m running away from my children. Sweet separation. My eldest son is seventeen and he drives. His little sister once asked where her brother, the new driver, was.

“Out,” I answered.

“Why?” she asked.

“Because he can,” I told her.

I vividly recall my elation at getting my license and the incredible freedom I felt. I remember going “out” as often as I could, to that elusive place where parents can’t find you. Nowadays children can’t be as unavailable as they’d probably like, poor things, because of the homing devices that are their cell phones.

It makes me sad that my second son cannot go “out,” although he doesn’t seem to want to. He is not focused at all on the fact that he is not on the driving trajectory. In fact, he would probably be happy to stay “in” for the rest of his life. He’s happy surrounded by his family and his beloved video games. It’s tempting to let him stay in forever, to keep him safe and sound.

“Maybe he could try taking the driver’s ed course, to see if he could even pass?” I mused to my husband and other children.

They all dismissed the idea as ludicrous. He would be a danger to himself and others, they argued. His lack of attention to the world around him could have disastrous consequences. Are we selling him short? Am I crazy and deluded? Maybe a little.

It’s part of the ongoing see-saw of raising a differently-abled child. I am grateful for the things he is able to do but the grief for what he can’t do lurks in the background. His brothers are tall, strapping young men like their father. I encourage this son to consume as many calories as he can, so that maybe he can be as tall as his five-foot-four-inch mother. I cling to things I may have a touch of control over, to maintain an illusion of normalcy.

There is a popular essay which is given to many parents when they have a disabled child. It is called “Welcome to Holland.” The gist of it is that you were planning a trip to Italy and were shocked to find you arrived in Holland. Once getting over your disappointment at landing at the wrong destination, you look around and discover the beautiful things in Holland. It’s a lovely metaphor to try to make you feel better about the immense sadness and disappointment you feel when you have a less-than-perfect child.

It works for a while, perhaps getting you through the early years of crushing hardship and disbelief. I have a group of women friends who I met in a support group ten years ago, all who have disabled children. My “Special Mom” friends, I call them.

“Holland sucks,” we wholeheartedly agree.

But here we are. We strive to savor the sweet and tolerate the bittersweet.

So Happy Birthday to my young man. Who cares that driving’s not in your future? I’ll teach you how to ride the bus.