disabled child

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“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?

 

 

 

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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.

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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.

 

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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.

 

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“Not Guilty”

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My husband is a very competent, caring person. While I was away on a recent trip to Israel, he managed to successfully get all four of our children off to camp. Although this is an impressive feat, let’s be real – yours truly made the fifty trips to Target and did the actual packing prior to my trip.

I called him on my last day in Israel as he was driving our son with special needs, the remaining child at home,  to sleep-away camp.

“Ben had a bad day yesterday,” he reported.

“I’m sorry,” I said.

“It’s not your fault,” he replied.

I appreciated his kindness. I felt sad that my son had a bad day and that my husband had to deal with the unpleasantness for several hours. Usually I am the one at home who has to deal with these episodes.  I am thankful he’s a hands-on dad. And that he didn’t try to make me feel bad for being away from home.

I hung up the phone and told my friends what had happened.

“I don’t feel guilty,” I explained, “I just feel badly for them.”

“What a novel concept,” one of them said, as if a light bulb had gone off over her head.

Feeling guilt, like so many other things in life, is a choice, and it is one that I don’t often choose to make.  I come by a guilt-free disposition naturally. My family doesn’t do the stereotypical “Jewish” guilt. In fact I hate when people act like guilt is part of our heritage.  Am I perfect? No. Do I make mistakes? Yes. I try to learn from them and do better the next time. Done. Let’s move on people, there is nothing to see here.

Women often feel self-centered or selfish when they do something for themselves or not with their families. I say nay-nay. In the blink of an eye my kids will be gone. I want to keep growing and enjoying life in ways that are sometimes independent of my family. I don’t want to get mired in feeling badly for what I have or have not done.

When I got home, my husband was quite proud of how he managed all of the household duties and challenges on top of his job. It reminded me of the time he came home from a business trip and my chest heaved with pride having fixed a broken toilet, as if it was a major engineering feat. We both praised each other even though I’m pretty sure each of us was secretly thinking, “Do you want a freakin’ medal?”

I returned from my trip energized. A whole week of being Susan, not someone’s wife or mother, was refreshing.

Selfish? I don’t think so. Self-preservation is more like it.

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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.

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The “Joy” of Air Travel

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We recently went on a family trip. It’s easier now that our children are older.  All they need is their screens and some sugar and they are good.  We bring our 15-year-old’s wheelchair, that he uses occasionally, to make it easier getting through the airport.  Adding to the stress of travel is the anticipatory stress of going through security because of my son’s feeding-tube supplies and medications.

On the first leg of our trip, I made the security people aware that I had medical liquids in my backpack. They took my son’s wheelchair and simply let the bag go through the machine – it was so easy.  What a relief! I was not so fortunate on my return flight. I was alone with my two eldest sons on the way home.

Again, they took the wheelchair through. But when I told them I had medical liquids, they pulled me aside and looked at the contents: three cans of formula and a small bottle of liquid medication. I was given a choice.  They could open the cans of formula to test them; but then I would not have formula to feed my son. Or they could search through my bags and thoroughly pat me down.  Really? I’m just a middle-aged lady trying to get from Point A to Point B.

I had no choice and felt like a cornered animal. They searched through everything in my backpack and purse. Then I had to submit to the pat-down.  They called a woman TSA officer over to do the honors.  I wanted to cry. I stood there as she explained what she was going to do. She patted down my body and checked the waistline of my pants. Normally one to find the humor in things, I could find nothing funny about this.  I had to take off my shoes again to be checked. I quietly cooperated when what I really wanted to do was scream. Other passengers tried to avert their eyes but gave me pitying looks, glancing between me and my child in the wheelchair.

It was such an indignity and a dehumanizing experience.

“What’s dehumanizing?” my disabled son asked as he listened to me complain to my other son when it was over and we were walking to our gate.

“It’s when someone makes you feel like you are not a human being, but like an animal or an object,” I told him.

I realize we have an enormous country with thousands of airports. And ever since September 11th, authorities have tried to do many things to make air travel safer. Some things simply give us the illusion of safety.  The TSA workers are just doing their job but they do not make me feel any safer.

Some people may say I should just avoid flying.  I tolerate the basic stupidities everyone must go through to get where I want to go.   I leave my liquid deodorant and hair gel in my checked luggage, even though I think it’s pointless.  I can’t do that with my son’s medical supplies. It’s the senselessness of a one-size-fits-all screening process that sends me over the edge. Are the skies really safer with random, inconsistent screening?

There must be a better way.

 

 

 

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I Don’t Wanna

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Several years back there was a scene on one of my favorite television shows, Will & Grace, where Grace asks Will, her best friend, to walk her down the aisle for her wedding.

“I don’t wanna,” he replied.

“You don’t wanna?” she asked, incredulously.

I have adopted this as one of my favorite mantras.

Most everybody has experienced this feeling of wanting to avoid something hard or painful, or just plain inconvenient.  Like most people, I’ve got lots of balls in the air that I’m juggling, and most days I keep those balls in the air. Occasionally they come crashing down.  When that happens, what I want to do most is simply stick my head in the sand.  Because of the excellent writers of a hit sitcom, I now have the words to apply to these feelings.

Sometimes it’s less serious situations when the “I Don’t Wanna” comes into play.  For instance, a social obligation, a work function, or a school activity…ring any bells?

Usually it’s the big matzah balls of life that trigger my I don’t wannas.  For instance, last summer the sleep-away camp doctor called about my daughter.

“Have you noticed a goiter on your daughter’s neck?” she asked.

Anyone who’s watched Seinfeld knows that I imagined a goiter the size of a second head. I hadn’t seen my child for three weeks, but I had never noticed a goiter before she left.  Time for a maternal gut-check—Did I not notice a goiter? What kind of mother could have missed a goiter?  Fortunately, her goiter was in reality very subtle and unnoticeable to the untrained eye.  It turned out she has Hashimoto’s Disease, an autoimmune disease that attacks the thyroid, is easily treatable and for which you see an endocrinologist. Seriously? This is my fourth kid and I have to deal with new and exotic illnesses? I really don’t wanna.

On a bigger scale, it seems that I have to begin contemplating how the rest of my disabled son’s high school career will play out.  I met with a “transition” counselor at his school recently.  She gave me a notebook with a lot of information and advice on applying for services with various agencies and scenarios of the different options available to my son.

First of all, the notebook made me chuckle. Through various projects and committees over the years, I have categorized people into “notebook” people or “folder” people.  Notebook people are extremely organized, with papers neatly arranged by tabs.  Folder people are those who have all of their papers shoved into a folder.  I fall into the latter category.  I think of myself as a relatively organized person and can put my hands on the papers I need – I’m just not motivated to put them into notebook form.

But I digress.

I don’t wanna think about the next few years of my son’s life. I want a typical fifteen-year-old with typical fifteen-year-old problems. The thought of applications, forms, evaluations, assessments, meetings and decision-making makes my chest tighten. I have put the notebook away for a while but I know I will open it one of these days and do the things I need to do.

I realize that “I Don’t Wanna” is essentially a manifestation of denial. I suspect it is a universal feeling that people use to cope with stressful situations. Denial often gets a bad rap, but I find it can be healthy in small doses.  A petulant child lives within me and sometimes pays me a visit in trying times.  Instead of crossing my arms and stomping my feet, I just enjoy a few quiet days of  “I don’t wanna” and my semi-ignorant bliss before doing what needs to be done.

You could try it sometime, if you wanna.

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The Monster in my House

My family looks like a regular family. Mom, Dad, four kids, a dog. We joke that even our special needs child is pretty run-of-the-mill in terms of a disabled kid, even though he has a genetic disease called Familial Dysautonomia (FD).  Sure, he has a feeding tube but that has just become the norm for him and for us as well. Our life hums along like everyone else’s.

But periodically the awful disease that is usually manageable rears its ugly head and inhabits my son’s body.  When it does, it feels like there is a monster in the house.  The poor child “feels awful” and has uncontrollable retching and oral secretions.  When this happens, he sequesters himself in a small TV room in our house where we have a supply of towels just for this purpose.  He lies on the ground and writhes around, retching and emitting secretions.  Either my husband or myself (usually me, since I’m the stay at home mom) sit with him, wipe his mouth, change the towels, and administer medicine repeatedly (through his g-tube and rectally)  until it is finally absorbed by his wracked body and puts him into a deep sleep.  The retching noises are other worldly, and not in a good way.  At the suggestion of a therapist years ago, I don headphones and listen to music to help drown out the awful noise while doing my best to remain loving and focused on relieving his misery.  This process can take two to three hours, which feels like an eternity.

If my other children are home, they scatter to distant parts of the house so they don’t have to hear their brother.  They fend for themselves and hope it doesn’t last too long.  They suffer along with him and me.

When at last he falls asleep, I sit and wait for 10-15 minutes to make sure it is really over.  Sometimes, the episode is like the burning embers of a fire and will reignite.  It is a tenuous, stressful, awful time.  I minimize all noise in the house to help him drop into a deep sleep.  If it starts again, I am like a wild animal, feeling trapped and helpless.  Sometimes it brings out the monster in me.  I know it’s not my son’s fault, though he always apologizes.

“I’m sorry Mommy,” he says.

“It’s not your fault, Ben.  It’s FD’s fault,” I reply, trying to keep the desperation and agitation out of my voice. I am not always successful.

We hate FD.

I am amused when people say what an amazing mother I am.  I am not amazing.  This is what people say when they are really thinking, “I could never deal with that.  Thank God that’s not me.”  I am an ordinary mother dealing with an extraordinary disease.  I am not unique.  Many people suffer in their houses too, with their own monsters—disabled children, mental illness, sickness.

Oddly, I don’t usually feel anger that this is my life.  I do not believe that God gave me this child because I can “handle it;” in fact, it’s annoying when people suggest this to me.  This child is just one of my kids.  He reminds me not to sweat the small stuff.  To enjoy each day.  To tend to my relationships.

Our family is bound together by many things, and this disease is part of the package.  We all are happy and relieved when it goes away and our sunny, happy boy returns.  The aftermath of these “crises” is like having  post-traumatic stress disorder.  We are on pins and needles for a few days. After an awful episode, if we hear him playing Wii in the basement, every noise sounds like a retch.    When I picked up my other kids from school the other day, one of my son’s said, “You are in a good mood.  Ben must have had a good day.”

We cherish the good days and muddle through the bad ones.

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Evolution of a Parent

My 15 year old son has a genetic disorder called Familial Dysautonomia.  Search it and you can learn all about this awful disease.  Ben is our 2nd child, 16 months younger than his older brother.  Since our first child was typical, it was obvious to us right away that something was wrong with our second child.

He was unable to breast feed, took forever to drink a bottle, seemed to have a lot of reflux and projectile vomiting.  At six months I took him to the emergency room because I thought he sounded horribly “junky” in his breathing.  It was during that hospital admission when it was discovered that he was aspirating when he drank a bottle.  They gave him a nasal-gastric tube, followed a few months later by a gastrostomy tube (since the aspiration had not resolved.)  After visits to many specialists, the mystery of what ailed him was discovered when Ben was one year old.  As awful as it is to get a diagnosis, it is comforting to know what is wrong and have a medical team to guide you along the way. And fortunately, one of the characteristics of people with FD is a sunny disposition when they are feeling well.  Ben is blessed with this disposition, which is an asset to our family – we get to skip the sullen teenage years with him.

I give you this background to set the stage for raising this child.  We did everything we were supposed to do: early intervention, first in our house, then in special preschool.  Speech therapy, physical therapy, occupational therapy.  Individual Education Plans (IEPs), special ed, regular ed.  Ben always seemed to be just a little behind and we worked hard to keep him as “normal” as possible. As his peers and siblings aged, the gap became more pronounced.  His limitations became more obvious.  We came to accept that Ben is probably not college bound; that hopefully he will get a high school diploma.  If not, we will still help him get a job where he can be productive and happy.

As he’s aged, Ben’s balance and gait have gotten worse.  His stamina is not great and it is difficult for him to walk long distances.  Last summer, we had him use a wheelchair for the first time.  We were in Boston on a family vacation and Ben had had one of his “crises” (a constellation of symptoms, including a very high heart rate, nausea and uncontrollable retching) that required heavy medication to put him to sleep so his body could “reset.”  He was so lethargic, he required a wheelchair at the Aquarium so we and our other 3 children were not stuck in the hotel room for the day.  Ben was thrilled and the other kids thought it was novel.  My husband and I exchanged a meaningful glance.  This was a huge milestone for us as parents of this disabled child.  It was a very public admission that he is fragile and weak and will continue to be so. Our family has to adapt to an ever changing reality.  It made us very sad, but it salvaged the day.

We decided to buy Ben his own wheelchair this past summer.  Annual visits to New York City to see Ben’s specialists, which we combine with a family trip to see the sights, led us to get the chair to avoid dragging him on an unrelenting march across Manhattan in 90 degree heat.

Recently we were in a Smithsonian Museum to see an I-Max movie.  We forgot our wheelchair but came across the ones for lending in the museum.  It occurred to me as we pushed Ben around that this was a good thing for him.  He seemed so much more engaged in the environment as he comfortably sat in the wheelchair, instead of dragging around, squatting every few steps to rest.  And because it was more pleasant for him, it was more pleasant for us.  We could enjoy his company instead of being dragged down by it.

A person can learn to accept a lot, as time goes on.  The stares of others, wondering what’s wrong with your child.  The curious questions about your son’s feeding tube.  Ben’s siblings take it all in stride.  I suppose they follow our lead, as we have always tried to be as normal a family as possible.  We had two more children after Ben, so that he would be part of a “pack.”  His siblings and our family’s circle of friends are his friends and his support system.

It’s not the family we envisioned, but it is ours and we love it….most of the time.