respite

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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.