How would people react? I did not want pity. But pity was the last vibe circulating in the hotel conference room
Mazel tov! L’chayim! Another engagement! Without lockdowns. We could make this wedding in an actual hall. Whoopee! A whole wedding with no masks and gloves!
I threw myself into the preparations. This was such a different experience from our previous Covid engagement. Stores were open! The credit card was smoking! I ran around with the kallah from store to store in search of the perfect brand of dishtowels.
I filled myself up with this simchah to plug the hole that still throbbed from Chezky’s absence. But I was honest enough to know that had Chezky been home, I never would’ve had the time to spend on all these fun and frivolous errands.
Part of my brain was still so habitually connected to him. At any given time I’d think: Where’s Chezky? Who’s watching him? What time is it? Did he have his meds? This had been second nature for me for so many years, it was taking time to deprogram myself.
For his part, Chezky was thrilled with the new simchah and his new brother-in-law. And especially the new suit and tie I bought him. He was settling down in his dirah, but was still very homesick. So much for those who assured me that this was going to become his real home away from home. Chezky wasn’t changing loyalties that fast.
It was four weeks before the chasunah when I saw the advertisement.
Chaim V’Chessed was sponsoring their first Moms of Special Needs Retreat — a two-day getaway planned for English speaking moms.
I was pleased to see this initiative; this was something a lot of people would benefit from. Then I went on with my day.
But my husband had also seen the ad. “I think you should go to this retreat,” he offered.
Me? Go away for two days?
“What about Chez—” No, right. There were no worries about who would watch Chezky.
“But we’re making a chasunah in a month.” I grabbed the excuse. I simply did not go on retreats to sit around and schmooze about the difficulties of getting government handicap funding or whatever. That was for other women.
“Go,” my husband insisted. “You deserve the break.”
Would it be a break? Or would it break something in me to so publicly associate myself with the pain of years of living with a child with a handicap?
Yet somehow I found myself surrounded by 100 women, all with name tags, all brightly enjoying activities and a superb buffet lunch as we headed down to Yam Hamelach.
At first I couldn’t even put on my name tag. I felt like I was about to publicly announce, Hi! My name is Tzippi, and I have a special needs son.
How would people react? I did not want pity. But pity was the last vibe circulating in the hotel conference room. Instead, there was such synergy as women of all ages enjoyed, relaxed — and yes, some shared their stories.
There were all types of special needs represented here. I was in awe of those who were dealing with huge physical challenges. How did one get up in the morning and get their kids out to school after having spent yet another night in the emergency room? How did that woman, who looked half my age, have the koach to laugh and volunteer to be captain for a quick game, when she’d just admitted her child was now back in a physical therapy rehab hospital for the third time? How did these women do that?
It didn’t take a Freudian analyst to realize that I was downplaying my own experiences with mental illness. C’mon, anyone could take care of Chezky. He was mostly fine (except when he wasn’t). And please, it wasn’t such a biggie to deal with meltdowns (well, also psychotic attacks…). But wheelchairs? And respirators? And injections? That was awe-inspiring.
It took me until day two to finally open up about my own challenges. “Yeah, I have a son with ASD,” I said lightly. And the earth did not spin off its axis. Chezky’s diagnosis and so much of his behavior had been such a secret weight on me for so long. And for what? Shidduchim? Hey, we’d already proved that there were at least two people willing to take on our baggage. Did I think no one would understand? Well, here was a whole group of women who clearly did get it.
So I threw caution to the winds and spent some time in the pool with a group of women discussing the pros and cons of DIR Floortime and why our kids refused to eat fish. Normal down-timing with a normal bunch of women all of whom lived with not-normal daily.
By the time we pulled into the last stop of the retreat, Minchah at Kever Rochel, I didn’t want the retreat to end.
The words of the last speaker I had just heard were echoing in my ears. She’d spoken of her son who was severely handicapped. And of her thoughts one morning as she said birchos hashachar. “If my son could speak — which he cannot — but if he could, which one of these brachos could he relate to? He cannot stand straight, he’s blind as well. But then I realized, there is one brachah that speaks to him always: shelo asani goy.”
Chezky was Hashem’s child. And so was I.
Walking up to the velvet covering that surrounds the actual kever, I paused, suddenly remembering Chezky’s words so long ago in that hospital ward. Mommy, you are Rochel Imeinu.
I kissed the covering and whispered, Mama Rochel, I know you understand me. I tried. I’ve always tried to be a good enough mother, to relate to each one of my children. Please, please, ask from the Kisei Hakavod that each one of my children should be matzliach in fulfilling their potential. Chezky’s face filled my mind — his smile, his twinkling eyes, his zany sense of humor.
Chezky, I love you. And I will continue trying to make sure you have what you need — always.
I arrived home from the retreat rejuvenated, relaxed, and most of all, revealed. My name is Tzippi, and I am the proud mother of a special needs son.
To be continued…
(Originally featured in Family First, Issue 849)
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