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Almost Normal

Almost Normal

I always considered "being normal" the most important quality in a person. Then I had a baby with Down syndrome.


When I was growing up, I considered "being normal" the biggest compliment. Moving to Israel at a young age and switching schools every year or two implanted in me a basic yearning just to fit in and be like everyone else.

When I became a young adult, "normalcy" was the overriding, most important quality in a person. I associated a lot of things with "being normal" – being emotionally healthy, balanced, relatively confident, down-to-earth, religious but not fanatical, spiritual but not flaky. In short, someone more or less like me – preferably more.

At some point "being normal" became synonymous with being successful and having a relatively trouble-free life. Being a failure or burdened with problems would mean I was pitiful, the very worst possible thing to be.

People frequently confirmed to me that I was, in fact, "extremely normal." As a teacher of young women, I would become my students' friend and confidante since I was "so normal." I never ended up being the butt of any "Purim spiel" jokes; the students couldn't find much to make fun of – no radical quirks or weirdness – which worked just fine for me.

I got married to a super-normal guy at the normal age of 22 – not too young, not too old – and had my first baby – a girl -- two years later; not too soon, not too late.

I think that was the last very normal event in my life.

Things began to take a turn for the "unusual" a couple of years later. Suffice it to say that having children wasn't coming as easily for me as it did for everyone else. After a few miscarriages, punctuated by long breaks where I didn't conceive, we somehow, thank God, managed to have three terrific kids spaced about four years apart, and I was ready to get back to the business of being a "normal" family.

This wasn't as easy at it sounds. We live in Jerusalem, in a densely populated, religious neighborhood. By densely populated I mean mostly by children. The average number of kids per family seems to be a dozen. Okay, maybe not a dozen, but seven or eight, and the moms who have only two or three are not much older than 20, and all three kids are under the age of two and a half.

God forbid anyone should consider me a "nebach," pathetic. Oh, no. Everything was exactly how I wanted it to be.

So I wasn't quite as normal as I had always hoped to be. I compensated by idealizing the particular life-style I had as a result of not always needing to be at home with kids. I had an enjoyable part-time teaching job that kept me intellectually and spiritually stimulated. I took parenting courses to try and become the best mother I could be, and convinced myself and others that I wouldn't enjoy dealing with babies day after day, year after year. I told myself that quality was so much more important than quantity (and my kids were, after all, the brightest and most beautiful in the neighborhood!).

So I was certainly not to be pitied. God forbid anyone should consider me a "nebach," pathetic. Oh, no. Everything was exactly how I wanted it to be. I still had it all together and was super-normal. Everyone said so.

When I became pregnant with my fourth child and everything seemed to be going well, I finally began to breathe more easily. Things were going to be just fine now. I'll be a "normal" mommy with baby in tow, a stroller with which to walk my daily fast-paced jaunt to town, and with which I could now frequent the playground with my other children as well. And four kids is pretty normal, isn't it?

Then my baby boy was born. And he had Down syndrome.

Out went the visions of carefree afternoons in the park, chatting and exchanging witty anecdotes about our children with the other young mothers. In came the horrifying thoughts of the neighbors' pity, my parents' sadness for my sake, my friends and relatives feeling bad for me, and the label "nebach" in big, bold letters.

Almost secondary to all these thoughts were the real concerns and worries about raising a child with special needs -- the time and effort this would entail and how much of a change I would need to make in my life.

At my son's bris, all I could think was, "Act normal and happy like nothing's wrong. Smile, go through the motions, and don't let anyone have reason to feel bad for you."

As some of my neighbors were leaving, one said, "You know, you truly are amazing." All the others nodded in agreement as I cringed inside. Didn't they know that's exactly what I didn't want to be? "I just want to be normal!" I wanted to scream.

Now, eight months later, this remains my greatest challenge. Yes, I am totally in love with my adorable little boy and I find caring for him as stimulating and fulfilling as for any of my other kids, if not more so. Each sign of progress is met with cries of excitement and celebration, and at times I even feel exhilarated. But I still haven't let go of the normalcy dream. To a certain extent, I still haven't accepted the fact that my Yehuda Meir and, by proxy, my family and I, will never be "normal."

Sometimes I avoid mentioning it to people who know I had a baby but don't know about the Down syndrome. I figure they can find out from someone else and I can avoid having to deal with their reaction. That fleeting shadow of horror that crosses their faces before it's replaced by a half-smile of pity and concern, or a piece of well-meaning advice or consolation, like, "I heard they can be concert pianists -- they're very musical," or "God only gives challenges to great people who can handle them."

I find it difficult associating myself with other parents of kids with disabilities. What in the world am I, queen of normalcy, doing in a room full of people like this? It can't be that I belong here, can it? I will occasionally find a long-discarded, quickly-jotted phone number of someone to call "when you're ready to talk" scrunched up at the bottom of our messy kitchen drawer. Who was I kidding? I wasn't about to join a support group or anything so obviously pathetic!

I grasp at any compliment such as: "He's so cute, you can't even tell he has Downs" or "He's doing everything a regular kid his age does," to confirm to myself once again that hey, we are the most normal people in this abnormal group.

I am forced to live with the realization that to be "normal" is something entirely different from my original misconception.

Just about all the people I've encountered through the shared reality of having a child with disabilities have been extremely impressive. Typically they are caring, driven, intelligent and emotionally balanced, going to heroic lengths to do what's best for their children. Adjectives like "weak" or "pathetic" don't even enter the picture.

I realize that to be truly "normal" is to be confident enough with yourself and the situation you have been given by the Almighty that you are able to ask for help and advice if you need it, and to openly admit that you may not have it all together all the time. And that it's arrogant to think otherwise… maybe even a little pathetic.

As our sages state in Ethics of the Fathers, "One who runs after honor, honor flees from him. One who flees from honor, honor runs after him."

If a year ago someone would have looked into the future and told me that I was going to become a mother of a child with Downs, I would have laughed it off as impossible. "The Almighty knows that I could not handle that!"

Well, I guess God, in His infinite wisdom and humor, has greater expectations of me than I of myself. He is not going to let me run away from one of the primary issues I need to work on.

I still hate it when I sense people's pity, and to be honest it's hard to see that changing any time soon. But as I integrate the reality of my particular abnormal situation, perhaps someday I will acquire the necessary humility to be truly "normal."

Click here to read related article, "Raising Yehuda."

January 15, 2005

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Visitor Comments: 44

(44) Sara Katz, October 30, 2005 12:00 AM

A Very Honest Article

I have a daughter with Down Syndrome who is almost two years old. My husband and I, along with our extended families, get an incredible amount of enjoyment from her. The best advice that we got from our Rabbi when she was born was not to hide her. He said that if we are open about the fact that our child has a disability and everyone sees that we are comfortable with it, they will be more comfortable and open when dealing with us. This turned out to be very true. My husband took these words very literally and we took her to every occasion that we went for her first year. Everyone got to know her and she is accepted wholeheartedly wherever we go.

(43) Anonymous, June 7, 2005 12:00 AM

Beautifully written article

Your honest, heartwarming and gutsy article made me cry. I was eleven when my brother with Down's was born. I, too, wanted nothing more than he should be normal. My love for him, however, overcame my complexes and I became the proudest sister in the world. Dina, today my brother is almost forty and lives a wonderful life. He goes to minyan 3 times a day, travels to his work and is a fully functioning human being. Normal? It's overrated anyway! Much nachas and hatzlocha with all you children - they are lucky to have you for their mom.

(42) Anonymous, March 13, 2005 12:00 AM

You're doing great, keep it up!

Dina, when I had a little girl with Down's Syndrome, I told everyone she's "abnormal", which means "above normal". She's alot more normal than the "normal" kids!
All the very best!

(41) MrsEener, January 22, 2005 12:00 AM

I can also empathize

I have a 13 month daughter (also my fouth child) with CHARGE syndrome. It has been difficult. She's been in the hospital almost half her short life and she has a trach and a g-button. But she is such a fantastic, wonderful child, and it's so exciting to watch her grow and develop. It's so difficult for someone who has never been close with a "special" child (or adult) to feel at least a little bit of pity for us. But they just don't understand. If I were to tell them I feel blessed, even somewhat lucky, they would probably think "oh, she's just trying to look on the bright side."

I also don't feel I deserve any special admiration, which some people express openly (as opposed to pity which is implied or you can just see it in their face). I'm just a mother trying to do my best for my children. My husband said to me once only half-jokingly "I used to think HaShem only sent special children to special parents. I guess I was wrong."

(40) bonita henderson, January 21, 2005 12:00 AM

This, too, is a part of me

I have no children, I know of nobody that has Down's. I read this essay for myself. For me.
The intellectual part of me read it...the part that is smart enough to outwit most of my neighbors, to grab the best of the goodies off the pile. The part of me that is like a gnat in the eyes of my Creator.
I read it for the part of me that is "slow". The part that doesn't understand this world, the greed, the malice, the bad things.The part of me that has no concept of malice, or envy, or old grudges, or fresh insults.
The part of myself that should be a blessing to those around me.
I reckon that little Yehuda is a great teacher already. May you be further blessed.

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