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Thursday, November 6, 2008

You Don't Look Like the Mom of a Special Needs Child...

I will preface this post by saying that I am not angry at all, remotely insulted, or anything of the sort by the conversation I had with a friend of mine yesterday. We were talking about something (I really have no recollection what the topic was) and she said to me:

"Well Sara, you don't really look like the parent of a special needs child. You really have it together"

I kind of ignored the statement, we finished the conversation, and hung up. She called be back ten minutes later all afraid that I was offended. Which I wasn't. I was more confused.

What is a "parent of a special needs child" supposed to look like? Frazzled? Ungroomed? Walking around crying? Disorganized? Since Dovi has FD I'm supposed to completely lose control over myself and my self dignity?

I've had another conversation with another good friend of mine, about the concept in Judaism of everyone having their "pekalah". A pekalah translates from Yiddish, I believe, as a "sack"-meaning that everyone has their own little sack of problems in life. No one has a perfect life. Everyone has problems, issues, struggles.

Some people's are merely more visible than others. One person might look amazing but have an awful marriage or struggle to pay the bills. Another person might have money coming out of their ears but struggles with their children, or struggles even having children. Everyone has something. But people still manage to carry on in their lives, with their struggles, as functional, groomed, rational adults.

It just so happens that my "pekalah" is a bit more visible, a bit more obvious than everyone else's. When I walk down the street, pushing Dovi in his wheelchair, you see him. You immediately recognize my very obvious struggles in life. And I'm not embarrassed of Dovi, or his struggles. I give him his formula in the park, he goes to synagogue on Saturday mornings hooked up to his feeding pump.

I push his wheelchair with pride. Look at him! Look how awesome he is!!

But why is the fact that he is disabled supposed to equal out to me being a flustered mess? Why do I have to be congratulated for being a functional, rational adult? For my house being clean, my walls painted and not colored on, laundry done, dinner cooked, for being groomed and have a smile on my face?

Everyone has something.

Mine is just a heck of a lot more visible than yours.

11 comments:

Haley Nicodemus said...

What an awesome post! Your wording was perfect!

Aaron said...

That about sums it up. This one should get passed around the whole web. It would do a lot of good for a lot of people to hear it.

Nahum and Rebecca said...

Yes, yours might be more visible, but it's also a lot bigger than a lot of people's. But obviously there are so many varying levels, both objective and subjective.

Anonymous said...

Perhaps, the person you were speaking to was jealous of how you have "it" together and she may not. While hers may be smaller her jealously is what she is pushing down the street. But, unlike you she is embarrassed to be pushing something down the street and perhaps weighs a little more than Dovi!

Shosh said...

This is soooooo true. And perfectly written. Your pekalach is very obvious. But everyone has a pekalach, just most people hide theirs because they are embarrassed. People may think that yours is "bigger" but can we really put a value on a person's struggle in life? Sick child? Bad marriage? Terrible debt? Infertility? Mental illness? Is one "better" or "worse" than the other? We can't really judge something like that. But I do think that by sharing our struggles with others, whether or not by choice, it is a freeing feeling at least, and it's so much better than keeping it hidden, as most people choose to do. I could see people being jealous of the fact that yours is in the open. IMO, sharing one's problems lessens the burden a teeny bit, makes it just a little bit better. If only everyone was brave enough to share theirs. I think I've said this to you before....in one of my 476 comments on your blog :)

WriterGrrl said...

People say that all the time. It's right up there with our kids being "lucky" to have us. You're right, I don't (usually) get offended by it, but it's just such a stupid thing to say, if you ask me.

Orah said...

My mom has a neighbor to her apartment in Israel (actually related to your sister-in-law) She had a son who became quite ill as a child and ended up so sick and dependent (he died this past year) and another child was born with downs. She had and has so much on her plate and she does not stop smiling and doing for others. What should we tell her, to stop smiling so much? Just keep being you, the world is better for it.

Keren said...

Well said, my friend. well said indeed!

rickismom said...

I don't think that one can really "compare" "pekalach" . I have had several, and all are hard in their own way.

I alsways said in response to this type of thing: Well, if G-d throws you into the deep water of the swimming pool, you have no choice. You have to swim" Being miserable is counter-productive....

ybider said...

the real issue i believe is pretty simple. it is a fact of human nature that people tend to view other people through the lens of their own strengths, weaknesses and abilities . that being said what i think your friend , and for that case anyone else in similar situations is really saying is they cannot imagine THEMSELVES being able to handle YOUR situation as well as YOU are able to and that is what is amazing to them. so in a nutshell , they are judging themselves using you as a barometer and are finding themselves lacking. keep up the good work.

Anonymous said...

Many people have over the years, talked about my "accepting" my handicapped child. Your mention of pushing Dovi in his wheelchair reminded me that I struggle not to accept, but embrace and celebrate her. Keep on pushing pridefully! With love, P.