Monday, March 26, 2012

Would you rather…I

Want to make me cry? Reduce me to a quivering, sobbing, snot-covered mass of mama-jelly?

Ask about Z’s ID card.

The day I met my girl, she was just over nine months old. Dressed in a little light green and white jumper from the orphanage, she was astoundingly beautiful, if looking a little scared. She initially came across as quiet to the point of being possibly drugged, and was clutching her identification in her tiny hand. Why did she have to hold her own ID card? Why did my baby have to bear that responsibility?

When I think of most nine-month old babies, I cannot imagine they could be relied upon to hold on to anything consistently. There was Z, in that moment where she was passed from her Ayi (in this context, caregiver) to me, all alone in the world and bravely responsible for her own miniscule self and her very own identity.

Want me to cry some more? Ask me about “Tommy.”

Tommy lives up the street from us in a quaint, slightly run-down little house with his elderly parents. When Tommy was in school, Pardner’s ex-girlfriend was his teacher. In those days, “special needs’ children were not mainstreamed and he went to a “special” school. Pardner used to come into the classroom and play his guitar and harmonica for the kids and he has fond memories of Tommy and the others in the class dancing with total glee. 

Now Tommy is middle-aged, a pudgy man with his pants hiked high and a bald spot. I usually see him walking jauntily up and down the street with his walking stick, always staying in sight of his house and waving at everyone who drives by. He always seems happy. Every time I see him I think of his parents: I wonder if they worry about who will take care of him when they are gone. I know full well there are social services and safety nets but what will happen to him when his parents are no longer able to run that household? What if what Tommy wants is to stay in his own home?

A few weeks ago, we had a big snowstorm. I didn’t see Tommy for a few days and I noticed that there was no smoke coming from the chimney of the house. The small driveway remained without tracks. I haven’t seen any activity at his home since. I am afraid that time has come.

These two tear-inducing items represent the two poles of a Full Spectrum of fears for my children. I have a daughter who was able to --  in a very real way -- take care of herself at nine-months old…because she had no choice. Almost six years later she remains trapped in a massive control scheme, her babiness largely inchoate. I have a son who is very bright and desirous of independence but who may never be able to live on his own without assistance. I worry, I worry.

So many faiths advise us to “be here now.” We are warned that the present is all we have for sure. Our nowadays are sprinkled with lovely small moments, sometimes bumpy but always full of big, deep love. Wisdom traditions notwithstanding, I worry about the days to come. What is the right amount of worry, now and in the future? What is the right amount of care?

To be continued…

Love,
Full Spectrum Mama


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5 comments:

  1. Here are two related comments that came via email:
    From Beverly, who has a 38-year old son with aspergers syndrome: “He brings folks over, off the street, and they eat all his food and run up his phone bill (no more long distance, now) and even let his cat out (now gone). I'm telling you all the awful stuff...but he is so happy to be ON HIS OWN; it's worth it!”
    From a mama in Spain: “So we both have 2 beautiful, smart, loving children who are total opposites of each other!!!! For me the main difference is that I don't worry for [daughter]'s future and I do about [son]'s...How will he manage in this competitive, tough world they will grow into??”

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  2. Isn't this the heart of parenting? No matter what you're children's strengths or weaknesses. My son is seemingly "normal" but I have to worry about him getting "Trayvon Martined".

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    1. Yes! That's why I wrote "to be continued..." I wrassle with being inclusive but also distinguishing. I guess I want to have my cake (we are all connected on a Full Spectrum) and eating it too (we are all different colors a Full Spectrum). The discrimination that little E (as a person of color of African-American descent) may/will suffer will be different and perhaps worse than what little Z (of Chinese descent) may/will have to face and of a very different sort than that which G may/will suffer due to his autism. On a gut level, I have to feel that it is harder for families who deal with discrimination and basic differences -- but I am not at all sure this is actually true. In any case we are lucky to have the time, privilege and luxury to even be able to think about and debate these things; hopefully it is all to the benefit of our babies! LOVE back atcha!

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  3. I know. It's hard not to worry about the future of our children, but I live by this motto "worrying is like praying for bad things". Yet, at the same time take prevenative action- I think there are a few things we can do to help our children- make wills, set up trusts, lean on family and friends, and meanwhile, pray for the best. xo desha

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  4. Ah, yes. I am definitely Against worrying! And the practical stuff is a help as you mentioned and then positive prayer...Thank you, dah-link!

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