Thursday, March 06, 2008

Listen Up

People have often wondered, and a few bold ones have even asked, what kind of connection Elijah had with the world. This is asked, or wondered, in many ways.

Did he interact? Could he respond? Was he umm...'all there...' ? (retarded, is usually what they meant)

Yes, Yes, and ummm well, yes.....But Yes, he probably was also mentally retarded. Because we have this picture of his brain from the neurologist that says so.

Actually, when the neurologist-from-hell gave us the first report on his MRI, he said (I found in my journal, and I quote), "We have no way to know what this means for his future. He may have trouble with learning, uhhh, you know, his ABC's."

And then the next day in an email exchange when pressed, said more ominously, but taking a step out of storyland, "He may never walk or talk. There is no way to know."

Allrighty then! That was a little bit more to digest!

What most people think of when they hear 'retarded', is 'thank heavens that's not my kid!', as images of large drooling and lumbering adults come to their mind. While this is perfectly normal and even acceptable, it does make it very hard for the parents of a child who is 'differently abled' to try and convince someone else that they do NOT FEEL BURDENED. The drool and the shit and the extra work it takes? Fine. The way a mother feels about her typical child, the way she would do anything to protect him from danger, the way she is torn up inside when she fears he will be treated unfairly, the way she gazes at him while he sleeps with awe and love and gratitude that he has come into her life....all of these things and more, times one hundred, is how a mother feels about her child who was born less entitled than yours. Born into a life on this earth. Just a little less lucky.
I am still astonished at the number of people who have intimated that Elijah's death was somehow freeing for us. When, really? I had embraced this surprising avenue of motherhood with the fervor of discovering a purpose. So when he and all of his specialness was gone? What purpose did I have? I know my purpose, you don't have to point it out. I am only sharing this to try and get it through your fearful heads that parenting a child who needs extra care? Parenting a child who is retarded? Not worth your fear, and it's insulting to those who are living it. Worth the fear of losing a dream maybe, but not ever worth the fear of living it.


Shannon and Carey said...

This is a very good post and I hope lots of people tune in to read it.
Hugs to you.
-Shannon in Austin

Tracey said...

I would never assume that the death of someone's child would ever be a freeing, or a blessing... It could ONLY ever be horrendously painful... And a child that has special needs? A child that has been singled out by God or fates to be more openly different than the rest of us who can hide our differences? I can only imagine that it adds a whole new level of pain.

I've been thinking of you this month. I hope that March is full of less painful memories and more of the sweet, tender memories...

nailgirl said...

I agree when is the death of a child freeing?

Kristen said...

Why are people so incredibly stupid and oblivious? Good grief.

Anonymous said...

You know what - that post was so good. I learnt from you today. Can I ask a question... for you what was the right way for people to meet and approach Elijah? I mean from your perspective as the mother. I met a friend (not a close friend) in the street who had just had a special needs child. I gently leant into the baby’s pram, touched him lightly on his golden hair and commented that he was gorgeous. The mother visibly stiffened and almost physically intercepted my moment of acknowledging the baby. I've lost a child and I HATED when people ignored the fact. So I made darn sure I acknowledged and welcomed her baby, as I would have. However her reaction made me question my actions. The reason I ask is I know from experiencing death - the little things people do and say mean so much. If you can't respond then I do understand. Thanks for sharing your words.

gwendomama said...

anon. i hope that you will email me if you feel comfortable. we have something in common.
to answer your question, the 'right way' for people to greet elijah would have been just to accept our answers which were obviously (to anyone with 1/2 an intuition) a somewhat dismal if rote delivery. elijah did not 'look special needs' until you realized his age. he was strikingly beautiful, so he attracted a lot of attention, and he was also amazingly small, which also attracted attention when his true age was 'disclosed'. this was when the 'shock' would set in.
I don't think you did ANYthing wrong at all - I believe I would have responded the same way.
perhaps the mom is not used to experiencing enthusiasm upon meeting her child. maybe you would like to reach out to her more, maybe not. I think that what you did was completely fine. She is hurting. Her reaction was probably one borne from her pain.