Wednesday, October 08, 2008


Someone gently asked me yesterday, "Does your daughter mind that you don't blog much about her?"

That got me to thinking. Long story short? Yea - a little, but she understands.

She understands that at 14, she reads my blog, some of her friends read my blog, and some of the staff at her school read my blog. If I were to post about her, she'd lose her much deserved privacy, and right to tell her own story.

She understands that her brother is not typical, and she has every feeling one could possibly have about that, including a sense of gratitude for her more "normal" life experiences.

She understands that I'm writing a book about Rojo, and my blog posts are often times my "warm up" to what I'm working on that day.

She understands that I wrote a whole other book in which I thoroughly explored my mothering of her, and our relationship.

She understands that nobody may ever read either of these books, they may never be published, but that the writing of them has been a tool I've chosen to use to help me with my own understanding.

She understands that she does not really have a sibling*, and therefore to ask her typical sibling-like questions about her feelings, will not elicit typical sibling-like responses.

She understands that she does not get 50% of the parenting pie.

She understands that while that isn't fair, it's pretty much the way it is.

She understands that we have felt guilty about that, defensive of that, and try hard not to over-compensate for it in inappropriate ways.

She understands that we love her just as much as we love him.

She understands that while we love him differently than we love her, differently does not equal less than.

She understands a lot more than a 14-year-old should understand.

She understands that we understand that.

* To answer Drama Mama's good question, what I mean by this is she's much more like an only child, than one of two. There is nothing the two of them do together, they don't have to share "things," they don't have to agree on what to watch on TV, they don't really act like siblings - they orbit in two adjacent stratospheres, and it is the exception, not the rule, when they "collide."

To buy the book, Being the Other One: Growing Up with a Brother or Sister with Special Needs, click here.


Suzy said...

She understands her parents love her. Period. Unconditionally. Forever.

Lovely post as always.



Angie Ledbetter said...

Your whole post was profound. Particularly love this (and atta-girl to you for the knowledge you've scooped out and brought to light):

"...they may never be published, but that the writing of them has been a tool I've chosen to use to help me with my own understanding."

Special Needs Mama said...

Here's a story: I once had Evan in New Mexico at an alternative therapy clinic. A woman there befriended me (briefly) and asked a few questions about him, then spoke about herself a bit too. The entire exchange took place in one morning, for about 15 mins.

Two months later, I received a very expensive purse in the mail from this same woman. With the purse was a note, explaining that it was her gift to me for my showing her that when she was a child, her mother took extra care of her own brother, who was ill most of the time, and that while she always felt left out, in meeting me she learned that her mother loved both her children equally, but that her brother really did require more of her attention.

Some day you too will receive your version of a very expensive purse, for being the great mother you are.

Drama Mama said...

I feel so much the same way about Roxie. The thing about Roxie is that, like WooHoo, the experience has only made her more empathetic, stronger, and MORE incredible.

I have a question - why is it that she "doesn't really have a sibling"?

kario said...

Thanks to you guys.

Love you all

Devon Ellington said...

The depth of her understanding and the knowledge of the love from her parents matters a great deal. The fact you've been able to provide that is wonderful.

holly said...

Beautiful post, carrie. It's true also in the case of both of my nieces that being sibling to a less typical sister/brother has made them amazingly empathic beings at very young ages.

Anonymous said...

Wonderful post and I think it is so great you have put so much thought into your daughter and her thoughts and emotions....

jill_irvin said...

You hit the nail on the head ! Just yesterday my youngest said that she feels her brother is someone she 'lives with' instead of a 'brother'. She has an older sister and is obviously comparing her relationships. It created mixed emotions for me. Grateful that she felt comfortable communicating her honest feelings, appreciative of the honesty, sad for what we she is missing.

So interesting you posted this today. Her comments have been rolling around in my mind.

mamatulip said...

She sounds like a remarkable young woman.

Joanne said...

Wise beyond her years.

Anonymous said...

She's wonderful

Anonymous said...

She sounds like a great person. And you a wonderful mother.

Amber said...

My best friend was a sister to a special needs brother. She is, and was, a truely remarkable person...And I think much of the reason why is because of this fact in her life.

Now she has a typical son, and a son on the spectrum. And I watch her undersatnding so much about both of them. And she amazes me, as your daughter will amaze others, I am sure.


drama mama said...

Ah. Got it completely.

I wonder if that's the best part of being a "special needs sibling" - you are free to be your own entity, own individual entirely?

Thanks for answering.

Terry said...

this really is profound. please keep it for her.

shauna said...

I bet she is extraordinary!

Anonymous said...

This was good. I know my kids got short changed by having Katie in our lives, but I'm hoping that they got some good stuff too. Fingers crossed.