There Is No Shame Here

I am pulling this old post off of another of my blogs to share with you just because I feel a need to do it.  If you face any of these issues yourself or in your family, you’re the reason this is here.  This was originally published 7/10/07, and any updates are noted.

Tall OneI wrote a post the other day that I almost didn’t publish because it mentioned my daughter’s disabilities, if only in passing.  It wasn’t that I’m embarrassed in any way by her, in fact quite the opposite.  She is amazing.  But I’ll get to that.

I almost didn’t post it because sometimes people squirm when they see or hear about a disability.  It’s uncomfortable.  You don’t know where to look if someone is disfigured, if someone is different you’re not sure if you should say something or pretend you don’t see.  I know, it happens to all of us, right?

My friend Art Blanchet commented on that post and what he noticed was the bit about my daughter’s disability.  Everyone else kind of let that slide, and it wasn’t the main point of the post anyway.  But Art knew, and that was the part that got to him.

My Tall One has OCD, ADHD and Trichotillomania, which is shortened to “trich” (say “trick”) by those who are familiar with it.

You may know OCD, that’s Obsessive Compulsive Disorder, and if you saw the movie As Good As it Gets or watch Monk, then you know a little about it.  Tall One has a nearly opposite form, she’s no neat freak.  She has taught me to let go of the little things.  It really does not matter how messy her room is … if I avoid looking in there. 

ADHD is Attention Deficit Hyperactivity Disorder.  She doesn’t quite bounce off walls like the boys with ADHD do, but her mind is EVERYWHERE.  I think this is a big plus, and I think it will work to her advantage in her future.  She has an extremely high IQ (yes, I’m proud, and scared) and she thinks of things that others just don’t see.  Whatever she chooses to do in the future, she is going to be among the best.  I have no doubt about it, not at all.  I tell her she’s hard to take as a child, but she’s going to be an amazing adult.  (And after we had her, I could not believe that other people would willingly have more than one child.  I know now that she is simply not like other kids.)

The Trich is the hard one.  She pulls her hair.  Nobody understands this, and I won’t pretend that I do either.  It’s soothing for her.  She doesn’t even know she’s doing it a lot of the time.  Well, thankfully she is on medication for her OCD that works on the Trich as well.  There is NO medication especially for Trich, we just got a lucky side effect.  [Update: Tall One has taken herself off her medication since the time this was written, and is still doing VERY well.]  But when she hits a growth spurt, her medication no longer works.  She pulls her hair.  Sometimes it’s just a little and you wouldn’t know.  But when she hit puberty, she pulled it all.  She looked like she had cancer. 

People stopped us on the street and said they’d pray for us.  I always felt kind of uncomfortable, she wasn’t sick.  I would try to explain, but it just confused people.  She had an extremely difficult year at school.  This girl has been tested in fire and come out the other side with a smile on her face.  She knows who her true friends are.  She knows she has an inner strength that can get her through anything. I am hopeful that she’s reached full height and that this is over, but if not … we can handle it.

She just read this post and approved it for publication, as long as I tell you she has long, beautiful hair again.  She does, it’s gorgeous. [Update: She now has long, beautiful hair of any color she desires because I am just thankful she has hair, and color is fun.  Blue and fuchsia have been recent favorites. ]

She is one of the bravest people I have ever met.  I am so proud to be her Mom.  I know that some of the difficult things I’ve been through in my own life have only been to toughen me up enough to be able to fight for her rights.  There are sometimes people who don’t understand, and who can be hurtful.  We understand that this is usually just out of fear, but it doesn’t make it easier to take.

We have been blessed that most of the most of the people around us have been very understanding.  If anyone ever has a question, Tall One or I would be happy to talk about it.

There is no shame here.  God made her the way she is, and she is perfect.

Art, I DO write with my head held high.  And my Tall One lives her life that way.  I probably learned it from her.

Sarah’s Signature

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7 Responses to “There Is No Shame Here”

  1. Blair Says:

    My best friend growing up had Trichotillomania. She only pulled out her eyebrows and eyelashes, though, and especially when she was stressed. She stopped as she got older. She’s now working with autistic kids, and I’m going to be a bridesmaid in her wedding in a little over two weeks.

  2. Sarah Cooper Says:

    Blair, I asked her once about her eyebrows and eyelashes, why didn’t she pull them, too? She looked at me like I was crazy and said, “That would HURT!” LOL!

    Congratulations to your friend, I’m glad you get to help her celebrate her happy day! Glad to hear she stopped as she got older. Tall One has done very well, but I’m afraid to think it’s really “over”.

  3. MtnLaurel Says:

    She is beautiful, just like her mommy! I think you two are quite lucky to have each other.

  4. Chris Hyde Says:

    Thanks for the authenticity you show in this post. I’m sure it has been a very difficult journey at times. And I’m sure Tall One is thankful to have a mom who has been so supportive and stood by her through it all!

  5. Boomer Jack Boardman Says:

    Vintage Sarah! I remember that first post (brought to my attention by Jay), and was moved then as I am now. You & Tall One are both quite remarkable people!

  6. Dru Bloomfield Says:

    Sarah, Thanks for pointing me over this way. Words cannot convey my myriad of emotions - for you, for your daughter, for my son with his own set of challenges, and for my husband and me (who were so overwhelmed that we never did add to the herd).

  7. MsJamie Says:

    What a beautiful post. She is obviously a very special person and she has brought you powerful lessons. You sound like a great mom, and I think you are lucky to have each other.

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