Thursday, March 5, 2009


Ada is....
my 23 year old daughter. She is very unique, extremely challenging and sometimes frustrating. When Ada was born something special, some incalculable shifting of the moon and the stars and planets occurred that resulted in a being that would bring something to the world that noone else ever could. Something happened to make her into the interesting, amazing little person she was, is and I hope she will be again.

When Ada was 7 months old we discovered after much trial and error that she had a rare growth disorder known as Russell-Silver syndrome. It is a form of dwarfism that gives its few members unique facial features, short stature, a petite build and a whole array of medical issues, though Ada does not have hardly any of them. This was a difficult thing to hear but I had already accepted her and loved her so fiercely that there was no way I would let anything or any one stand in her way.

To fast forward this whole story so that I can get to my point, Ada was later diagnosed with Autism and most recently with Bipolar Disorder (along with 84% of the rest of the world...ha ha).

So what does this = ?

Well, take a person who has anxiety, very little insight into her own emotions and very little skill at communicating her feelings and add a dose of mental illness that is caused by a bio-chemical imbalance in the part of her brain that regulates emotions. What do you get???????

A ridiculous amount of stress....that is what. Seriously. God has a great sense of humor.

I don't know if I should laugh or cry. Lately it's been a lot of the later. I'm so sad about Ada. I have so little hope right now. She says she wants to try new things so I get her signed up...things like Special Olympics gymnastics and a girls weekend with some of her school mates and respite provider. She says she'll do these things but when the time come to do them...she withdraws, digs in her heels and refuses. And, once again, my hopes are dashed. I want her to try new things: I want her to find her niche in life and to find something that makes her happy.

Tonight I attended the first of 10 weekly NAMI meetings and cried through the whole thing. I need help and I need support and I know that this will help me understand my wonderful, unique and challenging daughter better.

Tomorrow's a new day and perhaps Ada will decide that going to a hotel, away from her siblings and the daily routine of our home life will be appealing. Perhaps she willl...but if she doesn't we'll push on. It helps to write it out - it doesn't seem as overwhelming.


Chrystal said...

Oh, that does sound like a lot to bear right now. It appears that you're doing all the right things at least.

Ava is beautiful. I was so happy to see her picture!

Angie said...

I wish you didn't have so many reasons to need to be strong for your family, but since those reasons are there I know God putting you in your family was the best thing he could have done for them. Since I don't have any intelligent words of advice, I offer my sympathy and encouragement.

Roy said...

Those are some good pictures of a very special young lady. Granted she comes with higher maintenance than some, but she is deeply loved and loves you deeply as well. Some days, you may just have to hang on to that.

You are a very special family...

Gabe, Curtis and Dav

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