What is Achievement Anyway?

This is just my thoughts...my opinions...this is in no way meant to translate to others...we are all on a journey...an individual journey and this is where I am right here and now...

In Jonathan Mooney's book The Short Bus he interviews a mother of a young woman with DS (Katie). I love this book. It opened to my eyes to that disability is another area of diversity. This is a point that I needed to look at because it challenged my values. Anyway, Katie's mom stated, "Katie revealed my dark side. She was a little crack of light that go in there and revealed my dark side. It is a dark side that most of us have." I had a dark side. I am not ashamed to say that. Quinn revealed it. She continues to reveal it.

What I hope beyond anything is that my children do something great in this world. I used to believe it had to do with what they achieve. I have a Ph.D. I was a gifted student. I had a 4.0 all through college - undergraduate and graduate. It is all about achievement in my life. Achievement, achievement, achievement.... Now I know that achievement isn't everything. Quinn, just at three years old, has shown more purpose and impact on others than I ever have and I work in a helping profession. What is worth anyway? Jonathan Mooney examined this for himself in the Short Bus. I examine it through Quinn. Right now I realize that Quinn has more worth than me. I don't care about what society values, I care about what I value in my heart. Society didn't value various races in the past. They were wrong. Maybe there will be a new way of looking at cognitive disabilities in the future - who knows. I can hope, can't I? Quinn has the DSM-IV-TR diagnosis of Mental Retardation. So be it. I say that now fully recognizing that I still struggle with this periodically. I am on a journey. But right now I feel in my heart that one's IQ does not determine their value. I give IQ tests for a living, they are just a number. What you leave behind on this earth is what matters and Quinn will touch so many people. She will leave behind a legacy that surpasses my legacy. That is truly achievement. She will be proud. That is what it is about. I know this because I see how she already touched her brothers.

-Karyn

The Blessing of DS

This is something I posted on an online forum. The question was about if you see DS as a blessing.

To me, DS is not the worrisome thing with Quinn. I would welcome only DS, but this is not to say that someone else might not have a totally different view. She had seizures which set back her development and were much more scary to me. Although we are moving forward now, I know that these seizures have impacted her. I hate Infantile Spasms, but I don't hate DS. I love Quinn and if she has that extra chromosome in every cell of her body, so be it. But I cannot stand for seizures running through her brain. This is why it gets confusing...Quinn was at a higher risk to get Infantile Spasms because of DS. But then DS helped her treatment for Infantile Spasms become more effective. So many kids who are typical who have Infantile Spasms do not get their seizures under control. It is just so sad to hear what these kids and their parents have to go through. DS was our friend here. It helped her so much and her neurologist would talk about DS in a positive manner for her. Jeez, how is someone supposed to feel about all this? It is confusing. It put her at-risk, but then saved her. But today I went to church and I am not going to get preachy but I so understood the sermon because of all this. The sermon was about grace - sometimes grace comes in ways that aren't exactly what we wanted or expected. To me, if Quinn had to have Infantile Spasms, I am just thankful she had DS. Maybe the DS was a blessing to us. Who knows?

-Karyn

You Say No to Her, and You Get a Hug and a Kiss

I have decided that everyone needs to be like Quinn. Well, not exactly like her (we do need diversity), but like her in the following way...You tell her no. Maybe she is patting the dog a little too hard. Or maybe she is pounding her toy against the window. No matter, the point is you tell her no. She stops what she is doing. And in return to this redirection which may anger some, what does my girl do, she comes to you and gives you a big hug and the sweetest kiss. My girl is perfect. Everyone else, including me, has the disability.

-Karyn

Did You See Me in There?

This summer we went on a weekend trip to Door County. Neal and I were reminiscing during the trip that the last time we were in Door County was when I was pregnant with Riley. So we were talking with the kids that the only one of them that were there before was Riley and he was in mommy in the time. To which, Aidan turns to Riley and says, "Did you see me in there when you were in there?" That guy cracks me up.

-Karyn