It happened again last week. I was sitting in a meeting of all places. Then one of my colleagues, let's loose the r-word. I look around the room. People avert their eyes, no one speaks up, and they all know I hate that word, but not a single one is going to say anything. It is up to me. So for the one millionth time I have to bring this up. I am so tired of having to always be the only one. It just comes out of nowhere and attacks you and leaves you drained and tired.
In 2007 I learned that my baby girl would have Down syndrome. I was so unsure and scared about what this would involve. I cried many tears. The last almost three years have been full of highs and lows and another diagnosis on top of the Down syndrome (Infantile Spasms). It is today, however, that I think about the Down syndrome and remember how it entered my life because of a beautiful little girl named Quinn. Quinn is the best daughter I could have wanted or asked for - she is my everything. There are points of clarity and I know that Down syndrome has made me a better person. It has taught me so much and helped me meet such beautiful people that I would not have otherwise met in the world. Today I actually celebrate Down syndrome - something I was so unsure about in 2007.
Quinn does the cutest thing every single day. When her shoes and sure steps are taken off, she wiggles her toes like oh, what a relief, that feels so good on my tired feet! Her feet are the cutest little things. Although I swear they don't grow :>)
Delays are everywhere. I delay when I am going to blog. Before you know it, it has been a month. I delay taking time to relax. Before you know it, my back and neck are all tight and knotted up. My life has become a serious of putting things off while I juggle a multitude of tasks. Delays are sprinkled everywhere.
And on top of it, every day I ironically notice more delays with my baby girl.
This is not meant to be a depressing blog entry. I love Quinn more than anything and I appreciate her accomplishments and having her in my life, but I just can't help but to notice how far behind she is to her peers with DS. Life is not meant to be a race, so this idea of "far behind" is a ridiculous one, I know that, but I still see it. It just comes and strikes me out of nowhere.
I guess I was hoping for something more after the ACTH was done. I guess I was deep down hoping for leaps and bounds, but there was a spurt and then another plateau. I am thankful for what I have, but I just have been thinking about this. It is hard to explain, I am not depressed, but aware. What is, just is.
My mind has been going to that there must be something more. I am just going to come out and say this. There must be something additional to DS and IS. My mind is now going to PDD. I am numb to this as well. If it is, it is. I am not going to seek out dx in this area yet, I am just going to watch it, but let's just say I wouldn't be surprised if someone working with Quinn mentions this soon. Last night the only interaction I had with Quinn was the frownie face. It is an adorable little face she makes when she is about to get upset. So so cute. Riley and I laugh and smile. I thank God for the frownie face, but a person would like to see more when they come home and spend time with their child. But this is just beyond my control. I just have to accept if the frownie face is given to me, at least it is something and it is Quinn so it is love.
I am learning to let things go. Just take what you have. If there is a delay, just accept it. Not much you can do about it anyway. I am sure there will be other feelings that I have about this on different days, but for right now, I am just feeling this...
This is our dog Belvedere - he is a member of our family. Quinny started a new thing the past few weeks and she likes to go after Belvedere - touching him and tackling him. He has been good about jumping away, but the poor guy is being attacked by that little girl. Maybe he has to stay on the chair like in this photo because she can't get him there.
I have been quiet lately. A lot is going on, but I just haven't had the energy to blog until now. I have to say this though...
All I want is LOVE and not stupid politics.
I hate politics. Not as much as I hate Infantile Spasms, but still I hate politics a lot. It just gets in the way and divides when people should come together.
And now more than ever politics are interfering with my life.
I get questions about how do I feel about certain people in politics talking about the r-word. Somehow I get connected to another mother who has another beautiful child with Down syndrome who lives in a far off state. I do feel a bond with anyone who is the parent of a child with special needs (only those who have been to "Holland" knows what it is like), but that doesn't mean we are all the same. That doesn't mean I want another person's opinions and actions to be taken as my own.
I don't want Down syndrome to be associated with all this crap. I want to see beautiful images of people with Down syndrome. I want to see uplifting messages and not fighting, bickering, and carrying on.
I do hate the r-word and other insults, but I try to learn from my child and not attack people but educate them. Quinn has educated me more than anyone else in my whole life and she has done it with love, acceptance, and pushing me out of my comfort zone and not with arguments, mean comments, and hate.
I also don't watch shows like the Family Guy (it never appealed to me), and I personally do not have interest in the much talked about episode. Watching a comedic song titled "Down Syndrome Girl" doesn't really appeal to me when I have a beautiful girl who happens to have Down syndrome. That doesn't mean that I am against the episode or anything because I haven't seen it and quite personally I don't think I am in a good place right now to see something like that. I do applaud the beautiful young woman who happens to have Down syndrome who was employed by the show. I want to learn more about real people like her and see her beautiful face.
The thing I am sick and tired of is how even in our own community we get wrapped up in politics. Sides. All that.
I just hate it.
I went back to this clip today. Listen to the very first part. I think everyone needs to learn to be a little more like our kids, even me.
I cried. I actually cried. Tears welled up in my eyes as I learned the fate of Maddy Curtis. I felt a pain deep down in the center of my heart. I suppose some may think that I went overboard in my reaction to this young, talented girl I don't even know, but tonight was about much more than just a television program. It was about much more than American Idol. It was about acceptance for my daughter. It was about hope for her future being free from discrimination and hate.
Let me tell you about another experience this week, it might help you understand where I am coming from. I went to Target with Aidan this week. We were going along with our cart down the aisle. I could tell up ahead there was a woman with DS pushing her cart. I could just tell from behind - you tend to look for these signs when you have a child with special needs. This was the second time this week alone that I saw someone with DS. Normally I sneak glances at the individual with DS, glancing and wondering will be Quinn's future if this person is an adult, but this time was different. Instead of looking at the woman, I looked around me and took in other people's reactions. I watched the crowd around me. I saw a child watching this woman. He was walking backwards, unable to turn away from her. He had a disgusted look on his face. I saw his mother look and ignore his reaction to this woman. I saw ignorance. I saw discrimination. I saw hate. I decided right then and there that I have been approaching these types of situations entirely wrong. I will no longer steal glances at the individual with DS, I will instead watch those who think that no one is watching them. I will watch them. And I will let them see how it feels. I began staring at the child with a disgusted look on my own face until this child looked at me, noticed, and turned away. Sure, it is a child. I am an adult. Maybe it isn't nice of me, but I am tired of hate, prejudice, and discrimination. I see that this starts early. And it grows. It festers. It turns into use of words that hurt. It causes pain.
I then turned to watching Aidan. Thankfully, he saw this woman, glanced at her, and then kept on talking and going about his business. I was so proud of my baby boy in that moment. I know that Quinn has touched our lives so much. I know that my boys will be better people for having Quinn. I get Maddy Curtis' message. I feel it in my heart.
So why do I care about Maddy Curtis? Because she represented hope for me....hope that others will see the beauty and love in the faces of individuals with DS and the faces of those who love them. Her brothers would have been cheering her on in the audience. DS would have been discussed. Maybe it would have been possible for others to see some positive images of DS instead of the multitude of negative ones. She represented my hope that one less person would stare and look like that at my daughter. I am so sorry Maddy that this didn't work out for you. You just don't know how sorry I am. Thanks for sharing your story and the beauty of having someone with DS in your life. I thank you. Quinn thanks you. We all thank you. It was about so much more than a television show for us.
I finally had a little time to explore for more documentaries related to DS. I found this little gem. Please watch. I am in totally agreement with Paul's mother, I am completely different because of having Quinny.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.
I am loving mom of three children, two boys and one girl. Riley is age twelve; Aidan is eight; and Quinn is five. I have been married to my husband, Neal, for 14 years.
Down Syndrome Awareness Month Blogging Challenge - I DID IT 2009
Deep Thought by Jack Handy
“If you define cowardice as running away at the first sign of danger, screaming and tripping and begging for mercy, then yes, Mr. Brave man, I guess I'm a coward.”
