Sunday, October 10, 2010
Ds Awareness day #9
You probably thought that I had forgotten about a post for today, but I didn't I was just busy.
Tomorrow is our Thanksgiving. I am making a pie for the first time in my life, crust and all, and we are also celebrating my Grandma's 84th birthday. I started a family tree quilt for her almost 3 years ago. I am so bad I know, but I didn't really know how to quilt and I thought that maybe this project might make me. I sat all day and sewed and I got it done. It's in the dryer right now shrinking up and getting wrinkly (just the way I like em!)
Anyways... I was putting off the post until I was done. I am done...
Right after Ola was born I remember thinking selfish things like...
I am going to be 85 and still have a child living at home with me...
I am going to be 85 and I will still have to support my daughter...
I am going to have a child at home with me for the rest of my life.
My Grandma was the reason why I was thinking these things. You see, my aunt still lives at home with my Grandma. My aunt has what I was always told was a "deviant form of Ds" I am not sure who came up with this as a diagnosis, it may have been my Grandma, it may have been my aunts doctors when she was a child, maybe it was just easier to describe it as something like Ds. I never really asked any questions and I was oblivious to what Ds was, and I never questioned it.
When our pediatrician came in to talk to Mark and I the morning after Ola was born he asked if either of us had any experiences with people with Ds. I told him about my aunt, and he accepted what I told him. I think having my aunt made me ok with the idea that Ola might have/has Ds.
My Grandma and my Aunt moved close to my parents 5 months after I was born. There were a few reasons why, they don't really matter, but I all I knew was that when I was growing up I was lucky to have my Grandma and my Aunt live just down the street from me. My Aunt was always our babysitter. We never had a neighbourhood teenager, or family friend. It was her...Always.
I remember her being smaller than the other adults, but she was bigger than me. I remember people looking at her, and being annoyed at that but it was little brother who stuck up for her when people made fun. I knew that she had a harder time reading than my teacher or my Mom, but she was better than me, and she could read me all the stories I was interested in.
Then when I started getting older, I got taller and my Aunt stayed the same. Suddenly I was bigger than her, stronger than her, and smarter than her. I always knew that she was different, but I think I finally realized it when I became more aware of what other people thought. Kids at school used to ask me questions and I avoided it. I didn't want to talk about it, I didn't know what to say and I didn't want to be different.
My Aunt and I had a not so nice relationship when I was a teenager. I was trying to get away with things and she was tattling on me to my Mom. Even when I was old enough that I didn't need her, my brother did. I felt like I had become the bad guy and my brother could do no wrong. I knew that as long as she was around there was no way I was getting away with anything. She was watching me like a hawk and reporting my every move to my Mom. I hated her being around... I hated that she loved my brother more. She was around a lot. She just lived down the road and she would just come over to hang out, or to help my Mom or if Grandma was going away she would come to our place. Sometimes she would be there for weeks.
This all changed when I hit high school. I think she still liked my brother better, but she wasn't so bad. She helped me out if I needed her for anything, and once I gained my independence I saw her less. My family moved about 30 minutes away from them, and I think it really hit my aunt hard. She took the bus everywhere (when my Grandma was at work) and it was hard for her to get to us. When I got my drivers licence I could go get her and bring her over if she wanted or if my Mom asked me too.
Things changed even more once I was pregnant with Poppy. My aunt was so excited from me, she bought me little things here and there, and always asked how I was feeling and if I was doing Ok. I remember my Mom saying to me when I was closer to my due date that I should ask my Aunt to come out to my place to help me, just like she had dome for my Mom so many years ago. I was not into the idea. I could do everything by myself, I didn't need her.
I did need her, and she was there, just like she always has been and always will be. She became Poppy's number one babysitter, I could call her last minute and it was never a problem. If it wasn't for her willingness to put her life on hold to watch Poppy everyday while I went back to school I never could have. She moved out to my place in a heartbeat for a month when I got placed for my practicum out of town and needed someone to get up at the crack of dawn with Poppy and make sure she got her breakfast, and naps while I was gone all day. I was so exhausted for that month. I was over 25 weeks along with Ola and I needed her and Mark for everything.
She had a bad cold when Ola was born and she couldn't come out to the hospital to visit. I know it killed her and she was so upset. She kept going back to her doctors to get the Ok, but I wouldn't let her. There was no way that I could take a chance of Ola getting sick. She was so worried, and I know that it was 10 times worse because she couldn't see her.
I knew that I was going to have a hard time telling people about Ola's Ds, but I knew that telling her was going to be one of the harder ones. I really wanted her to know that Ola really was Ok, but that she did have Ds and that would be ok too. She took it well, but I think that she had a hard time. I think it was hard for her because she knew what it was like to be different. She knew what is was like to have people stare and make fun. She thought all of this was going to happen to Ola. I really didn't want her to feel this way, I wanted her to know that Ola would be just fine, but how do you say that to someone that knows first hand?
She has become Ola's biggest fan and I think that the two of them are going to have an amazing bond. She looks after both of my girls, just like she did my brother and I, and I can't imagine ever having anyone else do it. She quickly mastered the art of feeding Ola and can hit her burp spot right on. She will never understand how truly grateful I am that I have her. My family is not super "huggy" but I have made sure to hug her now, especially when she has just taken such great care of my girls.
I think that having my Aunt around all these years has helped me become a better more compassionate person, and having her be around my girls will help them be the same. I think someone or something had a plan for me. They gave me my Aunt so that I would be ready for my little Ola. They knew that I could handle it, they knew I would know what to do.
Even though my aunt doesn't really have Ds, she is a wonderful advocate. She is showing that people with Ds and other special needs can still be high functioning. I hope that every time someone sees her out with my girls that they realize that just because you might look a little bit different doesn't mean that you are incapable. My aunt is very capable, and special, but special because of who she is, not because of what she has.
I don't feel so sorry for my Grandma anymore, even though the times are different and I know that I am getting a lot more help with Ola than my Grandma would have ever known what to do with, but I think I can understand where she is coming from. I think that my Grandma and I have a lot of stuff in common, and now we have one more. I always looked up to her for her strength and tenacity, I always hoped to have an ounce of it, and now I know I do.
Now I know that Ola won't be living at home when I am an old 85 year old woman. I know that I will not have a child at home with me for the rest of my life, but I really do hope that she can make the time to come visit her old wrinkly parents.
Posted by Poot & Boogie at 12:17 AM