Thursday, September 25, 2014

The hard part about it.

Today is World Down Syndrome Day. It's our second year joining in on raising awareness and stopping the ignorance. Last year my Gio's Godmother was off and she spent most of the day with him. I had a short day so we all went out and ate and hung out when I got off of work. We wore our blue and yellow and they wore their crazy socks. I work at a bank and my dress code didnt allow me to sport crazy socks during my shift. I didn't really spread the word last year. It had only been a month since we received Gio's diagnosis and it was all still new to me. Even today it gets hard to think about what I should respond if i decided to show off my crazy socks and someone asked me about it. I would say it was on behalf of my son who has Down Syndrome and then they would look at me with a pitiful expression on their face and say how sorry they were and maybe ask questions about him. I'm not too reserved when it comes to needing to tell people about my son, but, although I've tried to advocate awareness, I haven't necessarily been a spokesperson for Down Syndrome. 

It has still been very hard to think of myself as part of that group. I can talk about my son and his delays and I can go on and tell everyone about his diagnosis and how I am relieved we finally have an answer. I can freely say my son has Down Syndrome without being ashamed or embarrassed by it. But I have not yet fully grasped the idea of being a part of the Down Syndrome community. Not that it's a bad thing or anything I just haven't processed the fact that that's where we are a part of now. Most people have the luxury of finding out either during pregnancy or at birth. Yes, I said LUXURY. I didn't get that. I spent my son's first year and a half thinking he was "normal" just a little lazy. I blamed myself for not pushing him enough. I took for granted that my sister had reached her milestones mostly on her own and expected the same for my son because, well, everything was fine. He had weird habits and was a little delayed, but there was an excuse for everything. He started walking late slowly being a little more independent, but something was still off. At the age of 2 and 3 months was when we I found out I was a mother to a child with Down Syndrome. Imagine. Almost 3 years including pregnancy and having no idea. I agree that everything happens for a reason and I agree that his disability didn't change who he is, but it did change a lot of other things. It changed how we do <i>certain</i> things no matter how much we try to say it doesn't. It does. It changed what I felt about myself, it changed the idea of what i thought was my son's future, it changed even the way we care for him. I can sit here and pretend everything is normal, but it's not. It doesn't mean he is incapable at all, it means no matter how much we want to push aside the idea of a disability it will always be there. It does not define him, but he HAS it. It is still very fresh and i play it over and over again. I didn't get to know from the beginning. I didn't get that LUXURY. And, although, I have gotten more comfortable with this whole situation, I still need time to grasp it. I will always do what I can to help my child and to teach those around is despite my denial. 

I love being a mom more than anything I have ever been. I love knowing that whatever I put into being a mom is exactly what I'm getting back. It is the best investment of my time, by far. Gio is so full of life and hilarious and his charisma is so enlightening. Everyone who meets him loves him even when he's in a bad mood. The Down Syndrome has just given us a detour in our life journey. I know most of the time I write it sounds depressing, but I pinky promise I'm very happy being a mother. The grief of losing control over what I thought my child's future would look like is a little heartbreaking at times, but he is a perfectly loved child. It still blows my mind to think he is already 3 years. These have been the most challenging and amazing three years of my life. And i honestly wouldn't have been able to get through anything without Gio. He is my rock and my strength. To think such a tiny person is capable of doing so much to make me grow is incomprehensible at times. He can't even speak a full sentence, but he has me stepping out of my comfort zone wearing weird socks and advocating equality among those with Down syndrome and those who don't have it.

The more I think about what we do to raise awareness the more it makes sense. Crazy, mismatched socks can be uncomfortable for some people to wear and even a little weird for you to see someone wearing them. It isn't something "normal." You look at someone with mismatched socks and ask them if they had trouble getting dressed or if they don't own an actual pair because well a "normal" person wouldn't do that on purpose. Some of the reactions you might get are pretty similar to the looks people with Down Syndrome get. Why do they look the way they do? Or talk so different? A "normal" person doesn't do that. Yes two mismatched socks keep your feet warm they don't magically stop being socks just because they don't match or look a little diefferent. Just like people who don't look "normal" still have feelings, still have minds of their own, still do what they supposed to do. Just because it might make you uncomfortable doesn't mean they aren't doing what they are meant to do. I don't believe in the saying "God gives special kids to special people." I am no where near worthy of being Gio's mother. I think special kids are more like angels meant to teach you what being a real person really means. I believe we as parents are the lucky ones, to be blessed with the opportunity to see the world with a more pure and real perspective. All parents learn from their children, but a parent who truly learns how to make those around their child with a disability, for lack of a better term, better people; that is the parent who has taken their seed and nurtured it into a beautiful, strong tree. Today, and every March 21st to come, I hope you join in with us in raising awareness. To those who want to be a part of the world, not physically, but emotionally. They want to be seen for who they are, not they're Down Syndrome. Wearing the colors blue and yellow and crazy socks isn't even the hardest part about it, but it makes a huge difference. 

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