Wednesday, September 7, 2011

September, shitty September

September is one of those months, a month that I would like to completely eradicate from the calendar, if only to forget the events that have changed my life, my family's life forever. And no this post has nothing to do with Down Syndrome and everything to do with family, my family, my family before I created my own with Drew and Seth.

Four years ago I found out Seth had Down Syndrome. A month later four years ago my brother took his own life. And he never got to meet Seth. And four years later I'm finally at a place where I'm alright enough with Seth's diagnosis and in my own life to actually feel the grief that I should have those years ago. You see things catch up to you, things that you don't let yourself feel because you just can't, because you have to be strong. And I had to be strong, strong for Seth, strong for me, strong for Drew and strong for my family. Because if I, as Seth's mother, was falling apart over his diagnosis how could I expect others to keep it all together. It's a facade that we put up, but it crumbles and it could take months or years but eventually that wall breaks down and we have to deal with the past that we pushed in the back of our minds.

My brother and I never got along. EVER. And I'm smiling while I type this because I suppose that that was our dynamic. Among six kids there are bound to be all sorts of alliances and enemies and nemesis' but my relationship with Chris was that of a non-relationship. We didn't hate each other, we just didn't like each other all that much. We were two very different people, worlds apart in our beliefs and lifestyles. And I never remembered having a decent conversation with him before I became pregnant.

One day, on the off chance that we happened to be together, he talked to me about my pregnancy (pre-diagnosis) and talked about getting Seth his first bike and cool clothes (my brother loved wearing nice clothes/sneakers). This is the stuff he did for our nephew and I always imagined it would be the same for his relationship with Seth, he would be the cool uncle that bought him the $100 sneakers. It was a great conversation, the first real conversation I have ever had with him. And for a moment in time and space we connected on a real level. I got to see the real Chris, the real man behind the clothing and the hair and the expensive clothes. It was a treat, a rare treat to see that side of him, rather than the hardened person that I was used (or not so used) to seeing.

I never told my brother about the diagnosis. I wasn't planning on telling him until Seth was born. Everyone else knew, all of my sisters and my other brother, why not this one?? Honestly I thought that Chris was vain and wouldn't take the news well and would say something hurtful. I also thought he wouldn't want Seth as his nephew if Seth had DS. So I never told him and he never found out. He never got the chance to meet Seth and he never knew about the Down Syndrome.

Or so I thought. My dad confided in me months later that he had told my brother about Seth having DS. I asked my dad to tell me his reply, no bullshit, I wanted the truth, I needed the truth. In all simplicity my brother had said "That's like the actor Corky from that show right?", my father replied "yes" and my brother said "that's not so bad". So there it was, acceptance. Perhaps it was that I thought my brother never accepted me or liked me, I sure as hell didn't accept him and his lifestyle, but I needed that knowledge, the knowledge that he would have loved Seth just as any other child. Because even though our relationship never was, I had hoped that he would have had a good relationship with Seth and after hearing that from my father, well I knew if he had lived Seth would have had a loving uncle and friend in him.

I'm not going to lie and make my brother out to be a saint, he was far from it. In fact it was part of the reason why we didn't get along. A lot of his life and doings was "unsavory" to me and I didn't agree with it. Deep down Chris loved his family and was a good person but I still have conflicting emotions about him. There's an ugly side to this story, one that I'm not really prepared to write about and maybe never will be.

This year I turned 28 and I cried. Because this was the year that I was officially older than my big brother. It sounds wrong. One should never live to be older than their bigger siblings, it's not the natural order of things. He was 27 when he passed, he would have been 31 this year. I felt like there was so much I gained in the four years since he passed, so much life to live and learn and grow and I couldn't imagine being 28 years old and not being on this Earth, not living the life I have. It made me feel sad and appreciative and guilty all at the same time.

And while I know we didn't have the best relationship, that we might not have had a relationship at all, I miss him still and I wish he were here. So here is to the shitty month of September, may it pass with few tears, less grief and heartache, until we are reminded again next year. Fuck you September.


  1. Big hugs sweetie. You know I'm here if you need a shoulder. I'm glad you were able to connect in some way before he passed & that you were able to find out for yourself that he wasn't so bad. I hope you're able to find peace.

  2. You do not know me, but I found your blog as I was searching for information about hypotonia. My daughter has a genetic disorder and her prognosis is similar to a child with down syndrome. Thank you for all your honest posts. They are refreshing to read because you are so real. Also, you provide a wealth of information about ds. Thank you.