Saturday, June 18, 2011

Luke. I am your father.

It's Father's Day. It being Father's Day, I had to use Star Wars. I mean what greater father in geekdom is there than Darth Vader?

When I unexpectedly, surprisingly became pregnant with Seth I didn't prepare for my SO to be so great about being a dad. I also didn't expect for him to be such a wonderful father of a child with special needs. I can't say I know what went through his mind when he heard "Down Syndrome" but I can say that he responded, while feeling lost and scared, with love and in a positive (well as positive as can be in that situation) manner.

I received the news of Seth's diagnosis over the phone. Horrible way to receive news that your child has a genetic abnormality but that's the truth of it. My head was in a cloud. I called my SO at work, he forgot his cell at home, he didn't call me back until about an hour or two later. Those two hours were agony. How was I going to tell this person, this person that I love so much, that our child has DS? I told him in the most simple terms, "the amnio was positive". Those words hurt a lot. I was telling a father that his child, his first son, wasn't the most perfect being in the world.

I hate to say it but it is a blow to the parents ego when they find out their child has Down Syndrome. If their is one thing that my SO and I pride ourselves on it is our intelligence and automatically hearing the words "Down Syndrome" makes you feel like your child will not be smart and will not be able to function. I remember talking to my SO and him saying something along the lines of: "I'm afraid he will never have a smart conversation with me about technology or Star Wars or anything that we are interested in." We have had many similar conversations since, except instead of saying that we were scared, we are now saying "wow did you see what Seth just said to us?" It's an awesome change. It's amazing to see where we came from. I sometimes forget the dark times, the really dark times in Seth's diagnosis because I have the child, I have this amazing child that I feel can do anything and has shown me so much.

So onto that night. My SO shows up and I'm hysterical once I see him. I break down in his arms completely. And he just said, very simply, "I've thought about this all day and on the ride home from work. Seth (we had already picked out his name) is my son and I love him, no matter what." WOW, just wow. I expected anger, I expected sadness, I never expected acceptance so early, so simply. I can honestly say that I have been with my SO for six years at this point and never felt the amount of love I did for him until that moment. It was overwhelming.

From that day forward we made it our mission to learn as much about DS as possible. It was hard, the information hurt, but the information also gave us a sense of security. We like to know what we are up against, we love to be informed. So we armed ourselves the only way we knew how, we armed ourselves with knowledge. And we keep doing that to this day as Seth and his various needs change.

I remember asking my SO when I first became pregnant "What are we going to do?" His answer? "Duh, we are going to have a baby." I remember asking him the same after the diagnosis. His answer again? "Duh we are going to have a baby, doesn't matter if he has Down Syndrome." I don't think there is a more perfect answer for that question.

As a father my SO has gone above and beyond. He has learned ASL. He has learned patience. If you knew him you would know that that in itself is an incredible feat. He has learned acceptance. He has also learned how to be an advocate for our son. Like I said before in this blog, we are not psycho advocates, we just advocate when the chance arises.

Above all he is so incredibly proud of Seth. His whole face lights up when he sees Seth accomplish something new or say something out of the blue. He signs "I love you" to Seth and Seth's face breaks out into a smile and signs it right back. It's an amazing sight. I love my two men.

Monday, June 13, 2011

The man with no feet . . .

My dad has many, many quirks, one of them being all of these sayings that he just conjured up over the years. That and his Sean Connery voice which is just hysterical.

So one of these sayings is, "I used to worry about having no shoes until I met the man with no feet." Throughout my childhood I cringed every time I heard that phrase. I think you could hear the groans across the borough of Brooklyn from our house. Six kids all groaning at the same time because of the stupid (we thought) shit their dad said.

Well it wasn't stupid, it wasn't even fake. It's real. I used to worry. I used to worry about Seth having DS and all these medical issues but there comes a time where you realize that there is worse. That other people have it harder. That others struggle more and still manage to have a smile on their face. That I should be grateful that Seth is doing so well, that he can walk and talk and sign and knows his ABC's and 123's because there are kids who will never walk or talk. There are kids who will never function above a year old mentally. There are parents who look at Seth and see all their kid is not or might not ever be.

And that amazes me. Because I look at "typical" kids and see the same thing sometimes. All that Seth will never be. Because Seth is many things and will be so much more but he will NEVER EVER be typical. Never. He will always have that one extra chromosome. And that saddens me.

But here is the guilt, always the underlying guilt . . . Seth is great and is doing well. How dare I worry about having no shoes?? Can I look other parents in the eye and complain about things that seem so trivial to them? Can I look into myself and say "Shanna it's not so bad". Some days I can. Others I, well I lose it.

This week has been one of those weeks. I mean I'm an emotional wreck this week. I've been crying and laughing maniacally all week. DS has got me down this week (pun always totally intended). It's put me in a bad mood. That mixed with hormones (yeah that lovely time) is a bad mixture. It will all settle down soon and once again I will go to this happy place of everything being normal. But how long will normal last this time?? How long to go before I start bitching about having no shoes again?

Saturday, June 11, 2011

The roles I play . . .

I'm many, many things, I fit into various roles of mother, teacher, friend, spouse, daughter, sister and at times juggling all those roles is very overwhelming.

I think they have become more so since Seth was born. Becoming a mom is an evolution of ones self, it changes everything you think and feel about yourself. You are this very selfish person and then your life all of a sudden becomes dedicated to this one little person, a little person with so very many needs. You also become a mom and your relationship with your parents change. Some parents think they are the authority and you find yourself questioning your childhood and vowing to make your child's life better. Or you find yourself resenting the parental advice your parents give you. With your spouse you find yourself having conversations about rules and guidelines and baby names and so much shit that you never thought you would have to deal with. You have mommy friends and friends that aren't moms and some of them don't like the fact that you have become a mother. I've lost a few friends since this journey into motherhood.

But now, 3 1/2 years later, I find myself questioning the roles, roles I never really felt quite comfortable in. I'm not comfortable being a SAHM. Yeah I pretty much dislike being a SAHM, everything but the mom part. I'm good at being a mom. More specifically I'm good at being Seth's mom. I'm not good at the rest of the implications of being a SAHM. I don't do domesticity well. And lately it's been getting to me. The constant pileup of dishes, the laundry, the constant mess that amasses in every corner of our apartment. The walls are closing in, I need air, I can't get out . . . I hate it.

I know I sound like such an ungrateful person. I'm not. I'm appreciative that I'm able to stay home, that I can be here for Seth when he needs me . . . but there is a voice inside my head that started out as a whisper and has suddenly upped its volume, a voice saying "you aren't complete". "You aren't leading a full life." "You can do so much more." This voice in my head taunts me.

The voice speaks of a life I had before Seth, of all the plans and missed opportunities and unfinished projects. It speaks of freedom. It speaks of not planning every moment of every day around a child. It speaks of not being on call 24hrs a day, 7 days a week. It speaks of quiet and peace and tranquility of the mind.

My mind isn't silent anymore. I can't get it to stop. Wheels are constantly turning, I'm constantly planning . . . and none of it is about me or my happiness. Where did I go in my life? Where do I belong on my list of priorities. Because I'm not #1 or even #2. I'm down below the laundry and dishes and shopping and cooking and all the mundane shit that is supposed to make me happy. Supposed to make me feel like life is stable and things are good. Am I just bored? Or am I really not fulfilling an intrinsic part of me that says "Shanna you can do more, be more." ? I don't know.

How do I get back on my own list?

Monday, June 6, 2011

I pity the fool . . .

who pities me. Yep I said it. Don't. Just don't. Don't look at me with those big doe eyes and pity me because my son isn't your idea of normal. Don't say I'm sorry. Don't look at me with THAT look. And most certainly don't ever look at him that way, don't ever make him feel like he is less of a person, like he is defected, deformed, rejected or doesn't belong. You are so wrong in so many ways if you ever look at a child like that. He may have Down Syndrome but at 3 years old he doesn't know nor does he care. I'm scared of the day that he realizes. I'm scared of what it might mean, what I should say to him. I'm scared that it might break mine and his heart all in one moment. That it might destroy any semblance of normalcy that we are striving for and sometimes achieve. Please don't make me have to have that conversation earlier than what he is ready for.

Seth is 3 1/2 and has no idea that life is any different that what he has right now. I'm happy with that. In fact I created that. I let him believe that going to doctors and being sick and struggling to learn is normal because it is OUR normal. It is our life. I'm not going to teach him different, I'm not going to tell him that he is different. We are all different. Our lives vary so much due to circumstance, one of mine being that my son has Down Syndrome. Therapy is normal, school is normal, going on the bus every morning is normal.

So next time you see some with a disability, don't look at them like that. Admire their strength, their courage, their willingness to accept who they are because they don't have a choice. There is no choice when it comes to disability whether you are born with it or it is something that happens to you. But life continues. Life adapts. Humans are amazing beings, we have the ability to change and grow and learn.

On the other side of things . . . don't look at me like I'm a saint because I have a child with a disability. I'm not. I'm really not. I'm a 28 year old mom just trying to figure things out one at a time. I fuck up. I fuck up big time. (Sorry but if cursing offends this may not be the blog for you.)

I didn't magically become this perfect person because of Seth. I didn't sprout angelic wings and a halo. It doesn't change who I am intrinsically. I'm Shanna. That's it. So simple those words are yet they mean so much. I still like hardcore rock and metal music, video games, fantasy literature, nerdy and geeky things like Star Wars and guess what . . . so will Seth (hopefully).

So many people tell me that they admire my strength or they are impressed by the lengths I go for Seth. That's being a mom, that's being any mom. Any good mom worth their salt would do the best they could for their child. I lose my cool with Seth, I do. I did today in fact. Seth was dragging his legs down the block and doing the "flop and drop". I couldn't carry him anymore and I wasn't going to. I was tired. So I yelled at him. It wasn't nice yelling either. It involved words like "ass" and "pissed off". Suffice to say Seth got the point and started moving his ass.

Seth is still croupy and it's getting to me. I do that self pity thing once in a while (I'm allowed). That croupy noise is a like a drill in my head. It makes me want to break things. I think it is more about the noise being such a part of our lives and the dread that comes knowing Seth is sick AGAIN more so than the actual noise. I have bad associations with that noise. So while I don't want you to pity me, it's mostly because I'm more than capable of fucking myself over with that one. . . thanks.

So yes I can do and have done quite a bit of self pitying. It's not a good place. Because in the end I eventually have to suck it up and continue on. There is no break from Down Syndrome. There have been many times where I've just cried and I've said "I need a Down Syndrome break". It's not coming. It never will come. I still crave that break but between the times of sickness and doctors appointments I try to live life as normally as possible. I try not to think about DS.

And every morning and afternoon and night when it comes to meds time or a yearly IEP or a trip to the doctors office, I'm reminded all over again. It's that constant stabbing at my heart that just might never heal. I'm working on healing those wounds.

Saturday, June 4, 2011

Who inspires me??

This question was recently added to Facebook in the "About Me" section and it really made me think. It made me ponder for a long time before I answered that question.

I'm not the type of person to fawn over others, to choose one person to idolize or want to be like. I'm not like that. I'm a different sort of person. I'm a geek, I love video games, all things sci-fi and fantasy, literature, so I never felt like I had someone that I connected to on that level, someone I looked up to who reminded me of myself. I think that is what we look for in inspiration. That one thread of connection that tells me that I'm not alone in this world, that there are others like me, that I'm not as strange as I would like to believe.

So after becoming a mother I found out who inspires me. First and foremost my son inspires me. Seth inspires me everyday to be a better person, to learn, to grow - all of the things I thought I would be teaching him he has been teaching me. My dad has told me many times in life that our children are our greatest teachers and I just brushed it off as one of those things that your father says. I was wrong. Oh boy was I ever wrong. Seth has taught me to be stronger, to believe in myself, to stand up for what is right. No I'm not getting self righteous here and I'm not becoming that crazy Down Syndrome advocate (because frankly I don't have the time, energy nor mindset for that) but I am realizing that Seth has made me fight for him in ways that I never fought for myself. Becoming a mom I am more confident in who I am as a person and what I want out of life. I believe in the decisions I make for our family and for Seth. That's a priceless thing.

Another person I admire greatly is Rachel Coleman. Now here is a person that I can look up to, someone who doesn't profess to be perfect, in fact I'm pretty sure she consistently lets us know that she isn't. That's why I love her, that's why she's an amazing woman. There are no pretty pictures painted (or taken) of her life, she is candid, she is real. We met her at the NYC Buddy Walk last year. And you know what? I found out that Seth had someone that inspired him, someone that wasn't me. When Seth looked upon her his eyes widened with awe and he just smiled. His smile radiated and beamed and it was one of the most precious things I have ever seen. And what did Rachel Coleman do back? She hugged him, she signed "I love you" to him. She signed with him and talked to him and was just a wonderful person. So I doubt Rachel Coleman will ever ever read my blog, my lonely little space in this big world of the Internet. But Rachel gave me a way to communicate with my son, she gave him a proverbial voice when he didn't have one. Rachel used all of her skills to help people in this world and that is an inspiration to me all the time.

Last, but definitely not least, is my dad. My dad is not a perfect man, he has many, many flaws, but his heart is good. His heart means well. He always wants the best for us kids, all six of us. See people in life who improve themselves without help or support, my just sheer will . . . those type of people amaze me. My dad is one such person.

Born in Brooklyn to a very, very poor Irish mom and alcoholic dad, my dad trudged through to become the person he is today. He made my life possible through his struggles. My father didn't learn to read until he was sixteen and even then it was on a very elementary level. What I didn't know was that when I came home with spelling or vocabulary words that my dad went to our teachers and learned them so he could come home and teach us. That he swallowed his pride to do that for us means everything. My parents had six kids by the time they were 23 and 24. Very young parents with a lot on their hands. And my dad made it possible for my generation to be the first kids in our family ever to go to college and ever to graduate. Amazing. He broke so many cycles, changed the world with pure force of will.

If I told you that he had one arm, lost his left arm at 16 years old and he's a carpenter does that amaze you as well? The fact that he was/is left-handed as well? He pushed through so much and has been dealt a very difficult hand. If he lived through all of that then surely, surely I must be strong enough to deal with everything I have to in my life. Most definitely he gave me a part of his strength.

Many people, many, many people are probably wondering why my mom isn't on this list. She is inspirational and I do love her, but our relationship is complicated to the say the most and least at the very same time.

I am inspired on smaller levels everyday by the people I surround myself with. Drew, my friends, there is something in each one of the people that I choose to spend my time with that make me say "wow you are awesome, I wish I could be like that." So I do hope that I take little pieces, little pieces of everyone that I admire, everyone that made me smile and incorporate it into myself. I want to be a puzzle made up of the best people I know.

Friday, June 3, 2011

sticky gooey red cheeked mess

So amazingly enough I had one of those very precious yet messy moments tonight. 10pm in the emergency room - croup again. Fuckin' croup. It's the nemesis of every child with Down Syndrome (or a low immunity for any reason) and it has been something that just comes and comes and comes and . . . well we've seen a lot of croup here in my day!!

So usually Seth responds well to a typical nebulizer treatment at home but not tonight. No tonight he had to resist it and keep on being croupy. What does being croupy sound like you ask? It sounds something between a barking seal and an annoying teenage girl making yippee dog sounds. It's most definitely noticeable and not pleasant.

Seth is in bed currently, we just got home 5 minutes ago and of course I had to check Facebook and see what is going on with this blog. The urge to write is just too great. So here I am, post hospital trip. It is one of many but they are not without their precious moments, the little gems that make this journey with Seth worthwhile.

I meet the most awesome people in the ER. I mean moms who have kids with special needs, mom who think it's cool that I'm signing with Seth and moms and dads who just think Seth is adorable and treats him like any other child. It doesn't hurt that I know most of the staff there and have made some really good friends. I like people, I like their stories. I like to know what keeps them in an ER at 2am on a Friday night. For me it's normalcy - for them, well I know most of them are scared shit. And what parent wouldn't be??? Well here comes the messy stuff - I've been there so many times in so many ways that the ER isn't scary, it isn't intimidating, it's just kind of . . . boring. Yep it's boring. Bringing along the Ipad and a good book helps. (Shameless plug for the Ipad - nope I'm not being paid by them!) Moms - you must have an Ipad for doctors appointments - it's a life saver.

So I look at all these people, all of the people who only go to the ER maybe once every few months and yes, I'm a bit jealous. I'm jealous that a stomach virus or a few stitches is all they have to go through for a while. I'm jealous of their ignorance, of their innocence. I'm jealous that instead of being overly concerned with my child's well-being I'm constructing a to do list in my head. That is what Seth being sick is like for me - it's a glitch in my plans. For other people it's a big thing, for me it's another time he is sick and more time I have to deal with him being sick than other things that need tending to. I'm sad because I feel like I'm insensitive to Seth's needs all this time. Croup the 20th time is very different from the first time. I'm jealous that Seth knows the staff at the hospital so well - it's a double edged sword. On one hand this IS Seth's life - he will get sick more often than other children. If I let him think that this is bad or not normal then he will mourn for a life that isn't his. If I let him think it is normal then I'm just lying to him. Perhaps there is a middle ground . . . some way to tell Seth that this is normal . . for him.

Because my eyes are shutting . . . I will say goodnight. I hear my seal coughing away in the next room :(

In the beginning . . .

there was a blog by a very obnoxious and disingenuous woman. Yep that's the word I've been looking for all day to describe this person. You see . . . my son has Down Syndrome and every person I've met, every stranger, every new friend, every therapist, has insisted that I read this particular persons blog. And so I did. And in the beginning there was light and I decreed it good. But then I kept reading and reading and . . . well you get the point. Anyways it was tiresome. No ones life is THAT good. There isn't that much perfect in the world to go around. No one just "enjoys the small things". Hence the title of my blog. Enjoying the small, sometimes very messy things - I couldn't fit the very up there so now you know there was a very in there.

So what does enjoying the small yet messy things mean? It means relishing in moments as a mother or even as a person that I never would have thought to have before. I means cuddling on a very small couch with your toddler child as they cough and wheeze and hack their way through sickness. It means letting your child get dirty and have fun just because they CAN. Eating chocolate chip cookies on the couch and not worrying about getting it dirty. Watching your child pick up an ant and eat it without cringing . . . because hey the protein is good for them right? Eating ice cream and letting it drip all over without reaching for a wipe. It's hard but the moments are there.

For me it means sitting in the ER for endless hours through croup, pneumonia, throat infections and so much more. To waking up to two out of four of my mothers days with my son vomiting all over me. To laughing at the endless amounts of doctors appoints on my calendar and to looking forward to all of the good days to come in between.

The truth is I'm not about to pretend my life is perfect. I don't take perfect pictures . . . I take them of my son crying, with tears and boogers and all the bad. Because those bad parts make up life as well. Life wouldn't be the same without all that stuff. We can't have constant good. That would be boring, that would be too easy. How would I know how great my life is if I didn't go through the bad? How would I know how awesome my son Seth is if I didn't fight and struggle all the way? I wouldn't. That would be a terrible feeling to lose. Triumph, joy, elation, progress - those words mean nothing without the small, yet very messy things in the middle known to most as "the bad".