Monday, June 25, 2012


Lately I have been thinking a lot of down syndrome.  The effect it has on our life day in and day out and  mainly on Nolan's.  I think it has a lot to do with pregnancy hormones, sleepless nights during these last couple weeks, the anxiety and excitement of this pending birth.  I read a blog, here, I love her blogs, mainly because they are very honest and real and I relate to most everything she says.  Anyway, it got me thinking a lot, about the fact that what really bothers me about DS is the label itself.  This label of your kid is (insert here).  Not just a kid anymore, but a diagnosis, larger than him and along with that is all the stereotypes and images that come with it, and I can't stand it!  I relate so acutely now to other minority groups, how they are thrust into categories and without one word spoken judged for a certain feature of their face or skin color, which in reality is rather ridiculous.  

Truth is that yes, there are valid points in stereotyping people, often times it is accurate and you can find truth in it, but there is of course so much more.  I cringe when I see an overweight, unkept person who has down syndrome and think, "really? is that Nolan's future?".  I know that it isn't, the one thing this mama knows is he won't be unkept, as it is something within my control, but as for everything else, not really.  People's instant judgements, critiques, cringes, lack of understanding, I got nothin for that.  And it stings, to the core.  Why is it that society is cruel and shallow? So selfish and unrelenting?  When ALL of us, every single one of us, simply want to be loved and accepted and acknowledged.  Why is that so hard?  I wish it weren't.

I know this, I can't stand thinking about the future with Nolan I get choked up, sick to my stomach and pulled back to reality that is now.  We could all be dead in a year, and I would have waisted this precious time having ulcers over something that will most likely be nothing even remotely similar to what I think.  I realize that after almost two years and all the perspectives that have changed right now.  I mean when Nolan was born I couldn't imagine what he would do if anything?  I thought day and night about his level of functioning and what it would "look like".  Well, here we are and does he walk, no, does he talk, no, but he is amazing and giggles constantly and explores his world and gets into trouble and wrestles with his siblings and we adore him and are just perfectly fine with his accomplishments, so there!  Who knew then that we'd be content with him as HIM.  And won't we when he's 10 or 20 or 30 too?  Of course we will.  Because at the end of the day, DS doesn't matter, nothing matters more than the fact that he is our son and we will never see him as anything less.  That's all we need to know today about tomorrow.

Tuesday, June 12, 2012

a dad

We all have really you do.  Maybe he isn't involved, or what you dreamt of, maybe he's passed recently or years ago, but in all of us is a place that yearns and/or loves our dad.  What makes a good dad? Is it the one that keeps the garage cleaned and organized and teaches you the basics in home care? Is it the one that would rather get down and dirty in the mud with you and care less that you are covered head to toe in filth?  We all have our images, dreams and expectations of what makes a dad.

I am one blessed girl.  I got a good one.  And when I mean that he is good, I mean that he has stayed up till midnight solving world politics or well um, boyfriends, either way, he listens and listens well.  He has a skill at making you feel important and like nothing else matters when you are around him.  He's taught me many things, about love and life and I think that's what a good dad does, for their little girl or teaching their son to become a man.  They know the fine balance of love and security and pushing to make them strive for more.  My dad hasn't had the easiest life, he's had his share of struggles, one of the reasons I think that he constantly doesn't sweat the small stuff and has a way of putting all things in perspective.  He is patient, sits quietly when you discuss problems in your own life, waiting it out for you to find the answers, even though sometimes I wish he'd just TELL me them, he won't, he knows better.  He knows and trusts that I will find my own path, my own identity and take my own journey and isn't that what a great dad does?  He says to you, 'I am here', but doesn't push you 'there'.

My dad is not without flaws, for instance he is known to drive without stopping for ANYTHING, so you better pee before you leave and not drink a drop, because listen, he ain't stopping.  And crowds, oh my dad loathes them, so we never did many things that involved high traffic stops as kids, I didn't go to the MN State Fair until I was a teenager and EVERY time we saw fireworks it was out of the back of our car window driving away, to "avoid" traffic.  He also loves newspapers and that means all of them all over, all the time.  We all have our things, that make us uniquely us and uniquely well, annoying, but now they are memories I treasure.  Because in that car driving away, he would make up games like, "Let's Make Cents" where we had to guess correct random fact answers and earn certain amounts of money before the time ran out, we aren't talking big bucks more like a nickel or dime, but none of that mattered it was the games that did.  I see the fun he still brings for my kids, treasure hunts for our pirate loving boy, endless maps that he draws and pads of paper personalized with pirate emblems and his name, because he knows how to do the little things in life.  He gets it.  All of it.

Any time I tell my dad how much he means to my life or me, he always follows it up with what I mean to him, what I add to his life and how lucky he is, we fight about it, the value we hold in each others life.  He's remarried now and has numerous hats to juggle and people who love and wish to spend time with him and I have to respect that, it isn't easy.  Even at 35 I want to spend time with him like old days, when we would sit at the kitchen table and chat.  I remember when I moved out, I am the youngest and it was hard on him.  I think how ironic for how much trouble I was as a teenager, he still missed me and our chats and I did him, how many 18 year olds can say that?  But, it's true.  I am that lucky.  The bond that we have is indivisible.  It always honestly has been, something special between a little girl and her daddy. 

I see it cultivating between Audrey and Jeremy, it started the moment that little girl was placed in his arms.  Jeremy changed, mood shifted, life altered, he has a little, baby girl.  As special as my dad is and the wonderful love we have, I also am equally choked up by moments between our princess and her dad.  To see how differently he holds her, tickles her a touch more gently, lets her always win, not to say that he loves Graham or Nolan less, of course not, but a girl and her dad, just something about it.

I see how all of our kids react when their daddy is home.  How they light up and "attack" him, their favorite activity of late to wrestle him and play "monster".  Nolan even gets in on the action, and lately has learned some kung fu moves of his own.  It's awesome, knowing they are making moments and memories of their dad and that time they spend with him.

I have always been envious of the neighbors who's husbands have the perfect lawns and garages, organized down to every screw and our 'workbench" well right now as I write it houses a few diapers, bubbles, couple of cd's, a saw, a drill and a variety of other misplaced random items, and honestly it's rather clean at the moment!  So, to say the least, my hubby's strong suit isn't in a clean garage or weed free lawn, but as he gently and well not so gently reminds me, what do you think those guys are doing as they spend all their time cleaning and organizing those spaces, where are their kids? And he's right.  He's cool with hiring someone else to mow our lawn, he'd rather spend his time playing with our kids.  He does all the time, he is the "fun" dad, who throws them the highest, gives them treats when mommy says no more and tickles them till they cry.  So, how can I complain?  I can't, he's right, completely right.  Shit, did I just put that in writing....

Sunday, June 3, 2012

acceptance vs denial

As moms young and old, experienced and new, we all go through it.  The look, the roll of eyes, the judgment, it strikes in a variety of places, the grocery store as you stuff donuts in your 2 year olds mouth, Target when they are screaming "mean mommy" at the top of their lungs, at the park when you take them off of the swing after 45 minutes of pushing and they look as if you chopped off their leg, no matter the circumstance, the thing that is always inevitable about being a mom is judgment, and worse yet, from other mothers.  It starts really when you first find out you are pregnant, everyone has an opinion, how you should breastfeed and for how long, how your labor should be, if you should sleep with your baby, you get advice, some well intentioned, some pointless and rude.  But, in any regard it surrounds us.  I like to think of myself as someone who regularly shrugs off judgment and defines my own path, I pride myself on my inner confidence, some would say, it's cocky, pompous, but me, I just like living what I believe to be the best for me and it works.  So, at first I got sucked in, knocked off my confident pedestal and felt shaky.  Then soon enough 15 months in, with two babies, I got the groove, felt good, knew what I was doing, well as much as you can in any given day as a mom!

So, when Nolan arrived, the shock of the diagnosis hasn't been the most difficult part for me, honestly, this whole fitting in to this new world and feeling comfortable as a mother to a child with special needs, that is the most challenging.  I have a way I WISH I could do it, that I WANT to do it, that if I were stranded alone on an island with my family, it is how I would do it, but it's different with society.  You may say, why? Screw it, do what you feel is best.  But, here's the thing it is isn't that easy.  See, there seems to be this underlying judgment between mom's even in the special needs community and in my experience even more so.  How many therapies are you doing?  How often? What new techniques are you trying? Have you read this book?  Have you heard about this study?  I soaked it up in the beginning, feeling that was my "new" path, I HAD to go down, so why not go willingly?  But, now? It just doesn't fit me.  It's not just about the therapies that I am not a huge fan of, and question their long term benefits in the real world. It's the whole vibe of this society, this club of extra chromosome babies.  I just want to be a mom to all of my kids, I don't want one singled out at "special" or "different" based on one tiny little gene.  I feel like they are all special and different and I can single each one of them out, but I don't and don't want to.  I want to love them, cherish them and meet them where they need be, but at the same time, function as a family, above all else, above the diagnosis.

One of my favorite bloggers gets criticized for this, people feel that she isn't "real" enough, because she doesn't complain, nag or moan about Down Syndrome, instead they say that she paints an unrealistic picture of life with a child with special needs and it isn't all rainbows and unicorns.  Don't we all know that? Doesn't every parent on this entire planet of ANY child with ANY needs know that raising children is TOUGH and LONG and HARD?  I just don't understand why in our community we need to have that "angst" voiced to be "real".  Now, in saying that, do I sometimes have bad days when I am sick of being pregnant and hauling Nolan around and feeding him with a freaking spoon and he can't stand up to be picked up, so bending over one more time may just be too much for me, YES, HELL YES, I want to scream SHIT, when are YOU GOING TO WALK ALREADY!  Of course, I have those days, of course, I wish instead of screaming at the top of his lungs, he could say, Mama thirsty....ANYTHING!  But, he doesn't and he won't most likely walk or talk for years to come, so what is the sense in crying and moaning about that, or sending him to therapists or appointments to make him what? Different? Easier?

You see, I often read posts and blogs about people who have positive outlooks on special needs and even have been in conversations with other mothers and they say, "just wait, it gets harder." Like you need me to suffer with you; to feel you.  And if I don't relate, if I don't go there, I am in denial and not fully ready to accept my son.  It takes me to many well meaning people who talk about meeting their cousin or friends kid who is older with down syndrome.  I am not in denial or avoiding the inevitable because I don't want to go to the annual conference or read literature endlessly, or attend dances and functions that right now, Nolan doesn't care or need to go to.  See that's the thing, do I want to go? No. It's just not my thing, I compare it to if I had cancer.  Some people walk and shout from the roof tops that they are survivors, 5 years 10 years 20 years later, they wear ribbons and put them on their cars, they go to support groups and others, you never knew had it.  It doesn't mean that those who chose to remain intimate with it were in denial or embarrassed or felt alone, it just means they don't need that, it isn't their outlet and that is perfectly OK too.  I don't judge either, it is THEIR way of dealing and handling it and we all should have that right.  But, in saying that, for my son, I will go, when and if he needs and wants to attend functions, of course I will be there cheering him on, just like I will give my sweet princess Audrey a Karate/Pokemon party she is requesting, do I want to NO!  I want ponies and princesses, but she wants Pokemon and Karate, so that is what we will do.  I will do anything for any of our kids to make sure their needs are met and desires fulfilled to help them become healthy, happy adults.  And for Nolan that may mean, being involved more in the down syndrome community, where he feels connected with his peers and when that time comes, I will be there with bells and whistles!  But, for now, it doesn't help me, and isn't that OK?

I guess it's very difficult to put into words and explain to moms of typical kids but also special needs, I invite conversation, will chat about my kids all day, everyday, but to define my life or our family's life as down syndrome, well, that's silly, its 100 other things too and because we don't live and breath it, or talk/think about it every day, doesn't mean we aren't supporters of people with special needs, or that we love Nolan less or are trying to hide it or run from it. It simply means that we embrace all of our kids; in all ways; all of the time.