I Want...

For those of you who know me, the me you know is always smiling.  The me you know always has a kind word, a hug, a joke or a shoulder for you.  The me you know has muscles that are under my skin, as well as in my voice.  You know me as the "Power Mom".  The mom who stays up for days at a time, but acts completely unaffected.  The mom who has a schedule that could kill a rhino.  The mom who stands up for all others and the mom who has devoted her life to her children.

You are in so many ways correct.

The mom you don't get to see is the one who deals with her pain every day in private.  I am the mom who cries in shower so her children never see.  I am the mom who tells the world her families secrets to better educate her children's peers.  I am the mom who will explain her life to anyone and everyone who will listen, to teach people that we are here and we are not a dirty little secret.  It is me who corrects strangers and loved ones when they use language that twists a dagger in my heart.  It is me who carries the words I heard or saw around with me for the rest of the day.  For the rest of the week.  The word R*tard chokes me.  Short bus is like a punch in the spine.  When I see people mocking someone with Intellectual Disablities I fight the urge to burst into hysterics.  Does anyone care about the mom rocking her non-verbal child as they and their children throw that language around like it's funny?  No.  No one is thinking about us,  because it is easier to pretend we don't exist.

But we do.

We exist so much that we absolutely love you.  We love your children.  We buy extravagant gifts for the parties we are invited to.  We want an invite next year.  We all give the biggest hugs.  Those of us who can talk, tell the best stories and all of us can make you roll with laughter.  We are super cute and we smell nice.  We are always grateful and have awesome manners.  Bo and Cote perhaps not.  Maybe not even Gage.  Keith and I have awesome manners.  Unless Keith is really tired and then he is more like a zombie.  I have impeccable manners.

I am the mom who drinks three pots of coffee a day just to make sure the kids are taken care of.  It is me who never has a clean house anymore and it is me who feels like a slob for it.  It is me who goes to town with food on her clothes.  Bo and Cote still hate to eat and I am still going to fight them till the death on it.  I will fight them until the end of time if I have to, but by damn, they are going to eat.  Do you know what my personal feeding goal is for them?  Our lifetime feeding goal?  I dream of going through a McDonald's drive through and ordering them french fries that I can hand back to them.  Unattended.  Unpureed.  Salted. Something as insignificant and unhealthy as fast food is my LIFETIME feeding goal for the kids.  That's me... I am the naughty mom.

I am in no way perfect.  My hair is falling out and I have gained 50 pounds since Cote was born due to stress.  I never can find my glasses so I walk around with my world in a blur sometimes, just because I don't have the energy to even look for them.  I am overly sensitive in so many ways.  If someone says something mean to me, I crumble.  I don't let it show though, because that's not my job.  My job is to make sure I can run my rear off for 20 hours a day.  My job is to try and do it with grace so no one knows I struggle.  Struggling shows weakness. The weak don't survive in my world.  The weak get shunned.  

My job is to make sure no one know's how hard my life is sometimes.  If anyone knows how hard things are, that is all the more reason they have to push me farther away.  All I want is for my children to have friends.  Even just one friend a piece.  I would happily die right now if I could ensure that they each get to have one friend to follow them through their lives.  No one wants their children to be friends with mine.  No one wants to force their child to get to know mine.  I just want to tell parents that sometimes life is about reaching for things outside your comfort zone.  That children learn by example.  That I just want my children to be liked.  

Sometimes I don't want to always have the knowledge in the back of my head that there is a 50% chance my children will end up in an institution or a home when they get older.  That if anything ever happened to Keith and I, they could end up in one as children, teens or young adults.  That when Keith and I pass on, they will be pretty close to alone and they will not have families of their own.  That the world will pass my babies by and they won't be able to understand why I am not with them.  Sometimes I don't want to think about the fact that children like them are put in homes everyday because their families cannot handle them.  That once they lose that "baby cuteness" they are just too hard to deal with.  Sometimes I pray for the strength to push me through the years and to be able to help them gain ground cognitively.  To help my body hang in there for the long haul.  To help my Gage not become bitter.  

Sometimes I don't want to have to fight for everything.  Sometimes I want to be offered something for my children.  Sometimes I want some recognition for how hard my family works for independence.  My family does not take everything that is offered to us.  Instead, my husband works his rear off, working 12 hours days and double shifts at Polaris when he can.  We pinch pennies until the bitter end.  We thrift.  We barter.    Sometimes I want things to just fall into place.  Sometimes I don't want to have to get in verbal fights with people in the school system or insurance companies or medical professionals.  It doesn't mean I won't get in a fight with them, but sometimes I just don't want to have to.  Sometimes I want to hear that they understand and they will do the best they can to help the children.  I want hear that without fighting.

I want to know people understand Gage is a wonderful kid.  I also want him to get the help he needs.  To understand that some of the things he does are not because he is naughty, but rather just trying to cope with his sensory issues.   I ALSO want to survive being a parent of three children with Special Needs.  I want a back rub and I want more coffee filters.  I only have one left.

When you read my blogs I know that at times I sound like the most joyous person in the entire world and at other times I sound like a Downer Downerson.  That's life, my friend.  Sometimes we are having an awesome day here and sometimes we are not.  This blog is my way of getting it all off of my chest or bragging about current events in our home.  Nonetheless when you read my words, I hope you walk away with a better understanding of what our lives are really like.  It is not a bed of peonies and it is not a living hell.  

It is just life and it's our own version of it.  

What I want, is to give you a peek at it.