Friday, April 26, 2013

Selling Down Syndrome

Yesterday I met someone for the first time. She was lovely, gracious, and wonderful. Conversation led to all sorts of different places, but the one that sticks in my memory the most is the discussion we had about speech development.

She asked about Carter- whether he signed more or talked more. Because she was an older mom and lent such a safe environment to our conversation, I let myself be completely honest. It felt good.

My answer about Carter (he talks much more than he signs) led into me explaining how sometimes I get so frustrated because I feel like I've been working for three years on speech to have the final product of two one and a half year olds. But yet not even that because Carter's speech is so much ahead of Addison's speech.

The therapy, the exercises, the constant work for simple words over and over again- sometimes I find myself at a standstill- not having the energy to keep putting in the effort especially when it hasn't resulted in conversation with my three year old. It is frustrating. And discouraging.

I said that we have to work an extremely long time to see very little progress with Addison's speech, but when we do see small bits of progress- it is such a great reward and totally worth all of the work.

While I was venting, I mentioned how worried I am about her sugar intake and her recent desire to be eating it all of the time. Sugar is the only thing that has motivated her from day one. Right now we're using chocolate to motivate her to use the potty- in the past we have used it to motivate her for almost everything- PT, OT, and everything in between. It's amazing to see her work hard for a reward she desires, but at what cost? And because she is such a poor communicator, it's very difficult to get inside her head to see how we could cut sugar out completely and find a different alternative.

It felt amazing to be able to share that with someone who 1. wasn't out to judge me 2. had raised three children to adulthood and understands the frustrations that can accompany parenthood 3. was extremely sweet and kind- doing what I needed most- simply listening.

But then all of a sudden I felt guilty. She didn't have any connection to Down syndrome. She doesn't know Addison very well. She hasn't seen the huge amounts of good that offset that frustration.

All of a sudden, I wondered "Should I be selling Down syndrome?"

When I talk about Down syndrome- especially to someone new, should I be flying high the flag of AWESOMENESS and hide away all frustrations and worries? Should I refuse to let any bad creep into the conversation, painting a beautiful picture of a glorious childhood? Is it my responsibility, being so vested in a life with Down syndrome to SHOW THE WORLD how amazing it is to offset the high statistics of abortion and abandonment?

I think in my early days of blogging, this was my approach even though I didn't even realize it. Using Addison in gorgeous outfits as a prop, shouting the good, burying the bad, and refusing to work through certain frustrations because they were conveniently ignored for the sake of "preaching the good".

But as I sat across the table, staring at this wonderful person who I immediately felt was a kindred spirit, I pushed the guilt away.

Down syndrome is. And Down syndrome is a part of our lives.

It is not my job to sell my daughter as a worthwhile life to this world. It is not my job to sell Down syndrome as some sort of life accessory that adds a hint of fabulousness. It is not my job to bury feelings deep in order to make sure that this new friend walked away with warm, fuzzy thoughts about Down syndrome.

It is my job to mother.

And if that includes needing to vent to a brand new friend with kind eyes- then that is what I need to do so that I can return home to keep pushing on even though it is frustrating at times. I didn't get any answers or have a genie pop out of the nearest lamp and grant me enough wishes to solve my problems, but my spirit felt refreshed from being honest. It felt good to just be able to express myself without worry of how her response was going to make me feel.

Truth be told- parenting Carter frustrates me to no end. I'm frustrated by his sensitive gag reflex which lends to a lot of throwing up at inopportune times. I'm frustrated by his extreme curiosity which manages to get him into trouble faster than I can keep up. I'm frustrated by his overactive bladder and the diaper surprises that he delights in serving up.  I'm frustrated by his stubbornness, his messiness, his refusal to walk the beautiful line of reality that I have planned...taking instead a self-planned side route into disaster.

And yet if I say those things to someone in a need to vent, no one immediately jumps to the "well you must not love him" or "you must regret his life" or "clearly he is a mistake." So why am I afraid people will think that about Addison if I share my frustrations about parenting her?

My new friend last night smiled with encouragement and responded with words of kind understanding as I shared the things that had been heavy on my heart all week. My guilt fled away, and I knew that she got it. Parenting any child is rough. The "rough" will fall in different places for every child, and it's not our job as mothers to keep a stiff upper lip and refuse to acknowledge any bad. Because sometimes saying it out loud is exactly what we need to do in order to keep going to experience those great rewards that show up when we least expert them.

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