Thursday, September 26, 2013

"Hello my name is Deanna...I have a daughter who has Down syndrome...Nice to meet you."

I've been meeting a lot of new people lately. Wonderful, kind people.

And it has struck me as odd how I feel the need to slip into conversation that my daughter has Down syndrome. As if somehow, all the other facts about myself that I might present into an initial meeting are just the puzzle pieces that only make sense once I show them the picture on the box- Down syndrome.

It's not that people follow up the question of "what's your name" with "how many chromosomes does YOUR child have?" It's just that it has somehow shaped me- changed me- presented a new me that I don't feel completely honest without sharing the whole picture.

I could talk about my history in music. The instruments I play and how I came about playing them. My history teaching. Performing. How I now stay at home with two toddlers. How I love to make a home but how I am the worst at certain things like laundry. And gardening. How I love to blog and write. I could talk about  my struggles with anxiety. Impatience. How I love to cook but deeply crave a good Chinese takeout every now and then. Or Italian sit down restaurant with unlimited bread and a good salad. How I love to laugh. And follow a good TV show. I could talk about how I love to do things like Zumba. And how much of a fool I look like while doing it. I love to go to bed early. And sleep in. And slowly drink a steaming hot cup of coffee with lots of creamer. So slowly that I usually have to microwave it several times to get the steam back before finishing it. I could talk about how much I love my little family. And the hundreds of little things that my kids are doing now that I think are noteworthy like stealing the bath drain stopper and replacing it with a container of dental floss...which are both round objects. Coincidence? How I am not the best housekeeper but have come a long way in my organizational skills out of necessity because of soon having 3 kids 4 and under in a small house. And how I surprisingly enjoy this strange organizing thing and the peace and order it brings to my home.

There are so many little facts about me that I often share, but then I feel this urgent need to somehow mention my daughter's special needs in there somewhere.

For example: I have a master's degree in music. But I no longer teach or perform it because I got extremely overwhelmed dealing with all of Addison's extra health/therapy needs in her first year of life that I had to give it a break for a while. Then I got overwhelmed by two children close in age and my hiatus continued. Now I use my creative energy to write because I can do that while my children sleep without waking anyone, and I am truly enjoying the change in pace.

I stay at home with my two toddlers? What are their ages? Their actual ages or their developmental ages? This makes a difference in mothering them...trust me. It's not like parenting an almost 4 year old and 2 year old. It's like having 2 2 year olds. And why is there a difference between the two? Well...

Another example: I love to do Zumba or go for a run (although I haven't done either of these in about 15 weeks.) Things I tried for the first time after Addison was born with new knowledge that it was OK to try different things- look like a fool- and do things that make me happy even though I was previously afraid to try. Addison's birth really pushed me out of my comfort zone- in a good way.

I struggle with laundry? Partly because I have a 3 year old who likes to take all her clothes out of her dresser during naptime and then take off her diaper and pee all over surprise, random clothing objects. This goes back to her delays...and yes...Down syndrome. (This point can also go toward why I have become much better at putting organizational systems into place around our house.)

My son replacing the drain stopper with dental floss is amazing to me because each age appropriate cognitive act that he does is like a true miracle. Addison does amazing, smart things too- but in a much more subtle way and I often have to look much harder to see them...Down syndrome.

I love to write? What do I write about mostly...

I have made a big deal in the past insisting that special needs don't define our family- or my daughter- or me. But it just seems like I haven't been able to make it through a conversation lately without chiming in about the special needs in my life. And then when I meet someone else with special needs in her life I feel an immediate connection. Even if we have nothing else in common. There's just this moment where we both get it. Even though we're uncertain what "it" may be. So I want to put my side of things out there as soon as possible to search for that connection however it may come.

And it's not that I'm ashamed or embarrassed to tell people. I want people to know. If people are going to get to know the real me, this is a big part of who I am. Not in a depressed, sad way. In a factual, this is a part of my awesome life, just "is" kind of way.

My younger sister asked me a few weeks back how I was doing...outside of my role as mother. And I found I couldn't separate the two. Even the things I do as hobbies all somehow come back to mothering- writing...to process my role as mother- decorating/organizing...to make a better home for my family- cooking...to fill little bellies with yummy things- exercise...to have the energy to keep up with the two tots of terror. And mothering always leads me back to my unique path of mothering. It's different. And I'm not only OK with that- I need people to know that about me up front. So that the way they process the things I say is more in line with my intent.

I'm not telling a story about my toddler who destroys my house so you can snidely think "well, why aren't you using these opportunities as teaching moments?" I'm telling you this story about my toddler who has developmental delays and whose response to teaching moments looks far different than a typical toddler's response. I need you to understand that I'm doing the best I can. I need your support- but at the very least- your lack of judgment at my parenting skills. Because it is hard. And adding "Down syndrome" to that story changes things. And I need people to understand and sympathize with that- even if we just met.

Down syndrome is not the solo act in our lives. It is the background music. But it is always there. And when someone new comes into the room, I feel the need to explain what we are listening to. Necessary? Will I always feel this way? I have no idea.
Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

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