Friday, October 30, 2015

The Scariest Thing I've Ever Done

Today I did the scariest thing I've ever done.

The morning dawned cold and cloudy. We hustled through our morning routine until I had one little boy dressed like a parrot ready to be dropped at his school, one little girl dressed in her school shirt and appropriate hair for "crazy hair day" ready to be dropped at her school, and a small little boy who would be my tagalong whose thick corduroy overalls could not disguise the look of pure trouble.
After school drop-offs, we began our drive. A dark cloud formed over head and seemed to follow directly above us, shadowing the path ahead. Music played softly over the speakers, but even the soothing sounds of strings could not quell the quaking in my stomach.

Driving through Vermont during the month of October is a bit like driving through a postcard. We passed red barns surrounded by lush green fields framed by the wild frenzy of fall. We passed quaint streets lined with picturesque houses and stores. We mooed at every cow we saw. (Yes, we mooed a lot.) The colors lining the roads and sky seemed as though Orange married Red and then had millions of tiny leaf babies to scatter in the wind. But in spite of the beauty surrounding us, my hands began to tremble and a small headache appeared from nowhere.

I couldn't do this. This was too much.

But we drove on.

As we got closer and closer, the dark cloud seemed to lower itself closer and closer toward us. I slowed down. My life was flashing before my eyes. A few black birds that looked an awful lot like bats swooped low and close to my windshield and I wondered if this was the same sort of symbol as a black cat crossing your path? Seemed about right.

The artistry of fall surrounding us coexisted with my fear, almost as a sort of beautifully choreographed dance with the devil. There was no backing out now. My time had come.

We pulled slowly into the driveway. Eli was silent, lulled into complacency by the heat of our car, his snack, and the soothing music. (Plus, he was tired from all of that mooing).

I slowly stepped out of my snazzy SUV, feeling every single day of my 31 years (plus a few decades). A tear fell from nowhere, wetting my cold, cold cheek.

I stared straight ahead. There it was.

It stared back at me. Glossy and shiny. Tall and strong. Dark and formidable.

This is what my life had come to.

I could see myself in its reflection, and it was not a pretty sight. Old and tired, I wondered if this is what they meant by the rest being downhill.

Suddenly small raindrops began to fall. Then bigger ones. Thunder cracked. Lightening lit up the sky.

It didn't move so neither did I. We stared at each other, each daring the other to look away first.

A power struggle. Somehow I knew I would lose.

Rain fell in puddles around me. My tear stained cheeks were washed away with the rain. My headache began to subside in the cool of the storm.

It stood even taller, the rain bouncing off of it as if it wore a protective shield and could not be bothered with mere nature.

Suddenly, as I stared, I swear it winked at me. Mocking me? Or saying "it's going to be all right"?

The rain stopped just a suddenly as it began. Just then a man appeared. He handed me a set of keys.

I took them, wondering why my hands were no longer trembling.

"Any questions?" He asked.

I shook my head. The time for questions were long past.

"Ok well good luck!" He said, too cheerfully.

I nodded, afraid to use my voice.

"I hope you like your new minivan."

Minivan. He used the m word.

"Thanks. I think it will be just what we need." I said, and strangely, meant it.

I looked away, over at my small but stylish SUV, witnessing the death of the "We'll NEVER have a mini van dream OH NO NOT US!" dream. Gone. Poof.

And then the moment was over as quickly as it began and we suddenly had a vehicle that had an extra seat for the new baby. It was nice to have that taken care of. Ok, so maybe it wouldn't be the worst thing in the world.

I climbed aboard, noting all of the space, the seats, the cupholders, the walls oozing with convenience with which to haul my crew. Suddenly, it felt like I had come home.

Sometimes the scariest things...are the rightest things. Or so my new minivan tells me.

Tuesday, October 27, 2015

School and Down Syndrome Update

I used to write a lot about Down syndrome. It used to be a big part of our lives. It used to fill up spare nook and crannies and overwhelm all the extra spaces. I used to spend long hours pontificating on what Down syndrome means to our family.

But now?

I don't think it matters what Down syndrome means to our family. I don't think it defines anything at all to tell you how I feel about Down syndrome. The only thing that matters to me is what Down syndrome means to Addison.
Now that she has entered kindergarten, she has changed into quite the big girl. She is independent. She is stubborn. She is delightful. She is frustrating. She is amazing. She is ordinary. She is an achiever. She is delayed. She works hard. She doesn't work hard unless bribed with m&ms. She loves to pick out her clothes and dress herself. She will sometimes refuse to take herself to the potty just because she doesn't want to put out the effort (this is where the m&m bribing comes in).

The biggest thing I have noticed is this mother/daughter friction. She resents me for helping her. She resents me for not helping her enough. She is annoyed if I am trying to hang out with her and talk. She is annoyed if I'm trying to fix dinner and she wants me to come do something for her instead. She shuts me out. She welcomes me into her world with girlish whispers and face splitting smiles.

All of these things I don't chalk up to Down syndrome. I don't think that defines her or who she is right now. I think all of these things are characteristics of a very typical girl, working hard to figure out kindergarten and transitioning to life as a school child.

She is currently going to school in a mainstream kindergarten classroom- full time with a full time aide (who tells me Addison gets annoyed at her for helping Addison as well. This girl wants to DO IT HERSELF.) In addition to her classroom teacher and para, she has a special ed teacher and a team of therapists who are all committed to educating her alongside her peers. I could tell you how I worry about her getting so behind that she gets frustrated and stops trying. I could tell you how sometimes I can't sleep at night wondering how she is treated by her peers (or how she treats them). I could tell you how frustrated I get by not knowing what her day consisted of from her point of view because she can't/won't tell me more than a few words. I could tell you how THANKFUL I am for a team who is bending over backwards to give her the best school experience I could ever imagine (they put together a "daily report card" of her day for me after I told them I felt frustrated by not knowing how the day went down). But I really don't think my worries and frustrations and feelings matter in this story. The thing that matters? Is Addison's point of view.

I know that she wakes up every morning excited and yelling, "GET READY FOR SCHOOL!" If she comes to wake me up, it includes telling me, "GET UP! Friends! Classroom! School! GET READY!" with more enthusiasm than I have ever had for anything. Ever.

I know that when weekends come and I answer her with, "Sorry sweetie. No school today. It's the weekend!" She is momentarily crushed until she realizes that means she gets to spend time with Daddy.

I know that she gets excited about her peanut butter and jelly sandwich on homemade bread for lunch and will often save part of it to bring home and savor bite by bite as she watches her brothers play. I know that she is quite picky about what she will wear to school and often hides the clothes I pick out if it doesn't suit her fancy. Oh and she is obsessed with boots and leggings. (Girl is up on her fall fashions).

 (and then there are the moments when what SHE picks out isn't going to all...)

I know that her counting is really coming along, letter recognition is strengthening, and she is obsessed with reading even though her sight words can be counted on one hand. At night time after I read the kids their story, she will grab the book from me and say, "ADDISON read it now." With quite the bossy confidence.

I know that when we do our afternoon song time, she knows ALL the words to ALL the songs and sings along quite lustily. (The ABC song has gotten quite specific)

I know that when we went to her classroom open house, she was immediately flooded with classmates happily shouting, "It's Addison! Addison is here!" Almost as if "They party can get started now!!!" (This also happens when I drop her off)

I know that she falls fast asleep at 6:15pm every night. Exhausted. Snoring. Sprawled out on her "new bed". (This is what she still calls the bed that we bought her mid-summer.)

But as I see it- this story is about a little girl adjusting to school and learning. It has nothing to do with Down syndrome.

I am very careful about posting specific school details because:
1. I want to value her teacher and para's privacy
2. I want to respect the school's privacy
3. I feel that sometimes parents of older kids read about decisions we are very carefully making and automatically assume our situation is JUST like their situation and then I get a ton of message of well-meaning friends who tell me that I'm making the wrong decision since that is not what worked in their child's situation. Being totally honest here- that is not at all helpful. All of our kiddos are quite different not to mention the school/settings are different.

I feel lost as a new school mom and yet I feel empowered as I watch my child succeed in her own way. I feel overwhelmed as I juggle her drop-offs, Carter's preschool drop-offs, baby appointments, and a sweet baby Eli turned Terrible-Twos-I-Will-Run-Away-From-You-Every-Chance-I-Get Eli. And yet I feel strong as I have been stretched between many things...and yet still find a way to make it all work. Well. (It helps that Baby Sister has graciously allowed me to return to some half caf coffee).

But once again- when it comes to the story of Addison, of Down syndrome- I am just a minor player in the game. Addison is the one up to bat. It's her perspective that matters, and I am THRILLED to be hearing more of it from her.

I find myself backing off the Down syndrome posts because I am watching and waiting for her to pave the way to the next thing. I don't want to define it for her by my blog pontifications. She surprises me every day, and my job is to work on communicating with her, understanding her, and giving her the tools she needs to continue to succeed.

Oh. Confession time. I don't spend a ton of time outside of school hours working with her on her letters, numbers, and reading (other than our usual reading time). She goes to school every day from 8:00 to 3:00. When she comes home I want her to play with her brothers, to get some down time, to do things like help me around the house and learn life skills just as important as school stuff (in my humble opinion). I want to BE with her instead of pushing more learning down her throat when she is already exhausted and barely hanging on until dinner, bath, and bed. I am a firm believer in a balance between learning life and learning academics (with an emphasis on learning life for all of my kids at this point).  Thankfully, her school assigns minimal homework and makes this really work for us.

This confession probably means I am a really bad Down syndrome mom. Go ahead. Say it. (Confession #2: I might be riding a rather intense Pregnancy Cranky High. Yes, that is a real thing.)

But like I said before, I don't see myself needing to focus on being a great Down syndrome mom. I am focusing on just being an OKish regular mom to all of my kiddos. Oh and surviving. I hear that's a good thing to do.
So many people have been asking about school updates...and "Hey, did you forget it's Down syndrome awareness month, dear Down syndrome blogger?"

Here is your school update. Here is my reason for not posting a ton about Down syndrome this month. I share with you Addison- the whole picture (yes, I am on Instagram more than anywhere else right now. User: eanfe) I'm sure I will get back to specific Down syndrome advocating, but for now we are in a transition period, and I am hanging on for dear life. This new confident, independent, annoyed-with-me-like-a-teenager Addison takes everything I've got to mother. And yet it is amazing to see because it is so normal.
(one of the more seasonally appropriate outfits that she put together)
But above all else, I am loving getting to love on my girl as she grows. And hearing her express that love back to me. I wouldn't trade this time for the world.

Thursday, October 1, 2015

Motherhood Unexpected FREE TODAY

If you follow me on fb or Instagram, chances are you already have seen this. But on the off chance you only look here, I wanted to post this here as well. (-; (Feel free to ignore if you've already seen this!)

Today, October 1st, marks not only the the start of my favorite Vermont month, but also Down syndrome awareness month.

To kick off the celebration, my book Motherhood Unexpected is FREE today ONLY.
Today is a great day to read it if you haven't already had the chance OR to share it with someone you think might enjoy it. You can't beat free. Plus, you are helping spread the awareness and message that this blog was built on. So spread the word! Let's help change the way the world looks at a Down syndrome diagnosis. And thank you. Thank you for sharing and reading but also for loving Addison and for opening your mind to our little world here on the blog. We very much love and appreciate you.