Monday, January 29, 2018

It Is Never Okay To Mock Someone With Down Syndrome

I am disgusted.

I am angry.

I am afraid.

Also, I might be a little speechless which is why I don't even know how to say this.

This past week, two major incidents flashed across my newsfeed.

1. A comedian on Netflix used the word "retarded" as the butt of his joke...but then he decided to take it even further to replace that word with "having 21 chromosomes"....deliberately targeting Down syndrome in his mocking hilarity on being stupid or ridiculous.

This is not funny.

2. A LulaRoe retailer, during a live sale, had a slip up (no worries, happens to the best of us!), but he chose to cover his slip with a deliberate mocking, pretending that he had Down syndrome and THAT was why he messed up.

This is not okay.

The worst part is, as concerned people voiced complaints, Netflix sided with the comedian. LulaRoe sided with the retailer.

With sales, page views, and the buzz of controversy increased popularity on the line...

No one sided with Down syndrome.

Money won out over human decency this week.

And this is why I'm afraid.

Just a few weeks ago, I was thinking how far Down syndrome advocacy had come. When I first started blogging, I felt this huge need to share our lives with Addison. Not because I was such a brilliant writer or what I had to say was so noteworthy. No. I wanted to share life with Down syndrome to take away the stigma. To show the joy. To let you peek at the normalcy of it all.

And a few weeks ago, I honestly wondered if my blog was still needed? The interwebs are now flooded with new families with babies with Down syndrome sharing their beautiful, normal, chromosomally enhanced lives. People are advocating just brilliantly all around, and I have enjoyed taking a bit of a back seat and watching.

Until this week. As I stared at my screen, hoping that I was reading these words incorrectly because how could this be?

How can people publicly and deliberately mock Down syndrome as if this is normal and okay?

IT IS NOT.

The LuLaRoe retailer, after hearing this backlash (and realized he might lose sales!), apologized for his actions. And yes, we are to forgive. But also, some actions...no matter how much you apologize....deserve to make you lose your job.

AND HE DIDN'T.

This actually then became quite a bit deal as the NDSS then cut ties with LulaRoe which is super SUPER sad because several families that I follow with adult children with DS, LOVE the LulaRoe brand because it fits their kiddos so well but they now feel like supporting this clothing brand is now supporting a mocking stance toward Down syndrome.

The ramifications of this man's choice are not pretty.

Furthermore, the fact that this happened with two separate men....two separate companies...in the space of one week, tells me that this isn't the problem of one individual or one company.

This is wider spread than I think any of us realize.

People think it's okay to laugh at Down syndrome. People think it's okay to mock Down syndrome.

AND IT'S NOT.

In a moment of unplanned trouble (or in a calculated thought out moment of "how can I get the most page views?), this is where their minds went.

As I stare into the vulnerable, almond-shaped eyes of my daughter, watching her work hard and rock life in her own unique way....and then watching a man online take his hands to either side of his face, pulling his eyes back to resemble that same almond shape as he MOCKS ABOUT HIS MISTAKE....

I am disgusted.

I am angry.

I am afraid.

I am afraid for Addison. Because I didn't realize that this was the world that she was growing up in. I thought our advocating had made a difference. I thought that the disability temperature had changed.

Apparently, I was wrong.

I just want to wrap her in protective bubble wrap and never let her get hurt. One day, she will be old enough to realize these things. One day, she will see someone mocking her....for the part of her that God beautifully and perfectly designed....and with tears dripping from those gorgeous eyes, windows straight to her sweet soul, she will ask, "why?"

And I won't have an answer.

Can we just stop with the mocking? Can we choose kindness? Or how about even...if you don't have anything nice to say, DON'T SAY ANYTHING AT ALL.

Next week is Addison's birthday. My girl is turning 8. She just started ballet classes, she is loving second grade, and her line up of friends at school makes my heart sing.

Maybe my advocacy means nothing. I don't know. But I have to say it. I have to say that the next time you're tempted to mock Down syndrome or support someone else who does, remember it's not just letters spelling out words.

It's a little girl in ballet class. It's a little girl loving chocolate. It's a little girl reading in school. It's a little girl walking hand in hand with her friends.

It's a little girl with feelings....and a huge heart....and incredible worth.

I'm begging you. Stop. Please. Stop.

Let's support Down syndrome. Even if it costs you.

Because she is worth it.


Wednesday, January 17, 2018

Burning The House Down


This time of year brings back all the feels as I remember the final few weeks that we waited to meet Miss Addison for the first time 8 years ago.

While I have shared a lot about the pregnancy, her prenatal diagnosis, and the overall uncertainty as to what was coming, I don't think I've shared how I almost burned our house down while on bedrest.

And how it was completely my fault, which showed just how inept I was to handle adult things. Which then leads me to seriously question how a couple short months later, the hospital trusted us to leave with a medically fragile infant who required g-tube feedings, full time oxygen, and a medicine schedule that almost required a full up nursing degree.

They say special children require special parents. I say that special children make parents into something much better and stronger than they were previously, making them then able to do what they need to do to keep all the people alive. At least this is true in our story.

But back to the house burning down.

Because of our high risk pregnancy, we had lot of extra tests done. One of these tests told us that there was a very high chance that Addison would be born prematurely. (She wasn't. Unless you count an induction at 39 weeks and 31 hours of excruciating labor because she decided that SHE WOULD NEVER BE BORN as "premature".)

Because of this test result and some of the physical stuff that I was going through, I was put on temporary bedrest. I was to stay as unstressed as possible. To RELAX. To not worry. To make sure she stayed in there cookin' as long as possible.

Oh okay. Missing days of work with nothing to do but sit around and ponder how my unborn baby had Down syndrome and who knows what kind of physical problems and the entire pity party I had going on at this point in the pregnancy....this was all SUPER relaxing of course. (sarcasm font)

I was lying on the couch, trying to still my mind, when I received an email from a student WHILE they were supposed to be in MY CLASS with the sub and I was all like "why are they emailing me during class and I should BE THERE to keep these kiddos in LINE."

It was then that I decided that I should make a nice, calming fire in the fireplace. Surely as I stared at the dancing flames and felt the warmth fill my house, I would relax. I would build an ambiance of nonstress by building the perfect fireplace fire to distract me.

I decided to use a firelog starter that I had picked up on clearance for .50 (thrifty!!!!) to create as little work for myself as possible. (Look at me, rockin' bedrest!)

Also, before Aaron left, I had asked him to open the damper as I was still confused how to do this, BUT I knew it was important and that he could take care of it for me.

Done and DONE.

Except the wind somehow blew the damper shut (but I didn't realize it) and so this cheap, fire starter log immediately started to fill the house with billowing, black smoke. So much smoke, I knew I should get out of the house and not breathe it in. (But HEY that starter log did start a fire SUPER FAST! So win?)

I couldn't reach Aaron. I couldn't put the fire out as it was now roaring. I couldn't reach the damper even if I had realized that this was the issue.

What's a girl to do?

"911 what's your emergency?"

Next thing I knew, I was standing out in the yard, large and pregnant, sobbing, while dozens of men in uniform flooded inside my house to put out my "fire". (they ended up just opening the damper and then blowing out all the smoke OH MY WORD THE HUMILIATION)

Meanwhile, we live on a somewhat busy, 2 lane road. We also live right down the street from both the police and fire stations. This must have been a slow day because soon firetrucks and police trucks and ambulances came in such large numbers that the entire road was shut down. I almost imagine that every emergency vehicle in the state of Vermont was surrounding my house that day. It was dramatic.

Traffic on the busy road was stopped completely. Long lines of cars parked along the road, as far as the eye could see.

I could feel them all staring at me as I stood sobbing in my front yard in my pajamas in the middle of the afternoon.

Black, thick smoke was billowing out of my newly purchased home. (Adulting is hard.)

And I was NOT RELAXING and what if the baby came TODAY??? (low stress point achieved! Obviously.)

Did I mention we were entertaining an out of town guest? Yes, just then Aaron pulled up with his friend (they had been all the way across town and it took them a minute to get to us as traffic was stopped).

The emergency personnel secured the house and slowly departed. As we all walked back into the house, the first thing that struck me was all the black cobwebs. Black cobwebs? I don't understand? Were these spun while I was outside? Where did they all come from? (face palm)

This was not my finest moment. BUT spoiler alert....my house didn't burn down...Aaron had a great visit with his friend...Addison didn't come early...and students all survived the day with the sub just fine...and the fire, police, and ambulance response time is EXCELLENT to my house which was quite reassuring as we then brought Addison home not sure what might happen day to day.

I love looking back and laughing at traumatic stories....after they are all done.

So yeah...these weeks are packed full of memories from this anticipatory time before Addison was born. I also love looking back to those vulnerable emotions and questions, knowing now that there is a "happily ever after" to my grief at her diagnosis. I wish I could go back to Deanna then and show her a picture of what life would be like with Down syndrome. I think this was the relaxing info that I really needed. Not a fire.

Lesson learned. (-;

Monday, January 8, 2018

It Has Taken Me 7 Months To Be Able To Tell This Story

(this post includes affiliate links)
I need to talk about the day I looked out my window and saw my kids pooping all over the driveway.

Yes, you read that correctly. Yes, this was just as bad as it sounds.

It all started with a ginormous box of Fiber One bars.

Honestly, I blame Costco for having this city-sized box on sale. If Costco hadn't tempted me to buy SO MANY delicious, chocolate, fiber-packed bars, perhaps this never would have happened.

I was thankful when I saw the sale. THANKFUL. I had no idea the horrors that were coming my way. I was just thinking of Addison and her need for fiber and her love for chocolate.

I did NOT SEE THIS COMING AT ALL.

To understand this story fully, you must first know that this story happened 7 months ago. It has taken 7 months for me to be able to say these words out loud. And as I recounted it this morning and started crying with hysterical laughter, I thought that maybe the trauma of this event had faded to memory and maybe I should write this out as a warning to all the other moms out there (or perhaps some sort of birth control ad?....just thinking out loud).

7 months ago the kids were halfway through summer school break, and kind of antsy (read: a LOT antsy). The boys were allowed to go play out in the driveway for small periods of time while I was in the house with the girls. They did great with this.

Until that day.

Basically, I hid a ginormous box of Fiber One Bars in the cabinet up over the fridge that the boys promptly located...climbed up to retrieve (see a photo from another instance up above)...

...and stole. They stole the entire box.

They then ate enough Fiber One bars to fill the Grand Canyon while I thought they were out playing with their trucks in the driveway.

No. They were eating straight up fiber covered in chocolate and unknowingly preparing their systems for blast off.

I looked out the window to check on the boys and saw two fully potty trained boys squatting in the driveway. Bare bums. Pants around the ankles. Flashing all of traffic this side of Boston.

What the--

I sprinted outside and discovered that DESPERATE NEED had struck (x2) as the box of bars hit their systems in full and EVERYTHING MUST COME OUT NOW.

All.over.the.driveway.

I stood there in shock, wondering...How did I get here? How is this my life? And just I was mid-pity party, I looked up and was aghast to see the boys STILL EATING FIBER ONE BARS.

"STOP! STOP EATING THE BARS!" I screamed.

"BUT THEY'RE SO GOOD!!!!" they screamed back, simultaneously taking another bite of their stolen goods.

Aaron's landscape crew would later comment that they found a TON of Fiber One bar wrappers in the yard and what was up with that?

They were lucky that's all they found. Because as two boys were deprived of their snack and sent to their rooms (with liberal permission given to take bathroom breaks), guess who had to scoop up piles out of the driveway like she was cleaning up after a dozen dogs on a colon cleanse????

You guys. This was so traumatizing. There was even a section where they had used a toy skid steer to move some of it around. (OMG BURN THE SKID STEER.)

This was a low low low moment for me as a mom. I was seriously so upset. For 7 months. At which point it became so funny I couldn't breathe while telling the story. (not sure when...or how...this transitioned over?)

My kids stole a Costco-sized box of Fiber One Bars, ate them all, and then pooped all over my driveway because they literally couldn't make it inside to the bathroom.

Never in a million years would I have believed that I would have to say that sentence in regards to my actual life.

This morning I was at our church's preschool mom breakfast and we were talking about recharging and mom attitudes and responding graciously to our kids with things happen.

I commented that I will have the BEST attitude and be SO GRACIOUS and KIND and this amazing motherhood figure 999 incidents in a row, but then the first half hour of the day has passed and I hit time 1,000 and I.lose.it. (probably because my kids have just pooped all over the driveway).

And then I apologize. And we grow and we learn and we move on and we DON'T BUY FIBER ONE BARS IN BULK NO NEVER AGAIN.

But man. This is hard.

I hate losing it on my kids. I hate yelling.

I will say that I have seen improvement as I pray through these moments. I have seen huge growth in my own spiritual walk as I'm faced with these choices. But I am so far from perfect. So. far.

And I can't help but wonder if maybe these things happen to 1. Provide us with an arsenal of stories for the girls who someday decide to date these boys (warnings must be given!) 2.  Poke holes in my smug motherhood attitude of "Look how great I'm responding these 999 times!" and then BAM. Driveway Poopalypse. Whatcha got now, Deanna??? Still super calm and sweet????

I can't do this on my own.

And maybe just maybe these horrible things happen in motherhood to remind me of that.

Also...a sense of humor helps a ton. Even when it takes 7 months for it to kick in.

Better late than never.

Disclaimer: no boys were hurt in the making of this blog post. I wish I could say the same for the Fiber One bars, the driveway's dignity, and my sanity.

Disclaimer part 2: why yes those ARE affiliate Fiber One links. This is not a sponsored post but I just KNEW you would all wan to run out and BUY ALL THE FIBER ONE BARS after reading this blog post. You're welcome.

Disclaimer part 3: I am so so so so sorry to be telling poop stories. This breaks all my rules. But I just couldn't NOT SAY THIS. I promise to be good from now on. Pinky swear.

p.s. if your kids struggle with constipation...I have SUCH A GREAT IDEA FOR YOU!

Wednesday, January 3, 2018

Selfishness Bootcamp

(this post contains affiliate links)
Sometimes I regret having four kids.

I need a lot of personal space. A lot of quiet (especially in the mornings). A lot of introvert recovery time. A lot of sleep.

My body was built this way. And having four kids defies the physics of my "needs" every single day.

For example: I'm the type who likes to sit quietly in a Christmas Eve service, soaking in the music and scriptures, drawing zero attention to myself. My four kids are the type to act like they have a whole colony of ants up their pants (which requires random whining and crying in-between the wiggles) and setting their hair on fire during the soothing candlelit part of the service. (Spoiler alert: burning hair is not soothing).

I'm the type to want to spend Christmas break in clean, crisp jammies, sleeping in, getting stuff done around the house, quietly reading, taking naps, organizing new Christmas stuff, cleaning things I normally don't have time to get to, thinking through efficiency plans and checking all the things off my lists.

My kids are the type to want to spend Christmas break climbing the walls, sitting on my face to wake me up at 5 am, destroying all of my organizing 10 seconds after it's done, torturing each other, making extremely simple things extremely difficult and time consuming, randomly smearing sticky jelly all around the house, definitely not napping, and stubbornly wearing the same jammies so many days in a row the jammies start talking to me, begging to see some water and soap (and then said child sobs uncontrollably when "mean mom" takes the jammies to be washed).

I can't lie. There are moments where the thought flits across my mind, "Why? Why did I have four kids? This.is.hard."

Followed closely on the heels of that thought is, "Is it just me? My kids? Everyone else seems to get their kids to wear clean crisp jammies and sit quietly on the couch reading the entire Christmas break. Am I doing something wrong?"

Parenting is the most difficult thing I've ever done. But here's the thing.

I find it really easy to focus in on these "hard moment" things that my kids are doing...and make them into jokes. A sarcastic social media post. A meme. A "How much does my life stink?" pity party post.

No. Just. No.

These behaviors are not a joke or a "poor me" moment. These behaviors are very clear signs and direction of HOW I NEED TO TEACH THEM.

Not "Oh my kids are defective. Let's return them. Hahahaha." But rather, falling on my knees, crying out, and begging for help in grabbing their hearts. And then coming up with a plan to TEACH them that this is not the way that human beings act.

This is my job. This is motherhood.

And so as my mind rebelliously thinks, "Why? Why did I have four kids?" A quiet voice whispers back, "Because this is what you were called to do. Called to teach. Called to love. Called to give of yourself."

Are my needs and plans ruined on a daily basis? Yup. Welcome to Selfishness Bootcamp (aka motherhood). Are my kids a handful? Yup. Welcome to Relying On The Lord crash course.

As I've surveyed this past year and my goals for the new year, almost all of these goals include strategies for teaching my kids. Redirecting their energy. Being aware that how we spend today will shape the adults that I send out into the world in a few short years.

A 6-year-old struggling to sit still for a short Christmas Eve service? Guess who now gets to sit through every service. Practicing self control. Practicing listening. Practicing respecting the space around him. Is this easy? Nope. But so so important.

Climbing walls, smearing jelly, destroying my organizing? Guess who just earned themselves a bigger chore list? Expectations of household tasks they are responsible for. Taking out the trash. Storing their own toys in the appropriate bins. Making their beds. Keeping the clothes off the floor in their rooms. Guess who doesn't get to watch any show unless the entire Living Room is clean?

Guess who just added new singing time, verse memory time, and Bible story time to nightly reading? You're going to be a jerk to your brother? Let's read this interesting story about Joseph and his coat of many colors and his brothers that sold him into slavery and see how that turned out for them. (Btw, after having two boys this story is more believable to me than it's ever been.)

Addison struggling to sleep and stay in her room? Make her in charge of the BABY doing these things. Suddenly it is her responsibility and she has become quite strict. (seriously LOL)

I'll admit. Christmas break was hard. It almost broke me. But the thing is, I needed to have some of these behaviors blasted in my face so that I could concentrate on teaching. On loving. On being aware of my own selfishness. Christmas break held a mirror in front of my own heart, and it was not a pretty sight.

It is painful to grow. It is difficult to stretch one's faith. Motherhood is not an easy path because scaling a mountain is hard work.

But also, extremely rewarding. And not just in 20 years when they are all adults. Now. There are little bits of joy to be found in the midst of the frustrations.

Moments of sibling peace. A meaningful discussion. Helpful hands. Small arms wrapping around me. Gentle kisses. Christmas excitement. Snuggling on the couch to watch a Christmas movie together. Cookie-making helpers. Taking them to a new situation and watching themselves navigate the situation with control and good behavior. Watching them learn to ice skate (this has been so fun!). Hearing their sweet, clear voices join in to singing time. Seeing teaching strategies be successful in small ways. Seeing them be kind and helpful to each other.

Motherhood is like scaling Mt. Everest. And today I am taking large gulps from my oxygen tank. Three kids back in school. A step back from the mess of vacation. (when the kids are constantly on top of me I have a hard time forming full thoughts). An objective view.

Guess who is going to stay in clean, crisp jammies all day? (Until school pickup at least). Guess who is going to quietly read a book? (As soon as the floors are done). Guess who is going to finally organize her kitchen counters? Guess who is going to get some needed peace and quiet today?

This girl.

Even mountain climbers need occasional breaks. Mostly. Coffee breaks. And in this break, gulping air and clearing my head, I acknowledge that I wouldn't trade having four kids for anything. Because even in the difficult moments, there is joy to be found. So much love. And I am grateful for the opportunity to be here. For the opportunity to grow.