Talking About Tourette Syndrome

Yesterday I posted this as my Facebook status:

Brave. That is what our son is. Unbelievably brave. Today we told his class about his Tourette syndrome diagnosis. On his own, Louis* decided to show them ALL the tics…
The throat clear, whistle, growl, eye blinking-widening-crossing, bunny nose, grimace, middle finger-snap AND the ankle turn.
This kid is AMAZING.

I had several private messages asking what we did during the presentation. First, my husband and I feel strongly that children should be respected. TS is Louis’ diagnosis and we listen to his thoughts and concerns. He was diagnosed in 1st grade but his tics never bothered him enough to warrant an in-class discussion. He wanted to talk to peers 1:1 as they had questions. That changed this year.

Louis is now in 5th grade and his tics have grown increasingly complex and happen all day long. They affect his school, sport, and play experience. While we are thankful he has not been bullied, his greatest concerns were:

1. People watching him
2. People judging/making fun of him

This manifested in school avoidance and angry outbursts at home. One of his tics gives him a headache from it’s repetition, so visits to the school nurse have become daily trips.

On Monday my husband and I met with the school principal to discuss implementing a 504 Plan which includes classroom accommodations or modifications. For instance, Louis’ eye blinking tic increased during timed math tests as he was trying harder not to tic. A simple accommodation was extended time.

While we were in the office there was a knock at the door. The school secretary handed the principal a note. From Louis. He had come to the office to tell him his tics were really bad and he was having a hard time in class. He was hoping to talk to the principal about what he could do.

No. He didn’t know we were in there.

Yes. He is an amazing kid.

The principal called him in and we included him in the discussion of what we could do to support him. In addition to brainstorming with us Louis decided that it was a good time to talk to the class. We hoped to complete the presentation with the school counselor in a few weeks.

The week got worse. His headaches got worse. His anxiety got worse. While his close friends knew about the diagnosis, other children in the class noticed some of the exceptions Louis had in class and started to comment. A child said to him, “Why do you get extra time to take this test. You think you’re special?” Louis’ friend interrupted telling the child that Louis, “Is his own person. Stop bothering him.” This friend didn’t know about the TS diagnosis.

It was time.

Friday was Louis’ in class birthday treat. It was the perfect time to talk to the class. We had just been to Louis’ neurologist to talk about the increased complications with his tics. We arrived back at school just after lunch. I piled three large boxes of Oreos in front of the class and the principal introduced me. He started by talking about how the kids are getting older and they are changing and many people have things that are a little different. Different is okay.

Here is how we chose to talk to the class. Louis and I had created a simple Prezi. First I asked if anyone had heard of Tourette syndrome. A few hands went up. I asked them what they thought. No one really knew the word, but Louis’ friend raised his hand. When I called on him he said, “It’s when your body moves and you can’t control it.” I told them Louis has TS. I told them people with TS have movements called tics. (“EW!”) You can’t catch them. They’re not bugs. They’re body movements or sounds.

I started to hand out Oreos. Want to get kids to listen? Give them food. The principal brought up the Prezi picture of a pink elephant. I said, “While I hand these out I don’t want you to think of a pink elephant. You many NOT think about a pink elephant.” Cue writhing in chairs, covering eyes and ears, and LOTS of complaining. I said, “Okay, okay! That’s hard. That’s what it’s like to hold in tics.”

As they ate we played “Who can stare the longest?” They were quieter trying to concentrate. One child called out the principal for blinking. It was great. I told them, trying to hold a tic in is like trying not to blink. When you do blink again, you have to blink lots of times in a row.

I asked if anyone ever got mosquito bites. All hands shot up. I said, “Having a tic is like a mosquito bite. When your mom tells you now to scratch you can wait for a little bit, but then?” Lots of voices – “You scratch hard!”

I told them that many times TS is inherited. This is like your eye color or hair color or looks. They come from your family. I told them about my tic. I have one. I wrinkle my nose like a bunny. Usually I can control it, but when I’m relaxed or not concentrating hard it will come out. I showed them.

The principal brought up a photo of my brother who used to have a tic that I mercilessly yelled at him for. I’m not sharing his experience here as it’s not mine to discuss. We talked about how cool my brother is and how successful he is as an adult.

We talked about Tim Howard being a role model. Louis looks up to Howard as a soccer player and as a person with TS. We also played a short video of Howard talking about his personal expression through tattoos, challenges trying to do sportscasting, and his role models growing up.

Finally, Louis came to the front of the room. He told me in the morning he wanted to show the class his tics so they would see and understand. Not every child should do this. Not every child will want to. Louis did, so we went with it. There he stood with all 28 sets of eyes, plus me, the principal, and the classroom teacher watching and proceeded to name them and show them. I managed to keep it together.

We took questions. We got some randoms. We had one little girl share that her singing was a problem at school so she sings for about an hour every afternoon at home. I told her that it was brave to share and that it sounded like she found a way to help her body do what it needed to do at school.

That’s it! It took 15 minutes total. Louis was on cloud nine the rest of the day. When he got home he told us kids told him he was brave and cool for sharing.

Have you shared with your child’s class? If so, what worked/didn’t work?

Happy 10th Birthday Louis!

*Louis’ is a pseudonym to respect his privacy. Please use this name if you know us personally and choose to comment.

Society and Syndrome

What I’m writing about in my other life…http://talk-ds.org/2013/07/27/coffee-reflections-society-and-syndrome/

1000 Beautiful Things: Same Love

I was raised in a fundamentalist Christian home that taught homosexuality was a sin. People with same-sex interests were in need of salvation. Repenting and believing correctly would change their orientation. I thought it was just that simple.

Complexity gives the illusion of simplicity.

I don’t have anything profound to add to the debates about homosexuality in the church or country.  I’ve heard the religious platitudes, “Love the sinner, hate the sin.” There’s just a problem with beliefs like this. You are still hating. And that hate is reflected in behavior and attitude.

Last week I sat watching Louis’ baseball game. Parents and friends scattered on blankets and stadium chairs as we watched our 8-year-old boys engaged in America’s pastime. From the parental chatter a father’s voice laughed above the rest, “Well they might as well let in little girls into the Boy Scouts now since they let in the faggots.”

My heart dropped fast and I wanted to vomit. Deep hate shared as a joke.

It is not a joke. People I love are called “faggots” and “dykes.” People I love are called “retards.” People I love are called many other demeaning labels. Name-calling does nothing but deride others, insinuating that they are less than we are. And “they” most certainly are not less than. “They” are not disgusting. “They” do not need to be feared.  “They” are not broken in need of fixing.

The words of this father say more about him than they do about the people he chooses to minimize and his words aren’t harmless. Hate-filled speech explodes sending shrapnel into the hearts and minds of those listening. Some are wounded deeply. Some absorb the hate and let it fester and grow within themselves.

Yesterday I was still grappling with the comment from the little league game. I have a weakness for pop-radio and Macklemore’s newest song Same Love came on. I was expecting lyrics similar to Thrift Shop and Can’t Hold Us. This was so different.

When kids are walking ’round the hallway plagued by pain in their heart
A world so hateful some would rather die than be who they are
And a certificate on paper isn’t gonna solve it all
But it’s a damn good place to start
No law is gonna change us
We have to change us
Whatever God you believe in
We come from the same one
Strip away the fear
Underneath it’s all the same love
About time that we raised up

Words that heal, not harm. These are on the list of my 1000 Beautiful Things.

1000 Beautiful Things: Mount Washmore

Today I saw the picture on the right in my Facebook newsfeed. My oldest son, Louis looked at it said, “That’s our house!”

In case you didn’t know, I work full-time. My day job is the most amazing, fulfilling, dream-job and I am not being sarcastic. And I am a Mom. Wife. Friend. So somewhere along the way corners will be cut. In our house the largest area of neglect is affectionately referred to as “Mt. Washmore.”

Mt. Washmore is the enormous pile of laundry in the basement. While some families have piles of dirty laundry, we have piles of clean. Beautiful piles and piles and piles of clean clothes. Just waiting to be ironed. Oh, I have an ironing compulsion. It smells really, really good because thanks to the power of magic and Amy Sedaris a product exists that makes my filthy, stinky, boy clothes smell like heaven. For weeks. Downy Unstoppables, like Amy Sedaris, are amazing.

Very few people have been allowed to witness Mt. Washmore and they include my mother (who has offered to fold), HVAC repairmen, and our next-door neighbor Jeremy. Not even my closest friends have been allowed down there. Really.

I used to feel guilt that I wasn’t better about folding and putting away clothes. I’ve had lots of advice over the years about how to tame the pile.

If you take the clothes right from the dryer and hang them up you won’t need to iron

Yes, I will. I compulsively iron everything that I wear except for underthingys. In fact, I love ironing.

If you wash one load at a time and put it right away, it won’t pile up.

Yes, it will. My problem is this: I hate folding clothes and putting them away.

If you organize a space down there you will be motivated to keep it clean.

You really don’t get this yet do you? I have a folding table, hanging shelf, clothes line, and ironing board/iron wall unit to contain my tools. Still, no folding.

Instead I have learned to accept and embrace something –

I will not conquer Mt. Washmore and I will still live a meaningful life.

When I was little my grandmother made this picture and it hung on the wall in my parents’ house for years

I value hugging my boys, reading books, playing in the backyard, and heck – zoning out on Facebook more than folding clothes. I’ve embraced “letting it go” and smile at that pile of fresh clothes scattered over 3 baskets, the folding table, and cement floor – and that is a beautiful thing!

Raising boys in the era of marathon bombings

Wait…didn’t I have a post with a nearly identical title? Why, yes I did. And this was yet another opportunity to talk and guide our boys through the tragedy in Boston. Unlike Sandy Hook, my heart went in a somewhat different direction. I thought of my two little boys, brothers. Who they will become as adults?

How do we raise brothers who are loving, kind, and… don’t kill people with bombs they made by hand?

When looking at the events from the outside it is very easy to make hasty assumptions and generalizations. This is done in order to insulate ourselves from the pain and sheer shock of an event like the Boston Marathon bombing. We turn the offenders into characters as we try to regain our footing – they were radicals, they were unhappy, they were foreign, they were connected to some militant group. Ultimately – they were very different from us. And that seems to give us some surface-level satisfaction. In reality this perspective offers false comfort.

Once the astonishment of the event wears away we’re left with darker realizations. We are more like the Tsarnaev brothers than we care to admit. There isn’t a gulf between us – it is really a trickling stream. Perhaps I’ve been reading a little too much Flannery O’Connor lately, but what I’ve drawn from her work is a very honest understanding of people.

 If we personalize “them” it becomes too real for us. Despite our desire to separate ourselves, our humanity intricately connects us.

What are we to do? The questions that initially pop up in our minds are centered on fears – fear of the unknown, fear this will happen to us, fear it could one day be our sons.

Boys gone bad.

What is a mother to do? It’s important to settle these questions and see them for what they are – fears. Fear should not motivate us. Instead we should look to hope, faith, and love. How do we teach our children to respond with resilience during times of crisis?

Resilient. It’s nice little psychological buzzword. When attributed to character it literally means, “Capable of handling shock without permanent damage,” or, “Adjusting easily to change.” 

I know very few children that like change. I know even fewer adults. We say we like change, but we really don’t. So how do we help our children move through significant events like those in Boston without permanent damage? I’ve listed 5 ideas for teaching resilience in everyday life:

1. Encourage friendships: Having a sister with Down syndrome, I am keenly aware of the positive effect of friendship. In contrast, lack of friendship may be emotionally isolating. Friendships offer children a way to negotiate relationships, learn about trust, and build a network of support.
2. Structure failures: This means letting your child experience disappointment in controlled ways. Not keeping score at a game may sound great, but letting one team lose is an opportunity to experience small-scale failure and learn through it.
3. Teach problem-solving: If your child asks a lot of “what if” questions you don’t always have to answer him. Encourage him to talk through scenarios. Once he thinks of one outcome, have him think of another. Ask him to identify what he feels is the best option for the situation. If he happens to fail in a real situation, talk about what went wrong and how to adjust next time. Critical thinking is a skill that benefits your child in every area of life, for the rest of life.
4. Encourage community: In a community there are leaders, followers, and helpers. Each of us fills these rolls at some time or another. It is important to directly instruct your children about the importance of each. We often think of teaching independence or leadership, but it is just as important to teach following. Following doesn’t mean blinding doing what someone else says to do. Following means knowing when you need help and how to seek assistance from someone else. When a problem is too big for you to take on your own, you need someone to help guide you. That person may be a leader or a helper. A helper is someone you trust. This can be a friend, a teacher, or a coach.
   Talk now, before a crisis arises, about the helpers are in your own community. Ask your children, “What makes someone a good helper?” Identify when you see these traits in them. Model “follower” and “helper”by admitting when you need assistance. Point out the helpers in your own life.
5. Comfort: It is absolutely okay for a child to be comforted during disappointment and heart-ache. Comfort is not codling. We all need emotional support during loss. As they make friends fights, break-ups, and misunderstandings will arise. Don’t be too quick to rescue, but always be there. Know that listening – really listening – is more important than having the right answer.

More information on resilience and how to guide children through problems big and small is available from:

Resilience in Children

Pinterest Board on Resilience (Oh yes there is!)

Teaching Problem Solving

National Center for School Crisis and Bereavement

Songs of Resilience 

Soccer Hell

If there is such a thing as a “the 9 circles of hell” tailored just for me, then soccer with that child  is one of the circles. Followed closely by shoe shopping with children, spending more than one hour in a mall, and dealing with problem interns. And if those circles exist on earth, then I just lived through one this weekend.

I am that parent with that child. The one who is screaming refusing to play a his soccer game.

The first game last season Red pulled the same shenanigans. He refused to play the game. He cried and ran off the field. I was so upset with him for not participating. So at then end of the game…I made him give the opposing team High-5’s when the teams lined up to congratulate each other. I carried him with his hand outstretched and slapped those little hands for him. Yep. That was me. Crazy mom. Not my proudest moment. I had blocked this from memory until my husband kindly reminded me of the event. Thanks Honey.

It was the YMCA 3-5 year-olds for the heaven’s sake!

Saturday was chilly. We dressed in layered tops but just had on shorts. Arriving at the park Red proclaimed it was too cold to play. I had to carry him to the field. He started to cry.

Look – Your team is warming up! If you go out there and kick your ball your body will feel warm too.

Right. He wasn’t buying it. The game was about to start. The dad next to us said,

Why don’t you walk away for a few minutes? I’ll take him in and get him settled. I’m sure he’ll be fine.

Right. Remembering my performance last year I decide to let go and let this dad help me. Did I also mention I had our dog and folding chair with us. Yes. Because Red wanted to bring the dog.

Come on Red! Spark wants to watch you kick that ball.

My friend Johanna and her son Liam showed up to wish Red good luck. Instead they got to see Red being carried from the field by that dad, kicking, screaming, and crying. It was horrible.

He settled down on the sideline (sort of) and Johanna went to talk with him. He refused to talk and started cry-screaming again. When she came back I was in the midst of the “Do I leave him there or take him home?” internal debate. I left him there. I thought I could wait him out.

He waited me out.

Red sat 10-15 feet away from his teammates the entire game. At one point I went over to tell him to stop throwing rocks toward the walking path. He started his fit again.

I am done with your fit. I am watching your team. You need to sit with your team and listen to your coach.

I walked away.

Mercifully, the game ended and I got out of there as fast as I could. In the car I asked Red why he wouldn’t play. Here is a list of his responses:

• He wanted to be a Green Gator, not a Black Ninja (Sorry, that was last year’s team)
• He wanted his friends Liam and Emmi to play on the team (Nope. Liam’s playing t-ball and Emmi is too old for your team)
• The TV told him not to play today
• He wanted to make a fire, but couldn’t make it without a special rock that makes sparks (why he was throwing rocks). Thank you Bear Grylls

I give people behavioral-communication ideas for a living. Pete said I should summon all of my education and come up with a plan. So I did.

Bribery

If you positively rephrase it you can call it incentive or reward. You can reframe just about anything. I decided we needed Red to do three things:

1. Listen to his coach (AKA follow his instructions)
2. Stay with his team
3. Play the game

I tried to add “cheer for your team,” but Pete said that was pushing it. If he did all three, then he would get ice cream at McDonald’s.

The next day Red did all three. He got his ice cream.

Now comes the bigger dilemma. Do we give him ice cream every time he plays? Is it setting a bad precedent? He’s only 5. Do I pay $1.20 or listen to screams?

At 5 he has very little internal motivation right now. Honestly, at nearly 35 I have very little internal motivation when it comes to losing weight. To encourage myself I get a reward after losing 5 lbs. Willpower = new pair of Smartwool running socks. Am I bribing myself? Maybe. Am I getting an incentive? Definitely.

So I guess we’ll see what happens this Saturday at soccer… I know one thing – I am not an expert at parenting Red. Yet.

PS – He went right to his room for screaming at adults – and no TV for the day. He promptly fell asleep. All that fit-throwing is exhausting. Stinker.

1000 Beautiful Things: Simple Machines

Today I had a very interesting conversation with Red and Louis in the car. For the last week Red keeps pointing things out to me,

Look Mom! A bulldozer. That’s a simple machine.

I respond,

Okaaaay

I don’t remember learning about simple machines. I didn’t know the definition until I asked my super smart husband.

A machine that multiplies force like a lever, wedge, pulley or wheel

Me

Okaaaay

In the car today (before knowing the definition) the conversation went something like this:

Red: Look at that simple machine! It’s a car!

Me: A car? What makes a car a simple machine?

Red: (voice very matter-of-fact) Wheels and a axle.

Me: What is a simple machine?

Louis: Something that makes a hard job easier.

Me: Is an elevator a simple machine?

Red: No. Jenny (his teacher) didn’t say so.

Louis: Yes, Red it is.

Red: Oh.

I am amazed at what my children know and how they relate it to me. I have never, ever, looked at the world through the lens of “simple machine.” Red’s fascination with simple machines is contagious – now I see things  in our everyday life and think, “Simple machines are beautiful things.” And they are. Anything that makes a hard job easier is a beaut’ in my book!

5/1000

1000 Beautiful Things: My red-head turns 5!

March 28^th, 2008

Red

Red’s birth story will forever be enmeshed with the story of Emily. Since I posted about Emily’s big entrance into our lives I think it’s fitting to share the back-story.

My friend Jen and I spent our entire pregnancies together. We actually called one another on the same day to share our news – “You’re pregnant?! Well guess what? I am too!” – And the happiness extended from there. Our due dates were just weeks apart.

Jen and her husband already had a little girl, Casey, the same age as our Louis. We were so excited that they would become siblings at the same time. We signed them up for Big Brother/Big Sister Class at the hospital. Yes. We were going to deliver at the same hospital. Jen and I even went to the same obstetrics practice.

Louis and Casey go to big siblings class!

We had our ultrasounds around 20 weeks – I would be having another boy named Red*; Jen was having another girl named Emily. Life was just about perfect.

A perfect life is great. All the pieces fit. You can move day-in, day-out without much concern. Then real life happens and you realize beauty all around you – a life you never knew existed.  It’s deeper and fuller. That is what we’ve learned from Emily.

This wasn’t automatic. To get to the deeper places of live you have to enter what Jen calls “the dark and twisty” parts. Those parts that exist in our hearts when expectations are shattered and the glaze of perfection cracks.

I went to the hospital a week after Emily was born with contractions and high blood pressure. I was an emotional mess. The doctor on call from our practice came into the room and listened to why I was such a wreck. I cried as I told her about Jen and Emily. She was patient and listened. Then she told me the facts. The hospital was over-crowded. I would have to share a room with another woman in labor. If my blood pressure came down they’d admit me in two days for an induction. Then the women having babies today would be released and I’d have my own room.

I calmed myself down. I breathed slowly. My blood pressure came down. I went home.

Two days later I was admitted and induced. It was the easiest birthing process ever (yes of course I had an epidural, I’m not tough).  Red was welcomed into the world with joy and tears.

Look at that fat sucker!

The “Fat Sucker”

Those were my first words. Red was almost two pounds bigger than Louis weighing in at 8 lbs, 3 ounces. He had rolls! I joked that they were from all of the butter cream Easter eggs I ate over the previous 2 weeks.

Since Jen and I had maternity leave at the same time we would walk 3 miles several times a week wearing our sweet babies. I will always treasure those weeks.

~*~

One of many buildings

Red was different from our Louis from the very beginning. During my pregnancy he was much more active and kicked me all night long. As a baby he was adventurous. He climbed up the stairs of our house at 7 months old. He climbed out of his crib at 15 months old. Louis never climbed out of his crib – EVER. Red’s scream could shatter glass. He was a true red-head.

He’s an extrovert living with three introverts. (I am a “socialized” introvert, but really prefer being at home reading a book.) All of the parenting tricks that work for Louis have the opposite effect on this kid.

Red and I are early-birds. As a toddler he would wake up at 5 am on Saturdays. I’d bundle him up and head to Starbucks at 5:30 so his dad and Louis could sleep in. I’d groggily sip a latte while he drank a cup of milk.

Penny Smile

Red is imaginative and creative. He builds elaborate structures from blocks and Legos. He refuses to ride a bike. He won’t and we can’t make him. I am very proud to report that Miss Emily got a two-wheeler with training wheels for her birthday!

Red loves to sing. Every night he sings me my lullaby. I lay down in his bed and he sings Edelweiss to me. The last line he changes to “bless my Mommy for-ever!”  He gives the sweetest little hugs and kisses.

I am in complete shock that my baby is now 5 years old!

Red, you are a beautiful little boy full of surprises and excitement. Our family wouldn’t be complete without your shenanigans.

4/1000

*names of my children are changed

1000 Beautiful Things: A run with my son

Louis asked me no less than 20 times if I really meant “jog” when I said “run.” “Yes buddy. We will keep the same pace we did during training.” The day was finally here – Our first 5K (3.2 miles) race. “We’re not really “racing” are we?” “What if my shoe comes untied?” “What if I get a cramp?” “Will people think I’m fat with all these layers?”

He has really matured this past year, but sometimes anxiety creeps back in. Reassurance. This is what we provide. Frankly, many of us have the same thoughts only we know how to process through the worries. I work on taming the questions by addressing the concerns, calmly, head-on. “We’ll tie your shoe.” “We’ll stop and walk if you need to.” “No one will think you are fat. Just wait.” Preparation helps calm him. Knowing what to expect increases his success.

We arrive at the park 45 minutes before start time, get our timing chips and swag. “What if my timing chip falls off?” Me, “We’ll tie it back on. Look at that lady over there – see all her layers? She looks warm.” We wait in the car until friends arrive to run with us. “Will they shoot a gun at the start?” I didn’t think so. He stretches with Adam, burning off nervous energy.

A LOUD gun signals the start. We start out at a nice easy pace. The air is a frigid 33 degrees without the wind chill. Rain/sleet/snow mix is predicted for the morning. Thankfully, it hasn’t started yet. “Are we going to finish the race?” Yes. “Mom, if ninja’s jump off that bridge and try and stop us, I will use Tae Kwon Do moves to defeat them.” I tell him I’m glad we sent him to Tae Kwon Do camp last summer because those moves will be really useful. Heh, heh.

After half a mile Louis has a side-stitch. I tell him to breathe through it. He asks if he can hold my hand. This is unexpected. Louis isn’t affectionate in public (like his dad). I grab his little gloved hand and we keep running. We run up the hill.

He asks if we can walk on the hill. I tell him, “We are going to kick this hill’s butt. We’ve kicked hills WAY bigger than this.” We crest the hill. He lets my hand go and says, “We kicked that hills ass.” I tell him he’s grounded and pretend to be outraged. (I laugh) “I mean, we kicked its donkey.” He recently looked up the word ‘donkey’ in his student dictionary and told us the definition was a “cuss word.” I’d like to be honest and say I don’t say “kick ass” or “damn dog” on occasion, but then I’d be lying and that’s just ugly.

A man racing with a bull-dog passes us for the third time. He’s the kind that runs and walks and runs and walks. “That guy looks like a ninja.” He’s right. He has on a black ski mask. We catch up and hear the man say “Come on Roxy,” and he’s off again. “Louis, we are going to beat Roxy. That’s our goal. She is not going to finish before us.” He agrees to the challenge.

Little pieces of ice prick our faces.

We are two-thirds of the way through. Louis says he has a cramp – a bad one. I start chanting “You can do it! You can do it!” He tells me I sound like a hoarse hobo. His face is red from the cold. His breathing changes and he starts wheezing. I go into pro-mode. Inspiratory stridor. He needs to gain control.  He’s panicking. This is his first race and I don’t want it to be his last. We walk. Roxy passes us.

We imagine blowing bubbles and calm his breathing. It takes only a minute or so and we start again. We pass Roxy and round the bend before the bridge. There on the bridge is an old woman bundled up, shuffling behind her walker, while walking her dog. She’s not in the race. A group of volunteers cheer us on. “Louis, you have to beat that old lady. Do you hear me? Smoke her.” We laugh.

As we approach the final bridge Louis says his walking gave him energy. “Can I show-off a little, Mom?” Sure. He kicks it into gear earlier than we had agreed upon. He is sprinting turning his head to see where I am. I am a pace behind and really pushing to keep up. I finally pass him. Our friends are at the finish line cheering him onward. “Don’t let your mom beat you Louis!” So I let him cross first. (Really, I was first)

What a cheering section! High fives are passed all around from the runners who finished before us. Louis bends over to catch his breath. We did it. Our first 5k together. We smoked the old lady and beat Roxy. Success!

We grab orange juice, chat with friends, and head to the car. The ice is now mixed with snow and we are officially frozen.

“When I raced toward the finish it felt like I was flying Mom! I didn’t even feel my feet hit the ground.” I know the feeling. I had the same feeling the whole time we ran together. My Louis makes my heart soar. A soaring heart is a beautiful thing.

3/1000

1000 Beautiful Things: Emily Violet

Dedicated to my sweet Emily Violet and her awesome family – Jen, Tom, and Big Sister Casey. Your family is a beautiful example of love in action. Thank you for your friendship, openness, and willingness to share the ups and downs of life.

Emily is one of my 1000 Beautiful Things!

Dear Emily,

Every year I remember the day you were born. Today you turn 5-years-old! Happy Birthday Sweet Girl!

This year I am going to write the story of your birthday for you. One day when you are older you can read the whole thing and know without a doubt – You, Emily Violet, are loved! Your life means so such to others – even when you think it doesn’t. The lessons we’ve all learned from loving you these last 5 years have made us stronger, more whole people.

With Love,

Miss Jenn

The Day You Were Born

Your mom called me at night on March 19th, 2008 to tell me you were finally here. She told me with an exhausted voice you that had arrived by emergency c-section. But you were here! Beautiful from the start with blonde hair and adorable cheeks! That day you were you – Emily Violet – and you have never ceased being you.

I was excited to meet you and hold you. I had to work the next day and planned on driving to the hospital in the afternoon. Then your mom called. “They think Emily might have Down syndrome.” I felt my heart drop. Emily, you know how many people in my life have Down syndrome. I knew it would be all right – I just didn’t want it for you. “If I can hold Emily, then she’ll be okay,” I told myself.

Pete and I got to the hospital room very soon after your mom called. I held you and looked at your face. White blonde hair, your sweet cheeks, and little dimple by your ear, so pretty. I looked closer – at your palms and toes. Your mom said, “I have to ask. Do you think she has Down syndrome?” I took a deep breath, “No, I don’t think so.” I didn’t. I really didn’t. Some of your little parts looked a bit different, not ugly, just you. Anybody could have these different bits.

I held you in the light of the window and looked at your face again. It was so sweet. I kissed your cheeks and thanked God that you were here.

Emily, you are not defined by your chromosomes. Everyone has them – Little bits making a brand-new
person. Some people have more, some less. A person’s true character lies in the way she treats others. The way she embraces life. The way you do Emily. From the time you were a baby you were a sweet child; happy, confident, and full of surprises.

In a tiny place in your mom’s heart, Easter is a sad day. A doctor thought it would be a good idea to call your parents on Easter Sunday and tell them that you had a problem with your chromosomes. That part of one of the chromosomes was missing. That it could be really, really bad. No one ever wants their child to face unnecessary challenges. Your parents always loved you, love you, and will love you. That never changes. Even when you empty the contents of a beanbag chair or the clothes from your dresser, all over your room!

Emily, for a long time I wanted to punch that doctor in the face. Privately, I called him mean names. I wanted to yell and scream at him for being insensitive, for knowing better. Instead, the years have softened my heart. Emily, I pray for the doctor. I pray for a changed heart that understands parents – their love, fear, worries, and joys.  I pray he learns gentleness when he gives bad news. That he will see the preciousness of life in the hills and the valleys.

Easter is a time to remember life; a time to remember the Gift of Life that we are given. Even though we encounter profound sadness, we will be held and comforted. In death we find ourselves made new and alive. In a much larger part of your mom’s heart, she embraces this truth and celebrates Life. Just like she hugs you tightly celebrates your birthday! The gift you are to us.

Emily, you never made us sad. You have brought us joy from the very day you were born. Our sadness was fear – we didn’t know what this little break on your 4th chromosome would mean for you. That made us sad. The not knowing made us cry.

We didn’t know you would shock the doctors, learning to walk while recovered from neurosurgery with a fused spine. We didn’t know you would write your name so beautifully, ride a bike, or put together words to give us your opinions. We didn’t know you would be naughty and need to go in time-out. We didn’t know. Sometimes not knowing makes grown-ups worry. See how much you have taught us?

From the very first day you have been Emily. Us knowing that something is different with your chromosomes never changed who you are. You have always been you – full of life and eager to learn. No one can teach a heart to be beautiful Emily Violet. You were born with it.

Happy birthday my sweet little girl!

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