Hi, guys! This past Saturday I was the speaker at a breakfast event at our church. I've had so many requests for copies of the talk that I've decided to post it here so it's easier for me to direct people to it. Feel free to read- or not- no pressure. This is longer than a usual blog post. It was a talk I gave to a gym full of women on stress and stress management (with a European travel theme). Oh and I opened the talk with a disclaimer on how I was stressed about talking to them on stress. (-; So....this is all stuff that I am currently learning and using.
I was so thankful for this opportunity to share, and was so blessed by the kindness of the many who were there! I hope this talk is an encouragement to you- wherever life finds you today.
On Being Stressed:
When I was 18 years old, I toured Europe the summer following my freshman year of college. Participating in my school’s musical missions team, I joined the choir that learned a selection of songs a dozen different languages to perform daily concerts on cobblestone street corners and in awe-inspiring cathedrals alike. I bought a hard cover suitcase that would hold ten weeks worth of stuff- yet not be so large that I couldn’t haul it to the top of those spectacularly long spiral staircases in Spain. I got my first ever passport, bought a nice camera, and prepared for the adventure of a lifetime. And boy was it ever.
On this trip I fell in love. With those pretzel buns in Germany that they serve for breakfast. So yummy. But also- on this trip I met the man that I would one day marry.
At the beginning of the trip, someone asked me if any of the guys on the team had caught my attention. In my 18 year old, all-knowing wisdom, I answered with a none too gracious and hearty. “NO!”
Aaron sat innocently on the other side of the room, and I didn’t know it at the time, but someone asked him the same question about the girls of the team. He answered the same.
So after a semester of practice, our choir boarded a plane in Atlanta, and we headed for Spain. After a week in Spain, doing at least one musical concert a day- we moved to France. After France, Germany, then Poland, Latvia, Lithuania, then Estonia and back over to Switzerland. We drove through Austria at one point. On the way home we had a 24 hour layover in London and caught an opera. It was a year where we couldn’t get visas into Russia, but we stood practically right at the border, singing our songs in Russian. We loaded up into these boxy white vans and drove from country to country- taking in the sights, eating the local cuisine, and bunking up with local families who attended the churches where we were ministering.
I don’t know exactly when it happened, but somewhere in there- my friend Katie started to notice this boy, Aaron. She pointed him out to me. “Isn’t he so cute?” She asked.
“Ugh. No.” I replied. “He’s so annoying and kind of crazy. He’s not even a music major! They only let him on this trip because they needed someone who could drive stick shift. And he keeps talking about this place Vermont? What’s in Vermont? What’s the big deal?”
But since she had developed a little crush on him, I decided to keep an eye on him, just in interest of being able to report back to her.
I was an extremely prim and proper, reserved, Midwestern, conservative music major who did little else other than practice. Aaron was a scandalous boy from Vermont, a scruffy ski instructor (who took advantage of some skiing in Switzerland and skied across the border into Italy), a wild and crazy Chemistry major who –in interest of saving suitcase space- packed Doc Bronners soap for the trip which he bragged could wash his hair, his clothes, AND the white box vans.
It turns out, he got a little Chemistry life lesson on this trip. We both did. Opposites DO attract.
It was in Berlin where we had “the big talk”. I will never forget our coffee/tea date at an outside café. Sitting at this tiny table, looking across at this guy that inexplicably drew my attention, and wondering, what could ever come of this missions team crush? (My friend Katie had long passed on to a new crush).
Ten and a half years of marriage later, 4 kids, a mortgage, and our very own mini van….THIS. This is what that crush came to. I found my definitely-very-cute, tractor-driving studmuffin, soulmate. I thank God for him every day.
Now if you had asked me at the time, I would have told me that this trip was extremely stressful. It was a big adventure for a sheltered girl like myself. Keeping track of things such as my passport and necessary personal items while moving locations almost daily. Dragging my suitcase from place to place. Singing a rather high-pressure concert every night whether I felt like it or not. Oh- and somewhere in Estonia we picked up a rare breed of European lice that we kept passing around the entire team and it turns out- European lice treatments aren’t as strong as American lice treatments and those lice just would not.go.away.
Stressful. (Also itchy. Itchy Stressful is a whole new level of stress I had never hit before.)
Looking back on it now in comparison to the years that have followed- it was more adventure than stressful. I have had many other trips that proved to be a lot less fun and a lot more stressful.
Take for example- December, 2011. No passport was needed for this trip.
We were driving from Vermont to Michigan on an icy winter night to my grandfather’s funeral. At the time we only had two kids. Addison- who was under 2 years old and barely a year off of her oxygen tanks and severe medical issues. Carter- who was three months old and the most handsome…but orneriest baby there ever was.
So we got rolling on these freezing roads, and we learned pretty quickly that every time the car stopped moving, baby Carter would wake up and scream and scream and scream. Kid had a pair of lungs on him. And just when we were too far to turn around, but not close enough to make this end quickly- a perfectly healthy Addison somehow developed a horrible case of croup.
So we would be driving along, both kids happy, and then Addison would stop breathing. So we would stop to give her a breathing treatment, and then Carter would wake up and scream and scream. So we would get moving again, Carter would go back to sleep, and then Addison would stop breathing again. So we would stop to give her a treatment and Carter would wake up screaming again. Repeat endlessly.
When we got there, Carter screamed all night in the hotel room and Addison needed continuous breathing treatments through the night.
Repeat all the way home for a 15 hour drive.
This trip rates pretty high on my stress-o-meter. It made the European lice seem like a luxury vacation that included frequent head massages.
But let’s just talk about stress for a minute. The other day after wrangling four kids seven and under to be fed, dressed, in their school gear, snacks packed, papers signed and put in the appropriate folders, and three separate school drop offs completed before 7:45am- I was feeling a bit stressed. As I drove, clutching my cup of now lukewarm coffee and taking deep breaths, we passed a bus that proclaimed something along the lines of “Ride a bus! Stress-free transport!” And I thought, “stress-free” sounded pretty great.
But then my next thought was of juggling 4 small kids alone on the bus and my stress-o-meter went through the roof.
So stress. What is it? How do we deal with it? How can we have a stress-free transport through life?
According to Google, stress can be defined as: a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.
However we define stress or experience it- I think it’s safe to say that all of us experience stress at different points in our days. Whether it’s in the form of a trip gone wrong, or getting lice in Europe while trying to impress your new boy crush, or trying to get the kids out the door in the morning, or exam week at school, a work deadline, a small kink in a jam packed day, a health situation in your family, or even just really gnarly traffic- stress is omnipresent.
Filling up my van with gas yesterday, I stood waiting for the pump to finish and a soothing picture flashed up on the screen suggesting that I take 5 seconds to relax my neck and shoulders. Clearly the gas pumps are seeing lots of stressed out people!
The question is, how do we deal with stress? How do we cope? How do we keep from exploding under the pressure of every day life?
In the spirit of being as helpful as possible, I’ve compiled a list of 18 things that the entire Internet seems to agree that will help manage stress and 2 things I want to add to the list in a big way. So here we go:
Deep breaths. Maybe include the gas station’s suggestion of relaxing your neck and shoulders at the same time. Pretty basic suggestion, but I’ve found this helpful on many occasions.
Make lists. Make a concrete, visual plan for all the things spinning around in your head. Organize your day. Oftentimes my stress originates from the vast and varied number things I need to do. Writing them down and letting the paper be responsible for keeping track of when and where it all will happen lets me relax and focus just on the thing in front of me now. Have to do ALL THE THINGS today? Nope. Right now I just have to…switch the wash over. Or plan dinner. Or take the kids to school. Or drink this entire pot of coffee. Just do the next right thing.
Add an extra hour to your day
This is my favorite one right now. For me this means getting up an hour before the kids. This lets me drink a hot drink while it’s still hot, get some reading in or writing, and just focus in on my day before the screaming chaos of children rains down upon me. I’ll often throw a load in the washer, unload the dishwasher, maybe get dinner rolling in the crockpot. Even just fifteen extra minutes to get things done child-free lowers my stress level in the morning.
Take a walk! Go for a run! Get outside.
Listen to music. This could go two ways. Calming, soothing classical music that quiets the soul. Or lively music for a get-moving dance party.
Scrub something clean. A kitchen, a closet, a floor, a bathroom sink- push aside the situation you can’t control and focus on the thing in front of you that you can. Take something dingy and organized and turn it into a sparkling, neat display.
Laugh out loud. Read a really good book. Watch an intriguing movie.
Drink a cup of hot decaf tea. Sip it slowly. Enjoy those bold flavors. Feel the calming energy seep into the essence of your being. Breathe in the steam and the scents and the liquid presence of joy. (Personally, I feel this describes coffee)
Write about what’s stressing you out.
Take a break. Just walk away.
Take a hot bubble bath. Silky bubbles. Steaming water. Relaxing bath salts that seep the stress right from your bones. Perhaps combine this one with soothing music and a scented candle.
Reach out and talk to others. Make time for a coffee date or lunch out. Or even- the mode most available to me these days- text! If I am feeling super stressed about life, my favorite thing in the world to do is pick a handful of people on my contact list and text them to see how they are doing. Check in to see how their day is going. Let them know I care about whatever might be stressing them out. Look up and out instead of shriveling in.
Unplug. Is facebook politics stressing you out? The perfection of Pinterest? The like count on Instagram? Easy peasy- log off. Turn off your phone. Walk away from it all. Don’t check your email. Just focus in on the day ahead of you and rid yourself of the stress of it all. On the days that I feel that my head might explode from the noise and clamor, I unplug from my phone and computer. I focus on the moments in front of me. I listen to the sounds around me- the rustling wind, a chirping bird, the giggles and shouts coming from the playset. I feel the warm sunshine on my face. I watch my kids run and play without a care in the world. No distractions. No digital noise. These are simpler moments. Not as flashy. But far less stressful and quite therapeutic.
Get a massage. Or a pedicure or manicure. Finding time for a massage isn’t always in the cards for my schedule right now. But sometimes when I’m feeling super stressed, I’ll lie down on the floor on my stomach and tell my kids to each fetch their favorite matchbox car and pretend that I’m the road. As they happily zoom it all around my back and up my shoulders, I wonder how much tip I’m supposed to leave for this type of massage?
Keep vacation photos handy. Close your eyes and remember the sensations of that vacation. The crystal clear blue water. The bustling cobblestone street. The wondrous beauty of those mountains. The silence of those swaying fields bursting with colorful blooms. The adventure. The excitement. The ethnic foods. The time spent with people you love.
Look at cute animal pictures or funny animal videos. Or better yet- pet an animal in real life. Furry, cute little balls of fuzz. Sleek, loyal-looking dogs with dark brown eyes. Baby elephants. Sleeping puppies. Pouncing cats. Nestling guinea pigs. Dancing dolphins.
While many of these things might be quite helpful and even effective at times, I would be remiss if I didn’t add the 2 things to help me the most when dealing with a stressful situation.
Meditate on scripture
In the midst of an extremely stressful situation and you just don’t know what to do next? How about meditating on this:
Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him, and he shall direct your path. Prov. 3:5-6
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Phil. 4:6
I can do all things through Christ Jesus who strengthens me. Phil. 4:13
God is our refuge and strength and very present help in trouble. Therefore will we not fear, though the earth be removed, and though the mountains be carried to the midst of the sea. Ps. 46:1-2
Knowing that whatever is causing me stress in that moment- the same God who created the lush green fields, the rolling mountains, the intensely blue sky, the exquisite snow, the strikingly contrasting seasons that we get to enjoy here in Vermont- that same God has a plan for my stressful situation.
Pray. Stressful situations make me very aware of how much out of control of my own life I am. I can’t force situations to go a certain way. I can’t change so many things that are causing my stress. I can only control my response. My ability to cope. But- the reassuring thing is, I know the one who IS control. The one who created this specific stressful situation and put me right inside of it. He didn’t abandon me there. He surrounded me with this specific stress and then reached out his hand to hold mine and said, “Trust in me. I’ve got this.” And so stress reminds me to pray in a way that nothing else does. A calling out for help. A spoken plea.
I’ve heard stress compared to putting a teabag in hot water. You don’t really know what’s inside until hot water surrounds the innocent looking tea bag. Soon, swirls of color bleed out into the clear water. Green tea? Black? Raspberry? Peppermint?
It’s a little scary to think what this kind of life pop quiz will reveal in me. What’s inside? I’ll admit to being prone to snapping at my kids when I get stressed trying to parent them. Or even worse- internalizing the stress until it grows bigger and bigger and bigger and then one day just randomly explodes. Not the most delicious cup of tea.
To be perfectly honest, I know for a fact that what is naturally inside my heart is not good. It is quite sinful. No good exists there on its own. In fact, the Bible says “The heart is deceitful above all things and desperately wicked.
So when that deceitful and desperately wicked heart is put under the hot water stress test, I can guarantee you that that’s one cup of tea that is not savory.
It tends to draw out what’s really inside of all of us- sin.
Stressful situations make me all too aware of my own sinfulness. Of my own need for a Savior. Of my own need for grace, strength, and wisdom. Stress pushes me toward the cross in a desperate cry for help.
Nice pep talk, huh? Super encouraging stuff. You might be thinking, “Can we go back to the deep breath suggestion???”
But in reality- it is super encouraging because that’s not the end of the story. We are all hopelessly sinful, but there was one who wasn’t. One absolutely perfect human being and yet still God who came to die on the cross- taking the burden of our sins on him. That sounds more than a little stressful. And yet he did it- perfectly.
And so as stress sends me to the cross, it reminds me of God sending his own son to take my sins on his shoulders. Of Jesus living his sinless, perfect life in such a way that he became the perfect sacrifice for our sins. Of him dying and then rising from the dead just thee days later. Of his willingness to forgive my sins. Of his promise of life everlasting.
His grace and love towards us replaces our old, sinful man with new life in him. A new heart- one that isn’t full of hate and sin. One that, when placed in the hot water of stress, can imitate Christ’s love and grace.
Our calling as women is so much more than enduring through stressful situations that life might throw our way. I would venture to say that our calling as women is to live this gospel message out through how we handle stress. Not just by the words we speak on facebook or how many church services we attend- but rather how we live through the stressful situations hidden behind the doors of our office or house or school. How we forgive others for their transgressions toward us that sends our lives into a tailspin. How we love the people in our lives. How we give grace, kindness, and unconditional love to others even when- especially when stressed.
I have learned that it’s possible to do so much more than just survive these tough moments. There is joy to be found there. For it’s in these moments when God reveals himself to us the clearest.
7 years after our European trip, we were done with our undergrad degrees. We said “I do” while surrounded by countless red roses and a hundred of our closest friends, finished grad school, moved across the country twice, bought a house and felt all kinds of officially adult. After three years of marriage, we were deeply in love and blissfully happy and so we decided- hey! We should give this kid thing a try!
I was 25 years old and very healthy. In our minds we had worked hard to prepare ourselves for our perfect little family.
“You have no idea what you’re in for!” people warned us. “Parenting is really stressful!”
In reality- all of those well-wishers also had no idea what was coming our way.
At our 20 week ultrasound, we found out that something was really wrong. A couple weeks later, we found out definitively that that “something wrong” was Down syndrome. We had dozens of extra tests and monitoring and everything looked healthy- other than the extra chromosome! But then when she was born she fought for her life for 5 weeks in the NICU. She then couldn’t eat orally so she received surgery to place a tube directly into her stomach where we would measure and pour all of her feeds and medications. When we took her home from the hospital, not only did she have her stomach tube (which made dressing her quite tricky and we had to be constantly vigilant that it didn’t get accidentally pulled out), she was also on a full time oxygen flow which meant that we had to carry around an oxygen cylinder with her every time we picked her up and moved her. And had to be super careful not to kink, tangle, or knot her nasal cannula line. Oh and make sure she didn’t strangle herself in it.
When she was 4 months old she had her first heart surgery in Boston. Because of Aaron’s work schedule- I ended up waiting alone in the waiting room to see if our baby would survive this high-risk procedure. When she was 8 months old she had her second heart surgery. When she was 9 months old- she finally came off of oxygen!
I tell you all of this not so that you will feel sorry for me. Far from it. I have a healthy, beautiful 7-year-old daughter who is the light of my life. I wouldn’t trade her for the world.
But her first year of life- in every sense of the word- was extremely stressful. But this stress was not in vain. The stress of Addison’s diagnosis and health problems pushed me to the cross in a way that life never had before.
It’s all well and good to stand next to the Rock and swear of the Rock’s abilities. But when we have no strength left to hold ourselves up and we find ourselves desperately clinging to the Rock just to keep ourselves upright- it’s then that we experience more intimately the strength that is to be found there.
Falling back on the Lord when no one else could carry us through taught us a dependence on him and his work in our lives- it showed us the beauty of his goodness in the storm of hard times. Pushing through as a new mom when I wasn’t sure how I was going to keep my baby alive another day taught me all about “I can do all things through Christ- who strenghtens me”- The verse I had glibly spouted off my entire life as my life verse, but never once did I really have to live it out.
Until I became a mom to a high needs baby.
God is still a good God even when you have a very sick baby. God is still a good God even when he heals that baby but leaves behind a life long diagnosis. God is still a good God even as he shows you how to find intense joy in a diagnosis you originally fought with tears.
It was God’s grace- God’s love- God’s forgiveness- God’s strength that made new motherhood shine for me. And every day since.
To the point where I can honestly say- I am thankful for this experience. I am thankful for the stress.
The Lord had a “wildly out of control and stressful situation” completely under control every step of the way. He perfectly created Addison, held her life in his hands, and gifted her graciously to us to love.
God has created the beginning and the ends of each of our stories. And each chapter inbetween is crafted with purpose and love. Sometimes it’s hard to see the bigger picture when we are stuck in the stresses of today. But the master author has written a bigger picture for all of us. This includes specifically designing stresses along the way to draw us to himself. To help us through as only he can. To prepare us for the big picture of our lives.
Part of the big picture of my life included a European trip and many hilarious, interesting, stressful, incredible, breathtaking chapters to follow as a result. I am thankful for every chapter, and that he nudged our paths to start running parallel on that trip oh so many years ago.
But what about when she's no longer a baby? I secretly worried.
What happens when "cute baby with a little something extra" grows into awkward girlhood defined by difference? What then? Will it be harder to mother her? Harder to love her?
A couple weeks ago I sat across from Addison at her birthday dinner, and as I stared at her blue eyes, smooth complexion, and just sheer beauty, I was overwhelmed with gratitude that I get to be her mother.
She grew up right in front of me. She grew so gradually that I didn't even notice it was happening until suddenly I woke up and she is 7 years old, full of enthusiasm for life, strong opinions, and a laugh that still makes me without fail laugh too.
Is it harder to mother her as round babyhood has stretched into the awkward lines and sharp angles of girlhood?
No more so than it's hard to mother my other kids.
And I'm not afraid of the person she's growing into. I'm not fearful of her future as an adult with Down syndrome. I am not hiding secret pain of being a special needs mom.
No. I am reveling in this. Every year I get a little more proud of who she is. As she grows and blossoms and grows some more- I am amazed at what an incredible person she is becoming.
A sinner? Oh sure. Flawed? You betcha.
A stunning human being with limitless potential? A thousand times YUP.
My heart is full to bursting as I get to do life with her. As I hear her talk and see insights into her heart.
As she unwrapped a pink dress that we got her for her birthday, she screamed, "SCHOOL!!! I GET TO WEAR PINK DRESS TO SCHOOL!" and laughed and laughed and screamed in glee some more.
I just beamed at her excitement.
This is the first year that she's told me anything that she's wanted for her birthday. Normally, she could really just take or leave it. It was so hard to buy for her. But this year, she specifically asked for clothes and dresses.
Done and done.
She told me what she wanted for her birthday
. This was so huge to me! And I'm still smiling about it- weeks later.
Last weekend I cleaned out my closet. I was tossed and organized and everything was great, until I reached to the very top shelf to toss out a knitting basket from that life phase when I thought I could be a knitter. (spoiler alert- I am not).
I pulled the basket down and saw an itty bitty white hat on top of the discarded scarves and piles of yarn. This wasn't any white hat. It was a hat that I sewed together for Addison while I spent hours on the couch, on bedrest, for the last couple of weeks waiting for her to be born. It was a horrible sewing job, and it was too tiny to fit Addison's head when she was born (spoiler alert- I am also not a seamstress).
But suddenly, staring at that white hat, even with a house full of healthy, laughing, fighting, growing children around me- tears flooded my eyes and my heart squeezed in a funny way.
All I have to do is close my eyes and remember, and suddenly I'm back in that moment. "I'm sorry, your baby tested positive for Trisomy 21. I'm so sorry. Are you alone right now? You probably shouldn't be alone right now. I'm so sorry. Do you want to come in to discuss your options with our genetic counselor?"
Dropping the phone. Losing feeling in my legs. Falling. Losing hope in life. Utter devastation.
I remember how that felt. How afraid I was. How my throat closed up and breathing seemed impossible. How convinced I was that our lives were ruined forever. That I was carrying a syndrome and had lost my baby. How I felt stuck with a life I never asked for, never wanted. A special needs mom.
From here on out, my name would be synonymous with "special" and our family would be "THAT" family with the different kid that everyone felt so sorry for.
I remember this moment in this startling clarity because it was a pivotal moment in the story of my life. The moment that twisted all of my expectations and hopes and trust and ability to cling to the good. The moment I thought that my life was truly over.
The moment that started me on the path to learning that all of my expectations....had been wrong.
This moment sticks out so egregiously in my memory because it was not my new normal. It was simply a passing moment in time, a period of grieving what I thought my life would look like, a phase in which my mindset changed and grew and stretched to the place where I could see past my selfish expectations for my child.
When I think back to that phone call now, I wish he had said, "So, your baby tested positive for Trisomy 21. Congratulations on your new little girl! You won the lottery because yours is coming with something a bit extra! This extra chromosome might change things a bit, but chin up, Mama- just wait until you meet her. She is going to blow you away. Don't underestimate this one. Seriously- you will realize you didn't know what living was until she entered your life. I am so, so, so happy for you and your new baby!!!!"
I wish this phone call could have touched on the look in her eyes when we talk. A sparkling mirth in those blue beauties in their almond shaped frame.
I wish he would have mentioned her laughter. How contagious it is. How purely happy it would make the world around her.
I wish this phone call could have mentioned her today in first grade. How smart she would be. How capable. How truly grown up she was becoming.
How much she would love her bright pink glasses but HATES it when I try to do her hair.
How well she would learn to read! And love doing it.
How obsessed she would be with her new shoes. Or boots and accessories. Or wearing dresses. Or how she loves to spend time with her baby sister.
How after grocery shopping last week, she grabbed a bag full of ziploc bag boxes and correctly put them all away without even being asked.
How her cute babyhood seamlessly transitioned into cute girlhood.
I wish this phone call could have skipped the "I'm sorry"s. Because looking back now- I'm not really sure where there was to be sorry about. For having a baby? A little girl? A beautiful little girl?
Yesterday the boys took away the trampoline ladder and she wanted to climb up and jump, so she pulled herself up without a ladder. Sorry that she's super strong?
This morning she dressed herself with a speed of someone who was eager to get to school and see her friends. Sorry she is so social?
Last night she ate her dinner and asked very politely for an ice cream cone she since had eaten "TWO bites. I ate TWO bites," she said earnestly. Sorry she loves chocolate? Is so verbal? Is hilariously cute?
Addison is no longer a baby. The baby hat- that was meant for her- full of incorrect expectations down to the size of her head is covered in dust. That phase in life is behind us. And now we focus on raising a smart, kind little girl with quirks and strengths all her own.But what about when she's no longer a baby?
I secretly wondered while I worked diligently on the worst baby hat known to mankind.
When she's no longer a baby- she will be a little girl. A beautiful little girl. It just keeps getting better. Every day will be just a bit sweeter than the day before. Getting to know her- getting to do life by her side-
This is your gift.Enjoy.
Being mommy is the best seat in the house.
Don't take a moment of this experience for granted.
And stop crying. There is nothing to cry about. (except maybe how badly you are sewing that hat. But heads up- you also learn to give yourself some grace. So "great job!" on that hat...might want to keep your day job though...)
So extremely grateful for this girl:
Year 7 is off to a great start!!!!
(Just a heads up- we will be doing some website construction in the very near future. Will let you know when our new look is live, and hope you can be patient with us as we transition over in the coming weeks. Thanks!)
(In honor of Addison's upcoming birthday, I am reposting some of my most popular posts. #Downsyndromeawareness
Like most new parents who receive a Down syndrome diagnosis for my child, I was given a list. A list of potential features/problems to expert.
This list is cold, emotionless, and almost comes across as grotesque if you are reading it with fear already in your heart. The sharply angled words on this list tore apart my motherhood dream and became almost like a "side effects" commercial gone wrong.
Now the list has become a part of my life, and I think that whoever made these lists didn't capture the spirit of their assignment. Kind of like if someone was told to describe a Christmas celebration and they said only "Might include an evergreen tree and extreme cold" the end.
Down syndrome is no longer just a list- it has become a part of my heart beating outside my body. And as I was thinking on this list the other day, I decided to rewrite it for myself- with the spirit put back in.
Those "short fingers and small hands" are to me those sweet, warm hands that reach for mine and fold so perfectly into my awkwardly large hands. These tiny hands hold a crayon so perfectly, dress herself with such finesses, and tenderly hold onto her doll babies as she goes throughout her day.
The "simian crease" is the line in the palm of her hands that tells me where to lightly stroke as she lays her head against my shoulder and we watch a movie together.
"Flattened facial features" describes the most delicately beautiful face that fills my entire world with joy. Those cheeks are the ones that curve upward into the most gleeful smile imaginable. The extra flatness across her eyes and nose, adds a sort of exotic beauty- an air of mystery- a unique kind of charm.
"Small nose" the tiny hill in the middle of her face that decorates it perfectly. The exact same nose as both her brothers.
"Gap between her toes" is just a feature of the tiny feet that staccato through my house as if performing a song of victory with every confident step. The feet that run into school full of independence and pride. The feet that walk toward me tired with a "good job well done" theme when school is done. The feet that climb, jump, and run. The feet that keep up with her very active brother every step of the way.
"Short neck"? The back of her neck also includes extra skin- from the cysts that grew there during pregnancy. I have discovered that this is the perfect spot for kisses. A ticklish spot- her neck is guaranteed to get belly laughs that will put a smile on any face. This necks rocks a set of pearls like no one's business. This neck holds high a head full of blonde curls. This neck turns quickly as soon as she hears the smallest sound of chocolate being eaten in the farthest corner of the house.
"Small, abnormally shaped ears" the place where I gently tuck her hair out of her face. Also- these ears are the holders for whatever blingy earring set she is wearing that day. The ears that hear me say "I love you". The ears that take in the world around her- and then she responds accordingly.
"Upward, slanting eyes" are the almond shaped windows into my daughter's soul. The most beautiful soul housed in the most beautiful of eyes- this unique shape only adds to the beauty that is Addison.
"Poor muscle tone" means that when she wraps herself around me for a hug, her entire body melts into mine with a warm grasp that makes all other hugs suddenly seem lacking in comparison. When I pick her up in the morning, there is something very cool about the way she melts into my arms, rag doll fashion. Her arms reach up to hold onto my neck, and her face presses into me. Never do I feel needed and loved more than when she lets me carry and hold her.
"Excessive flexibility" means that she does splits and awesome gymnastics tricks like nobody's business. Someday we will find a place for her to channel this skill. But for now? She wowed the socks off of her swim class teacher last week as she did the splits in the water…while swimming.
"Tiny white spots on the colored part of her eyes" describes to me blue eyes flecked with extra goodness and love. It's like she has bits of cloud floating in her blue eye skies.
"Short height" means she stays in each size a little bit longer which makes is so much cheaper to dress her fabulously. Her two year old brother has long passed her up in height. But as she needs more help with certain things, it makes it so much easier that she is smaller and lighter to carry around.
"Extra large, protruding tongue" honestly she has never once had her tongue protrude- but if she did, I'm guessing it would be to stick her tongue out at me with the sass that I have come to associate with her personality. She does struggle with speech, and I think this does go back to having an extra large tongue (with extra small mouth). But she works so hard, and has had huge success in this area. This tongue is the one who says "mommy" and "Carter" and "Ewi" and "Daddy". This tongue is the one who tells us what Addison wants. This tongue is the one that tastes her food and has told her that she definitely likes chocolate the best.
"Intellectual disability, mental retardation" She knows the list says this, and she uses this knowledge to always pretend that she doesn't understand instructions (she does)- while she then does whatever she wants, grinning at pulling yet another fast one over on me. #evilgenius There is a difference between developmental delay and "stupid". Addison is the farthest thing from stupid. In fact, I would venture to say that oftentimes she is way smarter than both of her Master degree holding parents. Oftentimes things take her longer to learn, but she gets there. In her own time, she gets there and then she makes us all wonder why we were in such a hurry.
"Possible heart defects" She has had two heart surgeries but no actual heart defect. Her second surgery, in fact ended up just being an umbrella shaped objet put into her thigh and carried up a vein to her heart. She came away from "surgery" with only a bandaid. A BANDAID. She was the youngest/smallest person to have this particular procedure done at Boston Children's Hospital. Her last heart checkup included perfection and "AHHHHH she's so adorable!" from all involved.
"Possible vision problem or crossed eyes." Whelp she would get vision problems from me and her Grandmas anyway so…. Also, her glasses (which are in the shop right now) turn her into a mini profession/model/intellectual faster than you can say "cute baby". Her othomologist says that because of her flattened features, it makes the eyes look even more crossed than they are. A sort of "crossing mirage" if you will. She has had surgery for crossing. But I will say- these eyes- crossed or not, bespeckled or not- they miss nothing. Her favorite is reading. She reads all the time. Her eyes manage this particular hobby quite nicely.
"Will most likely resemble one another" While she does have features of Down syndrome, her brothers will never ever be able to deny her. #twinsies#triplets
I think she definitely looks like our family first, Down syndrome second.
And nothing on the lists warned me about the long NICU stay when all her ultrasounds looked healthy, the 9 months of oxygen, the g-tube, and the sleep studies. (And yet how all of this would be worth it a million times over.) I think because- no one person with Down syndrome speaks for all. The only thing that remains constant? An individual with Down syndrome is a person. A person with many variables that cannot possibly be contained with a list.
So I think when doctors hand over the list to new parents shocked with a new diagnosis, they should include all the facts. Like- this list really means nothing. Except to tell you- you are about to have a baby. A super cute, amazing baby. A baby who will rock your world in unexpected ways. A baby who will have struggles and strengths. A baby who will steal your heart and make you wonder how your life even existed before this baby came into your life. A baby who might have some extra health problems but who was paired perfectly with a fighting spirit to overcome and thrive.
So here you go. My Christmas includes more than a stark evergreen tree and extreme cold. It includes twinkly lights, presents, sugar loaded baked goods, a spirit of happiness, plenty of snow, Christmas movie marathons, a story of hope, and so many more awesome things.
-Deanna J Smith
Originally posted August 2014