Tuesday, February 21, 2017

What happens when she's no longer a baby?

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!)

Monday, February 6, 2017

Dear NICU Parent

(In honor of Addison's birthday (today!), I am reposting this. I can't think of Addison's birth without having big NICU flashbacks. Originally posted 3 years ago today.)

Dear NICU Parent,

I see you.

I see you sit hours on end next to an isolette stroking the tiny hand of your child who is covered in so many wires that you can't see her face.

I see the confused and impatient look on your face as the doctor does his rounds and then ends with "We don't really know. We just need to wait and see".

I see you leave the room in agony as your baby has to have a painful procedure that 1. you can't do anything about 2. you can't even scoop her up and comfort her when it's all over as she cannot be moved.

I see you cringe as well-meaning friends say "You're lucky you get go to home and sleep a full night!"

I see you wanting to stay home in pajamas all day with a body beaten and sore from childbirth but instead digging out clothes that sort of fit you and making your daily pilgrimage into the hospital where you left part of your heart behind.

I see you enviously watching new mommy after new mommy being wheeled by the NICU's window holding a perfectly healthy baby and taking their baby with them to the mommy recovery floor.

I see you struggle to feed your child- a simple life function now become extremely difficult.

I see you trying to find your place in all of this as the nurses and doctors take over parental duties and you find yourself sitting on the sidelines.

I see the worry on your brow as you wonder if you somehow did pregnancy wrong to cause all of this.

I see you rejoicing over small changes in oxygen numbers or praising good eating in the foreign language of "ccs"

I see you taking in the constant beeps of the noisy room and yet feeling deafened by the silence.

I see you feeling incredibly lonely as health concerns means absolutely no visitors- not even Grandma and Grandpa.

I see you wipe tears away when you think no one is looking and hastily clear your throat for normal conversation when the nurse appears out of nowhere.

I see how extremely thankful you are for how much that nurse loves and gently cares for your baby.

I see the look on your face when you arrive home after a long and difficult day, walk into a beautifully decorated nursery, and just sit with emotions too heavy to express.

I see the hope on your heart when you go to bed that night, thinking that maybe tomorrow will be THE day when the doctor's FINALLY know when you can bring your new baby home.

I see the devastation in your eyes when that estimate of "maybe next week" gets pushed out week after week.

I see the fear on your face as you finally leave after countless weeks with a baby who is on 24 hours of oxygen and a g-tube, and you wonder if you will screw this up.

I see all of this because I was you four years ago.

Today as I pulled out my first born's first pictures to celebrate her birthdday, I felt all of these emotions and memories wash over me that I hadn't felt or thought of in some time.

Why did this hit me with a wave unbelief that this was actually us 4 years ago today?

Because today...

We snuck cupcakes for our midmorning snack. We colored. We played with stickers. I gave her a long bubbly bath. She played with her brother. She fought with her brother. We all danced together to her favorite music CDs. We hugged. We read books. We laughed. We talked. We listened. I brushed her hair very carefully as she took her glasses off and said "all done". I had to say such routine things as "STOP CLIMBING ON THE COUNTER" and "Please stay in the bath until I can get you a towel" and "Just because you CAN throw that at your brother doesn't mean you SHOULD.

I have long accepted that our NICU time just "was". It wasn't anyone's fault. It wasn't a mistake. It has just blended into our daughter's history that marks her strength and courage. A history carefully and perfectly planned by a sovereign God.

Today we celebrate a life that we fought so hard for 4 years ago in the NICU. A fight that we forgot about...until today.

Why did we forget? Well....we have been too busy enjoying this:

 while she has completely mastered skills that the doctors told us she might never do

some good skills....some not so good skills...

For the past 4 years she has lived life with this smile not too far away,

 enjoyed the sights of life (with snacks...of course),

 learned how to work an iPhone,

 mastered the art of flying,

 stole to support her sweet tooth,

 learned how to ski,

let us know that she wasn't fan of the cold required for skiing,

started going to preschool,

 became an expert "stirrer"

 and oh so many other things...

...typical, little girl things.

So NICU parent- I see you- discouraged- thinking that this phase of life will last forever.

It won't.

Chin up. Hang on tight. Keep pushing through. Keep hoping and praying.

Keep fighting.

Because the best is yet to come.


p.s. to the awesome Fletcher Allen NICU...THANK YOU

Wednesday, February 1, 2017

I Won't Let My Daughter With Down Syndrome Be Defined By A List

(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