Thursday, February 27, 2014

Filling The Cracks With Gold

The Japanese repair broken pottery with gold- the art of Kintsugi. An ordinary bowl or vase suddenly becomes a magnificent piece of art because of repaired cracks filled with gold running through the design.

When it comes to our children, I think it can be easy to expect a certain product going into it without even realizing or admitting out loud that we do.

We put in our order, and then wait for our Ikea delivery of a mass produced vase to arrive. We dream of displaying it perfectly in our house where all can see and comment on the beautiful symmetry, gloriously detailed color, and smartly polished exterior. We beam at the perfection of our art. Look at what we have done. 

We expect one thing, and if our order arrives cracked, broken, smudged, or defective- we label it as such. A birth defect, a mistake.

The problem is- the one who is creating our children- the Master Artist behind all of human kind- he doesn't make mistakes. There is no such thing as a "cracked, broken, smudged, or defective" work when it comes to God's creation.

When I received Addison's diagnosis, I thought my baby was broken because I was waiting for the vase I ordered from the picture catalog- the vase with a perfectly smooth exterior. But what I didn't realize was that God deliberately made her vase with certain cracks so that he could have a place to add in gold and make her beauty and worth ten times what I had expected.

She isn't broken. She was made perfectly this way.

These cracks didn't happen because of something we did or because of a mistake made. These cracks were God's deliberate gift to us. A gift of unique beauty. A way to make something great even better. A way to create extra place holders for some brilliantly colored gold.

I have three children- all different- all made that way for a reason. My "orders" have come to me entirely different than what I expected. They are better than my mind could have ever dreamed up on its own.

None of them are perfect, but they were each designed perfectly just the way they were meant to be from the very beginning.

Truth be told, when it comes to children- they all have their own unique design, their own individual swirl of colors, their own scratches and cracks adding character to their vase. There are no two children designed alike. There is no such thing as an Ikea mass produced model of a child. And thank God for that.

The Master Artist doesn't stare at the finished product that is my daughter's life and bemoan mistakes. He beams with pride over his perfectly unique creation that was sent to add beauty to a fallen world.

The Master Artist isn't up in his studio scratching his head over all the labels floating around these days wondering how the scratches and cracks came to be in his art. He made those scratches- deliberately. He planned for them and executed them perfectly into a unique being full of beauty all his own- liberally pouring gold into the extra spaces.

"Oh if only Addison was the little girl I was supposed to have instead of one with an extra chromosome!"

She is exactly the little girl I was meant to have. She was created perfectly- with many flecks of gold proving worth far beyond what I deserve. There was no "oopsie" here. There was only an "It is good" as he stared at his creation.

I see where Addison is so very different from other girls her age. I get frustrated with her at times. I question why she has to work so hard for certain things. But then as I look closer- as I lean in to truly study the pottery that was gifted to me- I see the much deeper cracks and scratches than are on Carter's or Eli's pottery. I see where extra space was created on her vase- extra long scratches. And as I truly take the time to examine this- I see the extra gold that was poured into all that extra space. Extra gold that was supposed to go there from the very beginning as part of her design- not to fix a mistake. Extra gold that is so pure and startlingly beautiful that it takes over the look of the entire vase. A vase that isn't broken- but a vase with so many glorious lines of gold designed into it that the beauty is truly breathtaking.

My children were all designed perfectly. I pray that I can teach them as they grow to embrace their uniqueness. I pray that I can teach the boys that Addison is the perfect sister for them. I pray that I can show them through example how to accept the sovereign Creator's plan as the best plan. The most beautiful plan. The plan with absolutely no mistakes.

Wednesday, February 26, 2014

Sun Shine Down

This post is a few months late- as I had intended to post this in the month of October- Down syndrome awareness month.

I am totally claiming pregnancy-brain-new-baby-fog on this one. But here I am now- wanting to share with you a friend's book:

Sun Shine Down.
I read this toward the end of my pregnancy- not really sure what to expect. Sure, it was a memoir about Down syndrome and sure, I had corresponded with the author several times on writing "stuff"- but her story was different than mine. Would I love it? Feel a disconnect?

I hunkered down with the book one fall evening- and found myself completely mesmerized and unable to put it down.

Gillian was living overseas- in Ukraine. She had two beautiful daughters, a handsome husband, and a perfectly built life. The birth of her third daughter-born with Down syndrome- blew this all apart for her.

The way Gillian tells her story is so real. I felt her pain. I cried along with her. I understood truly how she felt when she was surprised by this news. She holds nothing back as she describes her experience.

But on top of receiving this surprise diagnosis at birth- she was dealing with a foreign language in a foreign country. Her husband was the national. She was the American still learning the language.

Foreign hospital. Foreign doctors. Foreign diagnosis.

Her story is so different than mine, and yet I felt the same tugs on my heart as she struggled to accept her daughter. I was fascinated by the spin on the story happening in a foreign setting. I was comforted by the story being told in such a familiar way.

I love that she is a pastor's wife and yet lays it out in brutiful honesty. She isn't trying to impress anyone- or show how spiritual she is. She is showing us her heart- and how it came to heal.

She reveals her brokeness and how her perfect life was built back together- including and fiercely loving her third daughter (Polly) and her diagnosis.

On this morning, something deep inside me cracked open: unabashed love, thick like wet clay. I gathered it up for us and squished it around. Polly grabbed and flung it to me. I balled it up and sent it, once again, to her. It went back and forth between us all morning. Her smile, brighter than the Christmas tree, lit up her little face. We were lost in mutual adoration. This was what other parents to children with Down syndrome meant, "Let the baby change you." I'd gotten nowhere regarding Polly as a child with Down syndrome, but when I was able to see her as a baby, as my baby, a light switched on inside. Sun Shine Down, pg 119

If you want to read a good memoir on Down syndrome that will take you on the journey from fear to such deep acceptance that she ends up adopting a second daughter with Down syndrome as well- this is a wonderful read.

Thank you Gillian, for sharing your journey with us so eloquently.

*all opinions are my own, but this post does contain affiliate links

Monday, February 24, 2014

Escaping and Protecting

I stopped to talk to her for one minute. Two- max.

We were walking into church as a family- rather, bumbling into church while holding flailing limbs of little people and carrying a heavy infant seat while looking shell shocked and harried (a by product of simply getting out the door these days, I'm afraid).

Aaron was walking up ahead with Carter, and Addison was walking next to me while I carried Eli. When I stopped to talk to my friend- there was a clear, short path up ahead to the nursery where Addison has gone so many times before. Plus- Aaron was right there and no doubt she would catch up to them in the one minute that I stopped. Nothing to worry about- or so I thought as I stood still for a minute letting Addison continue without me.

Except when I went ahead to the nursery area, I didn't see her anywhere. I asked Aaron- is Addison with you? Nope. I asked a friend- have you seen Addison back by any of the nurseries? Nope.

Since the nursery area was a dead end, the only other place she could have gone was up the very large staircase that led up into "big" church. It had only been a minute, so I figured I would catch her halfway up the stairs.

Leaving Eli by the nursery with Aaron, I went running up the stairs. Even in a safe environment surrounded by wonderful people- it made me panicked to not know exactly where she was. I ran up the entire flight of stairs- no Addison. The friend I saw on the stairs hadn't seen Addison. I ran into the fellowship room right outside of "big" church- no Addison.

But then I noticed something rather interesting. There was a pathway of people standing and chuckling- with giant smiles on their faces. When they saw me in hot pursuit, they all pointed the same direction. I followed the path of pointing fingers, until I was in the sanctuary, and I saw her.

Walking confidently, head held high, holding her hat under her arm, perusing the path ahead of her- she was looking for a seat. She was halfway through the auditorium- her little legs pumping so quickly they were almost a blur.

You know that you are a parent of a special needs parent when you are simultaneously horrified and yet incredibly proud by the same incident.

I was horrified that she had disappeared so successfully. And yet- I was proud.

I was proud of how quickly she climbed those stairs all by herself. I was proud of how tall and confidently she marched all on her own amidst a sea of people. I was proud of her independent spirit. I was proud of her desire to be a part of "big" church. I was proud of all the skills that she worked so hard for and had to put into that "escape".

And yet- I was horrified that I had lost her and what this same escape would mean in a much less safe environment.

Yesterday I was pondering on this incident all the while pondering why I blog-because of a picture of Addison was used without my permission on someone else's facebook page. Why do I blog? Why do I put pictures of my kids out into the big, bad internet where complete control is a thing of the past? Why do I pour out my heart into a post that might more comfortably fit into a journal entry under lock and key? Why blog- publicly?

And yet as I thought about this incident- the first thing I wanted to do was to share it with all of you. Because you get it. You have watched Addison go from an incredibly sick infant to a confident 4 year old tearing down the church aisle all on her own. You have read how I loathed Down syndrome and grieved for her entire pregnancy to then fall deeply and helplessly in love with my daughter and her diagnosis. You have seen the pictures of her with a nasal cannula to the pictures of her enjoying life and laughing hysterically with pink cheeks free of tape. You have been with us every step of this journey, and while I struggle with the line of protecting my daughter vs sharing my daughter- I always come to the same conclusion.

When I find out about Addison's diagnosis- I read articles until I was blue in the face about Down syndrome, but I needed to SEE it. I needed to read a mother's account. I needed to hear that someone else had felt similarly, and yet had an amazingly experience once they were in it. I needed to feel the heart of what this life was truly like.

And that's why I blog. I blog, I share, and I put this all out there because I feel that Down syndrome is grossly misrepresented in vague stereotypes and clinical medical terms resulting in a high abortion rate when this diagnosis is received. I want to help a small portion of the world SEE Down syndrome. To feel the unique combination of joy and frustration. To experience the happiness of a milestone conquered- the excitement of exploring an unexpected path. To realize the normalcy of life even after such a diagnosis. To keep a kind perspective on others not like themselves. To be reminded that a person is a person no matter how she is diagnosed.

Maybe someday things will happen to cause me to go private, but for now- here we are.

Could you do me a favor? I don't mind if you share my blog posts- in fact, I love it when you do. But if you ever see a picture of Addison floating around that doesn't seem to be coming from us here on the blog- could you please let me know? If you ever feel the need to use one of Addison's pictures for something- could you email and ask me first?

Yesterday when friends told me of Addison's picture being used somewhere else, I was able to contact the page owner who very graciously took the picture down when she learned that I was not OK with  my daughter's picture being used on her page for page "likes". Crisis averted- for now.

If you have noticed, I have shared fewer pictures here on the blog than ever before- putting more writing in place of them. Just trying to balance things out. Also- from here on out I will be more faithful with my watermarking. I don't always have the extra time for this, but today I realized I need to make the time.

It is getting harder and harder to protect our kids online, and I do struggle with the pros and cons of this, but for today?

I think about Addison escaping in church, I picture the looks on your faces when you read her of her shenanigans, and I see how you are proud and horrified too. Because we have come a long way- together.

Monday, February 17, 2014

Frame Or Picture?

I heard the quote tonight that when we become mothers, we stop being the picture and start being the frame.

You may agree or disagree, and in spite of me wanting to stand up and shout "I'm still my own person too!"- I'm inclined to agree with this statement.

Let's try it out:

Addison has Down syndrome. OH NO!!! It's my picture, and it's ruined! But wait. It's HER picture full of unique beauty, and I am the frame.

or even farther back than that:

Oh look- I just had a BABY! Yay me!! Let's celebrate this day as the day I GAVE BIRTH. Oh wait. It's now this tiny person's birthday? It's all about celebrating her new existence and not what I did to get her here? Becoming the frame.

or perhaps:

I can't BELIEVE he is taking so long to hit X milestone! Doesn't he understand I NEED this for facebook bragging rights? But then again- it's HIS milestone, HIS pace of achieving it, and HIS personal point of victory when it arrives. Picture. Frame.

I've been thinking about this a lot in regards to how I have fed my babies.

Addison, because of extremely low muscle tone, needed to be fed by a g-tube. For those of you who don't know what a g-tube is- it is a surgically placed device that allowed me to "pour" food directly into her stomach. There was a time that I took this as a personal failure. Didn't she understand? I NEEDED to breastfeed her. I was pumping and doing everything I could to get her there- but she never arrived. HOW DARE SHE. Actually- it was about Addison, what she needed, and how her body would receive sustenance in order to thrive. I was merely the frame, doing everything in my power to display her picture according to what was needed for survival.

Carter- wasn't a fan of breastfeeding himself. I beat myself up over this so much when I finally had to stop pumping and put him on formula. HE WAS RUINING MOTHERHOOD FOR ME! Except- not at all. I was the mere frame, doing my very best with what I was given.

I think the reason I have been thinking so much about this lately is because of how well Eli has been breastfeeding. He loves to breastfeed SO much, he absolutely will not take a bottle. Nope. In fact, he gets quite angry when offered one.

The thing is- I am the same mother who has done her very best for each of these babies.

1. g-tube
2. bottle only
3. breast only

If this was my picture- I think it would be safe to assume that this would be a much more uniform list. Since it is ALL ABOUT ME. And yet? I have three separate pictures that I get the privilege of framing. Three children with three different personalities, three different infanthoods, and three different sets of needs.

I guess the bigger lesson that I have learned through these three very separate feeding experiences, is that motherhood is not about me. Not even a little bit.

Motherhood isn't about me doing everything "right". Motherhood isn't about me avoiding or stacking on guilt whenever possible. Motherhood isn't about me feeling superior or inferior to any other mother.

Motherhood is simply- framing and protecting the beautiful picture sent my way. Even if it's a bright picture when I expected a dark one. Or too much yellow when I was hoping for purple. Or perhaps full of horizontal stripes when I have an obsession with polka dots.

I don't get to choose. I'm the frame.

I've been giving myself a lot more grace in motherhood lately. Sure, there are still moments when I freak out about how many vegetables I can get my kids to eat that day- or spend too long worrying about a toddler tantrum or if they're having too much screen time. But something about the busyness of three kids has helped me step back, do the essentials, love them unconditionally, and know that I am doing my very best for them and that it is enough.

Framing is exhausting but beautiful work. The best part is? I get to enjoy these three gorgeous pictures every single day as they change, colors swirl, and pictures develop into more mature versions of themselves. The privilege truly is humbling.

Saturday, February 15, 2014

Breaking News: Blogger Spotted Out Of Her House With No Children

It has been reported that Ms. Smith was seen leaving her house on the evening of February 14th, 2014.

As if it wasn't enough that she was wearing a little black dress, her "nice" coat, and sporting hair that actually looked as though it had been brushed- this Mommy of three had NO children with her. Our team has been digging for more dirt on this shocking turn of events.

Every time she has been spotted around town the past twelve weeks, she has had a cling-on hanging out solemnly (or not so solemnly) in an infant carseat carrier very near to Ms. Smith at all times. Not to mention the two toddlers who were spotted stealing cookies from her cart at a local grocery store last week. Our contact last night informed us that the cookie stealing toddlers AND the carseat was left behind on the evening of February 14th with what seemed to be an extremely reputable babysitter.

About an hour later witnesses spotted her with what appeared to be a clean-shaven stranger at a hotel ballroom in South Burlington. Upon closer inspection, it was decided that the clean-shaven stranger was actually her husband. All accounts agree that he does indeed "clean up nicely". Their parked vehicle seemed to be a truck full of snow removal equipment. The crowd relaxed noticeably upon seeing this as the foot of snow already fallen that day made parking a bit questionable.

Almost unrecognizable herself without her customary flannel pajama pants- Ms. Smith seemed to glow with something other than baby spit-up. One witness suggested the possibility of happiness creating the glow. Another mentioned seeing that same look on the face of a caged animal finally given freedom out into the wild.

This glow quickly changed into something else after a mere fifteen minutes. Something tense and nervous. Checking her phone every two minutes, the "update" button on her email seemed to be getting a workout even more rigorous than her spanxs. A worried face was turned to her husband constantly through dinner. A nearby diner heard her whisper "But he woke up!!! Is he OK? Does he think I've abandoned him??? My BABY!!!!"

Parenting experts suggest that leaving your baby for the first time in the care of someone else can create anxiety in the new mother. Ms. Smith seemed to be no exception to this rule.

This anxiety only seemed to ease as the dance floor started filling up. Dragging her husband out onto the dance floor, the blogger from Essex began shaking what we can only assume to be out-of-sync Zumba moves while wearing flashy silver heels that blinded several nearby dancers. We attempted to obtain the name of this Zumba instructor for comment, but the embarrassed teacher begged not to be mentioned. The heels are still being held in police custody waiting to be questioned.

Chatting with friends, slurping down her meal so quickly that no doubt she forgot that she didn't need to hurry in order to feed three tiny people in addition to herself, drinking too many cups of coffee (tsk tsk), listening to the offered program, and oogling over her husband's piece of chocolate cake- Ms. Smith seemed to relax and enjoy what we can only assume to be a Valentine's Day date.

All witness accounts concur that it seemed to be a lovely evening although pictures of the three children were missed on Instagram for an entire four hours. Followers could be seen sobbing into their phones as they wondered what had become of the clearly neglected children.

February 14th, 2014- late in the evening the couple returned home with a new spring in their step. One person suggested this could have been due to the large amounts of sugar in the cake consumed for dessert. Another wondered what happened to that ankle that appeared to be sprained and smushed toes from the dancing debacle. Yet a third witness concluded that perhaps the caffeine from the coffee started to truly kick in. We have our own theory. (insert mushy comment about love and togetherness gaining perspective when stepping away)

February 15th, 2015- back to the grindstone. When asked for a comment, Ms. Smith replied with a new facebook status update:

It's amazing how much cuter your children are the morning after a night out. #hotdate #awesomebabysitter#mychildrenhaveneverlookedmorebeautifulwhiningovereggs

We suggest that she seek therapy for her hashtag addiction.

Tuesday, February 11, 2014

In Which Addison Says GO

Last night I was on my own for dinner and baths for the kids. It had already been a long afternoon of cleaning up weekend disasters, saying "No more iPad today", and "I SAID NO MORE IPAD TODAY" (super sweetly of course), begging them to at least try the yummy chicken tacos that I slipped copious amounts of avocado into, and picking them off the kitchen counter for the 100th time (seriously they love to climb). By the time we reached bath time, my patience was considerably thinner than it is when I have Aaron's help during the hardest two hours of the day- getting ready for dinner, serving dinner, getting ready for baths. The most wonderful, sweetest, most amazing days all seem to crumble into screaming tantrums and blatant disobedience during those last two hours (sometimes the kids act out too). It's a curse. The "IT'S ALMOST TIME TO SLEEP??? NO!" curse.

Even though low on patience while finishing up the bedtime curse sequence, I had a plan. I placed the older two kids in their bath full of bubbles and play balls and tried to get them busy playing and occupied so that I could bathe Eli on the floor next to them in his bath.

I filled up Eli's tub; the older two were playing; everything was on track....until the older kids decided that they were DONE and were going to climb out of the tub by themselves thank you very much. I hadn't even bathed the manky infant smell off the smallest of them yet, so I tried to appeal to their competitive side.

I sprayed both of their chests with shaving cream and enthusiastically said "It's a race!!!! Let's see who can spread the shaving cream all of their bodies first!!!! YAYAYAYAY!!!" Sometimes the "YAYAYAY" will get the most bored of toddlers skipping along. Sometimes not.

They both stared at me as though my second head just sprouted a third nose.

Ignoring them, I enthusiastically held both arms up into the arm and dramatically shouted "REEEEAAAADDDDYYYY SSSSEEEETTTT.......GO!" while lowering one arm down as if holding a flag.

They continued to stare. Addison was the first to react. She got a strange glint in her eye, raised both arms over her head, lowered one dramatically as if holding a flag, and shouted "GO!" before dissolving into giggles.

Her "Go" was clearer than my "Go".

Interesting fact: we haven't taught her the word "go". It was never written on her word card sent home from school, and never once has her speech therapist mentioned working on this word with her.

For the longest time, we slaved over one word at a time. Weeks turning into months turing into years- we worked and worked and worked on a handful of words. I was discouraged at her lack of progress. Maybe she would be mostly nonverbal? Should we go back to full time sign language?

And suddenly over the last few weeks? Her vocabulary is exploding. Every day she's repeating new words that she's only heard us say in conversation- NOT worked on in a therapy setting. She's putting two words sometimes three together, she's placing ownership over things with a loud "MINE!" or "MY CARD". She's asking very clearly for what she wants- drink-wise, food-wise, activity-wise.

This morning while changing Eli's diaper, I heard Addison and Carter talking behind me

"Baby. Baby. Daddy? sdlkfnslfnlsd Daddy? Daddy? Daddy?" (Addison)
"No. Daddy is at work. In truck. Work. Daddy." Replied Carter
"Cereal? Cereal? Cereal? My Cereal?" Addison turned to him
"BLUE Cereal!!!!" Replied Carter
"cereal cookie cookie COOKIE!!!!" (Addison)
"cookie. I WANT COOKIE! I WANT iPAD! iPAD" (Carter)

and it went downhill from there. It just cracks me up to hear their conversations and how much Addison is now adding to them.

She has plateaued for so long with speech, it is amazing to see her make so much progress so fast! She'll grab hold of a word and repeat it over and over again until she gets what she wants or needs. Apparently she has started bellowing for her aide (Mrs. T) every time she leaves her side at school.

"T! T! T! T! HELP! T! T! HELP! T! T! T!" until her aide comes back. We're working on the "Please come help me, Mrs. T", but I'm not gonna lie- pretty pleased with the progress (even though it sounds a little demanding written down like this).

Last night while she was in the bathtub, I paused, speechless for a moment after she shouted "GO" because I was so amazed at the clarity with which she said it and amused at her spot on imitation of me. (I was even OK with the subtle mocking)

I am just so proud of her, pleased with her progress, and surprised by her daily as she says words I never thought I would hear cross her lips. She's four and just now taking off with her language? Don't even care. It has been worth waiting for. (-: Can't wait to hear what she says next.

Thursday, February 6, 2014

Dear NICU Parent

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

Monday, February 3, 2014

"I get uncomfortable when I see people in public with handicaps"

Last week I received this very thoughtful question in my inbox:

"I get uncomfortable too when I see people in public with handicaps. I don't understand it, and it is making me crazy. I see them and I want to be open and loving like I am to everyone else, but I feel like how can I understand what they are saying etc...and I feel like the parents can see through my efforts to connect, and I get flustered. Can you help me understand how to connect? I so desperately want to change this. What's the best way to approach?"

I don't consider myself an expert on this subject, but as someone who has completely changed on this subject in the past 5 years, I do have some thoughts.

My freshman year of college, rather proud of my Music Education student status, I remember the first time I met one of my roommates. She was gorgeous. Really fun curly hair, beautiful features, and super sweet- I immediately adored her. When she told me her major was Special Education, I was floored. Why? Why would someone as pretty as her want to work with people who were so...different? I couldn't picture why she would care enough to get a degree in it. What did she see in this field?

Every time I encountered someone out and out with noticeable special needs or handicaps, I was immediately uncomfortable. Most of the time I couldn't understand what they were saying, they seemed to have little to no respect of my personal space, and I just didn't know how to connect. 

Little did I know that soon I would be the mother of such a special needs child.

When she was still a baby- this uncomfortable feeling intensified. Not only did I not know how to respond or act around "them", but now I pictured their lives as my daughter's future, and I just wanted to sob at the thought of her being a Walmart greeter one day- or the bagger at the grocery store that is so slow that everyone tried to get into a different line.

To me- a highly driven type A person- I didn't "get" these people. I lumped them all into one category, threw a "they" and "them" on it, and avoided at all costs with a quick look of pity whenever I was forced to look.

But somewhere along the line, my perspective has shifted. I don't even know exactly when it happened. I attribute it to things that Addison has taught me: empathy. compassion. the value of a life.

I stopped looking at the differences, and started seeing what was the same. I started putting myself in the shoes of the mother. I stopped seeing problems, and started seeing worth. Just because I was an apple and didn't understand oranges didn't mean that there wasn't something important and extremely valuable about oranges too.

I thought about a mother who desperately prayed that he would survive surgery. I thought about the joy of first smiles- the exhilaration of first steps when they were worked SO HARD for- crutches and leg braces the glorious aids that helped him get there. I thought about the long hours of therapy that were patiently planned and executed. I thought about the achievements that might seem so small to an outsider but so huge to the family that cheered the years of work to get there. I thought about the sobs at the painful thought of losing him to sickness. I thought about a family that wasn't complete without him. I thought about a mother who has dedicated her entirely of motherhood to caring for him. I thought about his personality- how he might get goofy when he's feeling particularly silly or moody when he's upset. I thought about the joy he gets from being a Walmart greeter. I thought about the sense of accomplishment he gets from bagging those groceries. I thought about those mumbled words taking years to be added to his vocabulary- and the huge celebration that was had when he first started saying them.

I now envy my college roommate. I so wish that I had a degree in special ed. What an amazing field to study, and I wish it hadn't taken me so long to realize it.

Today while doing some early morning walking in the mall with the boys, we passed a gentleman in a wheelchair. His head was tilted back with his mouth open. His limbs rested heavily on his chair as if they could not be moved. He moaned loudly, stopping only to take breaths. In times past, that is all I would have noticed as I scurried by. But today? I saw a beautifully handmade bib catching his drool. I saw a lap blanket that was obviously made with love and care by the older woman walking next to his chair who was asking him questions and content with only his moans for replies. I smiled broadly as I walked by- wishing that we had time to stop and and get to know this duo surrounded by so much love.

Last fall, I met a young lady who was also confined to a chair/bed. Her only way to communicate was to squeeze a device that indicated her yes/no. The mother told me that she has been changing her daughter's diapers for 29 years. But then in her next breath she started smiling as she told me a funny thing that her daughter did in the middle of the night the last week. Small things. Small achievements. That were huge to them. The love shining through that mother's eyes made spending time with her daughter a privilege and joy even though I wasn't sure exactly what to say or how to communicate with her.

I guess the biggest reason my uncomfortableness has fled, is because if I see an individual with special needs with a parent/caregiver- I recognize the look in their eyes. The look of "this is hard and yet amazing". The look of "I know my child is different but please look beyond that because there is so much there." I immediately feel a connection because we have something in common even though our specific stories are different.

Especially when I see families with a child with Down syndrome- I want to stop and get to know them  because I see bits of Addison in the child, and I am instantly in love. Sometimes with the older kids- I can't always understand what they are saying. But I keep listening, and I know that if I turn to the parents they will translate for me. I love hearing their current triumphs/struggles. I love hearing how they made it through the toddler years, and I love to get their insight on things they have already conquered.

To answer the sweet question that was directed my way. How do you stop feeling uncomfortable when you run across individuals with special needs in public?

Imagine you are his/her parent. Imagine what had to be taught/done for that individual to be out and about in such a way. Imagine the journey that has been traveled- the victories that have been won. Imagine the love that has built this life. Smile. Talk when appropriate. And listen. Even if you can't understand. Try. Don't be afraid to ask for clarification or for something to be repeated.

When I'm cheering for a new word that Addison has said, she isn't always understood by other people  because she says it 1.softly 2.quickly her own way. I am MORE than happy to repeat it to those listening so that they can understand her too. I don't get offended by a confused "What?" while I'm in the middle of the "SHE SAID A WORD!" happy dance. I repeat it as quickly as possible so that you can join the happy dance too. 

Last week while grocery shopping with Eli, we met two teenage boys who have Down syndrome. They were shopping for the school store with their special ed teachers. One boy said he loved babies and asked what my baby's name was. When I answered "Eli" he replied "I LOVE the name Eli!" very enthusiastically. The other boy wasn't as verbal- nodding along. But the interaction and the joy that I saw on both of their faces had me smiling the rest of the day.

Someday perhaps my Addison will be the one in the store that you pass by. She might have trouble with personal boundaries and engage you in a conversation that you weren't interested in starting. She might try to give you a hug. She might for all purposes make you extremely uncomfortable. What to do? What to say? For so long she has just been a cute baby who looked a little different, but that is changing. People are already starting to look extra long before glancing quickly away.

All I want- is for you to look at Addison, swallow back your instant panic, see a person, and imagine her story. Imagine a mother who has spent years and years detailing out her love on a blog. Imagine her triumphs and the struggles. Her happiness and the sadness. Imagine how hard she works on mundane tasks, and imagine what a kind word from you would mean to her.

Imagine her story. Smile. Say Hi. Let her know how nice it was to meet her. Completely ignore the fact that you are an apple and she is an orange because you know. You know how extremely valuable oranges are and therefore should be treated with respect and kindness. Continue the conversation as long as you can. Say goodbye. Continue on your way. 

Chances are- I will be in the shadows somewhere near. Smiling. Ready to step in if Addison needs to be reigned back or answer any questions you might have. One thing you can count on- I will be loving the dignity that you are offering her. Dignity through a simple, sincere, "Hello" and smile.

And thank you. Thank you in advance.