Eyes to See Wonder...

This post has been running around in my head for some time now. It's not only something that is close to my heart, but something I consider so utterly important for so many families and children. Something important to everyone. 

A while before having Adalyn, my lovely sister-in-law recommended the book "Wonder" by R.J. Palacio. It was a book that brought tears of joy, inspiration, and at times....sadness. (Side note...if you haven't read it, run to your local library or buy it here. If you're not a reader, no problem. There is a children's book of it that's amazing! Buy it here )

A simple overview....it's the story of a young boy with significant facial malformations (hate that word....I'm going to call them extraordinary features). It's his journey of taking a courageous step and starting public school....the cruel bullies....genuine souls....and self worth he discovers in the process.

Little could I ever grasp at the time how significant that story would be in my life. 

Flash forward to our time with our own Wonder.....welcoming Adalyn into our world.

As I looked into her little face for the first time, I saw none of the malformations the doctors had forewarned us about. I saw my perfectly beautiful little girl. I saw her brave soul...her perfect face, toes, fingers and sweet lips. Throughout our time with her, my eyes were continually opened to how beautiful and loving she was.

So often in the time that she has now been gone, I find myself pondering what life would be like with her here. My mind plays out two scenarios. The first, she's completely healthy, happy and growing....discovering her world each day. The second, she still has all of her health problems...and we continue to soak up the good we have with her. How would that be? In either case, we would remind her each day how special she is...how  wonderful.... But how would others be? Would children be kind? Would they point, stare and mock....blind to what I could see? Would parents rush their kids by and tell them to look away? Would she know her features don't take away from her beauty....rather...they add to it?

Or would she, like August  in "Wonder," be afraid of the cruel way people respond?

These days when I see a parent of a child with any type of special needs or illness...my heart floods with countless emotions...

In my mind....I can see the way they make their child feel loved. I see the sleepless, tear-filled nights they spend wondering what their child's future holds. I see their fight for their child's life...to make beautiful memories regardless of circumstance. I see the drain of countless doctor's appointments and hospital stays. I see the tired eyes when people point, stare...and rush by. The ache of wishing someone would just treat them like a real person....and say hello to them and their child. I see how brave they are for even leaving the house.

Most of all.... I see their child. I see how brave and strong their souls are. I see how they have fought for this life. I see the joy they bring, even amidst trial. I see they could have a Doctorate degree in teaching love and kindness. I see the depth to life they have given to all those who surround them.

So often in today's society, I think we are too quick to pass judgement and condemnation without even attempting to understand. We are far too quick to be cruel...and push out kindness..

Though this was brought to my mind originally because of special children....I soon realized that it's a problem that seeps into every aspect of our lives....raging like a unrestrained wildfire...

Today, if someone has a different opinion then our own, they are horrible. If someone likes Donald Trump, they are stupid and uneducated. If someone likes Hilary Clinton, they are a naive rock hugger. If someone is vegan, they are a crazy hippie. If someone eats burgers and steak.....they support animal cruelty and hate the environment. If someone is from the Middle East, they must be a terrorist. If someone has a tattoo.. they must be a hoodlum. If someone dresses nicely....they must be a snob. If someone is a stay at home mom, they lack goals and dreams. If someone is a cop, they must be a racist or quick to kill.... This list could go on and on...

It's like a poison that has affected everyone... it breeds mental illness, depression, self doubt, anger and feelings of inadequacy...Feeling like one needs to constantly defends one's purpose.

How did we get here??? When was it that we stopped respecting each other, as people, regardless of differing opinions? When did "trolling" even become a thing? When someone disagrees with us, when did it become the norm to belittle and put them down....shoving our opinions down their throat until they agree in defeat?

In the children's book "We're All Wonders" by R.J Palacio I think she states the remedy...

"Far far away, the Earth looks so small. I can't see any people, but I know they're there. Billions of people. People of all different colors. People who walk and talk differently. People who look different, like me!

The Earth is big enough for all kinds of people. I know I can't change the way I look, but maybe, just maybe, people can change the way they see. If they do, they'll see that I'm a wonder! And they'll see they'e wonders, too!"

Each and every person wants to be loved and valued. Each person has a story. A journey. A wonder within their soul..

So maybe, instead of rushing your child past another with special needs, whispering to them not to stare..walk up to them. Smile. Teach your child that life isn't about seeing differences...It's about seeing wonder. 

Next time you want to belittle someone for having a differing opinion...open your eyes to actually see that person. See that you can share your different opinion without being cruel. Seek respect. Seek to find the good. 

Anytime we lump any one group of people as "terrible," "stupid," "ugly," or "worthless," we slowly lose our empathy and compassion for each other. And that, my friends, is something this life so desperately needs. This world has enough violence, injustice, and negativity without us adding to it. 

As R.J. Palacio's children's book concludes she states "Look through kindness and you will always find wonder." 

There are so many incredible, beautiful wonders in this world. So much good waiting to be seen. 

Each and every day, I feel grateful and humbled that our sweet Adalyn helped open my eyes to wonder..It took a perfectly pure little girl who radiated love to show me that physical issues and trials we may face cannot take away the beauty, strength, and wonder of the soul.

Because of her...and so many other wonders we have met in this life, I will strive my hardest to teach her bright little brother to have eyes to see wonder in all things. After all, it's something that already shines in his big, blue eyes.

Because of You

Happy Birthday my sweet Adalyn Grace!

How is it possible that you are 2 already?

Every part of me sure wishes that we could have spent the day watching you run around and play...getting messy cake and ice cream finger prints over everything you touched. What I would give to see your dark hair, bright blue eyes and smiling face!

We didn't want to spend the day being sad.. Though, I'll be honest here...I did shed a number of tears. Instead, we had a party to celebrate you. To celebrate the day you came into our world....and all of the ways you have changed our lives. The day you were born was incredibly special. That day, I saw firsthand that miracles are real.

I wanted to let you know a few of the many beautiful gifts that came into our lives because of you.

Because of you:

• I learned what it felt like to become a mother.
• I learned to pray hard....desperately, sincerely, frustratingly..and eventually....humbly.
• I felt what the scripture "Perfect love casteth out fear" meant. The moment you were born and I heard that perfect cry, my fears went right out the door.  I was absolutely encompassed in love. Love for your Daddy. Love for God. Most of all...love for you.
• I learned that the purest strength lies in the heart of babies like you.
• I realized that physical disabilites cannot restrain the ability of the spirit to love...Goodness how your love was so strong!
• I was taught to focus on the moment I was in. I clung to moments of feeling your softness in my arms....To lavender scented baths...walks in the park...and your sleepy sighs. 
• I learned to fight for the ones you love the most, even when all seems to be against you. 
• I learned it was possible to feel depths of love that words could never fully describe. 

I realized that hope isn't just a passive belief, it becomes a rod that one holds to desperately.

Giving you back into the arms of angels is the absolute hardest thing my heart has ever endured.... Even so Adalyn, I would never take back one second of our time with  you. I could go on forever on all of the ways your beautiful life has changed me.

Because of you, I have been changed for the better. I like to hope that I am a better mother for Camon because of you.

So until we can celebrate with you....

Happy Birthday my darling! You are the bravest, most graceful, loving and noble soul that I have ever known. How lucky I feel to have held heaven in my arms!

I hope that today you felt how much and how deeply you are loved.

I continue to see you in every soft sunset. Every warm breeze. Every simple, quiet moment. Every stare into Camon's big blue eyes. I miss you Addie baby, so very very much.

 XO,

Mommy

We had a fairy party for you sweet babe, I like to think you and your angel friends stopped by!

Camon sure had fun celebrating too!

But his fist is still 

We sent off balloons and sang you Happy Birthday! You are so loved! 

365.

That's how many days we've been without you my darling. You were called back to heaven early on a Friday morning. I honestly never thought we would survive a whole year without you. I felt our hearts would stop...or somehow the world would end...that there would be no way time could continue without you. 

Absolutely every part of my soul yearns for you. I ache to feel the touch of your sweet, soft fingers. I ache to smell you..to feel you in my arms...to simply run my fingers through your hair. I ache to shower you with love.

You've continued to teach me so much in these days without you here physically.

Even as angels were calling you home, you're heart was the strongest I have ever seen. Holding you as you slipped back into heaven was so sacred....yet completely devastated and shattered my heart. I wasn't ready to let go. Even now...I'm still not.

Thank you for making me a mommy. Thank you for being a light in countless lives. Your purpose was and is far greater then we could ever fathom.  Thank you for making me better. Thank you for showing with your entire life that miracles are real. You are pure goodness, Adalyn Grace....A soul that bright and loving is a testament to me that God is real. That He is merciful, present and loving.

Thank you for giving your beautiful heart to Daddy and I. Your love is the most beautiful thing I have ever held. 

This was the last picture I ever took of you....in the early hours of the morning before you slipped back into heaven. Oh baby girl....you gave us so much love. 

I'm at a loss of words today my darling, so...here are two songs. The first is is the words to "Homeward Bound," a song we we sang so frequently to you. Little did we realize how fitting the words would become for your life. The second is your song, Addie baby....and encompasses so much of our feelings for you.

In the quiet misty morning

When the moon has gone to bed, 

When the sparrows stop their singing

And the sky is clear and red, 

When the summer's ceased its gleaming 

When the corn is past its prime, 

When adventure's lost its meaning -

 I'll be homeward bound in time 

Bind me not to the pasture 

Chain me not to the plow 

Set me free to find my calling

 And I'll return to you somehow

If you find it's me you're missing

If you're hoping I'll return, 

To your thoughts I'll soon be listening,

And in the road I'll stop and turn

Then the wind will set me racing

 As my journey nears its end

 And the path I'll be retracing 

When I'm homeward bound again

Bind me not to the pasture 

Chain me not to the plow 

Set me free to find my calling 

And I'll return to you somehow 

I look forward to the day we get to come home to you too. The day you return to our arms once again. I hope you know how deeply you are loved by Daddy and I . You are written on every single part of our hearts.

We miss you so much baby girl!

Stay ever close, 

XO

Mommy

Coming Home.

During our stay in the PICU...we realized soon that Adalyn wasn't going to get better. I still wasn't ready to accept that though. Countless times I prayed....Telling God exactly what I wanted. Exactly what we need. Begging....bargaining.... and pleading for things to be different. For results to come back better...

Yet over and over....David and I got the same answer.  It was time for us to let our brave, perfect little girl go home. 

Making the decision to remove Adalyn's breathing tube was the absolute hardest of my life. To know that we would only have a short time left would instantly throw me into a panic. Even today, I struggle to think of that.

After removing the tube, Adalyn never again had a seizure. It was our miracle. Her entire countenance radiated wisdom...comfort...and peace. She was tired, yet her eyes were so calm. She even "talked" in those days after removing her tube.

First time holding her after the tube was removed...best feeling! 

We had a big meeting, with absolutely everyone involved in her care. Best case scenario, with each treatment option we could try....it would maybe buy us another month. As much as we wanted to keep her with us, we couldn't put her through what we knew was only a chance at more time.

Some of the physical angels we were surrounded by helped arrange for us to be flown home.

November 10th, we finally came back home. 

There are no words to describe how I felt leaving some of our family...both mine and David's sister...knowing that would be the last time they got to shower her in kisses.

Her life-flight nurses dressed her perfectly. She looked so cozy and beautiful. My eyes could hardly leave her perfect face the entire flight home. Almost as if my heart was trying to etch each and every detail of her into my memory. 

As soon as we were settled in that night... it was clear how much Adalyn had wanted to be home too.

That night was the last perfectly calm night we would have. I won't go into detail, because it's too close to my heart.... But that night was one of the most sacred of my life. The capacity of love that filled that room was beyond anything I had ever felt. I know angels were present....and the prayers from so many were comforting us...

The days that followed...we spent every single second next to our sweet girl.

As I have reflected on that day... so many thoughts have come to mind. I wanted to hope that this November would, in some ways this year, be much more calm...and give my heart a chance to find the pieces of itself again.

Oh how I miss this..

Yet, this past weekend has once more set David and I into a tailspin. 

On Saturday, David's defibrillator (much like a pacemaker) started beeping every few hours. Most people might not know the feeling of their body randomly making beeping noises...or sounding like an English ambulance...but David sure does. We wanted to hope it was just his device malfunctioning and sending off a false alarm.

As it would turn out...one of the leads going from the device into his heart has shattered. Meaning, David needs immediate surgery to replace it. 

When we heard the news....I wanted to say, "You're kidding me, right?" How is it possible to so frequently have such horrible timing... When we found out we were pregnant earlier this year...one of my fears was something going wrong with David around the same time we were having a baby again. I told myself I was being irrational....and shell shocked from the past year. Yet here we are.

The complicated part is that David already has too many excess wires in his heart from old leads. They generally don't remove old leads because of the risk it poses. However....they can't fit a new lead in...unless they remove an old lead.

The risk with removing a lead is that it can puncture a hole in the heart wall. Having a hole in your heart is not a good thing... 

The lead they need to replace is one David rarely needs....but essentially...it is his life saving lead. If anything goes wrong, like heart going way too fast, it's the lead that delivers a shock to his heart to get him back into a normal rhythm. Imagine the paddles you see in medical shows....that's what his device does.

In the mean time...David gets to wear this fashionable "Life Vest" It monitors his heart....and can deliver a shock if needed. 

You can tell he really loves it. 

So, this week, on the 17th...David goes in for surgery.. Not because his heart itself is having problems..His heart is doing great. It is just the device/leads inside. His doctor set us up with one of the best lead extraction surgeons in the nation. If all goes well, the surgery will be several hours...and we'll get to come home after a couple days. Worst case scenario... if a hole is punctured, they do emergency open heart to fix the hole.

And....our little boy is set to arrive on the 27th. 

Needless to say....there have been many tears shed in the Brown house these past few days. It's hard to not understand. Hard to feel like the rain clouds are so constant.

I have no doubt Adalyn gets so much of her amazing courage and strength from her brave Daddy. They are the two most incredible souls I have ever known.  I feel beyond lucky I get to call them mine....but feeling so helpless to fixing things is debilitating at times.

I wish I could say I have some sort of insight... All I know for sure....is that some days are hard. Really hard. 

Some months are hard. Really hard. 

So....this week...I find myself begging, bargaining... and pleading once more. Mostly just trying to remind myself to trust in Someone greater. We are praying that all goes so smoothly with David's surgery. Praying that we feel Adalyn so very close. And praying that our growing little boy stays inside for as long as possible.

Imperfection.

When we were discharged from the NICU with Adalyn last May, we were given a POLST form....and asked to spend time together thinking about it. If you know what a POLST form is, your stomach is already cringing at the thought... It is a form that no parent should ever have to think about for their child..

It stands for Physician's Order for Life-Sustaining Treatment. It is given to those with often terminal conditions....as a type of Advanced Directive....to help first responders, doctors and nurses all know your wishes.

I love seeing all of those perfect arm rolls!

Once we were home, I took that form and ripped it up. I didn't even want to think about it. At that time, we kept Adalyn at a "full code" meaning, we wanted to do all we could to keep her. We were going to fight for her....every step of the way. 

At this time last year, we were at Primary Children's once more for appointments....when that form was once more placed in front of us. Adalyn's condition was getting worse....her seizures were becoming life-threatening at the rate they were progressing. The medicines she was on and had gone through...weren't working. Her little lungs, for some reason that confounded everyone....continued to decline.

Once more...we said we would think about it. In my mind....I wanted to push out the thought completely. How could I ever sign that?? I couldn't even let myself go there. I wasn't done fighting.

Little did we know, our time with our sweet girl was already ticking down. And within a month and a half....we would have to re-visit this form.... The time was coming when we would realize our fight for Adalyn needed to be different...

As October and November draw near....I want to hide. To somehow run backwards fast enough to stop these months from coming. 

Those months were beautiful....sacred...and so very tender. Yet...they were also incredibly hard, devastating....and heart breaking

I'm scared of re-living those days. Scared of the year mark that will come in November. 

As I have thought about all our emotions...I have had a few thoughts. I think, all too often, there is a stereo-type among us. A feeling that we all need to put on our happy faces....that we shouldn't admit to have a hard time....to being vulnerable...to having faults..or to being afraid. When we do...others often feel the need to "fix you" to make you happy and perfect once more.

Throughout this past year.....and in thinking of the days to come....I think more and more of all the imperfections I have. I fall apart quite frequently. I'm anxious. I'm often scared. Some moments trigger PTSD from events of last year. I feel the breaks in my heart. I feel unsure of myself...and the person in the mirror seems so foreign to me. At times I feel lost...and my yearning to hold Adalyn once more...to breathe in her sweet smell feels overpowering.

There are no words to take those feelings away. No sudden change that will take away that grief....or change what we went through.

And honestly....I wouldn't want anyone to.

Conference weekend last October will forever hold one of my favorite views! 

Adalyn's entire life.....and even in the months since she has been gone....I have felt the greatest depths of gratitude. I have felt greater empathy for those around me. I have found the beauty in the small and simple. I see the more clearly the good. I have loved intensely. I sit in the shower at times...and stare at my growing belly and see what a true miracle this little life already is...

The days we are walking through have been the darkest I have ever walked...yet I have been acutely aware of the beautiful lights we have been sent. Acutely aware of the prayers on our behalf. Acutely aware of the incredible people we have in our lives.

I say these things because I think there is something beautiful about imperfection....and it shouldn't be shameful.

I think to have true joy, we will have a fullness of sorrow. A fullness of grief. A fullness of pain.... Because experiencing those things, shows us the absolute miracle of light. It shows the comfort in friends and family...Most of all...it shows us the power of love. Joy doesn't mean we never experience dark days. I think it's rather the opposite. It means we've walked through the dark days... and we've received our scars. The pain of those days doesn't disappear. Instead, it is all apart of who we have become...but the love we've gained through those dark days is far greater, deeper and more beautiful than before. Maybe joy is knowing and trusting that there will come a day when God heals our hearts perfectly. 

I think I now understand what it means to "Mourn with those that mourn"  It isn't about trying to say words to take away another's pain. It isn't about "fixing" anyone. It's simply being present. Holding a hand. Crying with them. Reminding them that they are loved.

It's admitting that some things we face are absolutely, undeniably hard.... Admitting it's okay to have a hard time. It's okay.. (as the amazing author Brene Brown would say)...To have the courage to be vulnerable.

I am completely imperfect.  I miss Adalyn more than my words could ever convey. I question myself so very often...wondering if she knew in each and every moment how much she was wanted....and deeply loved. I still pray for strength to get through each day.

I'm not implying that our imperfections should rule and control our lives. Nor do I want to stay feeling the way I do forever. I want to be better. For Adalyn...for David...and for our growing little boy...but I'm trying to remind myself to be patient with where I am now...

Maybe sometimes....imperfect is exactly what we need to be. 

I think maybe....it is those very imperfections that help us to find God...to feel Him near. To feel His hands of comfort holding our tender hearts.  

To you my sweet Addie Grace....goodness how the days feel so long without you! As fall creeps in..so do the fears on my heart I had last year at this time. The fear of losing you still haunts me...even as we are slowly coming up on the year mark of you being gone.

I've had so many moments where I've felt you so powerfully...almost as if I could close my eyes and feel you in my arms...Yet I'm realizing that it's like trying to hold the rays of the sun....or grasp the breeze...I simply can't...as much as I want to in every way.  I have to just let myself soak up the feeling of your closeness....Knowing you are never far.  Trusting in the day I will get to hold you again. I imagine you spending time with your little brother....I'm certain he loves you so much! Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts.

Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts. 

I am ever grateful for your beautiful life and light my darling. We have so many projects in the works for both you and your brother...I'm hoping they all come together soon! Please stay extra close to us as these next two months come. I need you so very much.

I love you Adalyn, always and completely.

XOXO
Mom