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.

Risks Worth Taking.

David and I have held onto a specific little secret for quite sometime. 

After losing Adalyn, we were certain we weren't going to have anymore children. Having Adalyn was the greatest gift in the world.....but watching her go through such hard things.....and having to say good-bye was something that I knew I couldn't bear to go through once more.

However, as it would be..... Adalyn must have had plans for another sibling. 

I am 22 weeks along, and we will be welcoming him into our lives this November! 

Becoming pregnant once again has been an emotional whirlwind in and of itself. The pieces of my fragile heart feel like they are barely held together. 

I have had so many fears....and it is still difficult for me to articulate those feelings into words. The news of a baby.... I have always felt is worthy of being shouted from rooftops. Babies are the most incredible miracles.

But how do you let your heart be excited....when it is so afraid of what could go wrong? When it is so afraid of worst case scenario...because...well....the worst case scenario happened? 

So it became our secret. With each ultrasound I have had....David has held my hand as we have cried through each one. Seeing this sweet little baby move...has made our hearts burst with gratitude, and long for our little Adalyn. Somehow, what may be a simple ultrasound to most.....is something that reminds us each and every time that miracles are real. That love is so powerful. Yet....the most vulnerable thing in the world.

As we anticipated the ultrasound that would tell us if our little boy had similar issues as Adalyn....or possible heart defects....I felt like a basket of emotions. We found out just over a week ago, that both his brain...and his little heart are looking perfect. I still don't have words for my gratitude!

Yet....my heart still has a whole other realm of emotions.

When we found out we were pregnant with Adalyn, with a sweet little girl....I couldn't wait to prepare for her sweet arrival! All too soon...we were told that the changes were slim of her surviving birth... So we never did the typical things to "prepare" for a baby. We never shopped for clothes. Picked out cribs. Decorated a nursery. We didn't know what to plan for. So instead, we put all our focus on praying for her each and every day.

I know that is a silly thing to confess..but I say that because my heart is still afraid to prepare for a baby. As if the moment I let myself....something will go wrong...

The other part of my heart still longs  for Adalyn. I think it always will. To long for her to be here as we prepare for her little brother. To see how loving she would be with him...to watch the two of them bounce around together is a site I long to see.

The thing is.....I could go on and on about the things that scare me. About all of my fears and worries...and thoughts that run across my mind... But I'm not going to do that.

Love is a risk. To love someone....to place a part of your heart and soul into their hands...is the greatest risk. It leaves you vulnerable and susceptible to heart break. 

Loving another person means there will be nights and days of worry. It means there will be tears. It means you will forever sacrifice all of yourself for someone else.

But is also means you will experience something that is far greater and more beautiful than anything the world can offer. Love is a piece of heaven....that you get to feel every day... It is being able to feel just a small piece of the presence of God I think. Loving David...and Adalyn has changed my world. Each and every day I am so grateful for them...for the person they have helped me to become. For the piece of their heart I carry with me.

So in the moments that my mind becomes crippled with my fears...I think of that.

Love is a risk, but it is worth taking every single time. Love is the squeeze of David's hand in mine, reminding me we can do this. Love is the light in Adalyn's smile. And love is what we feel for our little boy.

July 20th. The day I finally caught a picture of that brilliant smile.

And I wouldn't change any of those things for the world. Without love, life loses it's beauty. It's vibrancy..  Love is the good that is intertwined in all the little moments in our lives. Adalyn's entire life will forever be a testament to that truth. Her love is  one of the most beautiful things I have ever held.

We know that pregnancy....and bringing this little boy into our world will be emotionally hard.  But we also have felt so strongly of the love that Adalyn has for her little brother. I know she is going to be so very close to us.....and I look forward to seeing all of the ways that she is there for her sweet little brother.

As always, my sweet girl. I'll end with a note to you. Each time I feel your brother move, I feel so blessed...it is like a constant reminder of what a miracle life is. It also makes me so grateful that I was able to feel those same things with you. I promise that Daddy and I will learn to open our hearts completely again. We will be certain to give your little brother all of the love we have! I have no doubt that he is pretty special, he is your brother after all. My thoughts are with you always my darling. We love you so very much!

With Pioneer day tomorrow, I felt it very fitting to share this picture from last Pioneer day. Cutest little Pioneer I've ever seen!

Circumstances.

Last week, I went to Walmart to get diapers.

As I stood in the aisle... surrounded by countless baby items...a million different emotions flooded my mind. David and I handle our emotions much better then we did back in May. Day to day...we see so much good. In that moment though....my mind raced over the past year.

When we first found out we were pregnant.... I had to resit the urge to buy every cute baby thing I saw. We had decided to wait to begin getting things for our bay until we found out the gender...besides....we would be living in Missouri for 3 months, and we didn't need lots extra things to move.

I couldn't wait. I was so excited. I had so many ideas of how I wanted to decorate a nursery. Things I wanted to make....Books I wanted to read....etc. However....just a week after we found out we were having a girl....we began finding all of the problems we would be facing....and so began our journey. We were told numerous times that the chances were slim of our baby surviving long after birth. In the end....we only ended up buying a car seat, a diaper bag, a few outfits, and some other basics. In fact, when we brought Adalyn home....she slept in a cute bouncer that my amazing boss had given us for a few nights until we bought a bassinet.

So cute!

As I stood in that aisle....surrounded by so many odds and ends of baby items...my heart once again felt such an ache. Foods.....crib mattress covers....high chairs.....baby monitors...seats..activity gyms....bottles.. Who knew such silly items would make me have such a longing? In staring at all of these items...I thought of something that a stranger had said to me recently. In brief passing, we were talking about babies....(as she was carrying her baby). I had mentioned something about having a baby too..... She said a line that has rung in my head since....."Oh then you know how it is...just wait til they get older."

In my mind....all I could think is...No...I don't. I don't know how it is. I don't know about milky spit up. Rolling over. Having your baby grab at your hair...earrings...or glasses. I don't know how it is experimenting with different foods....or bottles. I don't know how it is simply put your baby in a bouncer and watch them play. I don't know what it is like to hear your baby giggle. Or begin to recognize faces... More than likely...we won't know what it is like to watch Adalyn get into everything... Dump flour over the floor...scatter toys everwhere... Or leave finger print smudges all over.

Snuggles from Uncle Hyram!

I do know about preparing to send your baby in to surgery. I do know about having to fill out an advanced directive for her in case things ever go wrong. I do know how to change a G-Tube like a pro. I do know how frustrating it is in dealing with medical supply companies. I do know a hatred for seizures and a fear of colds.. I do know how nerve wracking it is preparing medicine....knowing if you do it wrong, or mix doses.....you might just put your baby into a coma.... A lot of the normal things though? No....

But I want to. I long to. And the reality that we will never experience many of those things with her stings.

I recently read a quote from a book called "Strength Through Adversity" that a lovely woman in our ward gave to us....It was a quote from a Olympic coach, Kay Yow, who had developed cancer... She said,

"God didn't choose to change my circumstance. He chose to change me."

We have found a love for our carrier! Best thing ever. 

We have spent countless hours praying that circumstances would change for us....For Adalyn. And a lot of the time.....our circumstances haven't changed. A lot of the time, they have continued to worsen for her.

Even though our prayers haven't been answered in the way we have always hoped....we have seen so frequently the hand of a loving Father in our lives. We know He hears our prayers...each and every one. We know that He does have a purpose. No matter how much we are struggling...He knows and understands. His heart aches with ours. But if we can look around us, we see so many tender mercies reminding us that He is there.

God has given us something beautiful. He has given us this perfect angel to simply love. Her spirit is so strong. Her innocence is so pure. Love just oozes out of her little body. In loving her....He knew we would be changed...and so would the people around her. 

Lucky us..we got a great visit from the Anderson's!  Adalyn loves her new clothes!  

The thing is.... sometimes it hurts that our circumstances haven't changed...and I am tired.. I am certain that many of you facing your own struggles can relate. I am tired of watching my baby seize over and over....and over. I am tired for Adalyn...that between seizing and being excessively mucusy...she doesn't get much of a break. Excess mucus...means more suctioning. I am tired from having an endless plague of worries run through my mind on a hourly basis.

Sometimes...just like that day in standing in the aisle at Walmart....I feel that familiar wave of emotions crashing down. I think it is okay for me to grieve. It is a longing for all that I wanted for our baby girl. Hopes....dreams...things that may never happen in this life for her. Things that are hard to let go of.

In these moments....it doesn't feel like it will be okay. I feel frustrated. I hate....hate...hate seizures. I would never wish them upon anyone.

I feel panicked. I don't want to do this...to watch her struggle day to day. I want to run away and pretend it isn't real.

No parent should ever have to watch their child struggle so much.

Yet....we do. Each and every day.

I often wish there were a simple solution. A switch. A magic potion maybe. Or even a fast forward button so I can see how the ending turns out. However, those are all merely wishes. When I finally stopped wishing for all the ways things would be different....and hoping for the day that I would wake up and our circumstances would be perfect....I realized that this time in our lives does have an incredible purpose. The change has been in us. And we continue to try and make that change for the better. I can see how much I have changed and grown in this past year. Because of one sweet, beautiful girl I am learning things about myself that I never knew I had. 

One of my absolute favorite pictures! Alert moments are rare!

That I am strong....and I can do hard things. That I am not alone.That if my baby can face each day...so can I.  Most of all...that I am loved....and I can love.

Our circumstances don't always change as quickly as we want. God doesn't always intend for it to. And sometimes, we simply won't know why. He asks us to trust Him. To allow Him to use our circumstances for greater purposes. The most inspiring people I know have all gone through overwhelmingly dark days....and yet.....they held on.

So much cuteness in one picture. My two favorite people!

Late last night, my sister called me....I found myself laughing so hard as we sent each other links back and forth of absurd clothing styles. As I got off the phone, I realized how blessed I am. There was a time while in the NICU that I wondered if we would ever truly laugh again. After that conversation I realized I have been laughing again. And so is David....his full fledged giggle/laugh....which I love.

Our circumstances and who we are is not set in concrete. Circumstances come and go. We change. We become.
What we become is our choice. 

Romans 8:37-39 
37....In all these things we are more than conquerors through him that loved us. 
38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

We were meant to be conquerors my friends. Not merely sufferers of circumstance.

I am learning this every day. And trust me..some days...I am not so good at this. My greatest days are the ones where I choose to see the good...in turn....the good changes me. Adalyn has taught me that love....especially God's love....is enough. That love is more than enough for me to face each day.

We have been on the receiving end of so much good. I cannot express enough how humbling it is to receive letters of encouragement....to receive such thoughtful gifts....to have so many people praying for us. Your acts of love have not gone unnoticed. They strengthen us in more ways than we can say. Some days...they are the tender mercies that keep us going.

This past week, we started a new medicine. For the first four days, it seemed to be helping better than anything else so far! Her seizure frequency was cut in half.....and her spasms were much less mild and she wouldn't jerk for very long. Unfortunately, they have come back again. Along with some new twitches. The hard part is that it seems the only thing that can stop her from seizing is sedation...and even then some still break through. Seriously....if you could all only see what she goes through on a daily basis...you would be amazed at what a trooper she is! And more fully understand why she inspires us to try a little harder. This medicine has also made her rather mucusy...which has meant a lot of suctioning. We will probably keep trying with this medicine for a few more weeks....adjusting the dosage. The tricky thing is higher dosage equals rougher side effects. Though, the plans are already in the works to start the Ketogenic Diet next month....more will come on that later.

Now prepare for an overload of adorable pictures! Tis the Halloween season after all!

Note....she wasn't a fan of the texture of pumpkins. 

Did you catch those chunky legs? Ahh..

Oh how I adore those pillow top feet.

On a different note....we just want to first off say that we do absolutely love visitors! However....with cold season coming up...we do have to be so careful. A cold for Adalyn is not something to take lightly. Her health is fragile. So...in coming to visit us...please be sure to get your flu shots! And make sure you haven't had a cold in at least 2 weeks....even if it is only the sniffles. And don't take it personal in any way....but we carry hand sanitizer every where...and have a lot at our house too. If we ask you to sanitize, it isn't because we think you are dirty. I think sanitize and wash my hands so much that my hands are in this permanent state of being raw and dry! I need to work on that. Anyway...We mainly just want to be extra careful those germs don't pull a sneak attack on us!

Still Standing..

**Disclaimer...the first part of this post isn't written with the intent to make any feel sad....or feel sad for us! We truly are blessed. Writing tends to be the best way I process. With that...I include the good...the bad...and the in-between.**

The hardest question to answer as of late is "How are you guys and Adalyn doing?"

As soon as someone asks us that.....my mind goes over a hundred different thoughts.

Do we tell them how awful her spasms are now? How they make our stomach churn and our hearts hurt to see her little body contorted....face pained....and breaths coming out in gasps? Do we tell them that she seizes so frequently....that at times she has a seizure and a spasm at the same time and is jerked from one to another for several minutes?  Do we tell them how if we get 4 hours of sleep at night....the night was good? Do we tell them how she can't really sleep for more than an hour without having a seizure or spasm? Do I tell them how when it is my turn during the night....I literally rest with one eye open...staring at the monitor.. watching her heart rate...ears peeled listening for any stop in her breathing? Do we tell them how scary it is to face each week....wondering if things will continue to get worse for her? Do we tell them how frustrating it is to make decisions of medicines to put her on....knowing the harsh side effects? Do we tell them how hard it is...knowing that if we can't get these seizures and spasms under control....they will continue and progress and worsen until her little body physically can't take it anymore? Do we tell them that as much as we try to push these thoughts away.....we wonder if she will truly make it to her first birthday? Do we tell them how we can go from feeling pure joy and happiness.....to complete defeat in the same day? Do we tell them how hard it is watching her loose the abilities she has gained?

Like I said.....a hundred different thoughts.

So tired!

Instead of letting that dam of emotions spill out....I tell another truth....

She is growing. She is so adorable. She is incredibly strong....and faces all that she has on her plate with more grace than I could ever fathom to have. Even with having such frequent seizures and spasms.....she doesn't cry. Her eyes well up with tears at times....but she endures it.  She has enough love in her little fingers alone to lighten up a whole room of darkness and touch the hardest heart. She keeps us strong each day. She makes us laugh when we feel like crying. She gives more to us than we could possibly ever give back.

At times, being up with her in the middle of the night....have been some of the most spiritual moments of my life. 

Lately....I have been feeling a little bit like Peter in the New Testament. He and the other apostles were in a boat in the middle of a fierce storm. Stresses were high. They weren't certain if they would make it....when suddenly they looked out...and saw Christ standing on the water. Peter was immediately comforted. He knew everything was going to be okay. In his excitement....he left the boat to walk to his Savior. However....after a few steps... the howling wind and the waves around him filled his heart again with fear. He began to sink....crying out once more to Christ. Without missing a beat...Christ was there....to again pull him to safety. 

So many days I can see the hand of Christ in our lives. I am comforted. Yet...there are so many moments where I see the storm around us.,...I think of all that we face....all that Adalyn faces...and I feel myself beginning to drown. I loose sight. It takes daily effort to seek His hand. To find the comfort that we so need.

There is so much I don't understand.....sometimes I let my mind run wild with all the moments we might not have with her....will we ever hear her giggle? Hear her say mom and dad? Teach her all about princesses and superheros?

I have come to realize that those thoughts are a vicious cycle. It is pointless...and takes away from the here and now. We have both felt the importance of enjoying each moment...even the hard ones. 

I soak up each moment of holding our sweet girl. My heart feels with more love than I can ever describe when she lets out a long sigh while she sleeps. I can't help but smile like a kid on Christmas after giving Adalyn a massage and she is so relaxed and drooling as I rub her hairy little back. I laugh as she lets out the stinkiest toots you have ever smelt from a baby. It makes my day to hear her occasional little squeals....like she is trying to have a real conversation.

Seriously....so relaxed. How can you resist that hairy back! 

I realize more and more each day that this life is but a moment. A long, beautiful and hard moment. The moments in this life are fragile. They easily come and go. The amazing thing is that this life is only the beginning. The hard moments will not last forever. The good moments will become greater. All that is unfair about the here and now will one day be fair.

So until then....soak up each moment. Enjoy every smile. Don't be afraid of letting your tears out. The hard things you face will teach you greater levels of compassion then you can imagine. 

Tender moments! We are so grateful for their help....and being babysitters as we nap.

In taking care of Adalyn...I have truly felt that very thing. I have learned greater depths of love and compassion. Sometimes....I think I am giving every ounce of strength I have in making sure we are doing all we can.....I fail to see that I am getting so much more back. I now read stories or hear about others facing hard trials and my heart stretches for them in ways that it never did before. I find myself loving strangers so completely...and rooting for them in their own hard trenches. I find that my heart overflows with love for my husband and my family

So we keep going. We keep holding on. We keep believing. We keep loving. 

Adalyn has officially been off of steroids for a few days. We will wait another week before starting another. This new medicine that we may try has some pretty harsh side effects...one of them being vision loss. We continue to pray that she won't suffer the side effects of the medicines that she is on! Several different people have sent us links about Cannabis oil....we thank you for thinking about us! We want to try it.....however...it isn't FDA approved. Before we can try it....we have to try all of the medicines and treatments that are FDA approved before we can qualify for it.

Adalyn's activity gym that her vision therapist made for her

We can never thank you all enough for your continued prayers on our behalf!


We have an amazingly sweet friend that sent us a children's book....the following is taken from it. I have teared up so much in reading it... .To our sweet girl....you will be 4 whole months this week! This is exactly how we feel about you! Never in a million years would we trade away one second with you.

"Never before in story or rhyme (not even once upon a time) has the world ever known you, my friend, and it never will, not ever again..... Heaven blew every trumpet and played every horn.....on the wonderful, marvelous night you were born."
-One the Night You Were Born, Nancy Tillman