May 22, 2017

6 Months..

Happy 1/2 Birthday little buddy!


It has been amazing to watch you grow over the past 6 months. You just soak up everything you can each and every day.



After we love your sister, I wasn't sure we would ever have another baby. When I found out I was pregnant with you so soon after Adalyn returned to heaven, I was so shocked and afraid! What if we lost another baby? Could my heart survive that?


Now that time has passed, and we have been in our lives...I know that you are exactly what our broken hearts needed.
Shout out to our lovely friend Kara for the balloon!

You have brought such happiness with you in such a small body! Your laugh always melts my heart. You love to smile and giggle!

I love how you adore being outside. I love that when you get really excited, your arms and legs go wild. I love that you are my little best friend each day. I love your love of dance parties with Daddy and I. You think we are the funniest ever! (Just keep thinking that kiddo...) Your binkie has still has your heart, and you are getting more and more coordinated in putting it back in your mouth!



You are a mover. Constantly. Even in your sleep! I love hearing you jabber away in the mornings when you wake up. On the mornings when you wake up far too early....and I try to convince you to keep sleeping by pulling you on the bed with me, and closing my eyes...and you respond by smacking my face, and continuing to jabber...I secretly can't help but be so grateful you are mine. 



You are a lover of fruits. So so much. You tolerate veggies...but I have a feeling you are going to have my sweet tooth. You are still a champ at rolling only one way. You still have no interest of rolling from your tummy to your back.  Instead....you are attempting to crawl. So far, you successfully stick your bottom in the air and can get on your knees...which often results in face planting into the carpet.


Look at those leg rolls! Be still my heart...

Grandpa teaches all the best things..

You popped two teeth through this past week! Thank goodness! You were a rather grumpy grumpster there for a while.

Cute outfit courtesy of our dear friends the Grafs! Clovers..courtesy of Daddy

We adore you Camon. We love your expressive personality. Your long, luscious locks of hair. Your bright blue eyes...Most of all...we love your loving heart. We feel so lucky to have a link to heaven in you. A link that reminds us each day of the loving sister that you have. At times when you stare off and smile, I like to think she is close by, giving you a reason to smile!



6 months is a big deal buddy. Because of your sister, we count each "monthie" as a gift! When Adalyn turned 6 months, we threw her a little party. We thought you deserved the same! And though you can't have cake yet, we are going to give you the next best thing this evening...some pureed fruit!

I hope you always know how special you are. How loved you are.... And how you are always, always watched over by your angel sister. Thank you for giving us purpose again. Thank you for letting me realize that a broken heart is still capable of loving so very immensely. 

XO,

Mommy

P.S...I thought it fitting to include some pictures of your sister from this day 2 years ago...and some from her half birthday party! Goodness how we miss her!  I adore that she and Daddy have the same "Brown Frown"

I adore this picture so much. The famous Brown Frown!




























May 2, 2017

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! 



April 22, 2017

A Broken Hallelujah..

Our sweet Camon is 5 whole months old today.

He loves to move, and especially loves to jump in his jumper. I think he wishes he could just be crawling already. He loves to look at himself in the mirror (with his looks, of course he would!) He loves being outside and going on walks. His big blue eyes still soak up every little detail in his world.


He is enjoying eating solids these days...he loves carrots, green beans, bananas and apples. He refuses anything to do with sweet potatoes. He is still hooked on his binkie. Chomps on everything in site and could fill a small pond with his drool. He is a champion at rolling over onto his tummy, but still can't quite figure out how to roll back. He has so very much curly hair...with a mind of it's own  (I may never cut it)...He also has a newfound love of holding his left foot....



He is rather particular and strong willed. And though he still hasn't quite figured out the whole sleeping business, he has captured our hearts. He absolutely radiates joy. When he is happy, his entire face  lights up!


It has been a while since I have last written anything. It has been just over a month since David's last surgery. His surgery went really well. He is getting much better blood flow than he was before. His surgeons were thrilled, because no one has ever done a valve replacement on a heart quite like David's. He is feeling much better than he was at the beginning of this year. We are definitely hopeful that he will continue to feel better!
Just pondering the meaning of Dumbo..

That time around, he had to stay in the Cardiac ICU. Right next to the Pediatric ICU.. Walking in the waiting room....the sites, the sounds, the smells...transported me back in time. Part of me half expected to walk through the doors and find Adalyn there...

Sometimes it is amazing what the heart yearns for the mind to believe. In some ways, it was a hard, but needed reminder that she is no longer confined to such struggles. She dwells with the angels in a place far better.

In the weeks since, I've been rather reflective. Especially as the month of May draws closer....and we celebrate our sweet girl's 2nd birthday.

A line from the song "Hallelujah" has gone through my mind a long lately. To take it out of context... the line says "It's not a cry that you hear and night...and it's not somebody whose seen the light, it's a cold and broken Hallelujah"


Hallelujah, meaning, "praise ye the Lord"

Many days I still feel as if I'm walking on uneven ground, Many parts of my heart still feel so very broken. I have such a longing for our sweet babe. I have such fears from watching what both she and David have battled. I feel like the past couple years have been like going through the spin cycle of a washing machine....


Yet, as I watch Camon drift off to sleep.....or hear his giggle....or listen to David play with him, I thank God for giving me two of the most special babies. I feel so grateful to have the love of David, and for the countless miracles that have kept him here.

I feel so grateful for Adalyn's brave and beautiful soul that forever opened my heart to the deepest kind of love. I feel grateful for time...though in some ways I feel time holds me hostage....I am truly grateful for the time I get to spend watching Camon figure out his little world.

Oh the many faces of Camon!


Maybe the line from that song is right. Maybe Hallelujah isn't always the shout made when life is going well. Maybe it's not always a tender cry when a prayer is answered. Maybe it's more like a quiet whisper....uttered from a broken, devastated heart. A heart that has endured sorrow, tragedy or sorrow. 

A whisper, though shaky and unsteady, that still believes that there is light to be found when darkness seems to prevail. A whisper that is continuing to try, even when discouraged or disappointed or lost. A whisper that believes in and praises a God that is aware of those dark, tear-filled, and uncertain moments when faith seems too hard. A whisper that isn't quite a full shout yet...but still can be heard in the quiet.






















Maybe that "broken Hallelujah" is part of learning to live a life with both sorrow and joy. 

Though I still haven't quite figured out how to live with both sorrow and joy, and though I'm still rather prone to tear-filled nights, I am trying to cling to the light that I do have.

The light that comes from Camon. The light that David shines. The light I find from our sweet Adalyn.  The light that comes from our wonderful family and friends. 


To you my sweet Adalyn, goodness how I have been missing your softness lately. How are we already so close to celebrating your birthday already?? I'm trying to focus on being present in the moment I am in. To let myself feel, both the hard and the beautiful feelings I have. I've been too good at putting my heart on a numb setting for the past while. Spring time reminds me so very much of you...Spring, to me, is a reminder of your beautiful life, hope, warmth, and goodness. 

As I watch Camon sleep sometimes, I hope that he gets to dream of you my darling. He definitely is our little link to heaven. 

I love you Addie baby, always and forever.

XO,

Mommy

P.S. Sometimes when Daddy naps with Camon, it takes me right back to him napping with you!





March 5, 2017

Hoping for Someday.

I awoke to David's hand on my side, saying my name between short breaths. 

Immediately, I bolted up. 

I felt like I had been hit with a bat. My foggy brain was going a million miles an hour trying to process. In those few seconds, I somehow had a mental conversation with myself...which went something like this:

"Amanda....it's his heart. You know it's his heart. Be brave. Focus. Don't panic. You need to focus."

I asked David if I needed to call 911. He said yes. Again, I had to remind myself not to panic. The fact that David realized he needed an ambulance likely meant they needed to actually be called 10 minutes prior.

**Here is where you may need a little back story... Remember my last post? Well, David had been continuing to decline pretty rapidly with his heart health. Just doing day-to-day tasks were extremely exhausting for him. During his work week, it would take almost everything out of him. Thankfully, he has incredible co-workers who helped him a ton..

In just a month and a half, he had lost about 11 pounds..We had been hopeful for this surgery, because we knew it would help him. However, a few days before surgery, he had to be off some of his medicines. Medicine that helps his heart stay in a good rhythm...***
(He's cousins sure didn't mind helping babysit)

I grabbed my phone. 12:31 am.  With shaky fingers, I dialed 911.

His heart was going wayyy too fast. He was in a bad atrial arrhythmia. I kept one hand on his arm, and reached to feel his forehead. It was cold and clammy. I don't have the heart to write what it made my mind flashback to....

Cousin time with sweet little Corban

We were staying at a hotel in downtown Salt Lake with my sister. So thankfully, the paramedics got there within minutes.

By the time they got there, his heart was slowing down. They loaded him up on the stretcher,..and told me to follow behind the ambulance. They followed that up with.."If we turn on the sirens, don't panic, and don't try to keep up, It just means we need to get him there quicker."

Right. Don't panic. I repeated that to myself dozens of times that night. I replaced it with, "Breathe deep, don't think."

Shortly after they loaded him in the ambulance, his oxygen dropped. His heart started racing again... and he kept going in and out of ventricular tachycardia. (Meaning the bottom chambers of his heart weren't efficiently pumping blood to the body. Ventricular tachycardia is bad. It is even worse then atrial arrhythmia's..your body needs blood to survive) They flipped on the sirens, and away they went.

I grabbed my things, and whispered a good-bye to our sweet boy. As a tender mercy, he slept through the whole thing. My angel of a sister was there to watch him.

Once we were in the ER, David was stable. Everyone kept going back and forth of what part of the hospital he should go to. David's heart tends to make everyone nervous.... We ended up spending the rest of the night there in the ER before being transferred up to the floor before surgery.

Primary Children's has so many triggers for me.

The last time we had been in that emergency department...was when we had made the decision to bring Adalyn home. We had gone through there to load her up on the ambulance. I remember turning back to look at the elevators...seeing my sister standing there with tear filled eyes. Knowing it would be the last time she would see our sweet girl.


As I was reflecting on that memory...and watching David doze... a little girl was brought into the room next to us. The curtains were drawn...but I could still hear. She was brought in blue. Hearing the sound of the suction machine...and hearing the nurse say over and over...."We need you to breathe sweet girl. Give us a cry."

Phew...that one sure sent me for a whirl. Those words were far too real. I put my head in my arms....reminded myself once more to breathe. Not throw up. And not to cry. Crying would just give me a headache.

5 hours later, we were meeting with the 2 surgeons that were going to be doing his surgery... Shortly after, he was wheeled down to the operating room. I was able to follow him right until the doors of that room. I don't know how to describe that feeling of putting the one you love into someone else's hands... It never ever gets easier. 

The nurses and anesthesiologist joked with us...then after a quick hug and kiss.. (From David, not the nurses..)..And of course a handful of "I'll be okay's" The wait began.

As another tender mercy that day, I didn't panic. Worried...yes, immensely...but I didn't let myself  panic. I took the pager they gave me and went back to the hotel.. By then it was mid-morning...and I just wanted to snuggle Camon and tell him all about his brave Daddy.

They called to give us updates every couple hours. With the distraction of Camon, my sister, my nieces, my sweet in-laws and a couple of wonderful friends who stopped by...I was comforted.

Surgery lasted 7 1/2 hours for David...which meant he was incredibly nauseous and throwing up the remainder of the evening. But it had gone even better then they had predicted!

My wonderful in-laws were there. I'm convinced they have to have some of the strongest hearts for watching David go through so many surgeries over the years... As another tender mercy, David's brother spent the night with him in the hospital so I could spend the night with Camon.

Both of the surgeons and one of David's doctors came to talk with us at different times. They successfully were able to burn the area that has been causing David to go into the scary fast atrial arrhythmias and they were able to fix a hole in his top chambers.

They were shocked at how big the hole ended up being. It was 1.4 cm (I know that may seem small...but in your heart, that's a big deal). He was only getting 50% of the blood that his body needed. Which explained his rapid decline!

Since repairing that hole, David has felt so much better. He has had much more energy the before and had his appetite back.

During his surgery, one of his surgeons checked his valves. They found that he needs his pulmonary valve replaced, because it is causing too much blood to back flow. They will be replacing it in about  1 1/2 weeks from now. After repairing that valve, the hope is that he will feel even better and his heart will be at a good place.

Driving home that week, after David was discharged, so many thoughts flooded my mind. 

Sometimes, aspects of our lives seem like a such a cruel twist. Oddly enough, growing up...one of my greatest desires was to work at Primary Children's. In fact, I even spent a summer volunteering there. The families and sweet children inspired me so immensely. Little could I have processed how heavy their burdens likely were.

The past two years have been so very hard. In some ways, I feel like I've been in a constant state of holding my breath and biting my nails. Two years ago at this time, we were fervently praying for the life of our sweet girl. We knew the road we were walking down was going to be hard, but absolutely nothing could have prepared me for how difficult this road has been.


At times, the mountains placed before us have felt far too steep....and my legs too tired to attempt to keep walking. 

David describes the past two years as life ending. The day we buried our sweet babe, a large part of who we were ended. We are new people, in a sense, with different perceptions, hopes and desires. Our focus has changed, our thought process is different. Re-learning the new us is a slow process....

I guess we all have those moments. Moments, good or hard, that reshape you.... that change your very core...

My hopes for the moment? To make it over 5 months without a hospital stay. To go through a whole year without fearing of losing my husband or our little boy. I want David to know what it feels like to have a perfect heart.. I want to go on a sunny walk with my family, eat a picnic lunch....and watch Camon giggle.

I want Adalyn to be there too. I want to watch her run on the grass...and tickle her brother. I want to watch David chase both of them....and laugh to myself at the silliness of it all... and then give in and chase all three of them.

That's a day my heart longs for. In all of it's absolutely perfect simplicity. It's the hope of that day that reminds me to be brave on hard days.

Until then, I think I'll just keep working on taking deep breaths. 

To you, my sweet Adalyn, I know it has already passed, but I hope you had a wonderful Valentine's day, filled with the deepest love! We made you a card, and decorated your grave. I made Camon his first Valentine too...it didn't have a picture on it, but he seemed to sure like looking at it anyway! He is such a cute boy Addie baby. I'm sure you know that though. He is an absolute gift to our hearts. You know, one of the things I am the most thankful for with the past two years? I'm grateful to have loved and been loved in with such beautiful depth. You taught my heart how to love more fully... These days, even amidst all the whirl that surrounds us.....Daddy and I still find time to laugh...especially at Camon. We soak in the light we do have. Even on Camon's restless nights, it's a comfort to know that his cries are mostly because he has lost his binkie...and it has shaken his little world.

We took Camon out this week to help us re-decorate your grave for spring. I don't know if my mind will ever wrap around the whole cemetery concept. Instead I choose to focus on your spirit being with us always. Camon seem to enjoy the sunshine!

How lucky we feel to have been given the chance to hold the beautiful souls of you and your brother. Someday, we will have our perfect sunny day. I'll make sure to bring the ice cream.

I miss you fiercely Adalyn, each and every day. You are ever a light for us, my darling. 

XO,

Mommy