No Words

The first few days after we learned about Charlotte's sick heart, I spent hours on end sitting in front of the computer trying to learn as much as I could about her diagnosis and what it meant for our family. While I got lots of information from pediatric heart websites and medical journals, the most helpful resources I found were CHD blogs. Reading the experiences of other heart families helped prepare me for this crazy journey more than anything else could have. They helped prepare me for the ups and downs of surgery and recovery, feeding difficulties, home oxygen, and the improtance of being my childs biggest advocate. These families are technically strangers to me, but I feel like I "know" them all. I cheer for their successes, cry for their setbacks and grieve for their losses. They are my heart family...my inspiration.

One of the blogs that I have followed for over a year now chronicles the heart journey of a precious little boy named Bowen and his family. Bowen was born with a sick heart like Charlotte's, only the left side of his was underdeveloped as opposed to Charlotte's right side. Bowen's dad happens to be the Matt Hamit, lead singer of the Christian band Sanctus Real. Let me tell you, he has a way with words. I get excited when I see a new posting on their blog because I know that in addition to a health update it will have "substance." Its guaranteed good stuff. (www.bowensheart.com)

Back in October Matt entered a post revolving around the question "What should I say when I look into the eyes of parents who are leaving the hospital empty handed?" It was a moving post for me then, and even more so now that we find ourselves on the other side of things. We aren't the ones struggling to find comforting words, but rather the recipients of many I'm so sorrys, You are in our prayers, and unfortunatley one lady who compared the loss of our daughter to her having to put her dog down. Yes, you heard me. But I get it. Words are hard to come by. Everyone wants so badly to make this better for us...to take away the pain...and there are simply no words. I'm living it and I still couldn't tell you what is right or appropriate in a situation like this.

As Matt concluded in his post...

"I don’t think there is any good answer for what to say to someone after they’ve experienced a tragic loss. I think the answer lies in what you’ve said and how you loved leading up to these moments, before tragedy comes. Love and speak now as you would wish to love and speak in the midst of loss. When that time comes, your past will speak through your presence, and being there will be enough."

I want you to read that bold part again....

"Love and speak now as you would wish to love and speak in the midst of loss. When that time comes, your past will speak through your presence, and being there will be enough."

Wow...what a profound response to such a seemingly impossible question! I remember tears running down my face as I read this line for the first time almost 9 months ago. I didn't know first hand then, but I can tell you now just how true this is. I want to thank all of you for simply "being" there for us...whether it is through hugs, listening ears, to offer a Kleenex when the tears won't stop, praying for us, feeding us, or any sort of distraction you may provide. In a time where there are no words, you have surrounded us with love.

Prayer Request

My cousin and her family were on their way back from a vacation in California when they made an unexpected detour to a hospital in Minneapolis. Turns out that little Luke has a ruptured appendix and a pretty nasty infection. Here is Erin's latest update...

"The surgeon just updated us...they removed 22cc of pus from the abscess in his tummy...he will have a drain tube releasing the infection for 3-14 days...antibiotics for 6 weeks then they will remove his appendix in Omaha once he is fully clear of infection. Thanks for the prayers...please keep them coming!"

Please keep the Alber's family and all of those involved in Luke's care in your prayers!

As for us...we're heading back to Omaha for the weekend. College World Series game for Matt tonight and a pee-wee tournament for me! I think that mine will be just as fun!

"Fix You"

Many of you may have read the comments section of my post yesterday and saw mention of the song "Fix You." I heard this song for the first time, ironically, just a few days before our world was turned upside down...which is strange, because the CD was released in 2005. I immediately came home, downloaded it and played it for Matt. I loved it.

Here is where everyone takes a quick break to download the song, YouTube it, whatever tickles your fancy. Then come back and listen to the song while you read the lyrics below. I promise you, its good.

"Fix You" by Coldplay

When you try your best, but you don't succeed

When you get what you want, but not what you need

When you feel so tired, but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone, but it goes to waste

Could it be worse?

Lights will guide you home

And ignite your bones

And I will try to fix you

And high up above or down below

When you're too in love to let it go

But if you never try you'll never know

Just what you're worth

Lights will guide you home

And ignite your bones

And I will try to fix you

Tears stream down on your face

When you lose something you cannot replace

Tears stream down on your face

And I...

Tears stream down on your face

I promise you I will learn from my mistakes

Tears stream down on your face

And I...

Lights will guide you home

And ignite your bones

And I will try to fix you.

When we were contemplating music for Charlotte's service there was no doubt in my mind that I wanted this to be played. Only now, the meaning of the song had been transformed. I initially thought of it as Matt and I doing whatever it took on God's green Earth to help "fix" her sick little heart, but my husband so incredibly pointed out something different...

Maybe it was Charlotte who was sent here to fix US. Maybe God saw that we took things for granted. Maybe he needed to teach us to open our hearts and to love despite fear...not to hold anything back even if it meant that our own hearts would break in the end. And now that we do find ourselves in this dark place, it serves as reassurance that there is hope. God will guide us home. Our bones will eventually know happiness again.

One day we will be reunited with our little Charlotte and at that time we will again be whole...or rather...FIXED.

The Straw That Broke the Mommy's Back

Today was the perfect example of my new roller coaster lifestyle. Fine one minute, crippled the next.

Its hard.

Its scary.

Its confusing.

Its exhausting.

Its our reality.

Today I felt like I was having a relatively "good" day. When I say "good" I mean that it definitely could have been worse. I made it through day #2 back at work (which at this point consists of me camping out in my office with the door closed) and actually felt like I had a little energy. Like I said...it was a relatively "good" day.

"Good" scares me. Its like the "good" convinces me to let my guard down, even just for moments at a time, and leaves me vulnerable and unsuspecting of what might be coming my direction. Thats exactly what happened to me today. I let my guard down. I smiled. I laughed. I had happy conversations with Charlotte rather than ones filled with hurt. Then I came home and checked my email. Yup, you heard it. My EMAIL. Who would have guessed that an email could totally shake my "good" day. Waiting for me ever so patiently in our inbox this afternoon was the drafted template of Charlotte's headstone. I didn't even have the email opened and my eyes were already filled with tears and I cracked.

THIS ISN'T FAIR. NO PARENT SHOULD HAVE TO PICK OUT A HEADSTONE FOR THEIR 1 YEAR OLD CHILD. NO PARENT! NOT ME. NOT YOU. NO ONE. And while I know that God has a plan for our little girl, I can't help but be angry. Why did this have to be the plan? Why did he let us love her for a year and then just take her away from us? Why did he have to take her so suddenly, without warning after all of the other crap we had to put her through? Why, why. WHY!? After the whys came the "what ifs..." and after the what ifs there were just tears.

That email opened up a whole new world of grief that I think I had been protected from up until now. For 3 weeks I have been walking around still in a state of shock. Now the shock is starting to wear off. The world has continued to spin around us and I feel like we are expected to pick up where we left off...only the most important part is missing. In reality I know that no one expects anything, and if they do, well, too bad.

This isn't just going to go away. Its never going to be easy. This is our new normal and while we may learn to live our lives according to it, we will never be the same. There will always be something missing. There will always be a roller coaster stretched out in front of us.

Ten Things

Charley Bear,

Today is a hard day. Its Father's Day, and I wish with all of my heart that you were here to help me spoil your Daddy. I know that he is sad...it hurts so much. I wrote him a letter today and made sure to tell him all of the things that we talked about last night. I told him how much you love him and miss him. I told him how proud you are of him each and every day. I even remembered to tell him that you are sooooo thankful for the love that he gave (and continues to give) to you. I believe that it takes someone very special to be a Daddy to an angel, and just because you aren't physically with us today, I know that you have been lingering close.

Father's Day 2010

Your Daddy is a pretty incredible man, Charlotte. I wish that you would have had longer with us to learn all of the cool things about him. I want to tell you so many things but I will limit it to....

"Ten Things You Should Know About Your Daddy"

1. He is sooooooo competitive and likes to be good at everything he does. You might remember the silly trophy in our garage...you know...the "Supreme Master of the Universe" trophy? Your Daddy won that playing silly yard games with his friends and Uncle Tom. He was so happy that you would have thought he won the Super Bowl!

2. He is a picky eater just like you! I like to describe him as a "meat and potatoes" guy. I have gotten him to try more foods (spaghetti, chili) but we still have to be pretty basic around here.

3. He is very "crafty" (sorry for outing you, Matt!). He made 3 of the mirrors in our house and painted lots of the pictures. He worked very hard on the animal paintings in your room and they turned out so cute! Daddy always thought that you would grow up to be a painter (or a scientist!)

4. Shhh....don't tell him I told you this....your Daddy snores. He'll deny it, but between me and you, its the truth!

5. 95% of the time your Daddy empties the dishwasher because he knows that I hate to do it.

6. You're Daddy would have been the one to teach you how to ride a bike. I never learned how when I was a little girl so he taught be when I was 24! It was quite the workout for him, but he stuck with it and eventually I was riding! (We'll skip the part about the broken elbow 2 weeks later...ending my future as a professional cyclist).

7. He is my rock. Your Daddy takes such good care of me and has been there for me through some very hard times. He helped me stay positive when I was scared before you were born. He reassured me and kept me calm when you were sick or having surgery. He holds me tight and wipes away my tears now when the pain seems unbearable.

8. He loves his family and would do anything for them. We are so lucky to have him in our lives.

9. He told me that his favorite part of the day was coming home after work and seeing you. Most times you and I would be playing on the living room floor when he got home. As soon as you heard him come through the door you were craning your neck to search for Daddy. Oh Charley, my favorite smiles were the ones that you gave when you saw him come into the room. Your smile was HUGE. Your eyes sparkled and your arm instantly reached out for him. No wonder that was his favorite part of the day!

10. He loves you more than I could ever begin to explain, or even fully understand myself. I know that you felt that love when you were here with us, and it just continues to grow stronger each and every day.

May 2011

So these are just a few things...I will try to remember to share more from time to time. I know that you are always watching over your Daddy, especially today. I will be sure to give him more SUPER DUPER Charley hugs and tell him how much you love him a few more times before this Father's Day is through. Make sure that you do the same to Papa Paul. Let him know how much Mommy loves and misses him. I bet that the two of you are getting into lots of trouble together!

Love and lots of kisses,

Mommy

Day By Day

In the past few days I've learned a number of things....

1) Matt and I have a lot of junk. With all of our new "free time" we've been going through closets and cleaning house a little (anything to keep our minds active). Who knew that the top shelf of a closet could accumulate so much in 4 years? I had forgotten that most of it existed! I like the feeling of "purging" old things. Lets just say that Goodwill scored big today.

2) Charlotte is everywhere in this house. I can't open a cupboard, fold a load of laundry, sit in the backyard, or watch TV among other things without something there to remind me of her. I'm not complaining...I'm so grateful for those memories...but they still feel bittersweet.

3) No matter how many times I get into my car to go somewhere, I can't break the habit of looking in my rearview mirror to check on Charlotte in the back seat. Matt took the car seat out to make room for all of our back and forth trips to Omaha. I'm glad he did because I probably would have left it there forever.

4) I'm not ready to go to Target on a weekday afternoon. I stopped in to pick up a few things that I had seen in their ad, and was quickly reminded that weekday afternoons are when every stay at home mom under the sun goes to Target. I couldn't get out of there fast enough.

5) A good day doesn't necessarily translate into a good night. Really. No matter how "good" of a day I have, I can't seem to carry it over to nighttime. Every night I would check on Charlotte before heading to bed myself. Most nights I would find her like this...

I would get her snuggled back in, give some extra kisses and tell her I loved her.

Now I walk up the stairs and see her nursery empty. My heart races and I just want to break.

6) I'm at a total loss as to how I'm supposed to go back to work. For those of you that don't know, I work in a building that is attached to the hospital where we lost Charlotte. I have to drive past the hospital to get to work each and every day. I've been doing detours around Sioux Falls to avoid that place. Today I was within about 10 blocks, and despite having the AC blowing directly at my face, I felt like I was suffocating. It was awful. AWFUL.

I know that we are headed down a bumpy road full of many ups and downs. I just wish that we could fast forward to a time where life starts to make sense again. I'm sure that day will come...I pray that day will come.

The First of Many Lonely 14ths

This is the day that I was supposed to be writing a "HAPPY 13 MONTHS" message and posting pictures of Charley Bear sitting in her green polk-a-dot chair.

I almost forgot...or maybe I wanted to forget to make it easier on myself.

I have posted a message on the 14th of each month for the past 13 months. I am going to try my best to continue...but instead of talking about the here and now I will use these posts as a way to chronicle memories and stories that I haven't shared before...memories that I fear will fade if I don't commit them to text.

Here goes nothing...

Two days before Charlotte earned her wings we had an indoor beach party. We were unpacking some of her birthday gifts and ended up setting up her new water table....complete with water...in our living room! It was something that seemed so ridiculous at the time, but today I am forever grateful for that memory and the huge smile that she got on her face. Short little Charlotte was standing on her tippy toes to reach the water and would "feed" it to me. Such a silly little lady!

In addition to the water table, she also tried on her new ladybug swim suit. I couldn't quit giggling. I have a picture on my phone of her standing against the ottoman doing her best super model pose. I mean, really, how stinkin' cute is she?!

Charlotte didn't really get to have a full out summer experience. Last year she was a teeny tiny baby and spent her days recovering from open heart surgery. We spent our outdoor time tucked safely under the shade of a tree in our yard. This year her days were cut short before the weather really allowed for much fun in the sun. I looked forward to filling up a little pool for her and watching her splash around.

It may not have been the typical summer afternoon in the sun, but I'm so thankful that we had our little beach party that night. SO SO SO THANKFUL.