Giving All of Our Hearts to this Wonderful Three Year Old!

It's hard to believe we just celebrated Addy's 3rd birthday. We had a great turnout and Addy had a blast. It was Doc McStuffins themed and she got to share the spotlight with me for my graduation from NP school. Everything these days is Doc McStuffins- oh the irony, I'm fairly sure our little medical miracle is going to become a doctor at the rate she's going!

I am so thankful for every birthday, occasion, and day that we never thought Addy would experience. Every year this occasion seems to get me to thinking about the things that we were told and how we felt before we welcomed Addy into this world. So many of them were not positive. So much has changed in the last 3 years. We still have those crummy days where I just want to sit down and cry (and I might). But for the most part, the good now outnumber the bad.

Grandma didn't do too bad on decorating the cake, poor ole Doc is a little sideways!

Happy Birthday to Addy, hoping all her birthday wishes come true!

It took a little help from behind but we finally got those candles blown out!

This girl is not going to skip on the cake, it's the only reason she showed up!

 I remember wishing that Addy didn't have to be born. Let me clarify- Never at any moment did I regret our pregnancy or consider any alternatives. I was so terrified of the chain of events that would certainly or probably happen after her birth. I just wanted to keep her in my belly forever, safe, never have to face the inevitable of reality. Maybe if she stayed in, the doctors would have been wrong. I didn't trust God's will, only that I wanted MY WILL to be done- and that was to have a healthy baby.

Now I look at Addy and sometimes for a few minutes or even hours, I forget the reality that she is living with half a heart. For most of the time, she is a perfectly normal 3 year old. She runs and jumps like a daredevil, talks back and says "no" to everything I tell her to do, and becomes overly emotional when she hasn't had a nap or got up too early. In fact, most of the time it's the "normal" 3 year old behaviors that remind me that she's not normal, and that we'll never forget that. It's innocent behaviors or things that are a normal part of our routine that probably would not be considered your every day events to most people.

- She plays doctor and her knowledge of real-life medical procedures is just way too advanced for a 3 year old- right down to putting the tourniquet on for a blood draw,
- She falls down a few steps (after being told to stay off of them) and my heart jumps as we do the quick run-through of where she hit and how much she is going to bleed before she clots.
- As we get dressed to go to town she asks where we are going and if she is still done with her blood draw for today
- I drop her off at church daycare to play with her friends and remind the volunteers that she is wearing a medic alert bracelet and she is on Coumadin.
- She gets a little out of breath when running and I briefly evaluate her respiratory rate, work of breathing, and whether she recovers or becomes cyanotic- all without ever saying anything to her or stopping her from playing like any child with a whole heart.
- She starts to plug a finger into a light socket next to where she sits on the counter while I fix her hair and I have a mini panic attack as I think of how a specially wired heart would react to a little "short circuit" that I'm sure most of us experienced at least once as a child (I know I did!)

We pulled out the walker for her baby cousin, but Addy thought it made a perfect car for her!

Her first big girl bike, Lord help us all!

Addy playing Doc with her brand new doctor outfit and friend!

Miley looks surprisingly calm about getting a shot from Addy!

 These are the little moments that we live with as heart parents. Although the big bad Fontan that we dreaded for over a year is now through, the uncertainties of the future never go away. I was brought to tears a few weeks ago as my husband told me of a single ventricle survivor that he met recently who was working as a nurse. She is in her 20's with no signs of heart failure or any of the other long term complications that make up Fontan parent's nightmares. Had he not mentioned Addy's heart which prompted her to share her secret, he would have never known that he was looking at a fully grown version of Addy's heart. I remember when we requested "hospital friendly" baby gifts because we didn't know if we would ever take her home. It gave me chills as I was reminded that we really do not know what the future will hold, but I really believe the possibilities are unlimited and optimistic.

Within the last year, we recently have found a spiritual home at World Outreach Church. Although I suppose I always "believed" in God, I was really more of a bystander Christian. I will admit that I never really understood when people became emotional as they thanked God for opportunities or accomplishments, or how they could really feel like God had a plan by them having painful events in life. I didn't really believe that all things happen for a reason, more than events were random and unrelated to anything spiritual. 

Sometimes in the last year, something changed. As I listened to Pastor Allen's sermons every week, an awakening started taking place. I found myself on the verge of tears as I sat in amazement at how the scripture related to our lives. I really began to believe, and the pieces began falling into place. As I listened to sermons about overcoming anxiety and worry, I found it easier to do when I really realized that what I feared the most of the future was not a bad thing.

My fear was that we would lose Addy too soon for our earthly standards. This changed when the revelations came along that God's will be done- and it already is. In fact, God's work was evident long before Addy was ever born, or even conceived.
- After I graduated nursing school, I was drawn to pediatric hearts. Although the hospital I was at initially didn't have a dedicated unit, I jumped at the chance 3 years later when they opened one to follow that path, giving up the comfort zone of the unit I was at to learn a totally new and scary specialty.
- I cared for a patient with CHD whose family would later go on to become some of our best friends and some of our biggest supporters when we were diagnosed with Addy
- Heath had been an adult ICU nurse for years, then came to pediatrics. When we were traveling, he initially hated working in pediatric CVICU, but then decided that when we moved to Nashville he really did love them and that he was being called to work there. We were both working in the unit where our child would be cared for when we received our diagnosis. 
- The dear friend who threw my baby shower and supported us the most the first year would later go on to have her own child with CHD, linking us as sisters for life as I helped her cope with the diagnosis and aftermath of emotions.

God's will is that she was chosen to have this heart and we were chosen to be her parents. Addy has had her own unique experiences that no other child will have in the exact same way, some easier and some harder, that will shape her into the woman she will become. Our preparation began long before Addy was born and so many of our interactions were in preparation for the future. Death is only temporary and marks the end of an earthly journey, but her glorious and eternal spiritual journey will just be beginning. Once I finally believe this, I stopped fearing tomorrow. Yes, sometimes I hurt inside when I watch my child endure painful procedures like the weekly blood draws requiring multiple sticks. But then, we are given the blessing of watching her blow out her birthday candles. My daughter's heart is just as God intended and our earthly comprehension cannot even begin to understand His reasons, but in Him I trust.

One piece of cake wasn't enough, sneaking some more after everyone left!

The first time I heard Matt Hammitt sing "All of Me" about his own journey as a HLHS parent, I wept. He put it into words so much better than I ever could have.

 Afraid to love, Something that could break
Could I move on, If you were torn away?
And I'm so close to what I can't control, I can't give you half my heart
And pray He makes you whole

(Chorus)
You're gonna have all of me, You're gonna have all of me
'Cause you're worth every falling tear, You're worth facing any fear
You're gonna know all my love, Even if it's not enough
Enough to mend our broken hearts, But giving you all of me is where I'll start

I won't let sadness steal you from my arms, I won't let pain keep you from my heart
I'll trade the fear of all that I could lose, For every moment I share with you

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me