In one week Noelle has her open-heart surgery. I have moments of panic, moments of peace, moments of fear, moments of hope. The next 10,080 minutes will be the longest and shortest minutes I’ve ever experienced. My heart hurts for my little bug. Laying down my sweet baby girl’s life in the hands of surgeons is makes my stomach hurt to think about. I know God will guide the doctors and I know the statistics and I know the Truth of a loving and gracious God, but it doesn’t hurt any less.
There has been an overwhelming amount of support from friends, family and even complete strangers during this time. New friends have been made and old friends have come closer. This broken heart within our little joy will be healed and through her broken heart, it has brought people together. God’s ultimate plan is to bring glory to himself. I remember that this is not about me, but we get to play in this story of redemption, Noelle Joy (the birth of joy) gets to play a part, even now, as young as she is. She entered the world a mover and a shaker, what made me think she’d stop at birth. I only fear (in a good way) what is to come, she already has the name babyzilla.
We are hopeful, we are scared and we are excited to have this all behind us. For now, we will try to prepare and comfort Noelle the best we can for her “big hospital visit.” We even have her Halloween costume ready for the hospital in case she’s up for wearing it (that’s the day she should be getting out of ICU).
In a book I started reading this week I read, “It really is God’s grace that He doesn’t reveal the entirety of our futures all at once. If we knew what we’d have to face in the future, we’d all likely run the other way – like Jonah.” Eugene Cho, Overrated
Thank you to those of you that have participated in this story. We couldn’t be more grateful and humbled by your generosity and love.
Through some prayer and inner reflection as anxiety levels were rising within me last week I realized something, October 30, 1995 is when I came home to find that my mom had left. She chose a life with her abuser/drugs rather than me. When we scheduled Noelle’s surgery date there was a familiarity about the time of year, an uneasiness that I couldn’t explain. I assumed it was just that my daughter would have to have open-heart surgery. Little did I realize that it was 19 years ago that I lost my mom. I wrestled with the feelings of not wanting to lose something even more precious to me the same time I lost my mom.
Anxiety overwhelmed me as I let the lies of the Enemy absorb all the peace that had been surrounding me. Trying to recall the promises of God and all the reassurance He’s given me through this process felt unreachable in the moment. I’m reminded that each day the battle is real, it wages on. Noelle has even started having nightmares (three over the weekend). While her mind can’t understand the surgery, she is vulnerable. Praying over her, praying over us is the only way we are keeping our eyes above the waves. God’s promises are true. He is love.
As we check in at 5:30am on October 28th, I cannot imagine being in any other posture than on my knees as we wait for news of a successful surgery. Just as a scared 13 year old girl standing parent-less at a locked door had to learn, nothing can separate us from the love of God. I will be more than a conqueror and my little babyzilla will learn to fight and to trust.
Romans 8:37-39: “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
Through this little unplanned (my plans) gift, God has taught me to love so much deeper than I ever thought imaginable. I found it oddly comforting to be reading through the passage of Abraham being willing to sacrifice his promised son Isaac at the same time that we found out about Noelle’s heart surgery. The heart ache he must have felt, the confusion, the raw frustration. Yet he trusted God, and God provided. In the midst of wrestling with the surgery and the unknowns of life, I must remember to say that I choose Him today.
I was listening to one of my favorite songs on the way home the other day Oceans by Hillsong United and started weeping. This song has been my prayer since this album was released and now I am finding Him in the mystery. In the processing, in the hurt, in the confusion my soul will rest in His embrace. Some days it is more of a discipline than others. The days I wake up from nightmares of things gone wrong, the nights I lay in bed with tears filling my eyes, I have to choose to call upon His name. That is the only way to truly find rest.
“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine”
With so much unknown, there is so much to be grateful for, yet I am finding it hard to choose to be grateful every day. As the day draws near and more unknowns surface I cling tight to the promises of God, to the same promises that Abraham held tight to, knowing that my faith will be made stronger. I will squeeze our little babyzilla tight every day. We will run, we will dance and we will sing.
For more detail on her open-heart surgery you can go here:
As I process through the words “open-heart surgery” my first reaction, was to be paralyzed by fear. Just the night before her appointment I had written the following….
“The Lord God made garments of skin for Adam and his wife, and clothed them.” Gen. 3:21. After the fall, after the sin, after God’s original design was shattered, not only did he speak words of grace, but these words came across as so deeply loving. He definitely explains the punishment of actions, but then He made them clothing. I find this a deeply intimate display of affection. In the midst of explaining our consequences on a grand scale and the weight in which the decisions hold affecting all people for generations to come, he is personable. For God to sit with us in our sin and our shame and to help us heal and move forward. He protects us and His love is strong.
More than ever I am needing the peace of God, for him to just sit with me in my fear. We learned that my little “birth of joy” has an abnormal heart that needs some healing. She has a valve not functioning properly as well as a small hole at the top of her heart that needs to be patched. Right now the left side of her heart isn’t getting the blood it needs to grow. The valve issue is called “sinus venosus atrial septal defect” and the hole in her heart is” and the hole is called “partial anomalous pulmonary venous return” they said it was common for them to happen together. This requires open-heart surgery to fix.
Today I must remember to choose Him. I was encouraged today by our dear friend/father/mentor by this:
Trust in God for He has called you by name.
God created your inmost being; He knit you together in your mother’s womb. Praise Him because you are fearfully and wonderfully made; His works are wonderful, know that full well. Your frame was not hidden from Him when you were made in the secret place, when you were woven together in the depths of the earth. His eyes saw your unformed body; all the days ordained for you were written in His book before one of them came to be.”
We will praise Him in this storm and we strive to point toward Jesus and the healing love that He brings. What an opportunity for Noelle to continue to live her own narrative for all to see. We look forward to see how God is going to not only provide for us, but how He will overcome evil with good.
After 19 months of parenting there are a few things I’ve learned.
1) Don’t give your opinion if it’s not asked
2) Changing tables are over rated
3) She loves me, but doesn’t always like me
Parenting has it’s challenges. Whether it is dealing with judgmental other parents who feel that they’ve done it better or trying to finish grocery shopping with a screaming toddler. The truth is, I wouldn’t change anything for the world. She has been the best “surprise” of my life! I miss her being a baby and so snuggly, but each new phase/chapter brings it’s own joys that the previous was missing. Parenthood is hard, parenthood is good, and parenthood is worth it.
In a world of “mine” “no” “Get”(as she points for me to get out of her way), “move” I have to consciously decide what battles to fight. She’s developing her independence, her personality, exercising her free will. For every tantrum there are two or three dance parties. Although the tantrum can last for 30 seconds and the dancing can last for an hour, some days it’s hard to not focus on just the tantrum. Perspective checks are important, exercise and eating healthy is important. Getting her to participate in daily activities is important. She loves to help me bake, do I realize it will take me twice as long to clean up the mess, I do! However, the wonder in her eyes as she helps me mix ingredients waiting to see what it will become is worth the extra time.
I love my daughter.
The joy this little girl brings cannot be described. She is a pleasure, a delight and my love knows no ends for her. At 3 weeks she started sleeping through the night and at 3 months she is laughing, loves tummy time and cannot sit still (much like in the womb!). The more stimulation the better, which is great for our lifestyle. She doesn’t flinch when we take her to the high school youth group at church and we pass her around to every stranger that looks her way. She’s an all star in daycare although the youngest! We are in love and look forward to the adventures to come with this little pint sized gift!
Our little beauty.
- Her laughter fills the room.