New Normal

I've been reading "A Color of His Own" by Leo Lionni all week with my kids. It's a part of a loose, fun, free Kindergarten literature-based curriculum from 1+1+1=1 blog. The story is about a chameleon who changes color with his environment. All he wants is a color of his own. In  his attempt to stay the same color he stays on a leaf, but soon changes color as the leaf changes color with the seasons. He is disappointed, but he finds a friend just like him and he accepts that they will change colors together.


With our latest news from the cardiologist regarding Iris, I long for time to stand still. I want our circumstances to stop changing. I long and pray fervently for Iris's heart to miraculously heal and her condition to stop worsening.


In short, her left ventricle is enlarging due to the regurgitation (backflow of blood) through her aortic valve. It is enlarging the left ventricle and compromising the function of her heart. If it worsens by our next visit in 6 weeks we will be scheduling surgery. Our cardiologist is predicting this is what will happen. Our hearts are heavy.


I've started noticing alarming changes in her. I can no longer ignore her ill health, but am faced with it all day long as I care for her. Last week I attempted to put her on a predictable eating/sleeping schedule like most babies. It didn't work. She tires easily and breathes heavier while eating. It breaks my heart. So she needs to eat on her own time, on demand. It's unpredictable and inconvenient, but it's what is best for her.


We've also noticed her arms and legs turn grayish/blue in the heat. A sign her heart isn't circulating blood well through her body. The heat dilates the blood vessels, making it hard for her heart to pump blood throughout her body. So we stay indoors unless it's much cooler outside.




Signs of congestive heart failure. I am hit in the face with the reality of our situation all day long. There is no ignoring it anymore.


I grieve these changes that signal her little body failing. It breaks my heart and I long for "normal."


Like a chameleon that changes with the environment, I am forced to change with our circumstances to meet Iris's needs and keep her healthy.


I am learning ways to cope and adapt to our new normal and to prepare for the months ahead.


I've taken up running as a way to beat my prayers into the pavement with each step and blasting out to songs that free my soul.


I'm enjoying cooking up new recipes since we are home and indoors most of the time. Flipping through cook books and challenging myself to cook new, interesting foods. Food nourishes our bodies and brings us together as a family. It is healing.


I've converted my closet into my prayer room. A place to bawl my eyes and bear my soul. With my worries scribbled on post-it notes and slapped onto the walls. It's not pretty, but it's a necessary place to lay my burdens before the Lord. Burdens I was never intended to carry on my own. Too many and too much for me to bear.


We are figuring out how to live indoors. Letting my kids rip up the house on their scooters and allowing my active 2 year old to jump on the couch to meet his energy needs. So if you drop by don't be shocked when you see how I let them run a bit wild.


I'm crying over almost anything. Crying mostly at the good points of our day. Just overwhelmed in a good way with the blessings we do have. Like a picture my 4 year old drew me or something funny my 2 year old said. It all means so much more to me right now and just strikes a cord in my heart. I know so much is coming our way and I just want to enjoy this moment, today.


GRACE has to abound if our marriage is going to survive this season. We are processing through a crazy roller coaster of emotions that range from anger to sadness to fear to peace to joy at any given time. I know when I'm having a "bad" day and often ask for grace from Clay cause I know the tiniest thing may send me over the edge. The struggle for peace is real. Fear can hit me like a ton of bricks out of left field. It's debilitating and can try to swallow me whole. Clinging to God's Word and truth at these times is the only thing that keeps me afloat. It's amazing how scripture comes alive when you are desperate and weak. And grace to let us each process and respond to this in our own ways.


I love what our pastor once said, "Jesus didn't skip through the Garden of Gethsemane." No, He sweated blood and anguished over what God had called Him to. He prayed for the "cup to be taken from Him." We are not Jesus about to be hung on a cross, to bear the weight of the sin of the world, but the pain is real with what we are walking through. We anguish over what God has called us to. We plead for this burden to be taken from us and for complete healing for our baby.


We are adjusting and coping with our new normal. Adapting like chameleons to the circumstances around us the best we can. Trusting God is there to catch us as we fall and carry us through this time.