Just stopping in to say hi! Spring break is officially over and the big kids headed back to school this morning. Our weekend was semi-madness celebrating Amon’s 5th birthday…more on that later…and Everett heading back to the doctor Sunday and then onto the ER for about a 7 hour stay. We had to go to the cardiologist yesterday morning and then last night they actually called and pushed back his procedure he was suppose to have tomorrow. We are all bummed, but understand it is for his safety. Dude has a funky cough and had everyone alarmed and anesthesia does not want to put him to sleep when he’s not at his best. Now we just have to get rid of this funk so we can finally get down to business.
Right now I simply struggle with the unknown. I am not a worrier, but I am a planner. It is killing me to not know what is going to happen and how we are going to go about repairing his heart. We knew his heart was special. We knew his heart was complicated. We knew his heart was in major need of repair. I honestly thought it would be a hard road, but at least there would be some sort of path to follow. Amon’s heart had a clear path, Everett’s does not. What we’re learning is that sometimes there’s just not a path yet.
We’re all working on our patience and trusting God to make a way when a path is not clear. We’re trying to move through each day with intentionality. When I lay my head next to Shuai’s in his bed I look into those almond eyes and breath him in deep. I cry a lot, but so much of those tears are of gratitude to our God who writes the most beautiful and mind blowing stories. We’re taking it day-by-day and trying to just do the next right thing. We’re comforting a grieving little boy who doesn’t feel his best. He has started reverting back to some of his coping/grieving ways we saw when we first met him…not eating…we’re wondering if man can live on yogurt and chips alone 🙂 … running his hands under the water, sleeping a lot and attachment to his sippy cup. This time around though he wants to be held all the time. He is learning we are here for him and he’s coming to us for comfort instead of moving through his sadness solo and for that we are incredibly grateful.
So now we wait and trust and try and let go and look for all the joy. God remains His good self and we’re tying to rest right there. Thank you again for all the prayers and encouragement. I’ve said it a 1000 times and I’ll probably say it a 1000 more, but we are so crazy grateful!!!!