I feel like we're in a 12 round fight and we have just gotten through the 4th round and are sitting in the corner nursing our wounds from a pretty solid beating.
I can't pinpoint it, but joy was stolen this past week. Chaia is one! And yet there were a lot of sad tears this week.
We had our latest check up at the Cleveland Clinic. You all know us by now to know that we are putting our confidence in Christ, that He can work even this to His glory.
But for whatever reason the Clinic trip stole our joy. It started for me when Chaia hurled her whole 9:30 feed all over me during the first appointment. Then it escalated for both of us when Chaia screamed through an echo and then reached its tipping point when the doctor said that Chaia's heart isn't getting better and likely won't get better.
We feel a little beat up. Like every step we take forward is met with two steps back.
I asked if there was any sense in believing that some of the 11 meds she is on daily might be weaned in coming weeks and months. And that is not happening anytime in the next 12 months from the sounds of it. They added that we should be thinking toward transplant decisions, which we absolutely hate. How do you even begin to weigh out a decision that could put your child in and out the hospital for years, with countless drugs given daily? The question we continue to wrestle with is WHAT DOES IT MEAN TO BE A GOOD PARENT? Is it "fight for your kid at all costs and give them a shot at life even if the quality of that life might be very low, filled with suffering and pain"? Is it yielding control to the Lord and letting Him sort out life and death?
We believe God is healing our daughter's heart. But sometimes we need God to help our unbelief.
We share a lot about the joy we have experienced on this road with Chaia, but make no mistake, this road is also hard and sad as well.
So we need rest. We need recharged. And lucky for us we are heading to Destin, Florida for a week! This will be our first opportunity really to decompress since Chaia crashed last September. It is much needed
We need prayer...prayer for rest...for encouragement...for Chaia's care to lead us to gratitude rather than discouragement.
Will be blogging pretty sporadically over the next week or so, hoping for God to breathe life into weary bones.
We are excited for the beach...for Chaia's first plane ride...first ocean encounter...and first pictures in her baby bikini!
So...yeah...feeling beat up...but also feeling ready for resurrection.