For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10 ESV “For when I am weak, then I am strong.” For when I am discouraged For when I am overwhelmed For when I am inadequate For when…
Kicking and screaming and emotional trucks
This morning, I woke up Gideon for school. If I have to wake up Gideon, he’s TIRED. He resisted, of course, and borrowed under his seventy-some-odd blankets that he insists on sleeping with. I dragged him out by his big feet. He struggled against me, seeking the darkness. I pulled on those ankles, those long…
Empathy and Awareness
I started a post yesterday. I’d had a conversation with an individual about Noah and a health concern to just keep an eye on. I left the conversation with the impression that this individual didn’t hear me, didn’t believe me, and didn’t understand me. I felt completely dismissed. It made me angry. Empathy, I thought.…
Hearing loss, not joy loss
After weeks, months even, of rejoicing in milestones and victories, I was reminded. After months of unneeded therapies (okay, not ALL the therapies), I remembered. Oh yeah. You have this syndrome. Not that I forgot, really. Just forgot that there were still things to rule out, stones to turn over. We know it’s a “mild”…
Better than a thousand elsewheres
“A single day in your courts is better than a thousand anywhere else! I would rather be a gatekeeper in the house of my God than live the good life in the homes of the wicked.” Psalms 84:10 NLT To be in your courts, in your presence is more fulfilling than anything else. Nothing else…
This Day
It’s hard to see You through the fog sometimes To let You in Feel Your joy But I know You carry me through every hour Help me lift my hands Through it all, I know You give me this day In all of Your grace God teach me to see Teach me to praise To…
Pharyngeal Flap Placement Surgery
Thought I would provide a little education /explanation of the surgery Noah had. It’s a little difficult to explain, but here I go! Noah has velopharyngeal dysfunction, which is common in people with 22q11.2 deletion syndrome. It means that his soft palate muscles (velum) and the muscles of the back of his throat (posterior pharyngeal…
Immanuel – God With Me
Christmas was prefaced with a surgery for our middle child. Our sweet Noah needed a surgery common to people with 22q11.2 deletion syndrome, called pharyngeal flap surgery. Not a life-threatening surgery, but definitely a life-disrupting surgery, as all surgeries are. Many prayers, plans, and provisions from God alone were laid down before we left for…
Radiator
It’s been a week. Actually, it’s been a couple of weeks. Draining weeks. We’ve been going. We’ve been planning. We’ve been fighting with insurance companies, doctor’s offices, hospitals. In the probably 16th day of the Battle with the Medical Bill, I walked out of my building. I feel empty, drained, deflated, flat. I just wanted…
“On this day…” / Hello 22q / Walking by faith thus far
So many titles I could give this post. I can’t believe that it was just one single year ago, 12 months ago that we received a diagnosis. It feels like this has always been there. Thinking back about all the appointments we’ve been to, they all kind of bleed together, not a lot of definition…