2 years later. I’m so thankful for this journey. I have learned so much about so many medical issues. I have learned so much faith. HARD faith – but when is faith not hard? I have gained so much empathy for so many families, many I’ve met only BECAUSE of this journey. I have so…
To the mama at the earliest screening for the kid-friendly movie
I see you. And, probably, I get you. I figure you’re probably like me, torn between wanting to have nice family activities and fearing public meltdowns. Maybe you made the plans a few days ago, and maybe you even dreaded coming after solidifying the decision. But some sense of normalcy… the luxury of simply going to…
On purpose. With purpose.
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…