A real conversation in my house before we went to sleep:
“Babe, I’m really struggling… This week was really tough having to cancel the surgery. I feel like a failure in so many ways that I can’t keep Jack healthy despite my best efforts… He is so fragile. Then I was wondering if I was to live in the days of Jesus and heard that he was healing people in florida – would I take the trek and walk there…. to bring Jack for healing? Do I believe enough?”
“Hmm. that’s weird because I was praying today as I was digging a trench for new sewer line…for the old sewer pipe to be short so it would be less work and money… but then realized that God is in control over every atom in this world, and if he wanted to… he could even change the material of the sewer pipe…”
And somehow, my faith was restored.
I called Boston last Monday to let them know he had a cold. They hemmed and hawed for a bit and we all agreed that if Jack was back to his baseline on Friday we would move forward with the surgery. It was a tough call… he didn’t seem sick enough to cancel, neither did he seem well enough not to worry. Just like Jack – he was right in between.
Before the call on Monday I was really struggling. A part of me knew that surgery was going to be postponed. But I had worked so hard! I was frustrated that my efforts were for naught… and I felt bad that I just can’t seem to keep Jack healthy. I cant wait to see him start to thrive.. to start to grow and learn and develop…. but what if he doesn’t? What if he stays my sweet content baby boy? Would I love him any different if he never was able to do things by himself?
I felt like I was crumbling on Monday morning… that I had nothing left. I picked up my phone, swallowed my tears, and something remarkable happened…. I can’t explain it exactly… but I felt stronger. The thought came to mind, “This must be grace. And not a second too soon…” The next 24 hours was back and forth with Boston. Tuesday morning Jack woke up with a fever and his cough sounded worse. Another strange answer to prayer – something definitive. Now I knew Jack wasn’t going to be strong enough to endure an 8 hour surgery. Clarity is a beautiful thing isn’t it? God is a God of clarity. He knows exactly what He is doing, when He is going to do it… To us it’s chaos, but not to him. And for that I worship him. Flat out – worship. He doesn’t do things the way I wish he would… but thats why he is God and I am not. Things are better this way.
So, for the foreseen future, Jack will continue to have his 6 fingers, three on each hand.
He is starting to tolerate food in his mouth! This is a huge victory! Which was much appreciated during a time of so many set backs. At least it was… until my speech therapist informed me that though it is good that he is tolerating the food, he still is not demonstrating the oral motor skills to chew. See, he doesn’t take food off a spoon at all. We’re trying to get creative 🙂 Feel free to pray with us concerning this.
Every day is an adventure isn’t it? Everywhere I look is a project that needs to be completed… laundry, insurance calls, bills, dishes, crafts, therapy…. I am often tempted to sway to the right or left of all the loose ends… either get super focused on the task and ignore the moment… or throw in the towel for the day.
Then I hear my mom’s voice in my head…. “keep your garden small”
Tend the task at hand… help the kid that needs it the most at that moment. Which then makes me think of 1 Thessalonians 5:
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
Life is full of loose ends… And I sure have a lot now – especially needing to reschedule everything we missed last week… Let’s encourage each other as we seek to honor God in our loose ends.
What’s going on with Jack (schedule wise)
> Surgery will be rescheduled to either December or January for his hands/feet
> We are scheduling a MRI locally to assess the ventrical size in his brain to see if the surgery corrected his hyrdrocephalus or if we will need to do a shunt.
> Jack is still not better, so if he has a fever today after his nap I will bring him the pediatrician’s office.
(Which by the way, I desperately need to give a big shout out to my Doctor and the staff at Southwest pediatrics! I would be absolutely lost without them and feel so overwhelmed with gratitude for the way they care for my family)