Reflecting back on my time in the hospital this time, it felt a lot different than last time. In May of 2010, the rug was pulled out from under me. We knew the baby had a possible terminal diagnosis but truly didn't expect to hear that he had 1-6 months probably to live. Also, at the time we had only had him 6 weeks and we were still getting to know him.
This time was different. We have had him for 10 months. We already know the presumed diagnosis. But we also know that he is defying all odds. He is progressing, not regressing. He is confounding the wise. He is making doctors use the word "Miracle" often.
So it hit me pretty hard the day we found out his stomach, liver, lungs, heart, bladder, kidneys, etc were all showing signs of organ failure. It was a huge blow because he seemed like he was doing better. Now this. Seems like a huge setback.
We know God well enough to know He likes a big story sometimes. And He loves to come in and rescue us at 11:59. This time was no different.
As the doctors were trying to stabilize him, I wondered how God would pull this one off.
Obviously you know the rest of the story. We got to bring him home Thursday.
But I got home and as I was unpacking the dirty laundry, trying to sort out the new feeding schedule and new meds that are round the clock. I was also sorting my feelings and thoughts. (Something I didn't dare let myself do while in the hospital.)
And it hit me.
I'm tired of being completely aware that he is in the palm of God's hands. I mean I know we all are. We all take every very breath because God allows it. God knows the number of our days. But most of us aren't acutely aware of it every moment of every day.
I am for Manny.
I am thankful He has chosen to let Manny stay with us a bit longer. I am.
I am also exhausted knowing that at any minute, he could say, "It's time." Dan and I talk about living in two possibilities at the same time all the time. While we focus on and talk about and hope for LIFE. We're also aware (and try to push it to the deep recesses of our minds) that there is still a death sentence over this child.
I guess the best way to describe it is ... Manny is on a tightrope way up high. As he stays on the rope, God is in control, holding him steady. But he could teeter and fall and God will catch him. So either way, He's in God's hands. So what's the problem?
I know many people who don't know our history or our level of faith might be thinking that we just need more faith. To me, I think we have a LOT of faith ... afterall, we chose this baby on purpose, laid our faith on the line so to speak. I know that live or die, Manny is in the palm of God's hands. I know that no matter how long Manny gets to live on Earth, God is good, loving, faithful, etc.
So why not live in the hope that he will live? We do ... most of the time.
What takes me out of that?
3 names ... Becky, Kelly and David.
Those are 3 children of pastors. Godly, faithful families. Becky was 3 when God said "No" to the prayers and petitions and the prophecies that she would live. She had been sick most of her life.
Kelly was 18 when she God said "No" to letting her live on Earth. Every healing evangelist you can think of prayed for that little girl since she was tiny.
And David 31 when He went home to the Lord. He was a healthy soldier. The whole church was praying prayers of protection. His family said they never even CONSIDERED that he wouldn't come home alive. (Today would have been his 34th birthday.)
So while I can live in "Yes" and "Amen" and "Just believe" most of the time. And I truly do. There are times ...
like what? like when every organ was failing. when he retches (again) after they thought it was fixed. when he screams in pain. when he coughs so hard his heart rate goes over 200 and can't come down.
at times like those ... I am acutely aware that sometimes God says "No."
And while some of you will want to "fix me"... the truth is ... I don't know this is a bad place to be. I don't live here. I don't dwell here. It's just a place I visit. And while I'm here, I do some growing. I learn to lean and rely on God just a bit more. I trade just a little more of 'me' for 'Him'. Faith is stretched.
And pretty soon I'm out of that place and back on to the business of living. Of making each day count. Of learning how to utilize the gifts God has given me.
But never far from my conscious thought is the knowing that sometimes God says, "No."