I started writing this around 7:30 EST Sunday morning...
What a blessing this morning has been already! Have I mentioned it's before 8 AM?! :) When you're up pretty much almost all night, it's easy to find blessings so early.
Will is doing absolutely fantastic. He's eating like an absolute pro. They have removed his IV and NG tube and we're back to only basic monitoring of his vitals. I'm getting discharged shortly, but we have been given an amazing room down in the NICU where we'll begin taking care of him 100% of the time. It's like the best of both worlds. We get to be parents and sole caregivers, but we have amazingly talented and caring NICU staff watching over us to make sure things continue going well.
The room we'll be in is called a care by parent room. It's a bit like a suite. There are chairs that pull out into beds, a small refrigerator, a bathroom, etc. The ironic thing about this room that we're moving into is that it's the same room they showed us several months ago when we came on our tour of the hospital. At the time of the tour, they were preparing us for the worst. They talked about this room and described it as a place we could go to have private time with Will as a family before he passed away. So ever since Will's birth, I would walk by these rooms and have a sense of dread. I wondered what was going on behind the doors. I prayed that we wouldn't ever have to enter those doors.
Now, I sit here feeling a sense of "suite irony". The room I was so afraid of entering has now become a place of safe haven I can't wait to get into. I can't wait to get my whole family in there together and to have my little boy sleeping close to me. Praise God for this sweet, suite irony and the blessings He has given to us the past few days.
When I look at Will, I forget about his diagnosis. In fact, I'm bound and determined to forget about it. My little boy is here and he's perfect. We don't know what the future holds and frankly I don't care. This experience has taught me so many things, but perhaps this is one of the most important. Live in the moment. Do not think towards tomorrow. More importantly, God is in control and there's no point in stressing about words like "life expectancy" or "outlook". No one can predict the future for Will and thank God they cannot. I am leaving my sweet boy's life in His hands and that is the absolute perfect place for him to be. I find solace in that.
Finally, I just wanted to share a few more pictures of Will and a few words from an amazing friend. I so wish I could think and write as eloquently as she does and these words brought me to tears when I read them.