As soon as I opened the door and maneuvered my stroller to push N through, a wave of nursing home smell hit me. You know the smell I’m talking about. It’s so strong and stale and inescapable when you are in the building. It’s typically associated with the ill and elderly though, not babies.
On Wednesday night we checked N into a state nursing facility for one night in attempt to get disability funding. I stayed with him. G met up with me later. G was originally planning to stay home with M but a friend talked me into letting M spend the night at her house so I didn’t need to do scary state institution by myself. I wasn’t scared like I thought I’d be, but I’m glad we were together.
When we first arrived a couple of the nurses came by, “I hear there’s a baby in here!” They went gaga over N. It was good for my soul. He brought light and life to that place simply through his presence. Right now no one sees his disability when they look at him, they see a sweet baby. I so often look at his diagnosis as a burden, but he lifts others’ spirits. I know he won’t be a baby forever and he may end up turning people away rather than drawing them in but gosh, wouldn’t it be amazing if he continued to offer that innocence and joy that he does now.
This is going to sound strange but it was a peaceful evening at that nursing facility. I believe the presence of God is with us wherever we go and I felt it strongly that night. N felt straight asleep in his Pack ‘N Play and I laid down to read in the dark while I waited for G to arrive. I was content to have time to rest and reflect on all the major big deal stuff we’ve been waiting on which is now in motion – feeding therapy, state funding, and surgery for N’s spine.
We have so much for which to be thankful. I’m completely humbled and amazed by the way God is providing the means for us to care for N. I knew He would, I just doubted that it would be so thoroughly and so early on. I’m thankful because I don’t need to check N into that place and leave him. Thirty or forty years ago doctors would have encouraged me to do so. Thankfully that was never an option for us.
My eye kept wandering to my toiletry bag. I haven’t unpacked it since we were rooming in at the NICU. The Neos told me N would likely be readmitted so I kept it at the ready. He wasn’t. Wednesday night was the first time I’ve had to use it.
We were discharged at midnight and drove back home to get more sleep. One year ago I would have never guessed I’d be spending the night in a state facility in order to get funding for my disabled son but we did it and it feels like a big accomplishment. Furthermore, I never would have guessed I would be as grateful as I am right now, but oh I am.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!