I am determined to look at this visit to New York as an adventure. So far it has been, and without even trying that hard.
We left Austin this morning at 6:00 am (read: we woke up at 3:00 am). It began to rain as we were about to take-off and apparently it was also rather windy, because our lift-off was incredibly shaky. It wasn’t long into the flight and I had to switch seats with my husband. I am notorious for getting motion sickness and that’s exactly what happened. Fortunately we are in this thing together, because I had no choice but to clock out as mom for the three and a half hour flight and stay with my head between my legs for the better part of the flight.
Nathan on the other hand giggled through all of the bumps and jolts. I was shocked that he handled it so well. He barely made a peep for the duration, and has in fact continued to prove to us just how flexible he can be in many new situations.
We arrived at the Ronald McDonald house right before lunch (Nathan had already eaten via his G-tube) and tried to settle him (and us) in for a long winter’s nap. After about an hour of fits of screaming and crying and generally being uncomfortable we decided to abandon the plan, go for a walk on the city streets, and get some sushi for lunch. We have since tried (unsuccessfully) to re-nap him. So here I sit typing and none of us have gotten much-needed sleep.
And that’s why we’re here. That pain. That bi-polar-like pain. He goes from a giggling, happy baby on a scary airplane ride to screaming his head off in a cozy, quiet little room at RMH.
I’ve had some time to reflect on this past Fall and everything that has led us to this point. It still isn’t so clear to me as to how we got here after spending a summer that was so free and fun. And I don’t know if we’ll go home from NYC with a sudden burst of insight. I’m hoping so, but we’ll see.
Over the last three months we’ve had good days and bad days. Sometimes the bad days are stacked one right after another and it seems there’s no end to Nathan’s screaming and acting like he wants to crawl out of his skin. Some days he’s not in all that much pain, but you can tell by his eyes and his whining disposition that he’s not doing so hot. And we’ve also had some really good days mixed in. Some of you may have seen him when he’s in the place. Like me you may wonder if there’s really anything wrong with him at all because he seems so, so good.
To summarize using the old nursery rhyme: When he’s good, he’s very, very good indeed. And when he is bad, the pain is horrid.
I’m living smack dab in the middle of all this bi-polar-ness right now and I don’t have much perspective and insight to share. The unknowns and unexplainable symptoms often leave me spiraling. However, I do know that we’ll keep fighting to figure him out medically and praying the purpose of his life is fulfilled. And we’ll enjoy the rest of this NY trip. Tonight we are going to try and catch an evening service at Tim Keller’s church, grab dinner and just soak in all the Upper East Side has to offer. Hopefully more to update you on tomorrow!
I love what Larissa Murphy has to say about how to live inside Christmas when your heart hurts. It’s a beautiful post and describes what I’m feeling this holiday season and maybe what you’re feeling too.
‘Greetings, you who are highly favored! The Lord is with you.’ Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, ‘Do not be afraid, Mary; you have found favor with God’…’I am the Lord’s servant,’ Mary answered. ‘May your word to me be fulfilled.’ Then the angel left her.” -Luke 1
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!