NIH Trip - Travel and Adventures

Our trip the the National Institute of Health (NIH) to participate in a week-long study almost didn't occur due to the looming (and now occurring government shutdown). We received confirmation Friday around noon that we would still fly in 24 hours, regardless of the shutdown. Since we had spent the past two years waiting and persistently doing our best to get into this study, we were excited but surprised to get the green light to go since earlier in the week it sounded as though the study would be on hold with the shutdown.

Our travel Saturday was remarkably smooth, complete with my aunt delivering us to the airport with snacks and toys to entertain Teddy. Teddy thoroughly enjoyed the flight and the 2:1 attention he got the entire trip. He was mesmerized looking out the plane windows and only complained the last 10 minutes of the flight when he couldn't play with the tray. The shuttle bus driver who took us to the car rental place was excellent with Teddy and shared his experiences as a bus driver for children with special needs. It was one of those moments where you feel as though God intentionally places someone in your path.

A half-empty airplane, and I'm stuck with these goofs.

Dave navigated us to the NIH campus without any issues. We discovered that security here is pretty much like airport security. We had to unload our vehicle, run all the luggage through a scanner, have the vehicle searched and walk through the scanners ourselves in addition to getting visitor badges made using our driver licenses. I wasn't quite expecting that, which makes me wonder what type of things are done or housed on the NIH campus that require that level of security.

We got checked into the Children's Inn, which is free for families to stay while at NIH. We have our own room with a shower, TV and two beds. There's laundry facilities and kitchens in each wing, with some communal pantry items as well as private pantry and refrigerator space. There's an art/craft room that we haven't visited, along with a really cool toy room that Teddy is loving. There's also mail boxes, where each child gets a small surprise each day. It seems there's family-style meals brought in by various groups on weeknights, which is likely what will be our supper most nights this week. As wonderful as it is, there's something that seems a bit weird about it. I think it's honestly just accepting the charity and goodwill of others, even when we feel we don't need it. I'm focusing on gracious acceptance this week.

Family photo with the Washington Monument as the handle to Teddy's chair.

Today was full of adventures, starting with exploring Washington, D.C. Dave bravely drove right to the National Mall (although traffic wasn't bad at all). We wandered around the memorials: Vietnam, Korean, WWII, Washington and Lincoln. We walked to the White House. We attempted the National Treasury, but it is closed on weekends. We ate a quick bite in the Smithsonian gift shops and wandered just a bit of the Museum of American History. We attempted the National Archives, but it was closed due to the government shutdown. We saw signs of the shutdown elsewhere, notably signs and a lack of National Park Service personnel and an abundance of garbage. As disappointed as I am with the shutdown, I also realize it might have reduced the crowds of people as well.

Government shutdown? Let's send Teddy to straighten things out.

It was absolutely perfect weather, warming up to near 60 degrees, while wandering. From downtown D.C., we headed back toward NIH to an adaptive park. We met another family from Maryland there whose daughter Alexa has the same genetic disorder as Teddy. We spent several hours at the park while Teddy played Alexa's siblings (and paused long enough to snap a few pictures with Alexa). Teddy also liked climbing in Alexa's chair and trying to steal her chewelry. Dave spent most of the time chasing Teddy round and round the park, while I got to snuggle Alexa and visit with her mom.

Two PIGN kiddos together is a special sight to see.

There's something incredible about meeting another family whose child (and children in this case as they lost one daughter with the diagnosis before Alexa was born) has the same rare diagnosis as your own. This family was the first we connected with after Teddy's diagnosis, and I instantly felt a connection with the mom. Although our children are affected differently by the disorder, there's so many similarities in their mannerisms and personalities. There's so many shared experiences ... things others can try to imagine but haven't experienced.

I adore this photo and am so glad to have met this sweet girl!

After thoroughly wearing Teddy out with three hours at a park, we grabbed a few groceries and a quick, tasty bite to eat at California Tortilla. (Lunch consisted of trail mix and granola bars, so we were a bit hungry. Teddy ate a $4 yogurt at the Smithsonian. He's worth it.) We went through security again to get back into NIH. (It's the same process every time.) Teddy was excited to be back, so we went to the play room for a while where he met another boy his age. I talked a bit with his mom since the boy only speaks Arabic. What I learned is enough to tug at my heart and make me incredibly grateful and blessed for our situation.

Teddy loved swinging with Alexa's older sister, who's a sweetheart.

This little boy has a genetic disorder that essentially wipes out his immune system. He is here at the NIH with his mom for 7 months. Despite being here since September, this is the first week they are spending at the Children's Inn because they've been in the hospital until now. As if that isn't tough enough to imagine and hear, his mom said Teddy reminds her of her other son, who is 8 months old. That son is back home in Egypt while she is here with her 4-year-old son. When I commented on how hard that must be, her reply was, "There is no other way."

I know this post is incredibly long, but the last few days have been a bit of a whirlwind. I'm beyond grateful that both Dave and I are able to be here with Teddy to share the experience together and have two sets of ears to process the incredible amount of information we'll get starting tomorrow. My hope is to share updates here daily, both to keep our family and friends informed as well as process all the information.

Reflecting on two happy boys of mine.