It always feels good to come home. Mom and I bade farewell to Colorado yesterday. We left the resort at 6:30 in the morning and drove to the Denver airport. The sun was in my eyes the whole way and I was irritable but I managed to get us there in one piece.
We were able to board early enough to get a window seat this time (well, I got the window). What kind of a jerk makes their mother sit in the middle seat? Me.
We took off into a cloudless sky. I was able to take a lot of cool pictures and enjoy the scenery for a long time. The flight passed without incident. Once again, they warned us that there would be turbulence but there was none. When we got to Hartford, Dave was waiting for us. He looked especially handsome.
Mom and I parted ways, but I will get to see her again by the end of the week since we are camping together. After we got home; Dave, Dad and I went to dinner at our local favorite, Señor Panchos. I regaled them with tales of exploring Colorado and of my friends from the NFED. Both of them were tired from refinishing floors earlier in the day so they probably wished I would just be quiet.
Today was back to the grind. I was thrilled to learn that my co-worker who had given her two weeks’ notice the week before I went to Colorado had decided she wouldn’t leave after all. I had been trying not to think of it during my vacation but was rather stressed at the idea of having to take on more work or train someone new. So that was a relief.
It was a bit hard to concentrate at work today, because my head was full of mountains and clouds and thoughts of my friends and all the conversations we had last week. Of course I am glad to be home with my man and my feline children, but a part of me is sad that I won’t see most of those people for another year or more.
I’m thinking I might have to take at least one road trip to visit those who are within a few hours drive. But for now I will enjoy being home. Perhaps my next project will be to redo my gardens.
Today started off with a photo shoot. Everyone from the conference was instructed to stand on the bridge that connects two buildings. We were all wearing our family conference t-shirts, with the exception of a rebellious few. Keep an eye on the NFED Facebook page for those pictures.
After breakfast, Terri and I wo-manned the promo items table. We also got called in to do some quick interviews on video. Yeah baby! (Though I wish I’d done something more attractive with my hair.) I talked about how blogging about EEC has given me more confidence and self-acceptance.
After lunch we said goodbye to Suzanne and Will and some other families who were leaving. Boo.
Terri and I went to Lindsay’s Skin and Hair session and learned a bit about how to apply makeup and which skin care products would work best for us. Then we had a regional meeting, where we discussed the things we could do to improve communications in our local areas. Then suddenly it was time for the children to sing a song and the conference was officially concluded.
This evening the remaining EEC peeps went to dinner at a local Indian restaurant. We enjoyed the food and were soon uncomfortably full. We went back and hung out on the patio again until it was time for bed. Mom and I have plans to leave at 6 tomorrow to return our rental car and catch our flight home.
I have a lot of deeper thoughts about the conference that I do intend to share on the blog, but I don’t feel quite prepared at the moment. It’s hard sometimes to find the words to express the feeling of being with people who share something so rare as our condition. We are fortunate to have found each other through the NFED, and I love being able to get together once a year and just spend time together.
I loved being in Colorado. What a gorgeous location. I joked last night that I kept taking pictures of the same mountain that’s behind the resort, but as any nature-lover will agree, the time of day and the angle of the sun and the level of cloudiness all affect the way the landscape looks. I just love it.
The only disadvantage of the conference being in this location (the resort) is that it felt like we were all spread around. I feel like I missed the chance to run into people and strike up conversation. I did get to meet a few new people, but it didn’t seem like as much as previous years.
While I am sad to say goodbye to my NFED friends, I am looking forward to returning home to my handsome David and my two fuzzball children. I just remembered that we have a sales meeting during the upcoming work week. Oh work, I have barely considered you once this whole week.
Next weekend is our Grand Isle camping trip. I will NOT be blogging nightly about that, as I intend to be fully unplugged. I will say that this nightly blogging experience has been interesting and may have helped me become a little less anal about creating perfect blog posts.
Those of you reading this who were at the conference, travel safe! If I did not talk to you, I apologize. It’s probably because I just did not see you (or hear you). I hope to see you all (ya’ll) next time!
I’m running out of steam on this one blog post a day business! I didn’t take many pictures today.
This morning we had a motivational speaker who was interesting. He actually has a child with a rare disease too (though not ectodermal dysplasia). He had some people get up and share their experiences which was interesting.
My ‘Adult Life 101’ session went well. I got there early and had everything set up all nice. The group was not as large as I had hoped, but we were still able to have a decent little discussion. We really could have used more time though.
After that it was off to a lunch meeting to discuss the NFED blog. We brainstormed some ideas for the next couple of months. Once again time ran out. It seems like time is flying here!
The afternoon was the syndrome specific session, where we get to meet with other affected people and doctors to discuss various topics.
Tonight was the talent show, which was a dinner show this year. For some reason our servers were really angry and kept slamming our plates down. I guess they didn’t like the entertainment.
We then hung out on the patio for many hours. In fact, right now I’m actually writing this from one of the patio areas while my fellow EEC gang talk about how we can better serve older people with EEC. I’m listening!
In other news, back east, my friends the Claire family spent the day in Boston having little Ronan’s first cleft lip and palate evaluation. They will have to make many trips down in the coming years. It will be a hard row to hoe, but they are an amazing family and will power through. Dennis keeps using a hashtag which I will have to steal- #eecstrong
Definitely gonna make up some T-shirts.
In conclusion. Here’s a selfie of the group I’m with right now.
Tomorrow is the last day! Suzanne and Will will be leaving. So sad!
Once again, I woke up bright and early. I guess I really am an east coast girl. Or perhaps I would just be a morning person if I lived here.
Today was the official start of the NFED conference, even though I felt like it started on Tuesday evening when a bunch of us were together for the dinner.
Registration didn’t begin until 10, so we had a leisurely breakfast and goofed around a bit in the morning. The majority of the following images were blatantly stolen from Terri or Suzanne or one of their husbands. I’ve got this beautiful iPhone 6+ that I keep forgetting to use.
The liaison group, of which I am a proud member, did an intro session at the beginning of the conference. We sung a slightly modified version of “Ain’t no Mountain high enough.” Thanks to Will for capturing this on video for all time. I can’t get it to post on here, so maybe later. We then introduced ourselves and did a little icebreaker activity. Major props to Kristin Kelso for organizing this.
After this, a group of us went out to Garbanzo for lunch. It was delicious and fun to be out and about with the gang. We then ran back to the resort to catch the Family Panel Discussion, which was really good.
I then had to rush out because I signed up to do a facial recognition study, which consisted of being photographed with a 3D imaging camera. This is what it looked like:
There was a full-color photo, and then this cool topographic view, which I liked better because it makes me look like a Roman goddess. Sort of.
After dinner, which was a surprisingly delicious veggie wellington, (as opposed to a steak wellington), it was time for the beach party!
We all traipsed down about 1,000′ in elevation to the lake, where children swam and people of all ages kayaked and rode stand up paddle boards. I got to chat with my Ally girl for a bit (photo to come, once I steal it from her mother).
I also made the rounds and chatted with some other people, but for the most part sat with my usual crew and drank wine. Not too much, of course.
Mom and Marc showing off their flash-endurance skills.
We then returned and hung out chatting with the videographers who are here making some documentary about some of the people at the conference. I’m not one of them, but I guess this blog is my own personal documentary.
I just realized how late it is… I must get to sleep! Tomorrow is a motivational speaker, which I am looking forward to hearing (so I can learn from him and become a motivational speaker myself someday. Then, I am leading the young adult session.
One of the reasons we came out to Colorado a bit early was because I volunteered to participate in a research study for EEC and AEC.
It was really a minor sacrifice- I would let them take a small piece of my skin and they would grow it in a lab and study it. The goal would be to learn more about the syndromes and potentially find a treatment for some of the skin issues people with AEC and EEC face.
Of course it wasn’t a big deal but I wasn’t exactly thrilled to have to visit a medical facility while on vacation.
There is something about the cold, sterile medical environment that triggers a cold, hard fear in my psyche. Even though I knew it was just a quick biopsy, it’s still just not a fun place to be.
Fortunately the whole process was pretty quick and I was able to get on and enjoy the day. Plus, it was pretty fun to hang out with my EEC pals in the waiting room and compare wounds afterward.
After a very warm walk back to the hotel, Mom and I were off to the science museum. Woo hoo! We saw such delights as the Owl butterfly and display after display of gorgeous minerals and gemstones mined right here in Colorado. I didn’t take many pictures (I’m not even sure if you’re allowed to take pictures), but here are a few highlights.
We also saw a show in the planetarium, which was fun. As we were leaving, we caught a glimpse of Dog the Bounty Hunter walking into the museum. Weird!
This evening we got down to the resort where we will be staying for the rest of the week. Some of us went out for a delicious pizza dinner.
Tonight we tried to hang out a bit at the resort, but after various issues with room arrangements and the general tiredness of one and all, it was decided we would return to our rooms and slumber.
Today we started off with a trip to Celestial Seasonings. It was not as fun as the Ben and Jerry’s tour, but perhaps that’s a given. It was nice though. Some of the interesting things I learned were: 1. Herbal tea is technically not tea if it doesn’t contains actual tea leaves. It’s an herbal infusion. 2. They have to store the peppermint (and other mints) and the white tea in separate rooms from all the other herbs and teas because the white tea would absorb all the other flavors, and the mints would contaminate everything else. We got to go in the mint room. The menthol was overpowering. It would be great place to go if you had a head cold! 3. Boulder, Colorado is Celestial Seasonings’ only packaging plant.
Driving to and from Celestial Seasonings, we noticed that the field around it was full of thistle. Gorgeous!
Upon closer inspection, it was also full of prairie dogs. They did not want to participate in a photo shoot, but I am a jerk and took pictures of them anyway.
We then got lunch at a local deli which had some delicious vegan options. We decided to head to the University of Colorado and check out their planetarium. We didn’t really have time to see a show, so we just looked at their lobby display, which was a bit dull.
We thought we’d check out their art gallery instead, but once we finally found it (in the rain, nonetheless), we discovered it was closed! So we decided to just cut our losses and head down to Aurora.
After a rainy and traffic-laden commute, we finally made it to Aurora. We soon met up with other NFED families who will be participating in various research studies tomorrow. Tonight we all had dinner together and signed the consent forms for the biopsies tomorrow.
But the best part was getting to see some of my NFED buddies, and my Ally girl! We said we are going to get matching buttcheek biopsies tomorrow. In reality, I will likely do upper arm, but we’ll see what happens… More on that tomorrow.
Once we were back in the hotel, I had a few drinks with my EEC pals. I think the altitude may cause the alcohol to affect me more than usual. Two glasses of wine and I am three sheets to the wind. I can only hope that this blog post is not horribly misspelled and inappropriate. I guess I’ll find out when I read it in the morning. For now, I am off to bed!
This morning I woke up at 3:30. I rolled over and went back to sleep for a bit, but the dark corners of my mind harbored questions about the day ahead… Would I be stricken with altitude sickness upon reaching the top of Pikes Peak? Would I lose control of my bike and plunge to my death in a rocky crevasse? Would I get to see a mountain goat?
A few hours later, we were at the bike office. We signed the paperwork that said we would not sue them if we got hurt or died. We ate a quick breakfast and then they loaded us into the vans and took us up to the cog railway station. There was a bit of milling about there while we waited for the departure time. One of the guides pointed out the staircase that goes up the mountain, called the Manitou Springs Incline. People hike this. On purpose.
At 8 am, our cog train began the ascent. The first part was through Aspen and Pine forests. I saw a Pika scurry through the underbrush. The train conductor told interesting historical facts and some punny jokes on the way up.
After a while we got up above the tree line. The conductor told about how Katharine Lee Bates went up Pikes Peak in the summer of 1893 and was so inspired that she wrote the poem that we now know as America the Beautiful. Her original words were a tad different…
O beautiful for halcyon skies,
For amber waves of grain,
For purple mountain majesties
Above the enameled plain!
God shed His grace on thee,
Till souls wax fair as earth and air
And music-hearted sea!
Then, we rounded a corner and I got a glimpse of the fruited plain, and I suddenly became verklempt. The pictures I took don’t do it justice, but let me tell you, it was amazing. I managed to keep myself from weeping openly, but It took effort. My heart and soul were overcome by the grandeur of it all.
Now, on to the part you really want to know about… We got to the top and almost instantly we were shrouded in clouds, so there was no scenic overlooking, unfortunately. I noticed I felt a little buzzed, which apparently is how you feel at 14,000+ feet. (My normal home is at 750 feet).
We applied more layers (it was 32 degrees up there) and got situated with the bikes. Mom even had a Go-Pro, so there will be video evidence of our journey. The guide gave everyone instructions on how to operate the bikes and how to not die.
And then we were off. The slope was steep and there were no guardrails, but everyone in our group managed to stay on the road and not have any problems. After the first mile or so, I felt more confident and began passing I some of the slower bikers. ZOOM ZOOM!
Here are a couple of photos.
Once we were almost to the bottom, the group pulled over and I noticed a vehicle with Pennsylvania license plates pull over. Suzanne and Will (also in the area for the upcoming NFED conference) popped out and ran over to say a quick hello. I had told them we’d be doing this, but it was still pretty cool that the timing worked out!After that it was only a mile or so to get to the restaurant where we would have lunch. Ahh. We were exhilarated and excited to have completed such a cool adventure!
In the afternoon we headed up to Boulder, where we are staying in an odd hotel which seems to have once been an apartment building. I don’t know. But it’s quiet, at least. We went to Pearl Street to mosey around and shop, and then had a yummy veg dinner. Our waiter was a total stoner and kept giggling after every interaction we had with him. It was hilarious.
Tomorrow is Celestial Seasonings (don’t laugh, I enjoy tea!) and then down to Denver to get ready for the research study that I and other EEC and AEC people will be doing on Wednesday morning.
Now I shall rest comfortably with the knowledge that I can actually handle 14,114 feet above sea level and also I ride a mountain bike downhill like nobody’s business.
Oh, and I did not get to see any wildlife except for the aforementioned pika and a couple of marmots (so cuute!). Apparently we rode past some sheep but I was concentrating on not having a heart attack (it was during one of the rare uphill parts) and failed to notice. However, it seems that Mom caught it with the Go-Pro so I will get to see it (and myself whizzing by it) later.