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2017 NFED Family Conference Recap

The 2017 NFED Family Conference has already come and gone – in a flash, it seems. This year it was held in Falls Church, VA, which is right outside of our nation’s capital – Washington DC. The day before conference was Advocacy Day, and many NFED families went to Capitol Hill to speak with their state representatives about mandating that dental treatment be covered under health insurance.

I won’t recap every second of the conference – just point out some of the highlights.

Highlight 1: Reuniting with old friends!

Now that I’ve been going to conferences for 6 years straight (except for last year, which I skipped), it’s crazy cool how many people I actually know! Of course there’s my adult EEC crew, Norma’s Canadian entourage, my mini-me – Ally, and her family, and all the other adult parents of EEC kids (most of whom are not much older than me).

There’s also a lot of youngsters who I met when they were just little tykes, and who are now getting so big! Julie, who once cried when I tried to hold her, now sought me out to say hello! I reunited with my two Sams, although I only have a picture of one of them. The boys I met at my first conference are all teens now and towering over me.

Of course the are plenty of other adults I enjoy reuniting with – I don’t want to try and list everyone here for fear of missing anyone. But you know who you are!

Highlight 2: Meeting new friends!

I was excited to discover a mother/daughter team from Connecticut at the conference. Not only that, but the daughter has EEC! Doubly exciting, since we hardly ever get New Englanders, much less Nutmeggers at the conferences. I will definitely be getting in touch with them so we can get together locally.

Another new EEC person was 9-month old EJ, who was there with his mom Iris. Iris introduced herself to us by announcing that she had Facebook stalked all of us. If she hadn’t been a mom of a young affected boy, this might have been super creepy, but we all laughed and then fought over who would get to hold EJ next.

I’ll let the photos do the rest of the talking – and let me say a quick shout-out to Iris, Caitlin, Terri and Suzanne for sending me most of these pics. I think only about 4 of them were mine to begin with. And thank you Bridget for the picture of Sam and I. 🙂

After the conference was the Rally for Ally. I had hoped to get to chat with a lot of people there who I hadn’t gotten the chance to talk to at the conference. However, about halfway through, it started torrentially downpouring, and I ended up heading back to the hotel with the MacDonald clan. We got dinner in the hotel restaurant and then it was time for me to catch my plane!

Next year the conference is going to be in Oregon! I’m already trying to figure out how much time I can get off from work so that I can make an extended trip out of it.

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Writing off the Past

Lately I have been working on getting rid of stuff that I no longer love, use, or need. Sometimes, the process is exciting and fun. I love getting rid of clothes. I find it easy to pull uncomfortable or ill-fitting clothes off hangers and toss them in a pile for donation. I take pleasure in pushing old bills and bank statements through the shredder. My kitchen cabinets have been cleared of spare glasses, plates and serving platters that hardly ever saw the light of day.

When it comes to sentimental items, however, the drawstring on my proverbial trash bag cinches right up. I can’t get rid of the letters from my 5th grade best friend! What if I want to re-read them some day? If I get rid of something someone gave me, does it mean I didn’t appreciate it?

There’s a lyric I lived by for a long time; Keep your old love letters, throw away your old bank statements. I found it romantic to picture myself as an old woman, reading through my box of love letters and reminiscing on my youth. Yet I kept that box of friendship and love letters for nearly 20 years without reading a single one of them, or even thinking about them.

It’s true. I had a shoebox full of old letters, starting with my 5th grade pen pal and ending with my first and last long-distance boyfriend. Last week, I finally sat down to sort through the box and determine if any of these letters were worth keeping.

The discard pile.


As it turns out, what my friends and I wrote about when I was in 5th grade, middle school, and even high school, was pretty lame to look back on. To be honest, I didn’t even read all the letters after the first few. I considered how my 5th grade pen pal and I lost touch after a few years, and how many of the people whose letters I’d kept are no longer part of my life, and I actually don’t miss them. That sounds kind of mean, but I don’t intend it to be. The truth is, people move on.

Of course I did not throw away ALL the letters. I did keep a handful – those from my very best friends, which, just by looking at the envelope, I can recall the excitement of getting a fresh letter in the mail and tearing it open to see what it said. I also kept the love letters, though it was a little weird to read them now, so many years after having parted ways with the writer.

So that’s one less box of “stuff” on the shelf. Now to get sorting through the boxes of get-well cards and birthday cards that I’ve kept since 1986. I plan to scan anything that had truly significant meaning to me and discard the rest.

At one point in life I thought it meant something to hold on to all these items, but the reality is, all this stuff just weighs you down! I just keep telling myself how much better I will feel once I’ve gotten rid of the detritus in my life!

A Whirlwind Tour of MA, NH & ME

Last Sunday, I woke up with the sun. Dave helped me load up the little Mazda and I zoom-zoomed off to Nick’s house. After some strategic rearranging of my car so we could fit all his stuff in it, we were off again.

An hour later we were at the Claire Family’s house in New Hampshire! It only took me a year to finally get up there to meet Mr. Ronan. This is the family who found my blog while they were pregnant with Ronan. I’ve written about them a couple of times: here, and here and here.

It was great to spend a few hours together at their lovely home. Denny (Ronan’s big brother) was a hoot and so full of energy! He was so excited to show Nick and I all his toys and his room, and was determined not to be left out of the lunchtime conversation.

Ronan was a sweetheart. When we first got there, and I first held him, he was crying because Denny had woken him from his nap. But after he had some lunch he perked up and was happy and laughing, and chasing Denny around the house on his hands and knees. Lindsay and Dennis are really going to have their hands full once he starts walking!

Visiting the Claire Fam!

After we said goodbye to the Claires, Nick and I were off to Acadia. It was another 4 hour drive north. We grumbled about this for a bit, but the time went by pretty fast and gave us lots of time to catch up on each other’s lives. At Mom’s request, we stopped at When Pigs Fly, which is a bakery in Kittery. We managed not to eat all the bread before we got to the campground.

Some of the things we did in Acadia were:

Scoped out the view on Cadillac Mountain. It was a little chilly up there! Also, crowded, but we managed to get this picture which makes us look like we are mostly alone.

The gang on top of Cadillac Mountain!

Chilled at the campsite. Actually, we really didn’t do much of that – we were too busy going out and exploring.

Chillin!

Scoped out the Bass Harbor Head Light. We were looking for some Japanese gardens, but failed to find them. We found this light house instead.

Bass Harbor Head Light

We spent some time climbing on the rocks and looking at stuff in the tidal pools there.

The McKelvie kids take over the rocks

We drove into Bar Harbor to find out if we could go on a whale watch or a puffin tour. When we saw the prices we were less inclined, so we decided to just walk across the sandbar to Bar Island.

The sandbar… or is it a parking lot?

We, along with several dozen other people, walked up to the summit. It was a beautiful view!

Looking back at Bar Harbor from Bar Island

Later, we made our way to Thunder Hole. Despite being there at the appropriate time, we did not hear it thundering. Instead, we watched lots of people climbing the rocks and we wondered how there had not been more fatalities at this location.

Thunderless Hole

On our final day in Maine, we rented paddleboards and found a secluded lake on which to take them out. The lake was amazing. The water was surprisingly warm and very clear. As soon as we got out of the car, we could hear loons calling on the water. We saw a mama loon with two young loons. We saw adult loons diving and coming up really far from where they’d dived. We even saw a bald eagle! Kris and I went out on the paddleboards and were able to find the tree where the eagle was perched. He (or she?) was grooming, and as we watched, a huge, white tail feather fell out of the tree and helicoptered down. It landed on a bush right on the edge of the water, so I was able to paddle over and get it. That’s my kind of souvenir!

Returning from a paddle adventure.

Of course there were lots of other moments that I did not get pictures of – our evening of lying on the rocks looking up at the stars, counting satellites and talking and laughing about all sorts of things, eating lunch at an unfriendly restaurant in Bar Harbor, Kris and I riding bikes the wrong way on the park trail and almost getting our eyes gouged out by a seagull.

As always, I love getting to spend time with my siblings. It’s always funny to see each other and notice how similar we actually are, despite living miles and miles apart, and to recount old stories and create new memories. Sigh. A week is not nearly long enough.

Bonus picture:


The rest of the family eating lobster while Kris and I were back at the campsite eating vegan sausage and peppers and potato salad.

Home Again

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.

The Denver Airport from the runway.

  

Rocky Mountain High

  

A midwestern state, don’t ask which one.

  

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.  

My gardens are out of control.

 

 

Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale

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. 

Promotional table selfie

 

After lunch we said goodbye to Suzanne and Will and some other families who were leaving. Boo.  

 

Bye bye Bracee!

 
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. 

Wedding crashers.

 

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.  

Goodnight, Colorado!

 

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!

Peace. 

Namaste. 

Blessings. 

Etc. 

Vacation Required

A week from today the NFED family conference will be kicking off. My mom and I are heading out to Colorado this Saturday for a little vacation before conference starts. Boy do I need it.

Yesterday I found out that one of the three other people in my department is quitting. I almost cried when she told me. I already feel like I am at the max capacity that I can handle, and now she’s leaving and just casually shrugging off all the workload that she had been carrying. Even if we are able to get a temp in the next few weeks, they are going to need a lot of hand-holding and guidance and…

Yesterday as I left work I was thinking that when I was my co-worker’s age, I did the same thing that she’s doing. I gave no thought of the future, or how my presence (or lack thereof) affected anyone else. If I didn’t like the job, I just gave my two weeks and peaced out. I get it. I won’t lie that I haven’t thought of doing that with my current job, but I think that’s the difference between being 25 and 35. I’d like to think that if/when the time comes that I am going to leave this role, I would give them the courtesy of more than two weeks, so there’d be time to find a replacement and train them before all hell breaks loose. 

That’s enough about about that. I am just glad I will be on vacation next week and will be able to forget about it all for those few days. I have ambitions of posting on the blog every day to keep track of the adventure and let my reader(s) follow along. Whether or not that actually happens… we’ll see.

Of course I am also excited to reunite with my friends at the conference. It’s always great to catch up with old friends and meet new ones. I’m even going to be leading the Young Adult session (called Adult Life 101). It should be fun!

This was taken on the last night of conference last year. I had a rally bad sore throat and was just about to head to my room to sleep and get up super early for my flight the next day.

This was taken on the last night of conference last year. I had a wicked sore throat and was just about to head to my room to sleep and get up super early for my flight the next day.

Well, that’s all for now. My next post will be coming at you from Colorado!

A Call for Healing Vibes

Last night I spoke with my sweet friend Norma, who is featured in the documentary posted here.

It was so nice to hear her voice again. I don’t really talk with people on the phone much anymore, since most everyone is available by Facebook, email or text. I’m thinking I’m going to have to change that, because talking with Norma made my heart soar and brightened up my day. (Is that corny? I don’t care, it’s true!)

Norma is has been dealing with a corneal erosion for months now. Others with EEC have had similar experiences. Because we lack the proper glands in our eyes, our eyes do not produce adequate lubrication and therefore cannot heal as easily as the eyes of people without EEC.

Her erosion is so bad that she can’t see and has lost her independence. She has been staying at her sister’s house instead of her own. Of course she is unable to use the computer and so has not been able to keep up with people on Facebook or email.

As of this week, she’s begun using a different eye drop and it seems to be helping. Hopefully it is exactly what the cornea needs to heal and stay healed.

I just wanted to put a call out to all my NFED friends and friends of this blog to say a little prayer, or send some positive vibes in Norma’s direction. I am keeping my fingers crossed and my thoughts uplifted that her eye will heal soon.

So much love, Norma!

The MacDonald clan and me at the 2012 NFED Conference in Orlando

The MacDonald clan and me at the 2012 NFED Conference in Orlando

NFED Regional Conference in White Plains, NY

Last Saturday I hopped in my (NEW!) car and zoomed down to White Plains. It was a lovely sunny morning, although it was close to 0° F. When I arrived in White Plains, I drove around the block about 5 times before figuring out where the hotel actually was. Way to skimp on signage, Cambria Suites. I reluctantly handed over my (NEW!) car to the valet and turned my attention to the day ahead.

I arrived bright and squirrely and bounded up to the hotel lobby, where I greeted the NFED staffers, Kelley and Lea, and got to work at the registration table. I was soon joined by a very sweet young lady named Cami who helped check people in as they arrived.

Five minutes later I saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

I later saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

Of course I was happy to meet a lot of folks I hadn’t met before, but there were two families coming that I was especially excited to meet.

One was a young couple who had recently found out that their unborn son is affected with EEC. Ultrasound technology for the win! The father, Dennis, had reached out to me via email just two weeks before, after having found my blog. (I’ll write more about that cool story in another post.) I encouraged them to take the trip down from Maine so they could experience the awesomeness of a family conference.

The other family that I was looking forward to seeing was a guy (Sean) with EEC who I had known about from his aunt (Sally), but I had yet to meet in person. A couple of years ago, Sally and I had gone out for coffee and ended up spending something like four hours sitting and talking about life with EEC. Her sister (Sean’s mother) had EEC, so Sally knew all about how it was for someone to grow up with EEC and all of the challenges she had faced. She had been trying to get Sean involved with the NFED, but he had been reluctant. Finally I was going to meet this guy and his girlfriend Sharon!

Back to the conference – the morning kicked off with a heartwarming intro by DeeDee Olsen. Then, Kelley and Lea introduced themselves and spoke about the staff and services the NFED offers. Then, Tessa Field from Edimer gave a talk about the research that Edimer has been doing for XLHED. I found this really interesting, as I have seen Tessa at the last several conferences and I was aware of the XLHED research and treatment progress, but I had never actually sat in on one of the lectures. Tessa is an excellent presenter. She’s able to explain genetics in a way that the average person can understand.

Suddenly it was time for lunch! I made a sandwich and plopped a scoop of what I thought was potato salad on my plate. Sean’s girlfriend Sharon was beside me as we ate and we talked a lot. At one point I put a forkful of the potato salad into my mouth and realized instantly that it was NOT potato salad, but chicken salad. Horrors! Sharon had just asked me a question and was looking directly at me as I desperately tried to decide what to do with the offending meat product in my mouth. I smiled and held up my finger to indicate that my mouth was full. As soon as she looked away I blurted the contents into my napkin. It did cross my mind to chew and swallow, but since I haven’t had meat in so long I was afraid it might cause digestive calamity and ain’t nobody got time for that.

Anyway, talking with Sean and Sharon was really cool. It’s always fun to meet another person with EEC and go through all the stuff that is “wrong” with you, and realize that it’s actually tied to EEC, and that other people with EEC have the same problems.

My newest friends, Sharon and Sean.

My newest friends, Sharon and Sean.

After lunch, Dr. Tim Wright gave an entertaining overview of dental treatment for kids with ectodermal dysplasias. The final presentation was by a doctor who explained genetic testing. It was a difficult talk to follow and unfortunately I think it may have left people even more confused about genetics than they were before. Afterwards, I tried to explain to the others at my table what autosomal dominance is, but I don’t know if I did any better.

That was it for the presentations, and we had some time before dinner to chat. I mostly talked to Sean and Sharon, but I also got to talk with some other people I hadn’t met previously, and catch up a bit with the “regulars”.  A lot of people left at that time, and by the time the pizza was set out for dinner, there were only two tables of people left.

I made sure to grab a slice of pizza that did not contain meat, and I made my way over to talk to Dennis, who I really hadn’t gotten a chance to talk to earlier in the day. By then he had made friends with lots of people, telling them the story of how he and Lindsay found out their son would have EEC. Everyone was really excited that they had found their way to the NFED so early, and I felt a tiny bit of pride that my blog may have been the beacon that helped them find their way.

By about 6pm, everyone was gone and I sat talking with Lea and Kelley for a bit, while a handsome waiter cleaned up around us. We reflected on the day and talked about how we were looking forward to the national conference in Colorado in July. We said goodbyes soon after that, and I headed down to retrieve my (NEW!) car from the valet.

As I waited for my car, I noticed that the valets were actually driving the cars in and out of elevators, and that the garage must have been a floor below us. As I watched, a car emerged from the elevator and scraped it’s side along the edge of the brick wall next to the elevator. My mouth fell open, and as the car drove closer I could see that the other side was equally scratched. I realized that it must have been one of the guys who worked there, but I was rather unnerved at his carelessness. My car finally emerged without any damage and I leapt in and got out of there before anything else could happen. Crazyness!

So in conclusion… if you happen to have a NFED Regional Conference in your area, I highly encourage you to attend (just avoid the valet parking option). It is a great opportunity to connect with more local people, and to find out how the NFED can help you (or perhaps, how you can help the NFED). I forgot to mention this earlier in the post, but they provide a childcare option so that your kids can play and meet other kids while you hang out with the adults.

It was great to connect with new people and to have the opportunity to see some of my longtime NFED peeps in the wintertime. Less than five months to go until the conference in Colorado! Woo!

Photo Credits: Lea and Kelley took the photos and I snagged them from the NFED Facebook Page.

Throwback Thursday: In My Heart Deeply Berred…

Sibling confessions

Sibling confessions

This throwback is true heart-warmer for me. There is no date on the paper so I don’t know exactly when it is from, or even why it was written in the first place. I have had it for a long time, tucked away in a box entitled “A Few of my Favorite Things”.

I vaguely remember my mom handing this paper to me when I was about 13. She found it while going through Kris’s school papers. If it was for an assignment, it must have been a rough draft because there are no markings or comments from a teacher on the page. I never told Kris I had it and I wonder now if he will remember writing it.

Typed as it was written – adorable spelling errors and all. 🙂 Also, please imagine this being spoken with a Philly accent.

In my heart deeply berred is someone I truely love. My sister Heather is a part of me. Some of me takes after her. It’s not bad. Thou sometimes I do get so upset when she goes oh, blast, I messed up on my picture! Even thou it’s almost perfect. But besides all that art in her theres another side and it’s humorous. She is funny. I have never lived a day with out a laugh from her. I can get out of control and when something happens I’m lost and don’t know what to say? But Heather is like Oh! My love are you alive! In a funny but nice way! I can refere to her for help even when I’m too embaressed to ask someone else. I’d be a snobby bratt without her. Whenever I’m down she helps me. I love it when we go places together by are selves. Even thou she looks different I don’t care. She is always the best and only sister I have. When a friend comes over and asks what’s wrong with her, I say “nothing!” She is the best sister in the world. I even tell people that she is Zach’s girlfriend and there like Hey she’s lucky! But with all honesty, she is the best you can get as a sister.

All together now: Awwww!

Anyone who has a sibling or two will understand that the relationship can be rather challenging sometimes. You’re basically thrown together with this other person and expected to share everything. Of course there end up being lots of frustrating moments where one person is grouchy and the other is goofy, or both of you want to use the same toy (or exist in the same space) at the same time and there is conflict. There was plenty of conflict with Kris and I, oftentimes just because it seemed easier than being nice. But there were a lot of good moments too, and I have many happy memories.

Never too old to be cheeseballs!

Never too old to be cheeseballs!

As Kris mentioned in his writing, we would sometimes go places together by ourselves. This was mostly just taking walks in the park next door, and when we moved to New Jersey, it meant riding our bikes to the shopping center and blowing our allowance money in Rite Aid. I think our age difference also made it tough sometimes. Since I am four years older than Kris, I was naturally going to be better at things, like beating Super Mario Bros. or building a play-doh sculpture.

Over the years Kris and I have been through a lot together and I am grateful to have him in my life. He is one of the few people who really knows me and ‘gets’ me. Now, instead of taking walks together or staying up late to tell scary stories, we do most of our bonding on road trips. We really don’t fight at all anymore, probably because we’re not sharing a bathroom. 🙂

Don't worry guys, this is fake conflict. I think.

Don’t worry guys, this is fake conflict. I think.

Be nice to your siblings. They’re your best link to your past and the people most likely to stick with you in the future. (Mary Schmich)

Erin Gets a Hearing Aid

I just got a chance to watch this video. It’s about a little girl with AEC, (another form of ectodermal dysplasias) getting her first hearing aid.

I met Erin and her mom and grand mom at the conference. We only chatted for a short time but I can tell they are awesome people. I hope to get to spend more time with them in the future.

I Can Hear Now from Mumble & Shrug Productions on Vimeo.

What a cutie patootie!

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