A Whole New World

When people first learn about Teddy's diagnosis, a common response is, "I'm sorry." It's a natural response, especially when you're uncertain what to say, when you realize the impact of a disorder like PIGN-CDG. 

Yet that impact isn't all negative. While I don't sugarcoat the challenges, my response to people is that we have learned so much and experienced so many blessings because of his disorder. 

One of the most incredible blessings is to virtually connect with people around the world who share this diagnosis for their child(ren). This has made our world so much smaller and richer, as we've gotten to develop friendships with others walking a similar path ... though, trust me, our children don't really follow any particular path as they create their own ways. We've been fortunate to meet families on our vacations to spend time with other precious children with PIGN-CDG. It's always such an incredible experience.

Two months ago, I had the chance to travel to Europe to visit Germany and Spain. Several years ago I hatched the idea of taking my mom to Spain, as she didn't get to visit me when I lived there for nearly 6 months. Then I became friends with Marianne, a German mum to a little girl named Anna with PIGN-CDG. We quickly developed a connection, which made me realize that Germany isn't that far from Spain. So I changed our travel plans to include time in Germany as well. And then COVID happened, with the US shutting down return flights the date we were supposed to fly overseas. Our trip was postponed for 3 years, but it finally happened this spring.

My German was good enough to order our drinks the first evening. 

I loved Germany. I loved the food, the culture, the drinks, the scenery, the castles, the cathedrals, the monasteries that brew beer and the people. I loved the ease of using public transportation, the fact that people were so patient with my poor German but appreciated the efforts, the fact that people spoke English quite often and that you can walk everywhere. And the Barvarian pastries ... oh my goodness! I joked to my friend that I thought I was a pretty good baker (I own a bakery after all), but that I wasn't so sure after visiting their pastry shops. 

It was incredible to experience this culture and country, and I was especially appreciative knowing I likely never would have visited Germany were it not for Teddy's disorder. There's so many places I want to travel, and Germany wasn't on the top of the list until I became friends with Marianne. I'm so grateful for this blessing from Teddy's disorder.

The highlight of the trip was spending time with Marianne and her family. It is crazy when you meet another PIGN parent, no matter where you're from, the instant connection and familiarity with one another. It's so easy to interact with their children because we have such a similar frame of reference, despite the differences in our children's abilities or ages. Her daughter Anna reminded me of a younger version of Teddy, with some things so strikingly similar like their penchant to laugh when things unexpectedly go wrong like someone dropping something or tripping. (I think they'd both love the 3 Stooges!). 

The 4 of us went for a walk the day my mom toured Austria.

I think it's so good for us as parents to see others instantly connect with our affected children, not be afraid to talk, hold and help them. It's a level of comfort that's hard to have unless you live this life. In fact, my mom stayed behind with Anna who was napping while my friend helped me grab groceries on the first day. It was no big deal because she's spent countless hours with Teddy, so she was fine for the short time we were gone. (And trust me, on that first jet-lagged day, I appreciated the assistance in navigating a new situation.) 

So many happy hearts.

It was so bittersweet to leave, but we have hopes to meet again. We know how challenging it would be to fly overseas with our affected children, so they may never meet. But we hold hope that we can figure out meeting again in person in future years. 

It was such an incredible experience to have this trip with my mom. I'm so grateful for Dave for holding down the fort with the help of AJ and Bri. Things went remarkably well for my boys while I was gone, though all 3 of them required unexpected doctor's visits within the first 5 days of me returning to the States. Apparently they could hold it together while I was gone yet fell apart when I returned. ;-)

Blurred Lines

I never thought we'd be the type of family to have a live-in nanny, but we morphed into that family during COVID. Both our childcare providers were in our inner circle, when even our own immediate families couldn't be during lockdowns and surges. They've joined us for holidays and our full-time provider has lived with us during the week while she's working. She lives nearly an hour away, and we have a spare room, so it's worked out well.

So it was only natural that as soon as we started floating the idea of a spring break trip that we asked if she'd be interested in tagging along. We had the space in the vehicle, she loves to travel and we knew an extra set of hands would be helpful. She was excited about the possibility of exploring national parks with us, so we made plans that included enough sleeping accommodations for everyone, including her.

Our trip was so much better because she joined us. Not only did she actually do some respite for us (cajoling Teddy to sleep in a hotel room, so we don't have to, is definitely respite), she naturally helps out like part of the family. That might mean handing things to Teddy during the drive, helping Teddy when he's eating something messy or keeping an eye on Teddy while we explored something. 

But she also provided company for AJ, someone to explore with him. They both loved hopping along the boulders by rivers, so they'd go exploring together while we hung back with Teddy. It gave AJ an adventure buddy, and they had fun adventures. It gave AJ a bit more attention during the trip, whereas sometimes Teddy becomes the focus for both Dave and I when he's particularly needy. 

These guys were great adventure buddies.

She also joined me in the hot tub and provided another adult companion to have adult discussions. And with her calm disposition, she helps all of us chill out when we otherwise might get stressed (like locking ourselves out of a hotel room ... at 8:30 at night ... for 1.5 hours). 

It was the best thing we could have done to make our vacation enjoyable, and I think she had a great time as well. I'm thinking she might need to be a permanent part of our travel routine. 

See, it looks like she's having fun!

 

Accessibility in Our Parks: Version 2.0

Several years ago I shared our experiences with accessibility within our National Park System. We finally had the chance to venture back to our national parks and travel as a family last month, and it's wonderful to continue to see accessible options. 

At Cuyahoga Valley, AJ made his standard request for Junior Ranger books. The ranger offered a more hands-on learning style if that was better for anyone in our group. She didn't single Teddy out, but she recognized that Teddy may not be able to do the typical workbook and provided that option. She didn't automatically assume and give that as the only option, but she gave a choice that might work better for us. 

It was a really neat set of cards with different activities to do throughout the park, with hands-on learning that could be done by younger ages or people who don't do well with written activities. It's such a great idea!

If they change the name on these, it's a darn near perfect idea.

She also politely inquired about how accessible one of the trailheads was due to construction because she observed us pushing Teddy in his chair. They have to keep safety during construction as the top priority and had made some changes to make it more accessible, yet it still wasn't truly accessible. She appreciated knowing, so she could inform other visitors as well as management. 

The other really cool thing we saw was a variety of adaptive equipment at Indiana Dunes to make beach access possible for people with limited mobility. If you've ever tried to push any wheelchair or stroller on sand, you know how challenging that is. They had several options to give people the ability to more fully experience the parks.

A variety of devices allow better access for more people.

The reality is there will always be a balance between accessibility and the component of leaving our parks natural, which means that all trails cannot be wheelchair accessible. I love to see, though, where parks make the outdoors available to people of all abilities. 

Our Vacation In Pictures

About 6 weeks ago, I lamented to my husband how much I missed visiting our national parks. Within a day, he suggested the possibility of visiting New River Gorge, the newest national park that we haven't visited. As COVID was currently calming down, it seemed perfect to plan for a spring break trip. We still took all the precautions we could (masks indoors when around others, limited hotel rooms and opted for rentals instead and no dining at hotels or restaurants). But we got to go on vacation!

As background, our family loves to travel. Ever since we visited two national parks on our honeymoon, we have planned nearly all our travel around national parks, monuments, etc. Each year we have explored our country, often on trips that no sane person would consider with young children. As Teddy has grown older, these trips have become more stressful and the tough realization that the hikes of years past are in the past. But we still managed to have a wonderful time with a few adaptions.

Most of our stops along the way were rest stops to allow Teddy to stretch his legs, unless we needed gas. We had to change him in the backseat of the truck, as there's rarely suitable changing locations for a 70-pound child who's way too tall. 

That scrunchy nose gets me every time.

Teddy loves exploring new places. Fortunately our first rental had very little in terms of decor or things that he could easily break. In fact, both our rental places worked well for Teddy, aside from needing locks on the bedrooms.

Teddy loved the game room at our rental place. We all did.

We spent the majority of our time at New River Gorge National Park, as we hadn't explored it yet. It was a great place to spend time outdoors exploring, and the weather was beautifully cooperative for this part of the trip. The river is the center of the park, and this was the day we were checking out the falls and rapids on the river.

Aren't we all so cute?

Notice the semi-matching cameras for Dave and AJ. 

We gave AJ our old digital SLR camera on this vacation. We had talked about selling it because we don't use it, and instead we decided it would be a great opportunity for AJ. He absolutely loved it and commented that now he really was like Ansel Adams, his namesake. It also motivated him while hiking and exploring. Teddy, meanwhile, was motivated by adventure. The rougher the trail, the more fun.

I'm sure his chair was meant for this terrain ...

I mentioned a few adaptations. The single best thing we did on this vacation was bring along reinforcements! Our wonderful childcare provider loves to travel and explore, and she was willing to tag along with us. She gets along fantastically with all of us and fits right into the family. I think she might need to join us for every vacation, especially considering she got Teddy asleep both nights in hotel rooms. Magic, I tell you, pure magic.

AJ loved being able to go off exploring with Bri.

On our first day of driving, I mentioned that it was both a good and bad thing that I packed the backpack carrier for Teddy. I said it's a bad thing because I might use it, but it's a good thing because we have it if we need it. Well, we did need it. Teddy can hike remarkably well when he wants to, but he didn't want to finish a particular hike. In fact, all he wanted to do was run in the opposite direction, when there was a really tall cliff about 20 feet away. I carried him for less than a half mile, but it made the hike so much more enjoyable rather than trying to convince a child laying on the ground to move in the right direction.

One day he will be big enough to carry me. Hopefully he listens by then.

We were fortunate enough to have hot tubs at our rentals. The boys did an afternoon dip, so that Teddy got to enjoy the experience. Otherwise, we usually hot tubbed while Teddy was going down for the night.

Teddy was excited to enjoy the hot tub.

All of our kids, including our childcare provider, did the Junior Ranger program to earn their badges. Well, we did Teddy's booklets at most parks. AJ was really happy to add 6 badges to his collection, including 5 brand new locations.

This was the most official swearing in ceremony in front of the backdrop.

After a few days of nice weather, we transitioned to much cooler and rainier weather. It felt appropriate for Fort Necessity, where they were in rain-filled trenches fighting all day. It also felt appropriate for the somber tone of remembrance at Flight 93 Memorial.

This is my favorite picture of Teddy from the trip. 

One of the most amazing parts of our trip was being able to connect with not one, but two, other families with CDG-PIGN. We had previously met one of the children 3 years ago when Teddy did his week-long study at National Institutes of Health in Maryland. It's amazing how much both of them have progressed in just 3 years! And then the next day we got to meet a nearly 2-year-old sweetheart, who took us down memory lane to when Teddy was that little.

Teddy spent Gettysburg pushing Alexa around, when we didn't put him in his own chair.

This is Teddy giving his version of a hug to sweet Hayden.

I felt better sneaking away for a couple runs because Dave had an extra set of hands to help. It's a good thing because the chairs we brought for Teddy weren't always meant for all the terrain, so Bri carried Teddy's chair up and down the stone steps on this path, but they got to explore a cool trail while I ran through Cuyahoga Valley National Park. 

Everyone is happy, even me as I was dying running hilly trails.

It was an absolutely wonderful vacation, although it felt really short when we were back home a week later. Our earlier trips have been upwards of 2 weeks, but we managed to pack a lot of fun and exploring into this week. And then we had a day at home to sleep in our own beds and recover before heading back to our normal routine.

Pure Joy

I've often said that Teddy lives in the moment, and he had some very joyful moments last week Thursday. We spent our first night in a hotel in at least 18 months. 

Some kids love hotels for swimming pools, like AJ. Others love the endless selection of shows on TV, like my enjoyment of the Food Network. (OK, most people now have access to so much media that this isn't exciting, but we have never had cable.) Teddy, well, he simply enjoys being someplace different that's not entirely Teddy-proofed.

From the moment he rode into the hotel on his chariot (the luggage rack), he was grinning ear to ear behind his mask. He couldn't contain his joy when we got into the room and immediately ran around exploring everything. He bounced on the bed. He laid on the bed and did his happy feet. He sat on the couch for a millisecond. He discovered there were holes in the wall and insisted that each of us try out each hole to see what we could see. He discovered the bathroom. He discovered the phone. He found the TV remote. 

Teddy loved the windows in the wall. 

He spent at least an hour bouncing around the room. We attempted to settle him for bed around 9, but he chose instead to perch on the air conditioner like a cat staring out the curtain into the parking lot. (He might have dislodged the cover on the air conditioner. Apparently it's not designed for cats the size of Teddy.) 

Teddy was channeling his inner cat.

He finally settled down to sleep by 10:30 p.m. without tears or screaming from any of us. He simply was too excited to lay still. He also stayed asleep until right around 5:45 a.m. For many people, that's insanely early. For Teddy in a hotel room, that's what we'd call a great night's sleep. 

We were both anxious about a hotel stay for multiple reasons, COVID being one of them. The reality is, though, that our biggest concern in hotels is always how Teddy will sleep. We've spent nights trying to get him to sleep until after midnight. We also have routinely been awake before 5 a.m., often on nights that he didn't fall asleep until extremely late. We also had that one morning when he woke up for the day ... at 2:30 ... in the morning. When you spend all your energy fighting him to sleep only to wake up insanely early, it's grueling. 

So in some ways, this was a test of the Teddy travel system. If we had a horrible night's sleep, we would have spent from now until our next trip dreading it because of the sleep struggles. I know one good night's sleep is not a guarantee of peaceful dreams for every night when traveling, but it gives us hope that with his development and the multiple medications intended to help his body rest at night, that vacations might be slightly less stressful.

And that, my friends, is a reason for sweet dreams. 

Detroit Free Press Marathon Weekend: We Run 4

I know I've talked about I Run 4 on this blog when the boys first got matched more than two years ago, but perhaps this post will capture how much this organization means to our family, specifically the two ladies who are matched with our boys. Teddy was matched a month after his diagnosis, which was a pretty difficult period of time for us as we came to terms with the information the doctors shared. His buddy Heather was a bright spot, with each post making us smile and every care package serving as a ray of sunshine. AJ was matched with Bridget a few months later after two unsuccessful matches that were just God's way of connecting us to Bridget. She's been an incredible buddy to AJ, supporting his interests, encouraging him to work hard and keep trying and filling his bedroom (in the best possible way) with swag from the dozens of races she does.

The runners representing for each of our buddies: AJ, Luke and Teddy.

This weekend we headed to Detroit as a family. We stopped along the way at Indiana Dunes National Lakeshore on a gloomy, rainy day, but we managed to explore with a short 3/4-mile hike, enough for the boys to earn Junior Ranger badges from a fantastic ranger who offered, multiple times, for Teddy to get the free National Parks lifetime pass that he's entitled to receive. We told him that we appreciated the offer, but we're more than happy to contribute our annual fee to the National Park Service each year as our way to support them. The really cool part was that he included Teddy right along with AJ and gave him a Junior Ranger badge as well.

We finished our drive to Detroit Saturday morning and headed right to the expo center for packet pickup. There was a minor snafu with my passport, so I spent some time with the problems and solutions people to make sure I was set to run my international leg of the relay race the following day. While there, we met up with Heather and her husband Steve, who were a part of our relay team. We continued through the expo and sat down with some snacks when Bridget arrived, walked up behind AJ and surprised him. (Honestly, I think she scared the dickens out of him because she popped right next to him, and he was completely focused on the food he just got.) This was the first time we ever met Bridget, and AJ was so excited to spend time with her. He went through the expo again with Bridget and her friends from her running group, Sole Family. Teddy used that time to thoroughly explore the expo center. He rode the escalators with Dave and I, took Heather to the wine bar and tried to sneak her espresso and showed Steve every single shoe shine station. In other words, he had fun.

Later that afternoon, we met Bridget and her husband Joey, along with Heather and Steve, at a cider mill. Cider mills are apparently Michigan's version of apple orchards. This one had animals to look at, a walking path along a river and delicious cider and donuts. We explored together and just enjoyed the opportunity to get to know each other better. It was a dreary, cold, rainy day, but the time together (and still-warm apple cider donuts if you ask Dave and the boys) was worth the chilliness.

Teddy took a shine to Bridget immediately!

Sunday was our relay race, and Bridget had custom shirts made for our relay team, complete with the number for our leg on the back of the shirts. She included all our running buddies and had the CDG logo for Teddy's diagnosis, along with my buddy's awareness ribbon for Down Syndrome. Since AJ has no logo, Bridget included the Superman one because she sent AJ a Superbrother shirt earlier this year. I chuckled to myself when AJ read the back of the shirt and immediately identified that as Superbrother for him.

Custom shirts for our group, thanks to Bridget.

Since it was cold and windy, not to mention it was downtown Detroit with 15,000+ runners and roads closed for the race, Dave stayed back with the boys. They went shopping and enjoyed the hotel's water park while we did the marathon relay. Bridget kicked us off, running over the bridge into Canada, where she handed off to me. I ran underwater through the tunnel back to the United States, which was extremely cool and just an awesome experience. I spent a portion of my time running thinking of my grandfather, whose memorial service was that day. As much as I felt like I should be there instead, my mom was understanding and supportive of us heading to the race still. I handed off to Steve, who ran the rest of the race, along with Heather, who was our official runner for the last two legs.

All smiles in the warm expo center after our marathon relay, team I Run 4.

Once all the other Sole Family folks got done running, we headed out to meet Dave and the boys for a late lunch. (Oddly enough, these full marathons take about twice as long as the half marathons I usually do.) We ended up at a tiny IHOP, but that didn't matter. It actually worked out perfectly that AJ got a booth to himself with Bridget for 1:1 conversation and attention. Several of Bridget's friends from Sole Family joined us, which was great since I already felt as though I knew them from all her posts and their welcoming us with open arms into their group throughout the race.

Best of buds, in person finally!

We had to say our goodbyes, until next time, to Bridget when we left the restaurant. Since Heather lives only a few miles from where we stayed (which made it convenient for them to graciously get me to the start of the race since I had no idea where I was going), we headed to their house for a little bit longer to visit. Teddy loved meeting their three dogs, cat and bunny, and AJ thought their shuffleboard table was as cool as their Harry Potter LEGOs. I'm pretty sure AJ knows a remarkable amount about Harry Potter from the 50 million questions he asked Steve.

Heather was a good sport with Teddy's odd requests, like playing in her bed together.

All in all, it was just incredible to spend the weekend with these two people, and their family and friends, who provide so much happiness, joy and support for our family. My heart is filled with gratitude.

Weekend Plans

This weekend we're heading to Michigan for a long weekend, pulling the boys from school Friday and Monday. A year ago, AJ's running buddy ran the Detroit marathon, which prompted his buddy, Teddy's buddy and I to decide we should do the marathon together as a relay. Fast forward to this year, and we managed to organize a relay team.

So we're heading to Michigan, with a stop Friday at Indiana Dunes National Seashore to explore, stretch our legs and get Junior Ranger badges. Then we'll head the rest of the way Saturday to meet our team for packet pickup. AJ's running buddy, Ms. Bridget, is going to run the first leg. I'm taking the second leg, followed by Teddy's running buddy's husband Steve. Teddy's buddy Heather will finish our marathon team.

AJ's super excited to meet his running buddy for the first time, and I'm excited for the whole weekend. We'll get to spend time with both buddies, outside of the race, and have some fun time together as a family after a week of work travel for Dave. It's a weekend spent with people who enrich our lives and are two of the biggest supporters of our children.

The only downside is that my running buddy, who lives in the area, is out of town. Guess we'll have to try again next year, right?

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.

20 (million) Questions

I played a different version of 20 questions this past week, spending 2 hours on the phone with a very nice lady from the National Institutes of Health (NIH) in preparation for Teddy's visit in January. I'm quite glad I filled out all of the details of my pregnancy and much of Teddy's baby book. The conversation itself was pleasant, filled with occasional laughs as I felt the need to explain gaining 45 pounds during my pregnancy with Teddy. (I ate a lot of ice cream.)

But, despite the pleasantness of the person on the other end of the line, the conversation still had those moments. Like when she asked me when Teddy started to run, and I explained that he definitely covers ground quickly but not in the motions of running. She then asked, "Would he describe it as running?"

My honest reply is that he wouldn't describe it as anything because he is non-verbal. Those are the moments that sting, the questions that are answered by what your child cannot do rather than the amazing milestones he's accomplished.

Fortunately, much of our conversation was on milestones and progress, in addition to all the medical history details. All this narrative is combined with Teddy's medical records is designed to prepare the team at NIH for Teddy's participation in their natural histories protocol study.

This study looks at just about any aspect of medical testing you can imagine from MRI to EEG to sleep study to spinal tap (eek!). That last one is the one we're most nervous about, although we're not overly excited at having Teddy sedated twice in a week. (Well, let's be real. Some days we wish we could sedate him. At least at bedtime at my folks' house.) He'll meet with developmental specialists, a gastroenterologist, a neurologist, ophthalmologist, audiologist, geneticist and a few more -ists that I'm missing off the top of my head. It is literally a week of appointments and tests, starting first thing Monday morning and finishing Friday afternoon.

We're hoping to get a better understanding of Teddy and how his body works from his issues sleeping to his incredibly high pain tolerance. There's so little known about his specific diagnosis that this is a unique opportunity to get all these expert opinions to build upon the knowledge of our team here (none of whom have seen any type of CDG most likely).

It also builds the database of knowledge regarding CDG and MCAHSS1 specifically. One other family with Teddy's diagnosis has completed the study and found it to be useful. We view this as an opportunity to help other families with this diagnosis have access to better information in the future.

It's been a long process to scheduled for the study (seriously, 23 months from the time I first inquired to the time we'll actually be there for the study). But, I'm excited that we're scheduled and crossing my fingers that Teddy gets and stays healthy enough to participate in the study (since illnesses tend to cause some issues with either the lodging accommodations and/or tests). If I were to actually think about the ordeal of flying with Teddy, driving through D.C. and all the tests, I'd be full of anxiety. So, instead, I'll continue with my usual technique of blocking all that until right before we leave. That works well for me most of the time.

Vacation

We've never done the typical relaxing vacation. Our honeymoon was probably as close as we ever came, and that still involved a fair amount of hiking. It's also when we fell in love with the idea of exploring all our national parks, camping and hiking our way through them.

And that's what we've been doing for nearly the past 10 years. We've hiked more than 50 miles across Isle Royale National Park, hauling all our stuff on our backs. (That first day before we redistributed our weight nearly killed me. Something about carrying half my body weight on my back.) We've camped on a nearly deserted island at Dry Tortugas National Park.

This is after hiking across Isle Royale with our packs!

When we had children, we didn't let that stop us from our adventures. Our children have seen more of this country than many adults. AJ turned one on our trip to Acadia National Park. Teddy turned one while we were at Crater Lake National Park. AJ turned 4 when we were at Saguaro National Park. (We managed to sneak balloons into our hotel room to surprise him!)

Happy 1st birthday Teddy! Celebrating in style at Crater Lake.

As the boys have gotten older, they've been able to enjoy the experiences a bit more. They get tired of riding in a vehicle, but I don't blame them after a couple thousand miles. It's pretty awesome, though, to watch your 4-year-old hike all the way up to Delicate Arch powered by his 2 little legs and some M&M energy. (We've discovered the key to AJ's ability to hike instead of complain is directly related to the sun. He hates the sun. If it's cloudy, he can hike. If it's sunny, he wilts.) And Teddy enjoys spending time with us, hopping around our tent or hotel rooms.

It's always a bit tricky to get a good family photo. Everyone is at least visible here.

These type of road trips are more of a hassle when they involve toddlers or young children, particularly when one child has special needs. Although Teddy doesn't have much adaptive equipment, we still need wheels to get him around, carriers to save us from lugging the 35 lb. lovable lug, high chair for picnic tables, special cups so he can drink and such.

And you know what? We know that each trip with Teddy has the potential to be more challenging than the last. He's still small enough that we can load him into a carrier for our hikes. At some point, that won't be a possibility. Like I said, he doesn't have that much adaptive equipment. That might change.

AJ likes to scamper ahead on rocks, kind of like his mom.

We don't take these things for granted. It might be hard to do these kinds of vacations, that are often anything but relaxing, but it's worth it for us. Those moments we get as a family seeing something incredible or simply being together in places of beauty and wonder are worth every step carrying the boys and listening to the tears or endless line of questioning from AJ.

We head on our next adventure in less than a week. It's a bit of a deviation from our norm because we're flying to Las Vegas to pick up our rental car. I'm used to packing the Tahoe with everything we could possibly need, including surprises wrapped for the boys to entertain them along the way. We'll have to be a bit more creative this time around, but I'm sure we'll manage. If not, we've told our families where to start searching for us.

Updates here may be a bit scarce starting next week because I don't plan to write a novel from a smartphone to post, but I'll try to get a few pictures and highlights of our adventures shared along the way.