A Glimpse of the Fear

I tend to avoid politics here because this blog is intended to create awareness and share our story living with CDG-PIGN. Strong political opinions don't tend to mesh well with the open minds needed to learn. However, AJ's running buddy shared this story today, and it resonated with me.

You might be confused. My children inherited my pasty white skin. There's no reason I need to worry about my child being perceived as a threat because of their skin color, regardless of their intentions and the facts surrounding a situation. But every mom whose child has a skin tone other than pasty white likely has that worry, that their child will be judged in a split second based on decades and centuries of stigma and racism that may lie just under the surface even if it's not blatant. Will their child be perceived as a threat because he's out running? Because he has a cell phone in his pocket that he grabs? Because he is taller than someone? Because his skin is not white?

Still confused on why this resonates? Let me clarify. I don't worry about AJ ever being perceived as a threat. But let me paint a picture for you .... in another decade or two, Teddy will be a big guy. I don't expect he'll have the safety skills to be alone in the community, but I can see him still taking off for adventures. So maybe he goes outside unnoticed, wanders into someone's open garage door because that's an open invite and that someone calls the police. Teddy doesn't listen to the police's directions, doesn't answer their questions and ends up handcuffed or worse. Or maybe Teddy's outside walking, still with a gait that looks like he's had a few too many, and he doesn't heed the police's direction to stop. He approaches them, stumbling slightly, arms out for balance (or wait, is that a threatening move) and grabs at them to take their hand (or wait, is he going for their gun).

These might seem really far fetched, like I've spent too much time with my own imagination. But these are similar to headlines of people with mental illness who weren't able to follow police instructions or people with disabilities who were struggling to maintain appropriate social behaviors. These headlines are rarer than the racial ones. But they give me a tiny bit of perspective into what other moms with different skin tones might fear.

The point is that no mom should have this fear. No person should be afraid to wear a mask in public to ensure their own health and that of their community. We need to do better. All of us. No excuses for the older generation, no more small mindedness, no more indifference. We need to stop blaming others and calling for change in others without taking a hard look into our lives to see how we can do better. What are the biases we hold? What are we teaching our children? How can we change ourselves to start changing our world?

Inchstones Defined

When you raise a child with special needs, you hear about inchstones. That's the term used to describe the tiny accomplishments that are barely a blip in the milestones chart, if they even register. For example, inchstones might include bearing their own weight at all, then again for 10 seconds, 30 seconds, a minute, etc. That's not quite as exciting as taking first steps, but we learn to celebrate every victory, no matter how small, because nothing is taken for granted. We never know how far our child will progress. It's not guaranteed our child will walk, talk, toilet train ... simple things most parents take for granted that don't require years of therapy, and multiple types of therapies, to accomplish.

Sometimes it's harder to see inchstones for a couple reasons. First, they're not the normal things you celebrate. Second, they're often so small and ordinary that it takes a moment to process that something amazing happened. Other times they stand out because they're crystal clear, like Teddy pointing for the first time to something he wanted (doughnuts at the grocery store).

Lately we've noticed quite a bit of progress with Teddy. It's little things like how well he listens and follows direction when he's highly motivated. But that means he understands not only what we're asking, but the concept of first do this to get to that. It's getting a diaper when he needs to be changed, showing a glimmer of hope for toilet training at some point. It's a new sign that he learned within 2 weeks, although it still needs a bit more precision. It's the desire to help with housework, even if that help is anything but helpful. It's the planning that goes into his efforts to coerce us into the hammock, so he can run away when we're stuck.

Who would think that pushing your brother in a pool is noteworthy?

Spending so much more time with our boys both helps to see the progress but also sometimes blurs it. When you spend so much time together, you miss that wow factor. The good news is that family and friends will definitely get that when it's finally safe to see them.

Our Happy Place

We spent the past two months under Safer at Home, which was scheduled to end May 26. Our state opened up, so to speak, nearly two weeks early with absolutely no warning nor planning. The decision to open up for business had nothing to do with COVID-19 and everything to do with the politics. Given our risk factors with Teddy and myself, we will continue to take all the precautions we can and minimize our interactions with others. 

That means we head to our land when we can because there's wide open space without other people. The boys can run reasonably free, although Teddy still requires quite a bit of supervision, and we can all enjoy nature. We managed to sneak away Monday evening to spend the night to explore all day Tuesday for my birthday. It was also special because it was our first night sleeping in our bunk room in our garage. 

This boy loves his shovels and dirt. Notice his butt scootin' trail.

Although we didn't get to sleep until shortly after 10 p.m. because the boys were so excited to run around and play when we got down there around 7 p.m. That didn't stop Teddy from waking up at 4:45 a.m. to start the birthday celebrations. The boys played fairly quietly and decorated the room while Dave and I attempted to ignore them and snooze a bit longer. 

So happy to dig in the dirt or the sand.

We spent our day putzing around the garage with a few projects, building a log fort to make good use of our many downed trees, foraging for ramps and morels and hiking together to explore some trails near our land. In short, it was an absolutely fantastic day. Now, mind you even a fantastic day with Teddy involves several heart-stopping moments to catch him from falling into the river (as he heads there on purpose) or beat him to the decrepit death trap of a deer stand. 

 

Family hike ... for the first 5 minutes when Teddy hiked on his own.

We are so grateful for this piece of land for us to escape from the stress of our everyday life, enjoy each others' companies and make memories. 

Happy World CDG Awareness Day!

May 16 is World CDG Awareness Day. CDG stands for Congenital Disorders of Glycosylation, which is the larger subset of rare diseases that encompasses Teddy's disorder. Some years I do a fantastic job prepping for the day, and other years I don't manage much. This year, the global pandemic has altered life for us, so I'll blame my last-minute post on COVID-19.

Luckily, though, a story I submitted to The Mighty was published yesterday. That story details the process of finding a diagnosis for Teddy, so it ties in nicely to World CDG Awareness Day today. You can find that story here: https://themighty.com/2020/05/effects-of-whole-exome-sequencing-pign-rare-disease/

As always, we're grateful for the support of family and friends. I love seeing all the posts of CDG shirts, green shirts and other showings of support for Teddy. Wearing a green shirt won't change he world, but each bit of awareness we bring opens the door for research to better understand these disorders and support those who live with (and unfortunately often die from) them.

He's still cute, daring and goofy. Gosh, I love this kid. 

Toothless

I remember being afraid of when Teddy would lose his teeth because I was convinced he'd swallow them and that would create problems. Now, I just shrug my shoulders.

We did really good on his first two teeth, probably because we were so paranoid that we checked him daily and then multiple times a day once he had a wiggly one. And then, like any good parents, we became complacent.

A couple weeks ago, he magically lost one of his front teeth. Here today. Gone, presumably eaten, tomorrow. This past week, though, his sitter mentioned that his other front tooth was wiggly. So, we reverted back to good parents who checked his tooth daily and then multiple times a day the last couple days as it got more wiggly. In fact, Dave even tried pulling it several times to no avail, including Sunday morning.

Fast forward to Sunday night when Teddy came in from playing in the garage while Dave attempted to work on projects out there, and Teddy is bleeding from his mouth. I asked, surprised, "Oh, you guys came in because you pulled his tooth?"

Dave's reply was that he had no idea Teddy lost his tooth and probably did it while he was getting into all sorts of trouble, which is clearly why they came in the house, not the bloody grin.

There's no moral to this story, just like there was no tooth for the tooth fairy ... again.

Toothless Teddy.

So Many Miles, So Many Smiles

Last week our family was incredibly blessed on a rainy, dreary day. A giant package arrived at our house that made me literally squeal with excitement when I saw it. Teddy's very own running chair had arrived, after being approved late last fall. We had requested this through his case worker who approved it after her due diligence. We were super excited to partner with myTEAM Triumph (MTT) to order Teddy's chair because we've used these race chairs for several years through them, so we knew what works for Teddy.

Captain Teddy in his new wheels! And, yes, we ran down the street in the pouring rain.

We were able to get a chair that fits him wonderfully now but also fits me, which means that he can push me. Just kidding. It means that he can grow with this chair, with a few simple adjustments like switching the seat pads. It has a foot basket to help contain his feet and wheel guards to make him work just a bit harder to get to the wheels.

It also has some pretty sweet wheel covers that highlight Teddy's diagnosis with the CDG symbol, his name and the MTT logo. He'll do his part as a MTT ambassador wherever we go.

This chair means so much to our family because it gives us more freedom to enjoy the outdoors together. This allows me to return the chair to MTT that I had borrowed during quarantine, which enabled us to go on several runs while AJ biked along side us. This also adapts to pull behind a bike, which means that Dave can pull Teddy. (See, I push for running, so he can pull him for biking.)

Just this weekend alone, we logged 12 miles over the course of two bike rides. Of course, one of those bike rides was to look for the missing bolt we lost on our first adventure with the chair. I'll blame that on my 8-year-old crew member who doesn't quite tighten the bolts well enough for trails ... and my 6-year-old passenger who intentionally was trying to unscrew the bolt.

Pretty sweet ride for Teddy, and it pulls nicely, except with the gusty winds we had both days. 

We're so grateful for this chair. It will help us share so many miles and smiles together as a family. AJ and I were joking that now we could train for a family triathlon in a few years when AJ is strong enough to pull Teddy for the biking. I'll do the running, and Dave can pull Teddy in a boat for the swim. I was pretty happy with my plan to get Teddy a whip to make them go faster until AJ pointed out that whips still swing backward, so I'm not safe from Teddy trying to make me go faster either.

Life's an Adventure

I know I haven't posted as often here, not because anything is drastically wrong but rather because life is different, still rather busy and emotionally exhausting. So I aim for at least a weekly post.

This week we had three days of solid rain, which was quite the damper (literally) after gorgeous weather last weekend. Teddy and I had a day to ourselves while AJ and Dave planted trees, so we explored a local trail and then a nature preserve. Our goal is to enjoy the outdoors as much as possible while minimizing contact with people. So, unfortunately, sometimes we head out for a walk to turn back at the trailhead because it's too people-y. (That's now a word for me. I feel like the pandemic justifies it, even though I used it before.)

The trail we ran in the morning was fantastic, mostly flat and just beautiful. We also enjoyed at least a mile or two without running into anyone and were off the trail before it was too busy. But the treasure we found was the nature preserve, which on a beautiful day, only had a handful of cars in the parking lot. We took the chair we borrowed from myTEAM Triumph and headed off to explore. Less than a quarter mile into the preserve, it became obvious that we had an interesting choice to make in terms of which steep hill we wanted to go down. The path was wide enough to accommodate the chair, so off we went with me hoping I didn't have to push Teddy back up that hill.

Let's just say that we had so much fun exploring these trails, not only because it was a walk in the woods with so few people that we encountered ... I think only once did we step aside for others ... but also because it was an adventure. The trail got so narrow the chair didn't fit. That wasn't the biggest problem in the woods, but when the one side of the trail was the river, let's just say that Teddy thought it was hilarious. Anything dangerous is clearly more fun for Teddy.

We went back as a family later this week when the rain cleared up, and the trails were covered in mud. This time we brought the backpack carrier, so we were able to explore a bit further than our previous stopping point. Teddy still thought it was quite fun, even with a free ride.

I'm so grateful we found this place, which feels like a sliver of paradise for us close to home. Right now I'm not able to get to our land, so finding nature and solace nearby is a blessing.