Health & Fitness

The Marathoning Mom With Bones Of Glass

Why would you run marathons when you have bones that could break at any time? If you're Jennifer Jansonius, you do it for your daughter.

When you’re running a marathon, what keeps you going, mile after mile?

For Jennifer Jansonius, it’s the knowledge that if she doesn’t run now, and give her daughter a memory of her as a strong and active person, she might miss her shot forever.

After repeatedly suffering several broken bones after the birth of her daughter,  Jansonius, 33, was diagnosed with a hypophosphatasia, a rare metabolic disease that softens the bones due to defective mineralization. Doctors cautioned Jansonius that strenuous activity like running could lead to permanently broken bones.

Jansonius knows she may eventually need a wheelchair, but she wants her now 5-year-old to remember her as strong and active. Running and the community of runners she’s met have also helped Jansonius cope with the stress of her diagnosis and an uncertain future.

Earlier this year, she completed the Boston Marathon, in defiance of both her doctors and–at least initially–the Boston Athletic Association, which organizes the 26-mile race.  Folks talked to Jansonius about running against the odds, rethinking her goals and more.

The following excerpts have been edited for clarity and brevity.

Have you always been into running?

Jennifer Jansonius began breaking bones after the birth of her first daughter.

For the most part I’ve always been into running. I ran a lot with my dad as a little kid. I ran all through high school. I was varsity cross country. I kind of stopped running when I got to my twenties. You get lazy, and then you have a kid, and then you try to lose that baby weight, and that’s about the time I got back into running. And unfortunately, that was also just about the time that I started breaking my breaking my bones.

Tell me about your diagnosis. What was your reaction?

I still don’t have a lot of answers unfortunately, because mine is so incredibly rare. It’s basically a rare form of an already rare condition. I probably will never have any answers. I won’t know if I’m going to pass this along to my child or what the incidence rate is because they can’t even tell me if it’s dominant or recessive. I don’t know about treatment or if there will ever be treatment for me. Unfortunately, I’m going to have to take it day by day.

How do you make peace with that uncertainty?

You can either wallow in it or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

You can either wallow in [uncertainty] or pick up the pieces and move on. Obviously you’re a lot happier and a lot healthier if you keep moving.

After applying and getting rejected for the Boston Marathon, the International Para Olympic Committee got involved on your behalf and you got finally accepted to the Marathon in January.  What was your training like?

Well, it was a bit of an experiment. I had broken my femur again in October and as of the MRI at the end of December, that femur was still healing from an old stress fracture. So unfortunately I found out about a month later than I was supposed to be ready for a full marathon. I went on some medicine to heal my fracture and I trained about eight or nine weeks. I took it slow and easy and essentially had to hope for the best. This was once in a lifetime opportunity. I wasn’t sure that my leg was going to hold up.

What happened at the Marathon?

I actually ended up the day before the marathon in the emergency room with an anaphylactic reaction. So in addition to all the other things that could’ve gone wrong that also went wrong. But in the end I survived and made the six hour cut off and I finished. That was what we were hoping for. It was an experiment in all things you probably should not do, but they won’t allow you to defer and they basically said, “hey look we’re probably not going to allow you in again.” I’m going to try to appeal that decision next year, just see what happens, but at the time as far as I knew they were only going to allow me this one opportunity so I had to take it.

The running community has helped Jennifer deal with the stress of her condition.

What did it feel like when you did finish?

I was lucky enough to have my husband be able to guide me in for the last eight miles so that was nice. More than anything, it was just something I was really hoping I could do for my daughter. She doesn’t quite understand it yet. I’m just really hoping that several years from now when she remembers her mom she’ll remember the things that I did.

Do you plan to run more marathons or other races? What’s next for you?

I don’t know. Basically all of the doctors over the years have told me “you know you really shouldn’t run at all let alone marathons.” Marathons have a really, really high risk of me doing damage that I can’t come back from. I’m able to walk marathons pretty safely, it’s the running of the marathons that have kind of a 50/50 for me. If there’s a chance I might to do Boston or do New York, or maybe do some fundraising then I’ll probably only do the ones that are the once in a lifetime opportunities. Eventually my body’s going to stop allowing me to do these. It’s just a matter of when and how.

Is there anything that you’d like readers to know about your story?

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything.

When I first was diagnosed, I honestly thought my life was over. I cried, I was just a mess, I went online. That’s the first thing everybody does. I couldn’t find a single story, a single person like me that had a skeletal disorder that was still running. So for me that was really really difficult because at 30 they’re talking about needing a wheelchair. It was really just a lot to comprehend.

I’m really really hoping that maybe just one person realizes that bad things may happen but it’s not necessarily the end of everything. You might have to change your plans a little bit. It may not be exactly what you thought it would be. But there is still that opportunity to do the things you always wanted to do or to realize those dreams, and just not to give up on that. It took me a long time to figure out that I could still accomplish all those things I wanted to, just because there was no one like me out there.


How Being A Patient Taught Me To Be A Better Mom

Spending 18 months in doctor's offices may not have gotten me a diagnosis, but it has taught me patience with my kids and myself.

“Seriously, Mom, what do you even do all day?”

My twelve-year-old daughter—a teen in the throes of a hormonal surge—was accusing me of being lazy: a stereotypical useless housewife, sitting on the couch all day watching television while stuffing my face with Bonbons. The issue of contention? A missing pair of leggings, which she accused me of having lost.

In the past I would have reacted with anger, defending my stay-at-home mom status by spewing a list of quotidian tasks I am forced to complete for her and her brother on a daily basis: grocery shopping, cleaning the toilet, and so on. Then, a battle would ensue: she’d sarcastically express disbelief, I’d blow up and tell her she was an ingrate, she’d storm off, and then I’d feel like an awful mom.

No fun. So this time, I tried something different.

I said: “I have an idea. Tomorrow I won’t clean your room, grocery shop, or wash your clothes.” I flashed her a mischievous smile. “Let’s see if you can notice a difference. ”

She was stymied. I walked off with a wink. I’d be lying if I said I wasn’t proud of myself.

The last eighteen months which I have spent as a patient may not have given me a diagnosis, but it sure has taught me a lot about parenting.

The last eighteen months which I have spent as a patient may not have given me a diagnosis, but it sure has taught me a lot about parenting.

Twelve years ago, while pregnant with twins, I read What to Expect When Expecting and The Happiest Baby on the Block in preparation for being a “perfect mother.” After my kids were born, though, perfection seemed forever out of reach. My newborns cried incessantly, and in my frustration, I berated myself for being horrible. I think that set a pattern: as my children grew, I internalized the criticisms I had of myself as a parent and caregiver, which in turn, caused me to react to them with frustration.

It wasn’t until I experienced chronic pain that my beliefs about what I was capable of as a parent–and, for that matter, my parenting skills–began to shift.

Several years back, I began experiencing chronic pain in my right calf muscle.  The first orthopedic surgeon I saw said, “I don’t know why you are having pain. It’s weird. A muscle strain should have healed by now even with exercise. Plus the pain doesn’t get worse when you do exercise.”

That word–weird–stood out to me. Was ‘weird’ a medical term? I asked myself. It seemed odd that a doctor–someone we go to for neat and tidy answers–would use such a word.

After the appointment, I went home. My daughter was rifling through her room, looking for her misplaced headphones. Her tone was accusatory: “Mom, where did you put my Beats?”

The implication of her question was apparent. In the past, I would have been swallowed by self-doubt. Did I move her headphones? I’d wonder. Then I’d have torn the house apart looking for the missing item, all to try to prove to myself that I wasn’t the world’s worst mother.

Instead, that word weird stuck out in my head. I was impressed with how easily the doctor how used it, how confident and unfazed he was by the fact that he didn’t know the answer to something.

So I attempted a new approach. I responded, “I don’t know where you put the headphones. That’s weird you can’t find it.”

She looked at me with a quizzical expression and then left the room in a huff.

For the first time, I felt empowered using the word “weird.” I didn’t have control over the unknown pain in my leg, but I had maintained control over a contentious interaction with my daughter. It felt, in a way, like I’d internalized a great parenting truth: that I didn’t have to be omniscient to be good at being a mom.

It felt, in a way, like I’d internalized a great parenting truth: that I didn’t have to be omniscient to be good at being a mom.

Before my next appointment with the orthopedic surgeon, I had an MRI which showed inflammation in the calf muscle.

“I don’t see a tear or anything I could repair with surgery. I’m referring you to a rheumatologist.”

After meeting with the rheumatologist she said, “There is nothing indicating you have a rheumatological related disorder. I’m referring you an orthopedic surgeon.”

Are you kidding me? I’ve already been to two different orthopedic surgeons.

Later that day, I prepared dinner while my son sat at the kitchen table staring at his homework.

“Mom, I don’t understand how to do this math problem. Can you help me?”

I used to get As in Math class, but that was thirty years ago: I don’t remember the formulas. In the past helping my son with his homework, in fact, I’d spent hours filling up a paper with calculation after calculation, trying to re-learn Algebra from scratch. Maybe that wasn’t the best way to handle this.

I thought of the doctors with their years of training and medical specialties, referring me to someone else. I responded: “Your twin sister has the same math teacher as you, I’m going to refer you to her.”

Again, a great parenting truth. Just like good doctors recognize when they aren’t an expert on something, good moms do too. They know when to network their kids with someone else.

Two for two. I started looking for other parenting skills I could pick up from doctors.

When different specialists shuffled me around from one to another, I noticed they had something in common. They loved to order tests. I had blood tests, an ultrasound, x-rays and two different MRIs. All the doctors had no qualms admitting they needed assistance or more information or rule out a diagnosis.

I decided to apply this same principle to being a mother. Up until this point, I was under the delusion I should do everything for them. I thought being a good mother meant taking care of their every need, such as cleaning their clothes or cooking their meals.

Parenting has a lot of grey areas. It wasn’t as simple as knowing the correct answer on a multiple choice test.

During one family dinner, I made an announcement.

“I realize some of you have expressed concerns about the laundry not being completed in a timely manner, while others objected to the dinner selections, so I’m writing a detailed form about how to use the washing machine, cook dinner and do other household tasks. That’s an order: STAT.”

My message was met with befuddled stares, followed by numerous questions but in a few weeks they acquiesced to my “orders.”

Being a perfectionist enabled me to succeed in school and other areas of my life, but it didn’t help me as a mother. Parenting has a lot of grey areas. It wasn’t as simple as knowing the correct answer on a multiple choice test.

I used to think of doctors as omniscient godlike creatures. I was in awe of their ability to be admitted to medical school and preserve through their grueling residency training. Seeing their human fallible side enabled me to accept being an imperfect parent.

Being a perfect goddess, it turns out, isn’t a prerequisite for being a great mom.


Parenting In Public With Love And Lots Of Insulin

The Dale family is using the power of YouTube to shine the light on type 1 diabetes.

Family vlogging has changed the way the world parents, and no one better shows how than the Dale Tribe. The Dales–Amy, Jon, and kids Anna, Eli, Shae and Aspen– have enjoyed a groundswell of popularity since they started uploading little pieces of their lives to YouTube in 2013. Today, they have almost 100,000 subscribers… a platform the Dales use to try to raise awareness for type 1 diabetes.

No one in the Dale family had grand aspirations of YouTube fame when they started posting their family videos online. For Amy, in fact, the decision to upload videos of her kids to YouTube was purely practical. She laughs: “I thought ‘I suck at scrapbooking, maybe this is a way to keep my family memories.'”

Amy’s first videos are endearingly primitive: the first one’s even shot with a vertical iPhone camera. As they go on, though, she gets better and better at putting them together, showing the individual personalities of each of her kids in a charming and comforting way. Anna’s artwork, Eli’s freerunning, Shae’s love of acting: they all get equal space to express themselves.

The Dale Family.

The love between family members is obvious in these clips. The Dales aren’t doing anything special–carving pumpkins, going camping–but there’s already something compelling there. Unlike other YouTubers, the family seems really present and in the moment. They’re not performing, just living, and in an era of hyper-calculated social media, it’s refreshing.

Although Jon was supportive of what Amy was doing on YouTube, he was a little too standoffish. “My initial reaction was ‘this is fine for you to do, just so long as I don’t have to be too involved,” he remembers. Complicating matters was his career in social media strategy for big brands. “I wasn’t sure being goofy with my family was good for my personal brand,” he says. “A couple of years in I sort of saw that vlogs were having a positive influence and I decided to become more supportive and get involved.”

“It was a real difference after he got involved,” Amy says. “Before it was me on my iPhone and it was… not awesome.”

A candid moment with the kids.

Jon brought a little professionalism to the project, making the editing tighter and the narratives a little clearer. The honesty and authenticity was still there, it was just easier to digest.

The turning point for the family came with the diagnosis of their daughter Aspen with type 1 diabetes in January of 2016. She had been feeling sick and losing weight, and the family brought her in for some tests. Amy filmed the day, taking the kids to the mall and BuildABear Workshop while they waited for Aspen’s blood tests to come in.

After the tests, an ambulance came to pick up Aspen and hooked her up to an IV drip for insulin to bring her elevated blood sugar down. It’s a tough watch, but the little girl takes it like a champ. They learn about all of the parts of managing diabetes – checking blood sugar, injecting insulin, learning the signs of highs and lows – and we watch them do it.

The family didn’t upload a video that week, until Aspen came home.

“(Working on the video) was almost therapeutic to me,” Jon says. “It was my birthday when she was diagnosed and we went to the ER that night. It was 4 days later that we got back home. I sat down the next day, we had this footage and I almost in a daze sat down and edited that episode. We had this whole world of people that were trying to understand what had just happened to us, and I thought if we put a vlog up, I don’t have to have this same conversation with fifty different people about what type 1 is.”

As the father of a type 1 diabetic myself, that video brings me back with whiplash speed to my son’s diagnosis: the feeling of panic and confusion as you learn that your lives will never be the same. Amy’s emotions in the moment are hard for me to watch, but the honesty with which she reacts to it is really inspiring. The Dales’ video struck a chord, and Aspen’s diagnosis became their second most popular video to date.

When your kid is first diagnosed, you’re left totally adrift. But the interesting thing about type 1 diabetes is that there’s a powerful community around the world reaching out to support each other. My son Henry didn’t start making videos to help other kids until two or three years after his diagnosis, but having Aspen’s very first moments captured on video is incredibly powerful for other kids experiencing that panic and confusion. She’s a strong kid, and her strength can help other people.

Since the diagnosis, Aspen’s diabetes has become just another part of the Tribe’s life. The family has incorporated blood sugar checks, insulin doses, pump changes and the like as just another part of their daily routine, showing the world that living with type 1 is just another sort of normalcy.

The diabetes community is a powerful one…

It’s expanded their world in multiple ways. The diabetes community is a powerful one, with families and friends supporting each other through the ups and downs of the disease. The success of Aspen’s diagnosis video bolstered their channel, massively increasing their subscriber numbers. Her diabetes is treated with the honesty and openness that they bring to all of their videos, and while it’s a major part of the family’s life it’s not the sole focus.

In a world that’s becoming increasingly concerned about the ethics of YouTube parenting, uploading your children’s most intimate moments for all the world to see can be a controversial decision. In particular, the recent drama with a Maryland family who had children removed after abusive prank videos  they’d been making came to light has painted family vlogging in a pretty bad light.

But the Dales have a strict policy of what makes their YouTube channel a safe space, both for their children and the people who visit them. “We basically have the approach that any time our kids don’t want to be included in anything they don’t have to give a reason why, they just say ‘Hey, we don’t want this filmed.’” Jon says. “For any reason they can ask at any time, or ask during post if there’s something. And we know it works, because the kids will exercise that. Whether our son feels like he has a zit or our daughter has a bad hair day, we don’t push back. It’s not a negotiation.”

Yet bad hair days aside, one thing Aspen has continued to be comfortable sharing with the world is details of her Type 1 diagnosis. Diabetes isn’t the goal of the channel–the Dales say the only real goal is to show the world how they get along, because they believe it’s “good for people to see how a healthy family operates”–but it’s not something Aspen is afraid to show the world.

The end of Aspen’s diagnosis video has her facing the camera with Jon. “We’re excited about this new journey, and Aspen has been super, super brave, haven’t you?”

She nods. The video ends, and another day begins.