photo credit: Heather Gray Photography
Hello! We are Katie and Ryan and we are the proud parents of Bjorn (3) and Axel (1). We recently moved to Colorado from the Pacific Northwest and spend a lot of time outside trying to wear our boys out. We are honored to share our story!
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Miggy: Hi Katie! So glad to be featuring you and your son Bjorn today. Lets start at the beginning, at what point in your journey (pregnancy, right after birth or sometimes after that) did you learn that something was not quite right with Bjorn? And while you still don’t have a diagnosis, at what point did you get a confirmation from the medical community that Bjorn does in fact have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Katie: Hi! Thank you so much for having us. Bjorn surprised my husband and I early at 35 weeks, 5 days after an eventful 1st trimester but calm 2nd & 3rd. We went home after a few days and, outside of jaundice and poor weight gain everything seemed mostly fine. Then at 5.5 months he stopped rolling over, a skill he had mastered, and I started to become concerned taking him to two different pediatricians who didn’t give it much weight. At 8.5 months he started seizing. They were very quick, just a few seconds but his right arm would stiffen outwards and his chin would tuck tightly to the right, and they were coming in clusters. It was hard to get the emergency room doctors to take it seriously because they were lasting just a few seconds and they treated me like a misguided first time mom. I took an iPhone video in the ER of the episodes and that was when they finally took note and immediately admitted him. I felt sick and absolutely terrified, my husband was at work and somehow made it to the hospital, where after a 4 day EEG the epileptologist said, “I think he is having complex partial seizures” (That opinion has since changed). That first summer we spent so much time in the hospital, Bjorn was having anywhere from 40-175+ of these episodes everyday and medication after medication failed to control them.
In the beginning I felt absolutely frantic to figure out what was wrong and address it immediately. I handled all the medical appointments and the ever changing medications and the testing and recorded all the seizures and read every medical journal I could. It was the worst time in my life. They would say, oh we think he has this or that and it was constantly changing. There was a long time where I thought a name would fix it, or get us more support or let us know what on earth was happening to our sweet son.
Now we have a name for some of the delays he has experienced, autism, but after almost 3 years of navigating these episodes with no name my attitudes have changed. I feel now such a fierce love for my little boy who blows expectations out of the water and I feel more peace with the ambiguity of it all. My role has shifted from medical journal sifter to advocate for him having the highest quality of life possible.
photo credit: Heather Gray Photography
Miggy: As you said in your email, at 3.5 years Bjorn is undiagnosed and continues to “baffle doctors at every turn.” While there isn’t a name for what you and your son are experiencing can you talk to us about Bjorn’s needs and how they affect his and your day-to-day life?
Katie: Bjorn is a sweet, funny, inquisitive, exhausting 3 year old. Sleep is incredibly important to control the seizures and we are a bit fanatical about it. He tried to stop napping about a month ago and it was hugely stressful because within about a day of not napping he was having a lot of episodes and his speech was going downhill. Now that we understand that Bjorn is on the spectrum some of our day-to-day life makes more sense. I remember telling my husband in tears last spring that I felt exhausted because it was so hard to navigate the world for Bjorn. Social situations are challenging for him though he is in a new special education preschool with amazing teachers and making huge strides. We have to make a lot of effort to prepare him for something new and I think we always feel a bit tense because each day can be totally different. Ryan wanted me to add here that the tension comes because you never know when he is just going to totally lose it. And oh man, is he passionate.
Miggy: What are the biggest worries you face for Bjorn? On the flip side, what are your hopes and dreams for Bjorn?
Katie: Probably my greatest worry stems from our lack of a diagnosis, we have no general outline of what Bjorn’s medical condition will look like moving forward. He has been doing extraordinarily well but has had regressions in the past. I feel like the possibility that these episodes will come back in an extreme way is a worry I have on the back burner at all times. Our other worry for Bjorn is that he will be lonely, the odd kid who makes strange movements. On the other side of that I hope that Bjorn is surrounded by a community that appreciates the many things he has to offer and enjoys his quirks, I hope he finds his place in the world and that it is a satisfying, warm, happy place. I sometimes can vividly picture this and it brings me comfort.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Katie: Ryan and I love to camp and get into the mountains. We are spontaneous and adventurous and wildly idealistic and this gets us into trouble with Bjorn. Who likes routine. We took him backpacking when I was pregnant with our son Axel and it was this arduous hike in and we couldn’t take his beloved, enormous blanket. Guess who just didn’t sleep until his ridiculous parents hiked him out of there at 4 am? This last summer he screamed in our tent in a campground to the point the people next to us packed up and left. It doesn’t sound that funny when I write it but its our new normal to be like, ho hum nothing to see here folks our kid is just freaking out in our tent because the portable sound machine makes a different sound, want a s’more?
Miggy: How can people best approach or respond to Bjorn and your family on the whole? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Katie: Bjorn is such a cool little person but it can be hard when people don’t look to his cues. He is not the hug-on-command kid and until recently I dreaded people’s comments at the check out line when he didn’t know how to peel the sticker they gave out. I feel really lucky because we have so many amazing people who meet Bjorn, and our family as a whole, where we are at and just take us for who we are. I wish that more people would be aware that less visible needs are still needs and that sometimes parents just need validation. If you are a friend or family member that means feeling comfortable being uncomfortable, not necessarily rushing to say that everything is fine, and if you are a stranger that means picking up on cues and giving the benefit of the doubt. And keeping your mouth shut if you feel like you are going to say something about how there was this really weird kid you knew but he had brain surgery and his seizures stopped. Don’t talk about that.
photo credit: Heather Gray Photography
Miggy: What is the biggest lesson you’ve learned since becoming Bjorn’s mom?
Katie: Bjorn has taught me patience for the totally unforeseeable future and he has taught me so much about love in this messy, chaotic, gorgeous new world we have found ourselves in.
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Yes! Loving amid a messy, chaotic and gorgeous life is an amazing realization and feat isn’t it? First I really love that despite the added difficulty of having a child who doesn’t do spontaneous, I’m really glad to hear that you guys still do the things you love. I think that’s important for parents no matter what, but can be especially hard, and therefore especially important, for special needs parents. I also love that while you haven’t found a diagnosis for him and that’s incredibly tough you have switched gears to becoming his advocate to ensure the highest quality of life possible. All kids should be so lucky. Thanks again for sharing your story and give your beautiful kiddo’s a hug from me.
As always, if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Have a fantastic weekend!
XO
Miggy
My heart always goes out to the families in your spotlight. As a former special needs mom, I can always relate to what they're going through. This particular story really caught my attention because of the seizures. They said he has yet to be diagnosed, but I'm curious if they've looked into any Mitochondrial disorders? Two of my kids were diagnosed with mito disease…both had seizures as symptoms. Coming from the PNW I would think they were in contact with Seattle Children's and the mito specialist at some point, but if not, I think it could be helpful to look into it. Praying they find answers.
Hi Amber! Thank you so much for your thoughtfulness! Bjorn has been seen by Seattle Children's and mito was ruled out in the earlier testing. I so appreciate you suggesting something, my hope is someone sees his symptoms and thinks it's familiar and that it will give us a fresh idea. I hope you have a wonderful weekend!!!
Katie I am sure Bjorn has had a multimillion dollar work up especially if you have been to Seattle Children's but it sure sounds like Dravet syndrome. I assume that has been ruled out.
Hi Anonymous! Thank you so much for commenting. Dravet was considered at the beginning and ruled out. And yes, the multi million dollar work up is sadly very accurate ha! We've been waiting for genetic testing to progress a bit more and then will do another round. Again, thank you so much for contributing an idea!