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Medically Complex Travel: The Good, The Bad, The Ugly
We did it, friends! All 5 of us packed our bags, got on a plane and spent 10 glorious days on a family vacation. We went to the beach and then to Disney World and had a great time, despite my worry. So let’s break it down. How did we do? How did we manage? What did we learn? Meds make travel complex It really wasn’t so complicated after all. Well, once I realized that relying on my cognitively delayed daughter with memory lapses may or may not be able to count out ALL of her own meds properly and wound up racing down to the hospital pharmacy to intercept…
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Writing While Raising Medically Complex Kids
I have been taking a lot of writing breaks in the last eight months. It wasn’t entirely an accident. I’ve been writing to process my life since I was a little kid. Stories and essays helped me in ways talking never did. I’ve always identified as a writer. Getting my first piece published in 2017 only confirmed what I felt was true to my soul. Writing helps. Until it doesn’t. We have been dealing with an enormous amount of uncertainty in recent months at my house. Will Twin A have surgery? Won’t she? Will Twin B’s med change work? Will we need to change again? Was that a seizure? Is…
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We Weren’t Meant to Live This Way
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Travel Made Complicated
I can’t even watch the news anymore. No, not for the reasons you’re thinking. Every weekend I come downstairs in the morning to find my husband watching the local news. I get my coffee and join him on the couch. Often scrolling my Instagram feed or checking emails as that first hit of caffeine jolts me awake and I am able to form full thoughts and sentences for the day. This past weekend was no different. I joined my husband on the couch and listened as they chatted about the weather (crazy), some festival downtown (Scarcely attended. See: weather), and a pretty serious accident involving some bicyclists only a few…
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Parenting Medically Complex Kids Takes a Village
This life is NOT for the faint of heart. It is more and more heartbreaking with each new specialist, each new symptom, each new diagnosis. They say it takes a village. What if there is no village that can really lighten this load? What if no village capable of this exists on Earth? Parenting a couple of medically complex kids feel like that. Having twins in the NICU didn’t prepare me for this life. An ailing parent with multiple medical complications for whom I was the primary caregiver for several years couldn’t have prepared me for this life. The fact is that nothing can prepare anyone for this life of…
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Ready, Set, Grow up!
It finally happened, friends! The girls started college. They’re growing up. (I’m not crying! You’re crying!) They are still at home and going to community college while we all figure out this life. They are both working quite a bit. That means this mama is worrying quite a bit. I don’t have to tell you (or maybe I do) that sleep deprivation is a big time no-no for most epilepsy patients and I worry these girls are over doing it and not taking care of themselves as they should be. And they’re 18 so I can’t tell them anything. They may have a better understanding of the fine line between…
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Diagnosis Anniversaries Aren’t for Celebrating, Are They?
I’ve held this heaviness in my heart over the last few days. Work has been keeping me busy over at ANGEL AID as we are knee deep in our biggest fundraiser of the year for our rare caregivers. I couldn’t be happier to contribute to the programs and efforts to raise funds and awareness for these women (and men) who have become my people in recent months. Also, it’s a great, much-needed distraction. But this heaviness. Oh, this heaviness. It’s weighing my heart and soul down, y’all. It’s not lost on me that this heaviness is always there now. For exactly two years, it is always there, bubbling beneath the…
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We Weren’t Meant to Live This Way
I tell people that every single thing about every single aspect of my life changed the day my twins were diagnosed. I say that they gained a diagnosis and my soul gained somewhere in the neighborhood of 100 pounds. If I’m being honest, it’s probably more than that. I can feel the weight of that day. Every moment of every day, I can feel it. As I write this, many of my peers, my people, my village are at a conference in San Diego. They are all meeting in person, exchanging hugs and high fives. They’re celebrating small wins and commiserating in setbacks. They all understand the grief we are…
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Writing While Raising Medically Complex Kids
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Brain Surgery Day: Take Two
Pediatric brain surgery just doesn’t seem real. It doesn’t seem like it should be a real thing. Pediatric brain surgery x 2?!? Wait-what? Who even has 2 kids that need the same brain surgery inside of 3 months?! It’s just too much. Okay, not really. But it’s seriously just shy of unbearable. It’s incomprehensible to anyone who hasn’t been there. If I’m being honest, I hope you never find yourself there. Any of you. We had Twin B in Physical, Speech, and Occupational Therapy following her surgery when we finally got the approval for her identical twin to have her MRI. Everyone assured us that it was important but not…
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Brain Surgery Day: Take One
Pediatric brain surgery. How do you actually even comprehend that? As a parent, how do you even begin to process it? Exactly two months after Diagnosis Day, we were heading into brain surgery at Barrow Neurological Institute in Phoenix, Arizona. We went into prep 4 days before and spent the day doing scans and labs. We met with the anesthesiologist and I spoke with the nurses who would mostly be there the day of and got the lay of the land. The night before surgery I was nervous, y’all. I barely slept and I KNOW she couldn’t either. I packed and re-packed. I overpacked and overpacked some more. You would…
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It’s a Rare Graduation!
Look out world! These girls are comin in hot! Today my sweet ladies graduate from high school and I’m emotional, y’all. 12 hours from now this chapter will close for good. No more meet the teacher nights. No more running to this practice and that event. This brings on another set of challenges for us, like all rare parents. What happens in college? My girls went to the school nurse yesterday and picked up their rescue medications. The principal emailed me both of their 504 plans and copies of their seizure plan so I could hand them off to them for their college to keep on file. They don’t want…
Sharing Rare Mom Truths One Post At A Time
