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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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Diagnosis Day: Every Story Has a Beginning
I don’t know that the English language has developed the words to describe quite how I felt the moment I heard the official diagnoses for my twins. Shock, sadness, grief, anger, resentment, panic, loss, terror. None of those seemed to really convey the gravity of my feelings. What I do know is that I was sitting at home, working at my new job, minding my own business when life as I knew it changed. Twin A was at school and called to let me know that she was waiting with a bunch of teachers and her sister for an ambulance. Twin B had a seizure and they were taking her…
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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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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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Rare Love and Marriage
If you, too, have a rare child (or two) I don’t need to tell you that your whole life changes on your diagnosis day. Something like a rare diagnosis will have a profound effect on the trajectory of your life, and every aspect of it. As you might imagine, the stress and chaos of a diagnosis and getting a handle on a care team is enough to strain even the healthiest of marriages. There are plenty of times I would remind myself that while I may have been frustrated with my husband’s actions or responses to my frustration, he surely felt the same. We are vastly different people with different…
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Happy Birthday to My Beautiful Girls!
This is it. It’s the big one! My girls are officially adults! So, if anyone needs me today, I’ll be in my closet crying into a bucket of nacho cheese. These girls have been pushed to the limit. They have been through things that would break so many. And they have handled it all with such grace and resilience that I don’t even know how to express the pride I feel from being their mom. It always annoys me slightly when people say they don’t know how the girls have dealt with all this and kept it together. That’s because I know. They are eternal optimists with just a splash…
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What Good is it to be Mad at The Wind?
People often ask me how I keep going. They ask me how I can smile and laugh. They wonder how I can possibly make plans for the future and count on better days and moments ahead in the face of so much grief. Some days it is harder than others. Some days I realize I am waiting for three calls from two different facilities for two different kids and it becomes overwhelming. The best way I can explain all of this rare disease parenting is just shy of unbearable. It really is. My life really is. On those days, I often bounce back and forth between shock, helplessness, and anger.…
Sharing Rare Mom Truths One Post At A Time
