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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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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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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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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
