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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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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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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.…
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Happy Brainaversary, Twin A
So today is a big important day for us. We have made the anniversary of my twins’ craniotomy surgeries into a big-time holiday around here. To be completely honest, the Brainaversary is at least as big of a deal as a birthday is nowadays. I mean, we get a cake and presents, buy balloons, and do a fun activity with my favorite patient of the day. It’s a very big deal here. And we get to do it twice! As a twin family, we’re used to doing most things twice around here, but not 3 months apart. In a way, it’s kind of a silver lining that my girls each…
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Where do I Belong?
I often wonder where I belong in this life. What right do I have to call myself a parent of children with rare diseases or medically complex kiddos? So many parents are facing unimaginable impending grief and sadness. So many children are on breathing machines, in wheelchairs, are tube-fed, have so much equipment and so many needs that 24 nursing is required. What right do I have to complain? If you’re nodding your head in camaraderie with me now, I invite you to look at it in a different light. Would you roll your eyes at a parent of a child who suffered from ADHD or migraines to buck up?…
Sharing Rare Mom Truths One Post At A Time
