Posts tagged patient advocacy
All my children

This was a challenging post write and may be a tough one to read. I ask that you please read in full and that you keep an open mind. With Mothers Day around the corner we celebrate those that gave us life and enjoy being celebrated by our own children. But we are also reminded of those who have lost their mothers, or who have lost children, or pregnancies, or who wanted to be mothers but it wasn’t meant to be. I am the mother of three children, although, I only ever met two of them. Miguel and I made an impossible decision nearly five yers ago and while I’ve never kept baby Elvis a secret, I realize that now more than I ever, my experience - especially with the perspective of a special needs mother - needs to be shared.

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Mama bear

This stunning photo was taken by our dear friend and photographer, Megan Allen, as part of "a day in the life of Adelaide" photo series she shot for us last month. From the meds, to the syringes they're in, to our nurse delivering them, we rely on our insurance to cover all you see in this photo so that we can give Adelaide, and our family, the best quality of life possible. What would a full repeal of the ACA actually mean for our family? For millions of others? Please read this week's blog to understand why this mama bear is roaring and has no intention of stopping.

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That hospital life

While chilling at the hospital with Adelaide for three days last week, I was struck by how comfortable we have become during these stays. Now, to be clear, being home is always better. Adelaide is more alert at home, I despise our family being separated and there is a special place in hell for hospital showers. But like anything you just get used to it all. Dare I say it, but there are even some aspects that I, <gasp>, enjoy.

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Seizing Life

Happy new year! Much like Adelaide’s birthday, a new year brings a mixed bag of feelings. Sure, I try and remain hopeful that this will be the year of a medical breakthrough for her but also just as prominent is the honest understanding that significant time with a special needs kiddo is going to come with serious challenges, stress and heartbreak. At times like this it is also important to remind myself that I can’t tie my personal feelings of success, productivity or fulfillment to Adelaide’s health. Which means my barometer for success and satisfaction has to come from somewhere else in my life. So, when CURE came to me last fall asking if I would host a podcast they were launching it did not take much consideration before I responded with a resounding, “YES!”

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Advocating for advocacy, pt 1

Happy week 2 of epilepsy awareness month! Earlier this week three members of the Cervantes fam traveled West to participate in Epilepsy Awareness Day at Disneyland.After Adelaide’s week in the hospital and increased breathing challenges, putting her on an airplane just didn’t make sense. So, we made the painfully difficult decision to leave Adelaide at home.

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