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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Wonder Woman

Over the course of this blog I have spent significant time noting how Adelaide is different, commenting on what she is not able to do and the dreams I mourn that I once had for her. I could easily write a post about our last year in review, which would inevitably make me acknowledge all of the skills she’s lost and trials she’s faced. Honestly, that sounds fairly miserable. So, instead, I would like to take a moment to focus on all the amazing things that Adelaide is still able to do. The secret ways she communicates with us and all of the wonderful qualities that make Miss A the strongest person I know because she truly is a Wonder Woman.

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Dear Santa,

What kind of gift do you get a child that is immobile, non-verbal, and lately responds to very little? Adelaide doesn't know its Christmas, of course, so does it really matter? Well, it doesn’t to her but it does to her big brother and he is VERY observant. If he has more gifts than her he will notice and comment and make us feel like horrible parents for not gifting equally. I’m her mother and can barely figure out what to get her, goodness help our family! Realizing that I am likely not the only person in this predicament, I decided to put together some gift ideas and gift resources for special needs children. Yes, this list is a little late (happy belated Channukah!) and no, the reason for the season is not gifts, but they do pose their own obstacles which deserve addressing. Hopefully, this post helps. Happy holidays!

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Kelly Cervantes Comments
How's Adelaide doing?

Three words, grammatically so simple, but connotatively so complicated. I mean, its weird, right, if someone doesn’t ask that when they see me? Don’t get me wrong, I am beyond grateful for everyone’s care and concern but the question is daunting. So much goes into calculating the answer: how much does the person really want to know? How well do they know the situation? What was the last update they received? What can I emotionally handle in response? And most importantly, how much time do we have? 

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'Til the Calm Comes

These photos were taken one month apart, before and after Adelaide's infantile spasms diagnosis. I’ll never forget sitting on the bed in my Air BnB, hearing the doctor utter the words “infantile spasms” for the first time through the phone. I was in Chicago, 800 miles away from my family in New Jersey, tasked with finding our families new home as we prepped to move halfway across the country for Hamilton. I’ll never forget walking into Adelaide’s hospital room having arrived straight from Newark airport and seeing a shadow of the daughter I had left behind. I’ll never forget the month we spent in the hospital trying to gain control of her chaotic brain waves. Today is the last day of Epilepsy Awareness Month and tomorrow kicks off Infantile Spasms Awareness Week. I don't discuss IS often, as we prefer to focus on epilepsy as a whole, but today I dive deep. 

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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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